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overanalyzingelswordiswhatido · 5 years ago

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Master Road story was a fuckin trip

I'm on mobile so I cant do a read more but there are spoilers in this so... Read at your own risk I guess???

Gaia is pure and such a GOOD DAD. Laby is too pure for this world and always will be. I will personally physically fight anyone who is mean to me daughter. I'm glad that she got to learn that it's better to talk about her feelings than to not do so just to avoid a fight tbh cuz otherwise that would've been really sad. Also, I really do love Ara and Eun's relationship. Just the way Eun calls Ara an "overly righteous child" even while sounding soft and appreciative??? I love it.

Rosso is an angry boy. He has every right to be though after everything he's been through good lord. Also, I really liked Elesis's reasoning for not wanting him to go into the Demon Realm. I also did kind of like the fact that he and Lu didn't get along??? Like, she was really rude to him and he was rude back and then she tried to push all the blame onto him and thats fucked up but I feel like it would've really jarring for them to get along. Idk it just seemed natural for them to "get along" the way that they did. Also Ciel being "lightly" sassy is everything I needed in life.

I'm very curious about the elf Lincy says she saw. My first thought was Lua but I'm not 100% on that. It's quite nice to finally get an explanation for what happened to Rena back in Feita too because that was fuckin weird. If I remember correctly she mentioned someone having beautiful eyes or something..?? Idk but it was weird. Ventus walking back in the front door because he forgot he snuck Rena out was honestly so damn funny. Rose's part was also very nice. It was nice to see her get some spotlight tbh. I have a soft spot for her not gonna lie (it started since shes my younger sibling's main but I did come to really like her). I noticed in the comments of Rose's videos that people were confused as to why she was so calm, but I wasnt really. She did mention to Zero that she's known for a while. And considering how much time she's likely had to think about, she's likely accepted that there's very little she can do about it in her current situation. So she focuses on what's in front of her right now. She's a soldier. She has to focus on the things in front of her before she can worry about the things that aren't and she's trained to do exactly that. So I didn't find it particularly weird for her to be calm in that situation.

CHUNG HURT ME. I was honestly just shot in the heart when Chung said looking for his father was him being greedy. That whole thing sucked. Aisha was super sweet to him though and that was amazing to see. Aisha was so confident too. That was really nice to see. I'm curious about the Landar family secrets now. Also the Denif in the seal didn't have to get that fuckin deep. Like holy shit. Also, Ciel comparing Chung to a sad puppy in the rain was so cute. Ciel wasn't wrong but at least Chung has cheered up some now.

I didn't think I could hate Adrian more than I already do but mY GOD. He makes me want to throw up. I hate him so much. I'm super pissed. The stories he told Add and Eve were WAY too different too. Ngl I apologized to Eve out loud because her "father" is a disappointment. I am honestly worried about what Adrian's going to do with the data he collected on Add... I just. That whole part made my skin crawl. I hated it. It was super nice to see Add drag him through the dust and for Eve to tell him off though. Also, I have never been more proud of either of them in my entire life. They've both grown so much. Hearing Add talk to his mom was so sad and yet so nice at the same time. And when Eve talked about Elsword, Aisha, Rena, and Raven, it was honestly amazing. AND HERBAON IS FRIENDS WITH NONO I'm so glad. Nono isn't alone anymore and Herbaon has A FRIEND. Also, Eve is such a good big sister to Herbaon and you cannot change my mind. Tbh I feel like if Raven hadn't said "see you soon" Add could very well have made a very different choice. Raven is so good.

Speaking of Raven... RAVEN IS DYING???????????????????? I AM NOT OKAY??? I mean I cant say I'm surprised tbh but OUCH. And he knew this whole time too. Like damn. I highly doubt they'll actually kill off a playable character so I'm honestly hoping it'll result in some Raven and Eve bonding since she's realistically the only one that could help him with the situation he's in. I'm really hoping we get updates on Owen too since Elesis mentioned Velder nobles and then Raven started to ask. And typically something like that is used as foreshadowing and I would love some sweet Raven angst. It'll hurt but it'll be great. Also, Elsword not realizing his friends are his power was very fitting and honestly funny to me. I officially have a LOT of questions about Elsword. Though it's nice to know that he is in fact Rubenian. I haven't had enough time to mull everything over so rn I have a lot of questions and no answers. Also AIN HAS ANXIETY MY SON. Honestly, anxiety like that isn't anything I'd wish on most people but it makes a lot of sense for Ain to have it and I'm glad he got to know that nothing was wrong with him and that fearing change was completely normal. Hernia was so sweet and good in Ain's story. I especially liked when she mentioned that she wasn't a picky eater. Like it seems like such a small insignificant thing, but it pulled Ain out of his thoughts and his own head, which really did keep him from spiralling further. And I loved it.

All in all, the amount of character development and new information we got was good. Raven and Gaia both get dad of the year rewards because they're just such good dads (you WILL have to pry Eldad Raven from my cold dead hands). I kinda hope Adrian dies at some point because he's literally so awful but at the same time I don't want my Nasod children to be sad and unfortunately Adrian dying would make them sad. Anyway I'm proud of all of the El Search Party and the growing they've done. Still worried about some of them (*cough* Raven *cough*) but I was glad to see all of their individual stories touched on. I'll go more in depth on my thoughts of certain parts in other posts soon. This was mostly just a collection of my overall thoughts and like... initial impressions.

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secretwinnerpandasports · 5 years ago

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Prayag : Rainbow after a Storm; Journey with CDH

Today is 28th September 2020; my boy Prayag turns two years old. It took me two years and a lot of courage to tell you all about his life. It has been such a long journey, but a wonderful journey. Today I am here to share my experience with my son which will certainly be awareness and at least would be a hope to somebody. I am writing this in the hope that people in similar situation will know what to expect after reading and hopefully be able to save the life of a tiny one.

On 1st of February 2018, me and my husband Sankar, were happy with the news of the arrival of our second baby. Our elder one is a five years old baby girl. We were leading a normal pregnancy apart from the normal health issues like nausea and dizziness. I am working as a lecturer and I am having a work life balance. I had all my health reviews on time along with suggested scanning. I had my anomaly scan at five months, which is done to check the organ development of the baby. It was perfect and the scan suggested that my baby was healthy.

The 7th Aug 2018, I still remember each and every event on this day. My seven month scan was scheduled this day. I was happy, as there was nothing much to worry. We both went for the scan and we were really excited to see the baby in the scan. The place where I was having scanning was a reputed one and offered the best service. During the scan, the sonologist asked whether the last scan showed any anomalies. I said “No”. Then I heard him saying something to his assistant like, “Heart displaced, left CDH….and so on”. I did not understand anything, but had a sense of something bad. The scanning process was quite long than normal and we had to wait for the results. I was tensed till we got the results.

When I got the results, I immediately read it. It was written as “Left CDH, Heart Displaced, Liver in the chest cavity and more.” The words written in the paper shattered me completely. I immediately searched for ‘CDH’ in Google. What I read has shattered me completely. The baby is Left CDH (Congenital Diaphragmatic Hernia). The Heart is displaced and organs too. “Congenital diaphragmatic hernia (CDH) is a rare birth defect in which a hole in the diaphragm allows the intestines, stomach, liver and other abdominal organs to enter the chest, impairing normal lung development.”

My family consoled me saying we will discuss it with our Gynecologist and not to be pessimistic. The same day we managed to meet our Doctor who gave us a clear picture of the same, but still I was feeling helpless. As informed, the prognosis of this disease is poor. We were not left with any other option rather than to move ahead with this pregnancy. Our Doctor also informed us that specialist care is needed and our baby cannot be delivered in a normal hospital. As adviced by our Doctor we met the Neonatal Wing of Amrita Institute of Medical Sciences, Kochi. Dr. Naveen Viswanath of the pediatric Surgery Department of the hospital explained all the pros and cons of the surgery that has to be undergone immediately after the delivery. It was a ray of hope for us. As per their advice, we again went for a scanning for the confirmation. I prayed for everything to be a nightmare. The results came to same. Now only thing that was left to us is to wait till the baby mature to maximum so that his lungs may develop which would help him have more chance to survive. We had to consult the Gynecologist in AIMS as the baby could be delivered in this hospital itself, as we wanted the best NICU and specialist Doctors to save our baby.

By now, I was slowly trying to figure out the situation with the support of my parents and family. At the same time I was still working and was not able to reveal anything to anybody. I didn’t want anybody to know this. In the midst of all these, like a nightmare our state (Kerala) was badly affected by floods. All the roads to the hospital where we are supposed to have my delivery was closed and I am nine months pregnant. This added pressure to our situation because nothing would go as planned if we had to deliver our baby in any other hospital. But God has had different plans for us.

Due to the mental and physical pressure I lost weight by then which also affected the baby. On consultation the doctor suggested me to be healthy and happy so that it would also help the baby to develop. Ideal birth weight is also crucial. My days and nights passed reading stories about CDH babies. This helped me so much in instilling hope. Also I was equipped with my official duties. I tried to figure out cases from India, but only two three people wrote about this. Then I realized the importance of an awareness campaign for CDH.

Arrival of Prayag

The days passed and my C Section was planned on 28th September 2018. I had my elder one through a C Section. This time also C Section was planned as the baby needed to put on ventilation immediately to avoid complications. I clearly remember each and every day before the birth. I was admitted a week before the c section. My operation time was fixed by 12.00 pm. All the preparations were done that night itself. By morning I was waiting empty stomach for the operation. By 12 I was shifted to the operation theatre and everything started. I was given an anesthesia on the backbone. I don’t think I will ever get to forget those hours in my whole life. By 12.30 pm the baby was taken out and I heard it crying aloud and immediately it was shifted to ventilator and taken to the NICU. I started to have a sense of shivering by then, may be because of the local anesthesia or high temperature in labour room or may be because of my mental condition. It took an hour or more to complete the procedures and to shift me to post-operative ward. Everyone seemed to be tensed in the operation theatre. I was put on oxygen, hence I did not have an option to ask anybody about my baby, or whether it is a baby girl or boy or about the baby’s health. Finally a nurse in the post-operative ward informed me that it is baby boy and he is in the NICU. And then my family came to meet me and spoke to me about the baby and how is he shifted to NICU and all. But still it is depressing to see every mother in the NICU with a baby next to them when I could hardly see my baby’s face. I saw my baby for the first time exactly after 24 hours after delivery and then I had a hope that he is already a fighter, because most of the CDH babies does not make it till here.

Next Phase

Prayag was in the ventilator post-delivery. His surgery was postponed due to low blood pressure. Every day we would wait for the doctors to say whether his surgery is fixed. But the doctors said it is not possible with a weak blood pressure. We used visit the NICU and see our baby with lot of tubes and machines near him. We could only see a small patch of his forehead and chin and we would touch his arms and toes. The rest of his tiny body was covered completely. We return with a hope that everything would be fine. On October 1st 2018, I was discharged from the hospital but baby was still in the NICU. We were provided with rooms in the next building just beside the NICU so that we may be available on demand. On 4th Oct 2018, the surgery was scheduled but suddenly it was cancelled for low pulse rate. That day I could not resist myself. I lost hope and was completely traumatized. Finally on 5th Oct 2018, when I went to see him as usual, I was informed that his pulse rate is marginalized and normal now and is taking him to Operation Theatre. I was equally tensed and happy, tensed because I didn’t know anything about it and happy that he is in safe hands and I will get my baby back.

We waited for hours in front of the OT. He was shifted back to NICU and we could see him there. The Doctor informed us that it was a laparoscopic surgery and there is nothing to worry as Prayag’s condition was not as severe as scan revealed. There I sensed the power of Prayers. They also told us that all the organs were properly placed back and he will be perfect in days.

After surgery we could see him every day with changes. We were happy when the Dr. Lakshmi (Prayag’s NICU Doctor) informed us that his support could be removed, this medicine has been discontinued and so on. We spent a couple of days in the hospital when our baby slowly weaned off from oxygen support. On 23rd Oct 2018, Doctor informed us that our little fighter is perfectly fine and we can take him back home. I got to hold him in my hands for the first time on this day. Most mothers out there would know how it feels to hold your baby for the first time. I cannot describe what I felt holding him after waiting for a month after undergoing all these pain.

Back Home

Prayag was bought home on 25th Oct 2018 after having finished all the vaccinations and procedures. He was having low blood pressure and was adviced to give salt along with milk orally. Other than that no medicines were needed. Apart from “no visitors”, no other precautions were suggested. It took long time for me to adjust myself to the situations. I would stay awake all night to check whether my baby is okay. It was my habit at least for 8 months. We had regular reviews every month and the baby’s pressure and blood tests were examined. On the last checkup when he was one year old, our Pediatric Surgeon surprised us with news that Prayag is perfect on development and no more checkups are needed. We were on the top of the world.

We named him Prayag which means Rainbow after a storm. He is really a rainbow after a thunderstorm. Today, when he is two years old, I am proud to say that my little boy is truly a Fighter. Thank you so much to all the Doctors and the support system in AIMS, Kochi, Kerala. We had family, friends and lot of people to support us mentally, physically and financially all throughout the journey. I cannot thank them enough as it means a lot. I am not a good writer but I tried to narrate my experience. Its not an easy journey but the hardships are worth enough. I have had sleepless nights and tiring days but when my Prayag smiles at me, I feel so contented.

I am writing this now because I have searched for experiences all through the internet to have a hope, to have ray of light. I didn’t have anybody to share my doubts. Now for this cause, I am trying to initiate a CDH awareness Campaign in India. We are part of a group to have awareness campaigns and make people aware of this disease, its diagnosis, and treatment. I share my experience because there is nothing impossible.

I am grateful for reading my experience. Do share, please, as this will support others. My aim is achieved if my experience will benefit others.

Email: [email protected]

References:

1. https://fetus.ucsf.edu/cdh

2. http://www.cherubs-cdh.org/

3. http://www.amritahospitals.org/SpecialityDepartments/Neonatolog

Note of Thanks:

Dr. Beena Kumari, Gyneacologist, City Hospital Ernakulam

Dr. Perraju Bendapudi , Department of Neonatology, AIMS, Kochi.

Dr. Naveen Vishwanath, Department of Peadiatric Surgery, AIMS, Kochi

Dr. Lakshmi S Nair, Department of Neonatology, AIMS, Kochi

#cdh #cherubs #survivor #prayag #CDH SURVIVAL STORY #cdhbaby #cdhsurvivor #writers on tumblr #writing inspiration

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spine-buster · 6 years ago

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Alone, Together | Chapter 5 | Morgan Rielly

A/N: Here we are, 4600 words later, because I don’t fucking know how to write succinctly. Guest appearances by Auston Matthews and Frederik Andersen!

Morgan was hardly ever anxious. He was usually cool, calm, and collected about most things, even on the ice. Bad or missed calls by the referees,

He was officially nervous.

It all started when Auston Matthews came over to his place. Auston was in town for a few charity events he agreed to do, and on an off-day in-between, he went over to Morgan’s house to play video games and catch up. Though they had spoken regularly, they had barely seen each other since the end of the season – just the occasional FaceTime. It was good to be together again; good to be playing video games and shooting the shit.

Then Auston got hungry and, well, everything went downhill.

“Dude, I’m starving,” Auston said, putting down his controller on the coffee table in front of him and springing up from his seat on the couch. “You got anything in the fridge?”

“There’s some chips in the top right cupboard,” Morgan said, continuing to play the game. He always had chips on hand. It was his trademark.

“Any beers?”

“Uh…” Morgan honestly couldn’t remember, but at the same time, he was extremely close to getting his targeted kill count so he wasn’t exactly paying the most attention. “I can’t remember. Just fuckin’ check. Go wild.”

Morgan heard the crinkle of the chip bag and the fridge open, Austin moving some stuff around. “Um, excuse me,” Auston said. “What the fuck is going on here?”

“What the fuck are you talking about?”

“Since when the fuck do you use Tupperware?” Auston questioned, turning to look at Morgan. “You never use your Tupperware.”

“Matts, what the fuck?” Morgan digressed, pausing the game to look at his friend. In Auston’s hand was the Tupperware Bee gave to Morgan for the leftovers of the fish tacos. Fuck fuck fuck fuck fuck. “I use Tupperware.”

“No you don’t,” Auston said, looking directly at him. “You made me buy it with you, and now we both never use it. Why are you…” his thoughts trailed off as he connected dots in his head. His eyes bulged out of his head when he came to his realization, his mouth even dropping a bit. “Bro.”

“What?”

“Who is she?”

Fuck fuck fuck fuck fuck. “What are you talking about?”

“Who’s the girl?”

“There’s no girl, Matts,” Morgan gulped.

“Bullshit!” Auston yelled. “You never use the Tupperware we bought, and now all of the sudden it’s being used in your fr…THIS ISN’T EVEN OUR TUPPERWARE!” he screamed even louder, feeling completely betrayed. “Ours has red lids and this one is BLUE! Is this her Tupperware?! Oh my GOD!”

“Matts, calm the fuck down, for fuck sakes!”

“NO! I can’t calm down! Do you know what stage in a relationship you have to be to bring someone else’s Tupperware home with you?!”

“Seriously, Matts, you’re gonna have a hernia over Tupperware.”

“Stop deflecting! Who is she? What’s her name? Why didn’t you tell me about her?!”

“Matts, please,” Morgan rolled his eyes, trying to brush him off.

“Nah nah nah nah, I will shut this game off if I have to. Either you tell me what the fuck is going on or I’m stealing your phone when you nap and finding it out for myself.”

Morgan looked Auston dead in the eye. He knew Auston wasn’t bluffing. Auston would go so far as to spike Morgan’s drink in order to get to the bottom of this is if he didn’t fess up. “We met at a restaurant,” he practically mumbled.

Morgan couldn’t describe what Auston did next. It was a sort of fist-pump into the air, but he was still holding on to the Tupperware container, so it looked like he was celebrating the Tupperware. He practically threw it back into the fridge and slammed the door before running and plopping himself back onto the couch, forgetting the chips altogether. Morgan rolled his eyes. “You are honestly the fucking worst, Matts.”

“When am I gonna meet her?”

“Never if you keep this up,” Morgan answered quickly.

Auston convinced Morgan to meet Briony. Morgan prayed to every god imaginable that Auston wouldn’t embarrass him, or more important, embarrass Briony. Later, when Morgan met up with Freddie, he begged Freddie to join them. Freddie would provide some decorum at least. It wouldn’t turn into a complete shit show.

Freddie made a point in asking why, after only a month, Morgan didn’t put up more of a fight in denying Auston in meeting Briony. Freddie understood how private Morgan was. He understood how much Morgan liked his privacy, despite being a Toronto Maple Leaf. He knew how much Morgan liked to be alone. Everybody on the team commented on it. Babcock commented on it. The team doctors and physiotherapists commented on it. Even the equipment guys commented on it. And now Morgan had agreed to let Briony meet Auston, the most recognizable Leaf on the team…when he could have just said no?

‘But I like her’ Morgan had answered. ‘I mean, she’s going to have to meet everyone eventually, right? Especially if this becomes serious.’

‘Usually people are honest and tell the other what they and their friends actually do for a living before getting a girl to meet them’ Freddie called him out. Morgan couldn’t win because he knew Freddie was right. But he made Freddie promise he wouldn’t say anything to Bee. He agreed reluctantly, only because Morgan was a really good friend.

Were they moving too fast? Morgan knew people who moved faster…much faster. But were they? It was a legitimate question. It was just over a month since they had first met. They’d slept together once after a few dates. He hadn’t met Angie, Bee’s “person…you know, like in Grey’s Anatomy? She’s my person” because she was currently in Kingston with her boyfriend Mason. This would obviously be the first night she would be meeting any of Morgan’s friends. He thought the pace was fine.

Okay, maybe he rationalized it because he really liked her.

Bee looked at herself in the mirror once again, the luxurious bathroom of the Four Seasons Hotel in Toronto providing good enough lightning that, for a second, she thought she looked half-decent. She had on her work clothes – a pair of cropped, tailored pants, a flowy heart printed top, flats instead of her usual Tom’s shoes – and she couldn’t help but feel a little bit self-conscious about it all. When Morgan said he had friends visiting in the city and they wanted to meet her, she readily agreed, thinking it would be something small at his place. When he later told her they were meeting up at dbar at the Four Seasons Hotel in Yorkville…well, that’s when the nerves started to hit.

She had agreed to meet Morgan and his friends at dbar, since they were all apparently coming from work and she was grading the last of the exams in the solitude of her apartment. The fact that she was even going out during Labour Day Weekend was new for her. She knew everybody in the city would be out tonight. She didn’t like to go out on these types of nights.

Angie would always make fun of Bee for how much she liked being alone. Bee guessed it was a quirk she had, something she developed while growing up. When Bee was old enough to realize that her mother was an alcoholic, she would escape to her room (when she had her own room) and do anything to distract herself, sometimes even repeatedly doing her homework over and over again so she wouldn’t have to face her mother. When she was old enough to leave the house, she would – she’d take a walk around the neighbourhood or sit aimlessly in the local park while her mom binged alone or with “friends”, preferring to be alone rather than witness her mother succumb to the alcohol.

It really solidified itself when she finally turned 16, when she won legal emancipation from her mother. If she was going to do this – life – all on her own, then she needed to be focused, with no distractions. And if she was going to make it, she needed to work hard. And work hard was what she did. Alone. Nobody to support her, nobody to cheer her on, nobody to guide her. She did it all by herself. Alone.

Now Bee had to begin reconciling the fact that she also liked being with Morgan. That she was willing to go out in order to be with him; that she was willing to go to places that made her slightly uncomfortable if it meant she could have fun with him. It was a weird sensation, walking both sides of the feeling of wanting to be alone but wanting to be with someone else. She didn’t know how to justify it – all she knew was that she would continue to.

When she exited the washroom of the Four Seasons and walked around the building to wait in the lobby of the bar, she checked her phone again to see if Morgan had texted her. He hadn’t. She settled into the plush bench near the hostess, pretending to be on her phone. She wasn’t going to dare approach her. The hostess would probably laugh her out of the entire Yorkville area.

“Excuse me, are you Briony?”

Bee’s body stiffened as she looked up from her phone slowly. She saw a man – a very ginger, very tall, very big man – staring down at her, a soft smile on his face. He was dressed smartly: a pressed pair of slacks with desert boots, an unbuttoned collared shirt, a stylish sport jacket that fit impeccably. He was completely colour co-ordinated. Who was this man and how did he know her name? “Uh…yes?” she squeaked out, still trying to take all of him in.

“I’m Frederik. I’m one of Morgan’s friends.”

“Oh!” she exclaimed, jolting up from her seat immediately. “Oh my God, I’m so sorry. Morgan didn’t tell me your names or what you look like and I had no idea who I would have to look for and --”

“It’s okay,” he laughed, extending his hand for her to shake. His hands were massive. They were like mittens. She was pretty sure they could wrap around her entire head. She was also pretty sure he had a least a foot on her height wise. Where the fuck did this guy come from? “Morgan and Auston will be here soon. Auston said they just gave Morgan’s car to the valet.”

“So Auston is the other guy’s name?” Bee clarified. Frederik nodded his head. “And you guys all work together, right? That’s how you know each other.”

“Exactly.”

“How long have you worked in the sports industry?” Bee asked, trying to make small talk.

“The sports industry?” Frederik chuckled slightly. “I’ve only been here since 2016.” He nodded his head to motion for Bee to look behind her, and when she did, she saw Morgan making his way through the door, his typical slacks and button down t-shirt on. She was starting to feel overdressed. His companion, who she could only assume was ‘Auston’ walked in with a beanie and what could only be described as extremely-expensive-and-tailored-but-still track pants. Track pants. Bee felt like she was in the twilight zone. Did Auston not know where he was going? Were they going to be denied entry now?

Morgan made a beeline to her, enveloping her in a hug. Auston looked on with a bemused look on his face. “So you’re Bee,” he said once she had turned towards him.

He, too, had at least a foot of height on her. She wondered if they planted themselves in manure every night to grow. She’d heard that saying once and thought it was the most ridiculous thing ever, but seeing the sizes of Frederik and Auston – now she wasn’t so sure. “I’m Bee,” she nodded her head. “Frederik tells me your name is Auston.”

“So it is,” he smiled, shaking her hand. “Morgan’s told me so much about you.”

Bee stiffened at the words. “Good things, I hope.”

“He’s mentioned how good your fish tacos were once or twice,” Auston winked at Morgan, who looked like he was going to stab Auston right then and there. “Good on you for getting this guy to go out, by the way. Usually he just likes to be alone. Have you ever been to dbar before?”

“No.”

“You’re in for a treat, Bee. It’s one of the best bars in the city.”

As they made their way towards the hostess Bee earlier tried to ignore as much as possible, she watched as Morgan tried to discreetly elbow Auston and mouth to him ‘Behave’. “Table for four please, under Auston Matthews.”

“Of course,” the woman smiled, clicking a few times on her computer screen. “Welcome back to Toronto, Mr. Matthews,” she nodded, then turning her attention to Morgan and Frederik. “Mr. Rielly. Mr. Andersen. Did you all have a good summer?”

Bee gulped. What was going on? How did she know who Auston was automatically? How did she know Morgan? Frederik? Did they really come here that often? Could they really afford to come here that often? What the hell did she get herself into?

“The best, doll,” Auston smiled, the first to follow her into the restaurant.

They were seated much like she and Morgan were at Cibo – in a booth in a back corner where nobody could really see them unless they specifically walked that way through the restaurant. Morgan sat on the same side as her in the booth, immediately grabbing her hand underneath the table and caressing it tenderly. Frederik and Auston shuffled into the other side. The waiter that attended to them asked if they all wanted their usual, which they all did, which made it awkward for Bee because she was still trying to get over how fucking expensive the cocktails were so she had to choose on a whim.

“So Morgan tells me you’re getting your Master’s,” Frederik said in his soothing voice, and it was only then that Bee realized he had an accent. “Where are you studying?”

“I’m at U of T. I’m getting my Master’s in Financial Economics,” she explained.

“Where’d you meet Mo?” Auston piped up.

She looked over at Morgan quickly. “He sent a drink to my table in a restaurant.”

“He what?!”

“I did not!” Morgan denied emphatically. “How many times…I did not send a drink to your table! You got pranked!”

“You’re a lot smoother than I thought,” Auston commented. “In all the years I’ve known you, you would have never done something like that.” Auston turned his attention to Bee before adding, “He must’ve thought you were really cute.”

Bee couldn’t help but blush. She thought the last word anybody would use to describe her would be cute. “So how long have you known Morgan, then?”

“Well I’ve been in the Toronto sports industry since 2016,” he smiled, glancing over at Morgan quickly. “Mo became one of my best buddies. Showed me around the city, took me to all the good places to eat. He totally became the dad of the group.”

“The group? So there’s more of you?” Bee asked innocently.

“There is,” Auston nodded his head. “You’ll meet us all in due time.”

Bee’s nerves quickly dissipated the more she got talking with Auston and Frederik. She learned that Auston was originally from Arizona and that Frederik came all the way from Denmark. Even Morgan relaxed the more everybody got talking, his stiffness making way for more relaxed body language. They sat and talked for what seemed like hours. The one time Bee looked down at her watch – 11:15pm – told her that they did talk for hours.

Bee was able to discern a few things about Auston and Frederik during her time with them. Frederik was definitely more sophisticated (hello colour co-ordinated outfit), a lot calmer than Auston, and seemed to genuinely listen to what Bee was saying. She appreciated his soft smile and the way he would roll his eyes at Auston. Auston was definitely the playboy. He seemed cocky, fun, and confident – definitely the guy you would want to show you a fun night out in Toronto – but still humble enough to know when to apologize, to say please and thank you, and to leave a very generous tip to the waiter after he picked up the exorbitant bill.

As they made their way out of dbar, Morgan’s arm draped around her waist, she couldn’t help but notice the stares from other patrons. She wondered if the same stares happened when they had made their way into dbar. Stares made her self-conscious. Stares made her feel like she wasn’t supposed to be there; that she didn’t belong in such a swanky, upscale, expensive place. Stares like the ones she was seeing just made her want to be alone. There was one part of her fighting to say she had the right to be there just like anyone else; but the other part of her just wanted to curl up into a ball.

Right at the moment they were going to walk out, a man approached them with a giant smile on his face. Judging by the way he was dressed, Bee assumed he was the manager or someone important to the bar. “Matthews! Rielly! Andersen! How are you guys?” he asked loudly.

“Hey Joe,” Auston smiled, shaking his hand politely. “Good to see you, man. It’s been a while.”

Joe moved on to Frederik and Morgan before focusing his attention back to Auston. “You guys just heading out? Was everything good?”

“Great as always,” Frederik offered politely.

“It’s so good to see you guys again. You make sure all the other guys know they’re welcome. We’re gonna take good care of you guys this season.”

“You always do,” Morgan offered.

“Let’s get another one for the books,” Joe said, quickly taking his phone out of the pocket in his suit jacket and handing it to Bee. “Do you mind?”

Bee was taken aback for a quick moment, looking at Auston – who was still smiling – at Fred – who was pursing his lips together, trying not to look at her – and at Morgan – who looked so anxious it was as if he would throw up on cue. Why did he want a picture with them? Why did he…why did he want a picture with them? “Yeah, of course.”

They posed quickly and she took the picture, Joe the only person smiling from ear to ear. Auston and Frederik were smiling politely but she didn’t think whatever was going on on Morgan’s face constituted as a smile. She gave the phone back to the man quickly. “D’you guys mind if I tag you?” he askd the boys.

“Go right ahead,” Auston said on behalf of the group. “We’ll see you again sometime soon.”

Bee stayed silent as they waited for valet to bring Morgan’s car around. Frederik was on his phone, typing away on the Uber app. Bee kept looking at Morgan, who seemed to be avoiding eye contact. She wanted to ask what that was about, but she didn’t want to ask in front of Auston and Frederik. There were a million different thoughts running through her head, and she didn’t know which one to verbalize.

“Am I…I mean, do you mind if I get a ride home?” she asked quietly.

Morgan looked at her as if she was crazy. He squeezed her hand. “Of course you’re getting a ride home. God Bee, you’re something else.”

“I didn’t want to make an assumption.”

“I’d drive you to Vancouver right now if you asked me to,” he said quickly, and Bee knew he meant it.

“Mo-daddy, you gonna drive me home?” Auston chuckled, the over-priced alcohol clearly getting the better of him.

“No. We’re going to take an Uber,” Fred answered for him.

“But Riles promised he’d drive me home!” Auston whined.

“Auston, we are taking an Uber,” Fred said definitively. He looked at Morgan before looking at Bee. “It was nice to meet you Briony.”

“It was nice to meet you too, Frederik,” she said politely, letting go of Morgan’s hand so she could hug him. “Get home safe.” She turned to Auston who had given up on his fight, though valet was pulling up with Morgan’s car. “It was nice to meet you, Auston.”

“I’m sure I’ll be seeing a lot of you,” Auston said, his filter apparently gone as he hugged her. “Mo will eat anything you put in front of him, including an entire ice cream tub if you let him.”

“MATTS!” Morgan yelled.

“See ya!” Auston waved sarcastically, running away to hide behind Frederik. Bee climbed into the passenger’s seat of Morgan’s car, watching Auston and Frederik as he drive away.

Bee was silent as Morgan began winding through the streets of Yorkville, eventually finding his way to Bloor Street. It was the first time she had been in his car, and she noticed the Porsche logo on his steering wheel. She took a deep breath in. Okay, so maybe they all made good money. Great money. Maybe they made enough disposable income that they could go to places like dbar regularly and get to know the manager. Maybe they all had really good jobs and were able to go out on the town a lot. Maybe they could all expense it to a company account. And if there was a group, like Auston said, maybe there were a lot of them. All going out on the town. All expensing their nights to a company account.

But they why would that guy want a picture with them?

She was so deep in thought that she didn’t even notice Morgan had already arrived at her apartment. Bloor Street at 11:30 at night wasn’t as busy as Bloor Street during the day, she thought.

“Briony…” Morgan’s soft voice interrupted her thoughts.

“Why’d that guy want a picture with you guys?” she asked, her voice a whisper.

Morgan gulped. There were butterflies in his stomach, knowing that everything would change now. The night had been perfect up until that point. It was now or never. “Because uh…we all play for the Toronto Maple Leafs.”

He looked over at her quickly and couldn’t discern the look on her face. “Like the hockey team?” she asked, as if there was another professional team in Toronto called the Maple Leafs.

“Yeah…like the hockey team.”

Bee nodded her head slowly, looking away from him momentarily. She mulled over the new information in her mind for a few moments. “So you, Auston, and Frederik…are you guys, like…good?”

Morgan couldn’t help but chuckle slightly. “Some people say so,” he answered her question as diplomatically as possible. So it was adamantly clear she had no clue about hockey. She had no idea who Auston Matthews was. No idea about “Steady Freddie”. Did he tell her she just had drinks with the franchise centre? A franchise centre who had girls practically fighting their way to get his attention? “So you’re telling me you’re the only person in Toronto who doesn’t watch hockey? Didn’t watch hockey growing up?” he tried to inject some humour, hoping it would diffuse the situation.

“Watching hockey requires having owned a TV growing up,” she said curtly, reminding him of the poverty she grew up in.

This was going to be a harder conversation than he imagined it would be. He was an idiot for thinking this would go smoothly. “Briony --”

“So when you told me you worked in sports, what you really meant is that you’re a professional athlete.”

“Yes.”

“Why didn’t you just tell me that?” she asked, trying not to sound angry. “I wouldn’t have minded. Better finding out straight from you than from someone demanding a picture with you or an autograph or something.”

“You wouldn’t have minded?” Morgan repeated.

“No!” she exclaimed. “Morgan, you’re still a person. You’re a person before you’re a professional athlete,” she stressed. “You’re…this whole time…this whole time…it’s almost been a month, Morgan. How did you even hide it for so long?”

Morgan shrugged his shoulders. “Luck, I guess.”

“The people at the restaurant where we met – they didn’t know who you were?” she asked. He shook his head. That one was actually luck. “And Cibo – nobody knew there?”

“The guy who led us to our table, he knew. He always handles, like, VIP bookings or people.”

“How did he know we were there?”

“When you were in the washroom, I told the hostess my name and she called him and he came right out.”

Bee huffed. On one hand, she couldn’t believe what she was hearing. She didn’t watch hockey, and she wasn’t in tune with the names, the news, the games and the trades, but she still understood how much the Leafs meant to the city. She still understood their power and influence. On the other hand, she should have known better. The clues were there – at this point, they were glaring at her, so obvious that she could only think how stupid she was to have not picked up on them.

“Talk to me, Briony.”

She looked at Morgan. “I just wish you would have told me earlier. I wouldn’t have cared.”

“I’m sorry.”

“Do people like…usually care?”

Morgan nodded his head. “Yeah, they do. A lot.”

“So, what was it? You didn’t want me to care?” she asked.

“No!” he exclaimed quickly. “No no, that’s not it at all. I just…God, I feel like I’m digging myself into a hole here,” he sighed, trying to find the right words. “A lot of people recognize me. Most, actually. So when the drink thing happened at the restaurant and you were like ‘what do you do’ and I clued in that you had no idea I was Morgan Rielly it just felt…nice,” he tried to explain as coherently as possible. “Like, you were talking to me because I was…I don’t know, a guy. A guy reading the same book as you. You weren’t talking to me because I was Toronto Maple Leaf Morgan Rielly, and it just felt nice to be seen like that.”

He watched as Bee furrowed her eyebrows the more he tried to explain himself. “And you feel you’re not seen like that enough. As just a guy,” she used his words.

“Yeah. Exactly.”

“So what happens now?”

Morgan got scared by those words. “What do you mean?”

“Well, the mystique of you being just a guy is over. Now that I know who you are…what happens? Does this stop? Do you move on to another girl who doesn’t know you’re Morgan Rielly?”

“Absolutely fucking not,” he said immediately. “I would never…no,” he stressed. “It’s not about that Briony. It was never about the mystique or trying to fool you or anything like that. Whatever bad thought you might be thinking, it’s not…there’s no way I would do that to you. To be honest, I don’t…I don’t know what happens next. The ball is in your court.”

He was surprised to see a smile grow on her face. “What a pun, Morgan. Shouldn’t it be like ‘the puck is in your zone’ or something?” she giggled.

Morgan couldn’t help but laugh too, realizing his words were so stereotypical for an athlete to say. It definitely diffused the situation. “What I’m trying to say is are you...I don’t know, okay with me being a professional athlete?”

“I already told you I don’t care.”

Morgan let out a breath he didn’t know he was holding. How did he find this girl? Where did she come from? “Then this doesn’t stop. I definitely don’t want it to stop. Do you?”

Bee shook her head. “No.”

#morgan rielly #morgan rielly imagine #morgan rielly fic #toronto maple leafs #toronto maple leafs imagine #toronto maple leafs fic #alone together series

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daarntootin · 7 years ago

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I’m gonna talk about A Lot of Stuff

And it isn’t going to be.......pleasant? But I’ve got it all bottled up and I need to get it out and I forgot how to make a readmore cut on tumblr mobile so I will tag it as best I can. It’s largely gonna be medical so if that bothers you feel free to skip. Feel free to skip in general this really is just for me.

So. January. Literally the first of January one of my little brother’s (the older of the two) developed a panic disorder around death. Specifically dying in his sleep. He can’t be left alone. He’s panicking damn near non-stop. We take him to the hospital several times but because he’s not a threat to himself or others they won’t take him past giving him an Ativan in the ER. At one point I missed work because he was having such a bad panic attack he completely disassociated and didn’t think anything or anyone was real, I had to physically lie on top of him and hold him down because he was trying to run and we didn’t know where to. He screamed like he was being burned alive. I can still hear it.

Around April we seemed to get it under some semblance of control (boy howdy when meds help do they ever help).

Also in April I started a new full time job. This is both the first full time and first office job I have ever had.

And then it’s May. My dad isn’t...doing well. He’s legitimately old so that’s disconcerting. And then he sits us down one night and tells us we was told in February his cardiologist told him the heart valve he had replaced like 12 years ago needed to be replaced again. Which is a thing we knew would need to happen but they last for 15ish years so we weren’t overly worried, and his cardiologist told him he had till towards the end of the year before it would be a problem. Turns out he did not have towards the end of the year. He had two months from that appointment before the valve all but totally failed. He had to go to the ER, his legs were so swollen and his heart was struggling so much to circulate his blood that his calves were leaking lymph fluid.

In the ER his heart rate was under 40 beats per minute, his whole body shuddered when he exhaled. He was pale. He wasn’t my Dad.

They transported him to the Cleveland Clinic. They did a catheter to check out his heart. No one helped him after when he tried to stand to go to the bathroom, he was dehydrated, his blood sugar was low, he’d just had a camera shoved inside his veins. He passed out, fell, and he was caught on the very last minute. But not before he fell and caught his full weight on a previously injured knee. He was immediately unable to bare weight. The knee was never properly checked.

He had surgery. It was supposed to be 3-4 hours long. While it’s heart surgery, heart surgery in the Clinic is pretty routine, simple. We weren’t worried.

His surgery took 8 hours. They replaced one valve entirely, and repaired two others and all but the entire right side of his heart was worked on. We later found out during surgery he had a small stroke impacting his right hand’s mobility. They kept him under overnight as he tends to react violently upon waking with a ventilator in his mouth. Which. Fair.

He ended up being in the ICU for just over two months. During which time he aspirated due to a feeding tube moving from his intenstines into his stomach. He almost died.

They then kept him on a vantilator for a full week, his lungs were so irritated from the aspiration and it turns out an upper respiratory infection.

All during this I was working 40 hour weeks at home alone. By myself. My mother and my brothers were in Cleveland. I got a call from my youngest brother when my dad aspirated. I answered the phone and he was sobbing.

I finally got to see him in June. He was out of the ICU and in step down. He was delirious. Said a building was a sail boat off the coast of Mexico. He barely recognized me. He had to be watched because at one point after the aspiration he’d had a tracheostomy and ripped out the valve in his sleep. Despite having someone “watch” him at all hours of the day, he pissed himself several times and the babysitter didn’t notice. Several of these people would use the clinic computer to shop.

Eventually he came back home. But to a rehab center for his knee and hand. He couldn’t even hold a phone in his right hand and still couldn’t walk. He then moved to another rehab center that started him in intensive physical therapy.

One night while we were there my mom was rubbing my Dad’s neck. She felt a lump on the side of his neck, I chalked it up to a blocked up lymph node. His doctor didn’t know what it was but wasn’t concerned by it.

He came home home after that. He uses a walker and a wheelchair still. He has to use a chair to shower. He’s almost the man I remember. Which I know isn’t fair to him, but I can’t help but feel that way.

One night he layed down flat in bed. My mom noticed a lump on his chest. Surgical hernia. We apparently aren’t worried about that. The lump on his neck though. It kept getting bigger.

Two weeks ago we found out it’s cancer. That weekend we found out it was stage 4. Then that Wednesday we found out that the scoring they use for head and neck cancer changed in January and it’s actually stage one? I don’t know. The biopsy tested positive for two kinds of cancer. I don’t understand it.

And now it’s almost October. I have some kind of head cold. It’s fashion week in my office starting Monday?

I don’t know. I don’t understand anything.

I’m scared.

But so is my dad. My mom. My one brother can’t sleep alone and the other is having problems. So I’m the rock. I’m the one this whole family is tethered to.

My boyfriend and I have been dating for just under 2 years now. I love him more than everything. We’re trying to look for an apartment but with everything that’s happening I can’t even really think about it.

I’m drowning. Every time I come up for air I get sucked back in. And it’s not like I don’t have a support system. I have amazing friends and Glen is amazing. But I just. I’m just drowning.

#medical tw #hospital tw #mental illness tw #long post #surgery tw #personal

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revmattnyc · 6 years ago

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Lennie

“Close your eyes and listen for Trey’s guitar.” I was fifteen years old and I was at my first Phish concert with my Uncle Lennie. The show was at Nassau Coliseum and it was February 28, 2003. I distinctly remember him telling me to close my eyes and to find the guitar as we stood in the penalty box at ice level during the second set. It was as great an experience as it was bizarre. How we ended up in the penalty box that night is still a bit of a mystery to me, but it involved Uncle Len knowing someone who was going to upgrade our seats. The seat upgrade didn’t exactly happen, but expectations were exceeded anyway.

When I think of it, most experiences with Uncle Len were somewhere between great and bizarre, certainly so when Phish was involved but also in other ways.

Lennie is my godfather so we’ve always had a special connection. But when I started coming of age he became a mystery to me. He was the adult uncle who lived upstairs at grandma and grandpas. “Uncle Lennie’s room” was something that added to the mystery, especially since the other adults spoke about it (and him) in mysterious ways. I realize now this could be in part a projection but reality experienced is the only tangible reality we have. When I was ten and eleven years old I began receiving invites into the rarified airspace of Uncle Lennie’s room. This was because Uncle Lennie saw to it early to introduce me to Phish. I remember listening to cassette tape recordings of shows and asking questions about why we were listening to tape cassettes of live concerts and not CDs of studio albums. I also remember Lennie never really giving me an answer other than telling me to just listen.

What’s a kid who desires a relationship with his mysterious uncle to do? I listened. Then I listened some more. And then I couldn’t stop listening. At my eleventh birthday party (and my youngest brother’s baptismal party) he presented me with a gift (unwrapped like always). The gift was a Phish studio album called “A Picture of Nectar.” I remember this moment vividly and I remember a friend asking me if the music Phish played was anything like the music they played on Z-100 (spoiler alert: no).

Within a couple years of this, Phish would take their first of two extended breaks. When they announced that they were returning I remember the phone conversation with Uncle Len and the promise that we would see a show. I was fifteen and this seemed like a long shot but Lennie was sure it would happen. And so it did. Again, I’m not certain how it all came together but I remember that first concert at the coliseum as much as I remember any other major event in my life.

There’s a lot to make fun of in this, and I’m not naive to that. But more than the music, Phish means family to me. And while a lot of people who listen to Phish say similar sentiments—usually as they are on their way out the door for an entire summer neglecting whatever few adult responsibilities they have—for me it was and is actually family. Phish enabled me to have a connection to my godfather that if it would have existed at all it would have been entirely different. It wasn’t just Lennie; Phish enabled me to connect with other family members in ways that I couldn’t have dreamt up or written up. Older cousins, another uncle, and even another reason for my unbreakable relationship with my cousin Shaun.

Our first family show was November 28, 2003—Black Friday. Lennie and our cousin Jen pulled me and Shaun aside during Thanksgiving dinner to tell us we were going to Phish at the coliseum tomorrow night. I’m not sure why or how my Dad and Uncle Tim dropped us off at the Marriott that night, but they did. And there we were: me and Shaun “pregaming” at the bar inside the Marriott with Uncle Lennie, Uncle Brian, cousin Jen, cousin Patrick, and others. The most notable other was an honorary family member, one of Lennie’s best friends who received me and Shaun with Lennie from our dads. I think I remember my Mom and Aunt Donna feeling better about the whole thing because “Mic” was there. We had an incredible night and we came home tearing through my parents pantry for late night snacks.

Even though Phish would soon take their second extended hiatus the lore of Lennie and Phish would grow. I’ve never plotted it out exactly but there is good anecdotal evidence to conclude that Len is the epicenter (some may say ground zero) of Phish fandom in the town of Islip. All of my high school friends who also listened to Phish traced their own fandom back to older siblings and relatives, or older siblings friends, who somehow knew and had a connection to Lennie. The connection largely had to do with Lennie taking them to their first shows and chaperoning them. Much of this really is one giant mystery.

My uncle (or *your* uncle as he was often affectionately called) possessed a deep and abiding love for Phish. He took the second hiatus (at the time billed as a breakup) really hard. Again, it’s easy to poke fun at this but my Uncle is someone who lived his entire life with a profound sense of pain. I’m not doing this to pronounce an amateur diagnosis but I truly believe Lennie felt the pain of being alive. He was always highly intelligent, but he was also always in great need. He tried a lot of things in his life to satisfy that great need, and all of them failed him. Phish was, fair or unfair, the one constant in his life. When Trey ended things it was devastating for Lennie. In this interim he lost his dear friend Mic to cancer and began dealing with some other issues.

Once Trey got clean we all knew it was only a matter of time until Phish got back together again. I remember waking up early one morning in October of 2008 from a phone call from Uncle Len that the Phish website had an announcement that I needed to go check out. Sure enough, Phish was back. Their first shows back were going to be three nights in March 2009 at Hampton Coliseum in Virginia. The dates lined up with my spring break for my senior year of college. I had to find a way. And I did find a way. I scored two tickets in the public on-sale on Ticketmaster. I remember calling Len to ask how he faired. He was utterly dejected, he didn’t get through and didn’t get any tickets. I was so excited to tell him that I did get through and that he was getting my second ticket. Lennie was over the moon and we were both walking on air. That March, March 6th to be exact, we drove down to Hampton, Virginia and we saw the first Phish show in nearly five years. Uncle Brian was there too, and so was Mic’s sister Christine. It was yet another incredible experience. And so began some great experiences of seeing Phish shows together. There were also even experiences of doing “couch tour” together on New Year’s Eve (when I wasn’t going to a New Year’s Eve show myself).

Then Lennie’s life bottomed out. His substance abuse had long reached the point of being beyond sustainable and as a result his life around him crumbled. He resolved, through a lot of outside assistance, to get treatment and help down in Tampa. And he got clean for a year. When he moved back to New York he looked great. I honestly couldn’t remember a time he had ever looked so good. He was healthy, and it was cool. Not long after moving home he began having pain, and although it was pretty rough he had experienced similar enough pain before and initially wasn’t too worried about it. So a year after he went to Tampa me, Uncle Len, and Uncle Brian met at the Garden to try and catch a New Year’s run show. Len was insistent to me and Bri that he had it, that he had a connection and would get us tickets. In years past he would come through; this time he wouldn’t.

The pain never got better, in fact it would only get worse. Lennie would soon be diagnosed with cancer, a really awful kind of cancer. Cancer always changes the lives of the person it meets, and it was no different with Len. He would live with a colostomy bag following major surgery. Most people with colostomy bags wind up living decent and normal lives, so this was always a possibility and it was always within reach. But that’s always been the thing with Lennie: a different sort of life was always within reach. Lennie had lived an intense life, a life that was always on the precipice of being delivered to something new. I think an intense life lived on the precipice of something new is what led to the so many mysterious decisions (and non-decisions) during the course of his life. It was all too much for him to handle.

Lennie became dependent upon pain killers following his major life-altering surgery. I can’t tell if he ever saw it, I’m not sure he’s ever really admitted as much. For him it’s always been about managing his pain, that’s been his whole life’s story. The surgery got rid of the first cancer, but it left him with a different sort of life and he never seemed to work through that. He soon developed a hernia that he never addressed, which became unbearably painful. The hernia may be why he didn’t first notice the pain pressing down on his hip. In October of 2017, nine years after Phish announced their return, Lennie was diagnosed with stage four cancer. For the last year and a half a growing tumor applied pressure to his hip making life unbearable and unsustainable. It’s been hard to watch him, and especially hard recently. Lennie always had a strange resiliency about him, but that resiliency was gone.

When he first got diagnosed with cancer a few years ago I remember driving with him and him expressing his fears and sadness. He was especially concerned that he may never see Phish again. To the outside observer this may seem like an unbelievably tone deaf concern, but for Lennie it was everything. In between his first and second cancers he did get to see Phish again, twice in three nights during the famous thirteen night run at the Garden in the summer of 2017. Lennie wasn’t in great shape then, the hernia was making life difficult even if the cancer hadn’t already made its presence known. But he was there, and we were there. And I choose to remember him that way.

I especially choose to remember him during the end of the first set on July 30, 2017. Phish was playing two songs that they always play together: Colonel Forbin’s Ascent and Fly Famous Mockingbird. During Mockingbird I remember turning around and catching Len amidst a climactic point of the song. He was standing in the middle of the aisle a few rows behind our seats basking in the glow of the lights. The lights weren’t colored or distorted, they were spotlight-like and I remember them shining directly on Lennie as he held his head back and wore one of his mile wide smiles. It’s a smile that all of us who know Lennie recognize. And it’s a smile that I had seen more times than I can count while seeing a show with him. That brief moment at the Garden is the moment that I choose to have seared into my memory in these days.

There are many other ways a reflection like this can go. I could share many other memories and many frustrations, but it’s enough now. This isn’t about revisionist history or anything like that; it’s about a recognition that rest is being granted to someone who lived a restless life. Saint Augustine said, “Our hearts are restless until they rest in Thee.” I strongly believe that Lennie understood this—he may have understood it in his own way to be sure, but he understood this. Len felt deep within himself that something wasn’t right with the world and he spent his whole life acutely aware of it. I don’t mean to excuse him, but I do mean to absolve him. It’s okay now. It’s okay. Fly, famous mockingbird. Fly.

Eternal rest grant unto him, O Lord, and may Light perpetual shine on him.

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albertacancer · 7 years ago

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International Clinical Trials Day at the Cross

My journey began 3 years ago, much the same as many cancer stories begin - I found a lump. After the realization that this was probably not just a hernia from working out too hard, a biopsy confirmed what I would have never expected - stage 3C malignant melanoma.

I remember the first weeks being a whirlwind of statistics and survival rates, scary words you hear used to describe other people’s cancer diagnoses - primary site, metastasized, lymph nodes, surgery, chemotherapy.

After many tests and scans, a surgery to remove the affected lymph nodes in my left groin was the next step. Going into surgery, I was told my chance of survival were low and there weren’t many treatment options that really showed a lot of promise. This type of cancer was the rarer and most dangerous of the skin cancers. Everything seemed very overwhelming and hard to even comprehend.

Thankfully the surgery was a complete success and they were able to remove all of the cancer, there was hope! Because of this, I qualified to take part in a clinical study here at the Cross - I had only a week to decide if I wanted to join as it was beginning straight away.

Stacey rocking the pink hair for cancer awareness.

The risks associated with a clinical study are often wide reaching and unknown. I debated carefully and decided that if I was going to go through this no matter what, I wanted to try to at least help people after me. Hopefully the experimental drug would help me of course, but to be a part of something that furthered cancer research and treatment was something I felt I wanted to do. Clinical trials help to provide direct and immediate evidence of both the benefits and drawbacks of the treatment, as well as the long term outcome for those who participate. Cancer treatment will not move forward if we don’t have these trials testing the science.

My trial lasted a year with one day a week dedicated to tests, scans, and doctors check-ins and updates. The second day was the treatment. It was a long year, the poke of needles, the CT scans, and the general feeling of “is this really happening” never got any easier. But being at the cross and seeing many other people’s journeys was a true eye opener. Not just to be grateful for life, but to be grateful for my experience as well.

Stacey visiting Niagara Falls 10 months into the trial

The clinical trial treatment didn’t come without side effects, some of which will be with me for my hopefully long life. But when I was first diagnosed, visions of weight and hair loss flashed before my eyes. Thoughts of being sick and nauseous and frail and weak terrified me and I was afraid to walk that road.

The treatment turned out to be a very different path for me thankfully. I experienced a wide array of side effects, but with the worst being headaches and skin rash, I could count my blessings. This made the entire experience one I could stay positive throughout, I wasn’t too drained to fight.

I can’t say enough about the wonderful team that I had to support me through this journey here at the cross. My clinical nurse Shelley quickly became my new best friend and someone I could rely on to be there no matter my worry, both cancer and life related. Although it was a lot of monitoring and tests, I felt like I was in great hands which was very comforting. Doctor Smylie, Shelley, all of my nurses administering treatment and the entire staff here became a large part of my support circle - I owe such a tremendous thank you to everyone for making me feel like I wasn’t just another patient, for making me feel like I mattered.

Although I still have another two years of monitoring before I’m truly in remission, I am already most grateful for the opportunity I had to be a part of the trial, I don’t know if I would be here, or be here with such a positive outlook without it.

I truly count myself as lucky for the timing of this in my life. Just 5 years ago, the research and development of these drugs were nowhere near what they were when I started my treatment. I say that I have the best bad luck you can have.

Stacey as the maid of honor at her sister's wedding - the last month of her clinical trial.

Hope and positivity are two things I believe every person needs to make it through life, and I’m very fortunate that the clinical trial gave me the chance to hold onto both of these throughout my fight. My wish is that my story will give someone else the hope and positivity they need to begin their journey.

- Stacey Daub

*A very special thank you to Stacey for sharing her compelling story and educating the audience who gathered to celebrate and learn more about Clinical Trials at the Cross Cancer Institute on May 18, 2018. Your strength and grace were an incredible thing to witness.

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smartphoneteam-blog · 7 years ago

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New Post has been published on Smart Wrist Wrap Watches

New Post has been published on https://www.smartwristwrap.com/the-apple-watch-turns-3-and-its-still-flawed.html

The Apple Watch turns 3, and it's still flawed

The Apple Watch Series 3.

Image: lili sams/mashable

In 2007, Apple changed the act of socializing, maybe forever, with the release of the iPhone. There it was, a perfectly packed 4.5-inch-long computer designed to pulverize boredom like a drill through your skull. You bought one, and now, whenever you have a few minutes of downtime, even if that downtime is shared with your friends or spouse or mom at Christmas, you tap or scroll or swipe something on that little glass screen.

To own a smartphone is to cede some part of yourself to it. The device is too innately fascinating to be conquered by lifehacks, which feel like treating a hernia with vinyasa flow. So, three years ago, Apple released the Apple Watch, promising a better way forward. It’s a mini-computer you strap to your wrist to free yourself of the one you carry in your pocket. Apple’s promises then are worth reconsidering today, after years of modest improvements to the wearable, because the fundamental problem — tech interrupting and shaping our natural lives — remains unsolved.

Indeed, the original sales pitch of the Apple Watch was an admission that something wasn’t quite right in iPhoneland. There was Tim Cook, beginning hour two of a PR gauntlet that had included the announcement of the iPhone 6S, hawking his company’s new “intimate way to connect and communicate.” There was a standing ovation.

youtube

Minutes later, Apple screened a commercial narrated by Jony Ive, the corporation’s chief designer. In 2018, we may understand the Apple Watch mostly as a fitness tracker, but in the video, Ive gives it a significantly more nuanced pitch.

“We conceived, designed, and developed Apple Watch as a completely singular product,” Ive says in his silken British hum. “You know, you can’t determine a boundary between the physical object and the software.”

One of the first promotional images for the Apple Watch depicted a romantic embrace.

Image: Apple/YouTube

Throughout all of this, a render of the Apple Watch rotates and shimmers. During this next line, you see chain-link metal flowing like cream and an erotic pan over the bottom of the Watch’s golden wrist strap.

“We’re introducing an unparalleled level of technical innovation combined with a design that connects with the wearer at an intimate level to both embrace individuality and inspire desire,” he continues.

You can draw a message on the 42-mm screen, or try to. You can share your heartbeat with someone. That’s the Apple Watch difference.

The money shot.

Image: apple/youtube

All of which is to say the Apple Watch, at conception, was a very personal response to an already very personal computer — the iPhone, which you can use during a potluck or after 50 sit-ups or whenever, really.

Yes, Apple, like any great company in the business of marketing products, is skilled at creating needs where you didn’t have any, though maybe it was onto something here. The smartphone made personal computers and the internet ubiquitous, but it also moved them into social life, creating millions of invisible barriers between people that never existed before. Perhaps something smaller, with a series of subtly actionable notifications that only alert the human wearing the device, could in some way solve the problems we hadn’t anticipated from the iPhone.

But the Apple Watch doesn’t solve these problems.

Mixed messages

The author (Damon Beres) and his loaner Apple Watch.

Image: Lili Sams/Mashable

Three years after the original device went on sale, I strapped on the newest iteration of the Apple Watch — a “Series 3” model, temporarily provided for review by Apple — and expected to learn something new. Truthfully, I’ve always been suspicious of wearables, for a fairly self-evident reason: Their pitch is to solve data overload by more or less re-contextualizing that data, without meaningfully changing much in the process. Worse, by virtue of the device being strapped onto your wrist, the chances for unwanted technological interjection are quite a bit higher than they are with a phone in your pocket, or in another room.

Say your friend sends you a text message. In Apple’s ecosystem, that message is equally accessible and interactive no matter what device you’re on. Just like your iPhone, iPad, or MacBook, the Apple Watch receives the signal and produces a little blue, text-filled bubble. You can respond to it fully no matter what device you’re on.

Messages on the Apple Watch

Image: Mashable Screenshot

Messages on the iPhone

Image: MASHABLE SCREENSHOT

On paper, that’s impressive. The Apple Watch has a unique user interface, with a digital crown to rotate and different ways of responding to messages by default — write out letters with your fingers, dictate with your voice, use one of many automated responses — but the core functionality mirrors the programs you’re already accustomed to. Especially with the Series 3, which can be completely untethered from your iPhone, Apple has designed a wristwatch that functions like a “full” computer (at least with some applications).

It is unmistakably an engineering feat, but that doesn’t mean it’s good for people. Though they should offer quite different things to a user, the membrane between the Apple Watch and the iPhone is basically nonexistent. When it comes to something like messages, you’re getting all or nothing on your wrist, just as you do on your iPhone.

The Apple Watch’s iMessage settings.

Image: mashable screenshot

I use iMessage a lot. It is, in effect, my preferred social network. Very quickly, the notifications on my wrist became vomit-inducing. When I need to, I can shove my iPhone in a bag or put it in another room or, in a fit of heaving sobs, ask my wife to hide it, but taking the Apple Watch off is another thing entirely. If you’re going to do that, why have one at all?

Yes, you can use the “Do Not Disturb” function, which stops notifications from prodding at your wrist, though again I wondered: If I turn everything off, what good is this thing? At that point, it becomes a glorified fitness tracker — more on that in a second — that I can use like a mini-iPhone when needed. That is literally never needed, because I have an iPhone, and the Apple Watch is no less disruptive to tinker with than the rectangular slab in my pocket.

Remember that Apple’s original pitch for this thing was all about intimate communication. There are two really important but unspoken elements of that pitch:

Unlike the iPhone, the Apple Watch should keep your hands free. Pay attention to the amount of time people spend actually touching the watch in commercials for this device: It’s not very much.

If you have to look at the Apple Watch, you should get the information you need very quickly.

Remember, out of the context of Apple’s advertising, “intimacy” is already a defining trait of the iPhone. It goes with you everywhere, it takes pictures of everything — that’s intimacy! So, the Apple Watch really has to make its case as something that can remove the barrier between you and the people you’re communicating with in real life (and not via gadgets).

I’m belaboring this point to the exclusion of the, like, billions of other little things the Apple Watch can do — I downloaded a game about chewing bubble gum! — because fundamentally, the Apple Watch fails to remove this barrier. When it comes to intimacy between people, the Apple Watch is nothing new. The user interface replicates the functions of your iPhone, and fiddling with its screen or digital crown will be just as annoying to anyone you’re sitting across from.

This 1983 concept for an Apple “wrist and ear phone” is nuts, but at least it’s not emulating an existing computer.

Image: concept by hartmut esslinger; image via “Keep It Simple: The Early Design Years of Apple, ” published by Arnoldsche Verlagsanstalt

So… it sucks?

Measured against the original promises, the Apple Watch is hardly a success. And indeed, I wanted to experience the device — its latest update, no less — specifically in reference to those promises. We’re more aware now of the potential harms lying beneath our touchscreens, but the fundamental product hasn’t changed much.

That’s probably why Apple has pivoted its marketing for the device. The original commercials were all about subtle interactions between people; many of the recent ones are about exercise. Fair enough: The exercise and health features are great, and certainly better than any of the several other fitness trackers I’ve used over the years.

i will cherish this forever pic.twitter.com/W7xm37rjV1

— Damon Beres ✨ (@dlberes) April 22, 2018

Perhaps unsurprisingly, focusing on fitness seems to have improved Apple Watch sales.

“My theory is that consumers are starting to see a place for Apple Watch in their lives,” industry analyst Neil Cybart recently wrote on his Above Avalon blog. “While Apple’s revised Apple Watch marketing campaign around health and fitness has led to a clearer sales pitch, I think the health and fitness messaging ends up being Apple’s way to get its wrist in the door.”

His full argument is much more involved. The familiar functions of the Apple Watch attract people, but the device introduces new ideas that hint at the future Apple is trying to build. I may not like the screen interface, but Cybart rightly points out that the Apple Watch is packed with additional technology — voice recognition, artificial intelligence, smart sensors — that could become very important to Apple moving forward.

But we’re not in that future yet. I would argue we’re a paradigm shift or two away from the Apple Watch standing apart as a device that most of us would experience as meaningfully different than the iPhone when it comes to most aspects of personal computing, fitness tracking aside. The Apple Watch won’t be “done,” in my view, until you can own it without needing an iPhone — not because Apple’s ecosystem is busted, but because the Watch is too beholden to the iOS framework, warts and all. In an era when many of us dream about being less trapped by screens and notifications, the Apple Watch does little more than pile on.

One could argue that Apple needs to rethink what the Watch is capable of. The fanboys will crucify me for saying so, but maybe reducing functionality would be a step in the right direction — perhaps we don’t need the full, iOS-like iMessage experience on our wrists, for example, though I could only guess at what the right replacement would be.

Until then, here’s what the Apple Watch is for: more of the same.

WATCH: Communicating with people who sign just got a whole lot easier

Read more: http://mashable.com/

#Apple #apple-watch #big-tech-companies #ios #Iphone #Tech #watchos

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enzaime-blog · 7 years ago

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Leader in Appendix Cancer Treatment

New Story has been published on https://enzaime.com/leader-appendix-cancer-treatment/

Leader in Appendix Cancer Treatment

In September 2015, Mike Douglas checked into a hospital near his Virginia home for what he thought was going to be routine hernia surgery. As things turned out, the doctor performing the procedure instead did a biopsy when he discovered something unusual inside the abdomen of the then 54-year-old software engineer, husband and father of two.

After an agonizing week of waiting for results, Mike got a call from his doctor with bad news. The tests indicated he had a very rare and potentially deadly tumorous condition in and around his appendix. Called pseudomyxoma peritonei or PMP, the condition is not curable, but it is treatable, Mike recalls the doctor telling him.

“It was quite a surprise,” he says of the diagnosis.

Treating Appendix Cancer

A series of referrals from local doctors brought Mike to The Johns Hopkins Hospital, where he met with an experienced surgical oncologist specializing in the treatment of appendix cancer.

Of the six subtypes of appendix cancer, PMP is one of the most serious, she says. The tumors, known as low-grade appendiceal mucinous neoplasms or LAMN, don’t typically spread beyond the abdominal cavity. They do, however, secrete a jelly-like substance that slowly interferes with the function of the organs and digestive tract, and if left untreated, can lead to death.

In Mike’s case, the LAMN had perforated, spreading tumors throughout his abdomen.

What Mike didn’t know is that the tumors had been slowly growing inside his abdomen for five to 10 years.

Nicknamed “jelly belly,” the condition is known for the inner tube-like roll it produces around a patient’s midsection. Mike chalked his bulging belly up to middle-age weight gain, but Ahuja knew immediately it was something else.

“You could see it was very disproportional,” she says. “He’s a very fit guy .”

“The reputation of Johns Hopkins, and having Dr. Ahuja overseeing in my treatment, just reassured me that everything was going to be okay,”

– Mike Douglas

The only treatment option for patients with PMP is cytoreductive surgery and HIPEC (heated chemotherapy), Ahuja says. The procedure takes about 12 hours, during which the surgeon removes all visible tumors and impacted organs. Mike’s surgery took place in January 2016 and involved removing his gallbladder, spleen, part of his intestines, half of his colon and his diaphragm.

Surgery is immediately followed by a one-time, 90-minute dose of chemotherapy. Unlike traditional intravenous chemotherapy, HIPEC involves delivering chemotherapy solution to the abdominal cavity through a network of catheters (narrow tubes). Heating the drugs allows for better penetration in areas with remaining tumors, Ahuja says.

Johns Hopkins is a leader in appendix cancer treatment, seeing 100 to 200 patients each year. The surgical oncology team performs a combined total of about 70 cytoreductive surgeries with HIPEC each year.

Mike remembers being immediately impressed by the direct, no-nonsense approach Ahuja took with his case. After looking at his CT scan, she presented her plan for the surgery and treatment details ranging from how long Mike would be in the hospital to when he could expect to go back to work.

There is no screening for appendix cancer, and it’s easy to mistake symptoms for something else, as Mike did with his protruding waistline. The most common warning signs, Ahuja says, are unexplained loss of weight, loss of appetite—cancers often secrete toxins that make people not want to eat—and gastrointestinal symptoms, such as abdominal discomfort and fullness.

Mike also had a dry cough that he later learned was caused by a tumor growing on his diaphragm. Interestingly, his sister was diagnosed with appendix cancer the year before, though doctors still don’t know if the condition has a genetic component.

“If something is not right in your day-to-day, go to your internist and have them look at it,” Ahuja recommends.

Also important: getting treatment at a center that regularly handles cases of appendix cancer, if cancer is suspected. The wrong diagnosis can lead to the wrong treatment, Ahuja says.

“The appendix has all these different types of cancer that can affect it, and getting to places with experience dealing with this is critical,” she adds.

During his treatment, Mike’s weight dropped from 200 pounds to about 150 pounds. A year after the surgery, he is back up to a healthy 190 pounds. With the help of physical therapy, he has regained much of his core strength and stays in shape doing three- to five-mile walks. He knows at some point he will need surgery again. In the meantime, he has checkups with Ahuja every four months.

Mike working out during a recent physical therapy/fitness session near his home.

Knowing that Ahuja and her team had experience treating his rare form of cancer helped him stay positive and calm after his diagnosis, Mike says.

“The reputation of Johns Hopkins, and having Dr. Ahuja overseeing in my treatment, just reassured me that everything was going to be okay,” he says.

Learn More About Appendix Cancer

Appendix cancer is very rare, with fewer than 1,000 Americans diagnosed each year. It occurs when healthy cells in the appendix change and grow out of control. Appendix cancer can be challenging to detect and is often found incidentally. There are six subtypes of appendiceal cancer. Mike had pseudomyxoma peritonei (PMP), a rare and very serious iteration of appendix cancer. PMP typically develops in the appendix and often goes undetected because there are no symptoms. Left untreated, the tumor grows and eventually bursts through the wall of the appendix and into the abdominal cavity, where more tumors develop.

#appendix cancer #cytoreductive surgery and HIPEC #six subtypes #Cancer

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fashiontrendin-blog · 7 years ago

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How Racism Breaks the Human Body

http://fashion-trendin.com/how-racism-breaks-the-human-body/

How Racism Breaks the Human Body

Kaari Aubrey was in preschool when she tried to rub off her brown skin.

Her classmates at her school in Athens, Ohio, were passing a ball back and forth in the school’s playroom when Kaari noticed they weren’t including her. For a while, she pled with them to let her play, but when that didn’t work, she burst into tears. Moments later, a white girl who was playing announced that the others shouldn’t include Kaari because she was “dirty.”

“My hands were clean,” Kaari says, remembering that afternoon. “I didn’t think I was dirty.”

When her white classmate clarified, laughing, that it was Kaari’s brown complexion she considered dirty, Kaari escaped to her cubby, furiously rubbing her arm in an attempt to get the color off.

“It smelled like burnt clay,” Kaari recalls matter-of-factly. At 24, she’s now a teacher living far away from Athens in her Brooklyn apartment, but she still remembers the smell of the rug burn vividly. She also recalls being unaware of the gravity of the situation until she got home and her mother, Lisa Aubrey, began to ask questions.

Lisa is an Arizona State University professor who teaches African and African American studies and political science and splits her time between Arizona and Cameroon. “I saw her rubbing her skin, desperately, almost violently,” Lisa says. “I asked her what was going on. She told me she wanted to rub off her skin and that she wanted to look like the other girls.”

Lisa and Kaari both recall facing discrimination frequently when they lived in Ohio. Kaari remembers being called “a n*gger” on occasions and being asked if she “spoke African.”

Soon after the incident on the playground, two things in the Aubreys’ lives changed.

First, the mild eczema Kaari suffered from as a baby returned. Eczema is a skin condition that behaves like an allergy and can worsen with stress, so the condition came back more intensely and incessantly after being bullied by her classmate in the playroom.

Second, people in their community became intolerable. “They became patronizing and presumptuous and even started dropping by my house to ‘check’ on my parenting,” Lisa says. “As I reflect, some of the parents of Kaari’s schoolmates became more overtly racist as well and often didn’t even recognize their racism, I think.”

As a result, Lisa moved the pair out of Ohio to Arizona, and eventually to Ghana, where they lived for a six years.

In November 2017, NPR published an article about how racism can have physical implications for those subjected to it. “In studying black women, for example,” they reported, “[social epidemiologist Amani Nuru-Jeter] found that chronic stress from frequent racist encounters is associated with chronic low-grade inflammation — a little like having a low fever all the time.”

Nuru-Jeter and others found that the body’s natural reaction to stress can wear down those who experience that stress long-term. That same chronic stress actually changes the genes of the victims of racism, a fact that fits in with previous research finding that trauma can be passed down through generations.

Another study cited in the article by behavioral scientist Arline T. Geronimus found that after a 2008 Immigration and Customs Enforcement (ICE) raid in Postville, Iowa — which “saw more than a tenth of the town detained” and focused on people who “looked Latino” — some local Latina women started giving birth to smaller babies. A follow-up NPR piece also found that black mothers are more likely to lose their babies or deliver prematurely because of the stresses of racism.

When I interviewed Kaari about her experience on the playground in Athens, Lisa told me she had read somewhere that “being black is bad for your health.” After so many years of research on the topic, we now know that statement is true, at least in the U.S. The question that remains is how to solve this problem. What can be done to fix these disparities in wellness when the causes are so institutionalized? And why, after so many years of study, hasn’t more been done to change the way people of color are treated for illnesses?

Susanne Babbel is a San Francisco psychotherapist who specializes in trauma and is the author of the upcoming book Heal the Body, Heal the Mind: A Somatic Approach to Moving Beyond Trauma. She says that when a body experiences trauma — whether physical, emotional or verbal — it prepares to fight, flee or freeze. This means that when Kaari was in the playroom that day, not only was she emotionally traumatized, her body was also completing complex physical processes to solve the problem of her “otherness.”

Her heart rate may have sped up or slowed, blood may have moved to her limbs as she prepared to flee and hormones like adrenaline were fluctuating. Kaari’s body was preparing her for an act of survival. The problem for her and other people of color who experience racism is that there is no “solution” for blackness or brownness. Their bodies are preparing for a threat that will persist until the day racism ceases to exist.

Dr. Babbel says there are major health impacts when individuals face long-lasting, pervasive abuse like the name-calling and bullying that often dovetail everyday forms of racism, explaining that “we get stuck in a state of fight, flight or freeze. When we always have stress hormones, what does that do? It attacks the body. It hijacks the logical brain. The nervous system has to be addressed.”

Dr. Babble explains that when our nervous systems — the network of nerves that web throughout each of our bodies from our spines to our limbs to our brains and our skin, brown or otherwise — are worn down by chronic stress, we begin to think and feel differently. We experience symptoms like chronic pain, thyroid dysfunction and immune disorders. We can become depressed or hypervigilant.

“When people experience racism [or] when they are put down and humiliated [in general] … ,” she adds, “they disconnect from their bodies and themselves. There is a general disconnect.”

Christ-Shamma Matalbert, a 20-year-old student at the University of Arkansas at Pine Bluff, remembers being teased mercilessly after she emigrated to the U.S. from Haiti due to the devastating effects of the 2010 earthquake on her home country. Learning English and adjusting to her new surroundings while being bullied sent Christ-Shamma (who goes by Shamma) reeling into anxiety, depression and what she calls “a lack of hopefulness.”

“I didn’t like going into the cafeteria because of all of the eyes that would be staring like I was an object,” Shamma says. “I felt like I was the only one and the world was against me. Even now, I feel like this in different circumstances.”

As a seventh grader, Shamma’s reaction was to distance herself — to write, to try to ignore how her classmates were treating her, and to freeze, as trauma victims sometimes do. But this year, when Shamma heard President Trump’s remarks about Haiti, she decided to fight. She took to Twitter to write about her accomplishments and her pride in her country. Mixed among the comments of support below the post are insults like “lowlife” and “human garbage,” but Shamma appears to be unbothered. “All of the foreign students were standing up and representing, so I made it my issue to do the same.”

In her 2003 book, Soothe Your Nerves: The Black Woman’s Guide to Understanding and Overcoming Anxiety, Panic and Fear, psychologist Angela Neal-Barnett points out that black women respond to stress in a way that is distinct from others. After finding common ground with other women and nurturing those around us (which is common among women of all races), black women eventually stuff down our pain and commit ourselves to rising above bias. Such is the making of what Neal-Barnett refers to as the “Strong Black Woman”:

“Rather than being seen as less than she [what] is supposed to be, a Strong Black Woman refuses to admit she is stressed and keeps her feelings and emotions bottled up inside while she helps everyone else. This strategy makes the Strong Black Woman an excellent candidate for the development of anxiety.”

In fact, when Dr. Neal-Barnett studied women who identified themselves as “strong black women,” the results of heart rate monitoring showed they experience as much stress as anyone else. The difference was that most of these women described themselves as some version of calm, even when their heart rates were spiking.

“Several said to me, ‘Baby, I don’t have time to think about that mess. If I did, I’d be stressed out about everything,’” says Dr. Neal-Barnett. “Yet taking the time out to acknowledge the stress and do something about it would go a long way toward preventing the development of serious anxiety and the health problems associated with it — chronic upper respiratory infections, hypertension, heart disease and obesity.”

Shamma, the Arkansas student who froze and later fought when faced with discrimination, admits to feeling depressed and anxious when she was bullied as a child, and talks of later dismissing the pain to speak up for other immigrants in a way that affirmed her strength. After exposing her feelings, though, Matalbert neatly packed them back up.

I can’t blame her. I do the same thing. I’ve found the narrative of strength far easier to share than the narrative of ongoing pain. We all want a happy ending.

Last month, while standing around my aunt’s kitchen table, my father recalled a hernia operation he’d had when I was a little girl. My father is now a full-time artist and part-time teacher at the Art Students League of New York, but back then, he worked full-time as a backstage carpenter at Lincoln Center in New York City and only part-time on his art.

Working as a stagehand was a physically demanding job that put him at constant risk of injury, so when he was diagnosed with a hernia, it shouldn’t have been a surprise. I cannot deny, though, that I was shocked when he returned home from the hospital, stumbling into the lobby of our apartment building and retching into one of the trash cans.

During our conversation in my aunt’s kitchen, I found out that my father had been refused pain medication when he’d requested it that day. He’d laid there in his hospital bed in excruciating pain, begging for the painkillers he wouldn’t receive until he threatened the supervising doctor with a lawsuit.

How can a patient trust a doctor whose racism may be contributing to their own illness?

In 2016, The Washington Post published a story revealing that black people are less likely to be treated for their pain because of the implicit biases held by medical students and doctors about their physical makeup. More than half of medical students and residents who were surveyed believed that “blacks’ skin is thicker than whites.” Others believed that black people have less sensitive nerve endings. “Doctors Don’t Always Believe You When You’re a Black Woman,” an article published in Vice in February of this year, recounts black women’s experiences with doctors who failed to trust them.

If black people like my father or the women cited in Vice’s piece are not believed when they describe symptoms as straightforward as post-op pain or headaches, what hope do they have of being treated for more complicated problems caused by pervasive racism? How can a patient trust a doctor whose racism may be contributing to their own illness?

Kaari, the teacher in Brooklyn who was viciously bullied in Ohio, tries to treat herself. “I tell myself, ‘You’re beautiful. Your skin is beautiful,’ [but] even now, to this day, I’m still self-conscious. I get eczema associated with that shame. [It] is amplified by stress that I’m causing myself. The more I get it, the more I’m frustrated with myself.” She asks herself, “’Why can’t you just deal with it? Why can’t you just get over it?’”

While Dr. Babbel says that talk therapy is a solution for individuals’ chronic stress, healing battered nervous systems is equally important. She tells me about the vagus nerve, located in the face, which is calmed by activities like humming. “That’s why people in church sing,” she says, “to have courage and to calm themselves down.”

For a second, I feel relieved. It’s inspiring that we’ve been working to heal ourselves all along. But then, the thought is sobering. I don’t think I’ll ever hear those psalms in church the same way again, knowing now, for certain, that these are the voices of people literally crying out for healing.

Collages by Louisiana Mei Gelpi; Art Direction by Emily Zirimis.

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mirberry-blog1 · 8 years ago

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How One Grieving Mother’s “Empty Photo Project” Is Highlighting Stories of Child Loss

When Susana Butterworth, 23, a student at Washington State University Tri-Cities and her husband, Dallin discovered that the son she was carrying had trisomy 18, they decided to do everything they could to celebrate him. Genetic testing and a highly detailed ultrasound identified physical markers of trisomy 18, which included clenched fists, rocker bottom feet, a strawberry-shaped head, brain cysts, and a congenital diaphragmatic hernia that pushed his stomach into his chest cavity and displaced his heart to the right side. Knowing his medical challenges, Butterworth dedicated herself to her son and borrowed a home doppler from a friend so she and her husband could listen to their son’s heartbeat every night. “I wanted all of the memories I had with my son to be good ones,” Butterworth says. Around 35½ weeks, Butterworth noticed that her son had stopped moving as much. She and her midwife decided to induce within the next few days to give the parents a chance to meet their son alive and share precious moments with him. “I could just tell that he wasn’t going to make it to full-term,” she explains. Sadly, they did not get that chance. The following day, the expectant mother could no longer find her son’s heartbeat. They were given the news at the hospital that their son had passed away. The experience of getting an ultrasound — something Butterworth had looked forward to during her whole pregnancy as a way to see her baby boy — became an entirely different experience, as the screen revealed her son was not moving. Butterworth and her husband were heartbroken and made the decision to deliver immediately. Their son, Walter Thomas Butterworth was born still at 11:52PM on March 8, 2017. “[He was] more perfect than I had imagined,” says Butterworth. “He had lots of hair and this cute button nose that I loved to look at in the ultrasounds. He was laid to rest next to his great grandma. Sue on March 11, 2017.” Image Source: Susana ButterworthAfter her son’s death, Butterworth channeled her grief into a special photo series she developed, called the Empty Photo Project. Her photos feature parents who have experienced a child loss, displaying their sorrow with powerful images that show the emptiness their loss has left behind. “As a photographer and artist, I naturally wanted to turn my experience in losing my son into something meaningful,” Butterworth explains. “I noticed after the funeral, a lot of my friends and even some family members didn’t know how to address my grief and pain. In short, they didn’t know how to face child loss.” The photos, which she features on both her Instagram and website, aim to put a spotlight on loss and to be shocking in a way that forces the viewer to recognize it, rather than shy away from it. Loss is a part of so many people’s lives that means different things to different people. The most important lesson Butterworth hopes to convey through her images is that it’s OK to talk about it. Image Source: Susana ButterworthHer photos feature stories of those who have experienced loss, describing what “empty” means to them. Images of the empty space left behind are then captured by a special circular mirror Butterworth uses. Butterworth herself takes the photos and visits each subject to hear their story and help them choose a location that is meaningful to them. The process of taking the photo is a deeply intense and personal one. Butterworth encourages the participant to talk about their loss, describe their loved one, and not shy away from any emotion they are feeling. Each subject is encouraged to hold the mirror as they may have held their loved one. At the height of that emotional process is when Butterworth snaps the photo. Image Source: Susana ButterworthThe stories Butterworth has featured include everything from mothers of babies born still, infants born with terminal conditions, miscarriage, and the loss that can occur with adoption. Each story is different and conveys the participant’s personal definition of what “empty” can look like on the outside. Image Source: Susana ButterworthFor Butterworth, the meaning of “empty” has evolved as she continues her own grief journey through this photo project. “‘Empty’ means so much more to me [now] than it did when I first started this project,” she says. “‘Empty’ means filling the void of loss with connection and people that I love. ‘Empty’ means remembering that my wounds of losing my son aren’t covered up and forgotten; they are praised, loved, and worthy of showing. ‘Empty’ means that I have the knowledge and experience to be a caring and compassionate woman to others who know what empty feels like.” Image Source: Susana ButterworthButterworth hopes that her photo project will allow those who have experienced loss to be able to share their stories. Additionally, she hopes to help educate those who have not experienced loss to learn to listen, even when it’s hard. “I wish that people would just listen and not speak when someone is grieving,” she says. “Grieving individuals want to be heard, they want to heal and most importantly they want their deceased loved one to be remembered. If we learn to listen and be present, those around us who have lost a loved one would feel connected and learn to heal without feeling like they are alone.” Image Source: Susana Butterworth Butterworth will be giving a TEDx talk at TEDxRichland on September 16, 2017. Her talk will be livestreamed and made available following the event. Follow Susana’s Empty Photo Project on Instagram for more information. Related Post Father Runs Marathon with an Empty Stroller to Honor His Stillborn Son The post How One Grieving Mother’s “Empty Photo Project” Is Highlighting Stories of Child Loss appeared first on Babble. 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austinwholeliving · 8 years ago

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Deeper Why: Gala’s Journey

Many readers were inspired by Shayne’s story that I shared earlier this summer and I’m thrilled to highlight another special person and her journey towards long-term wellness. I’ve known Gala for over a decade, but it’s only in the last couple of years that we’ve become closer working on the employee benefits side of my life. I’ve seen her pull all nighters for clients, drop everything for her family, and in the last year, make a profound commitment to her long-term well-being. Yes, we all love before and after photos and I get obsessed with the metrics, because it’s tangible evidence for change. Alas, those metrics say little about the longevity of sticking with a healthier lifestyle and we all know by now that when it comes to long-term health, logic only takes us so far; it’s the heart that does the heavy lifting! Because I’m all about finding YOUR unique path, I love exploring the how’s and why’s of individual journeys.

Gala’s transformation is nothing short of inspirational and I think it’s a fantastic example for many middle-aged people who tell me their habits are set in stone, using their age as an excuse to remain at risk and unhealthy. I truly believe it’s never too late to put yourself first and find your path to a happier, more fulfilling life. Watching my friend and coworker embark on, and stick with, her journey fills my heart with joy!

The Origin Story

So much of our childhood and early adulthood shape our self-perceptions and self-esteem, so I wanted Gala to give us her background.

When I was younger, I was very active with running and cheering. I ate a very healthy diet as we grew up on a farm with fresh veggies and fruit. As I grew up and ventured out on my own through college, marriage, and raising children, those healthier choices disappeared and were replaced by whatever was most convenient in the moment; fast foods, high fat processed options, and diet sodas became the norm.

Gala’s Why

My journey began about a year ago when I was tipping the scale at over 200 lbs and had developed a hiatal hernia that was very painful and required surgery. It was the weekend and I was watching my young grandchildren. I remember being extremely tired and not able to keep up with them. So depressing. Finally, at the end of the weekend, I sat on the floor and cried, thinking, “how did I get here?” I thought about how active I was in the past and asked myself, “what am I doing now on a daily basis to be active? How much time am I taking to actually plan anything just for myself?” I realized I had been turning down invitations and was dreading meeting new people. I love to entertain, so not being as social was really affecting me.

Why wasn’t I taking care of myself? I made a commitment right then to take care of myself and began making plans to do just that.

Milestones Along the Way

A total lifestyle change was in store for me, not just a diet or exercise program. I am ecstatic that I am healthier today! I dropped over 50 lbs (although I’m more excited that I’m healthier and feel better than I am about the number on the scale); I walk every day, and if for some reason I don’t get that walk in, I don’t beat myself up but I make sure I find a way to move. I plan out my meals and, even if we go out to eat, I know exactly what I’ll be eating and drinking before we go in. When I travel, I pack my own snacks and always carry water with me.

Healthier eating habits, daily movement, and the weight-loss have given me tons more energy. That helps me keep a positive mood while my focus on my job and personal projects seems sharper than ever!

Challenges & Support

Before last year, I had tried all the diets out there, looking for that miracle solution. Of course this didn’t work, because it never became a lifestyle change for me and I was looking for a quick fix. When the quick fix didn’t happen, I’d become discouraged and unhealthy choices became the norm again! The biggest challenges for me was taking the time to plan meals and activities, and be accountable to noone but me.

Of course I still face these challenges, but my mindset has changed and I remind myself that the work required to plan is worth it compared to dealing with the consequences of not sticking with this new lifestyle.

My family and friends have been amazing throughout my journey. My sister also struggled with unhealthy habits and obesity. She’s now seen positive results by taking accountability and putting in a plan to take care of herself first. I am so proud of her. I hope my journey is an inspiration to anyone who needs it, because I love helping others!

Best Practices

I found what works best for me is planning ahead of time. I need to plan out my meals and activities weekly. If I don’t make time to plan, I find myself missing opportunities to take care of me. My recommendation is to have an honest conversation with yourself about where you are right now and where you want to be. Be honest about your challenges and obstacles in between you and your goals. It doesn’t matter where you are today or what your age is. What matters is realizing that you want to be healthier, both mentally and physically, so that you’re able to fully enjoy your life and embrace the journey to long-term wellness!

The Journey Continues

I’m very happy with my lifestyle changes and feel excited to continue my journey. I want to inspire my children and grandchildren to make healthier choices and take care of themselves so that, in turn, they can take care of others and enjoy their lives. This lifestyle is so much more than a number on the scale; it’s mentally and physically taking the steps to be the best version of me. The only thing I would have done differently is started this journey sooner!

I am not a licensed nutritionist or dietician. You should always consult with a nutritionist and your primary care provider before changing diets or workouts in any way. This article is not meant to cure, heal, or otherwise solve any medical conditions whatsoever. It is based on personal experience, education, and research.

#weightloss #weight #diet #dieting #lifestyle #austinwholeliving #health #healthy #healthyliving #nutrition

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