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[hell-and-rainbows]

What About Visitors?

You will notice that my post about the rehab hospital doesn’t have anything about visitors. You will also notice that I didn’t wake up to a room filled with flowers & balloons & cards, which is what always happens in books & movies and would have made me feel super happy & super loved. But I didn’t get that.

What I did get was a then-husband who was super angry that I was not dead. Not only was I not dead, but I was alive in a very inconvenient way. I know this is true not only from his actions, but also from his confession in couples counseling. So know that this is not an exaggeration. He was in the hospital with a woman who was in a coma and told she would probably die.

I then did the most surprising thing in that I started to breathe on my own, went to a rehab hospital & started to get better. None of this was part of his plan.

I would like to mention here that before this happened, I had no idea I was in an abusive marriage. I honestly thought that he cared about and loved me. When I look back I realize that there were lots and lots and lots of red flags that I completely ignored.

He discouraged people from sending flowers, cards & balloons. When people sent cards he would throw them away in front of my children. The children would dig them out of the trash so he started throwing them away somewhere my children couldn’t find.

He told people that what I’d been through wasn’t that bad. That I didn’t need anything. All of this is a lie and it still hurts to type it. We’d been married for 21 years when I went into a coma. I never thought he would wish that I was dead. I was still highly messed up from the coma, however, so while I thought he was being mean, I had no idea that he was cruel and that I was to see up close & personal how cruel he had become once I left the rehab hospital.

So he didn’t visit me at the rehab hospital except to drop off our children with me for an hour. Or sometimes drop off clothes that I needed. Now imagine how difficult it was for me to wrangle two children who are 12 and 15 visiting their mom in a rehab hospital where they are terrified of what has been happening with her. It took everything I had in me to try and be upbeat and happy for their visit and my son's favorite activity was to push me around in my wheelchair while my daughter was busy trying to get my son to calm down and get me back into my bed. It was a challenge, but I was so happy to see them and I love them so much. I was thrilled to have them with me, even if it would have been easier if I had another parent with me trying to navigate the whole thing.

My friend Meg was amazing and she brought the children to see me as often as possible. She would stay with us during the visit to help me navigate the kids and then she would take them off to do something fun to take their minds off their super sick mom.

I did have visits from a couple of other friends every so often, which I treasured. Know that visiting someone who is in the hospital for any length of time is a godsend. If you have the ability to visit them, please do. They are bored & lonely and could use a friendly face and kind words, even if it’s for 15 minutes. You don’t need to stay long. It’s just nice to know that you care. Also, bring flowers. They make everything in the sterile environment so cheery. Although that just might be my love of flowers speaking.

My best friend spent the summer with family on the East Coast, so I didn’t get visits from her, but I did get texts & calls, which made me happy.

For the most part, my ex did an excellent job of isolating me and not telling friends that lived afar what was happening so I didn’t hear from them.

I was way too out of it to try and call someone. All of my intellectual acuity was taken up with the physical part of my body. I don’t think I could have made a phone call no matter what happened. I barely remembered to call the nurses when needed.

The good news is that I am a very optimistic person and I knew that I just needed to get out of the rehab hospital and then I would be able to see some people and things would move forward. So they did.

[hell-and-rainbows]

The Rehab Hospital or as I like to call it ~ Heaven

You will learn about the amazingness of the rehab hospital, but I must say that the love affair didn’t start off super well.

Since I had literally just woken up from a coma the rehab hospital didn’t expect me to be as freaking determined as I am in my quest to move so they put me in a bed that had a fancy mattress that would inflate with air pockets in different places in order to move my body so that I didn’t get bed sores. They assumed that I would just be laying there, but haha to them. I was able to at least move about the bed a bit.

It felt like I was being attacked by a bear. I absolutely did not like this bed. It was a random pattern so I couldn’t learn the pattern to expect where it would inflate, plus I was still super drugged & dopey from, ya know, being in a super long coma.

After the first night I called in the hospital administrator and explained that I was sleeping with an attacking bear and because they are an amazing rehab hospital they got me a plain mattress the next day. They asked if I needed a fancy mattress to help me move and I asked just for the regular hospital bed mattress that I would be able to navigate and wouldn’t attack at irregular intervals.

They did an assessment the first full day I was there and the prognosis wasn’t great. I couldn’t get into the wheelchair, stand or sit. You know the basic trifecta of things you need to do to function. So they were thinking I may learn to walk at some point, but they weren’t sure it would be anytime soon. They were basically hoping to get me to stand and sit. These would be huge accomplishments.

My hands were too weak to push the nurse call button. They were so weak. It makes me sad to think about it.

I had a physical therapist, speech therapist, occupational therapist, respiratory therapist, a psychologist, doctor & amazing nursing staff.

My speech therapist was in charge of the much hated feeding tube. Her goal was to get me to be able to drink around the feeding tube and learn to speak from my surgery. My goal was to get rid of the feeding tube and to be able to speak so people could understand me with my strange new tongue now with added arm.

I was put into a group of people who had survived strokes because they were the closest to my diagnosis, so every morning I would sit with my group or people in their 70s & 80s and the speech therapist who was also in charge of feeding issues. I would work on drinking and other people at my table would work on their own issues.

Fairly quickly, like two days in, I mastered drinking a liquid and eating jello. This was in no possible way satisfying to me. I still felt like a toddler on a tether who wasn’t allowed to ride the tricycle even though I totally could ride the tricycle. So I kept after the speech pathologist asking what I had to do to get rid of the feeding tube out. She was of the opinion of never or years from now and I was of the opinion of tomorrow or next Tuesday.

So finally, after much haranguing on my part, she said, fine you have to eat a bowl of oatmeal. The entire bowl without choking. This was a pretty hard task, mind you. I had a tube taking up part of my throat so swallowing wasn’t easy. Even the jello was a bit of a challenge. I asked if I could eat the oatmeal without the tube in and she said no, because it was too painful to put it back in and I was never going to be able to eat the oatmeal anyway.

You all know that I ate that entire damn bowl of oatmeal. No choking, nothing. I ate that sucker like a champ and was rewarded with the super painful yet joyful experience of having my stupid feeding tube removed from my body about a week after I got to the rehab hospital.

I still couldn’t talk without a terrible lisp, so the speech pathologist wasn’t rid of me, but I was so freaking proud of myself.

That was much of my experience at the rehab hospital, which is one of the reasons it was one of the most joyous experiences of my life. They kept saying I couldn’t do something, but they would let me try and let me continue to grow & develop into the post coma recovery person I was going to become.

This was the first time in my life I felt like I was supported by an entire group of people who were looking out for my best interests, but also letting me stretch & grow. It was deeply healing on a psychological level.

I had a big bald spot in my hair from the coma, so I had a wonderful nurse who would comb my hair every morning making sure to cover the bald spot. I didn’t know I had it until I got home from the rehab hospital. She made sure I never saw myself without my hair combed. How amazing is that?

My lungs were pretty much a mess after the coma, so I had a respiratory therapist who gave me fun breathing toys that I used to do breath exercises. I was able to breathe deeply after a week, so I no longer needed my respiratory therapist. This is a freaking miracle, by the way. I don’t know if this is because of all the exercising I did or my years of dedicated yoga practice, but I was feeling pretty chuffed with my body’s ability to breathe competently. I feel grateful daily for this ability. It’s not something I will ever take for granted.

I know that my lungs were a terrible mess and they didn’t think I would live because I was sitting in one of the open rooms of the hospital when one of the pulmonologists who had treated me when I was in the ICU saw me and broke down into tears. He was shocked to see me without an oxygen mask, breathing and talking while sitting up in a wheelchair that I was managing on my own. It was quite a big revelation to me at the time that I had really been as sick as everyone said I was. I mean doctors don’t tend to cry happy tears at their patients, so I was in unknown territory.

He said that he was so happy to see me and was absolutely shocked and pleased at my recovery. It really drove home how close I was to death and how grateful I was to be recovering so well.

Every day I had physical therapy and occupational therapy. They would come get me in my room, put me in my wheelchair & take me to the gym. It was the best part of my day because I got to work on being able to move and do things we take for granted. Like standing.

They used a lot of ropes & pulleys & other contraptions to get me to even start to stand. They also had to work on the basics, which was sitting. They used pillows & props to just get me to sit in the beginning. My hands were too weak to hold me in place. I had to use my core, which was pretty destroyed from laying down for six weeks. Not as badly as one might think, but definitely a serious hit.

Once I mastered sitting, I was put into the double rails where you begin to learn how to stand. You’ve seen them on various documentaries where people are learning to walk. The double bars seem to be ubiquitous in the world of learning to walk.

It was damn hard work. Just trying to stand with all the pulleys, belts, etc. was exhausting. I wasn’t one to give up, but it was frustrating at how hard I had to work just to accomplish sitting & standing. I was always working on getting my arms to be strong enough to help me sit & stand. My arms were weaker than they had ever been and just lifting a spoon into my mouth was quite the exerting activity.

Once I was comfortable with sitting and was able to move my arms I was also able to get into my wheelchair and I was happy as a clam.

With my wheelchair I achieved a level of semi-independence that really made me happy. I’m an extrovert by nature, so I was able to go visit people in their rooms, chat with the staff and just see what was happening.

I’ve always enjoyed exercise so I started to use my wheelchair to strengthen my arms when I wasn’t working with a therapist in the gym. It was also a great way for me to practice my hand strength since I needed to grip the wheels when I pulled them around. The only problem I had with the hospital wheelchairs was that they were so heavy and didn’t go very fast.

I had the brilliant, if not delusional idea to go talk with the hospital’s chief administrator about getting me a racing wheelchair. My logic was that if I was going to be stuck in a wheelchair, it should be one that goes fast and can handle corners. The administrator was very sweet, but told me that no, they did not have any racing wheelchairs on hand, and that perhaps we should just work on getting me to walking so I didn’t need a wheelchair.

At this point I wasn’t certain I would be walking anytime soon. I was still having trouble with standing and walking seemed a really far cry from that. So I went back to the wheelchair determined to get it to go as fast as possible and hopefully the nice people would eventually grant me the fast zooming wheelchair of my dreams.

My hands were less than dexterous so the occupational therapist would hide buttons & beans in some therapy goo that I would then have to go and remove. This was so freaking hard to do. I was getting better with large muscle abilities, but the fine motor skills proved to be quite a nemesis. I would sit at a table with a bunch of other people who were also in rehab and we would go through our goo and pick out our buttons and it really reminded me of adult summer camp for sick people.

One of the men in my group who had a stroke and was in his 70s was finally walking where I was still standing and that was exactly all the motivation it took for me to start doing extra sucky standing practice in my room to try and get my leg muscles to get with the program.

I had been so focused on getting my arm strength back that I was now working on my legs and I would stand as much as I could while in my room. The nurses were kind about being supportive and everyone was just happy that I was making so much progress with standing.

My psychiatrist was fairly helpful. I was still having trouble with the nightmares that I had from the coma. Every night I would dream that I was being kidnapped and everynight I would wake up to find that I was safe. The rehab hospital was nice because my room was right next to the nurses station so they could check on me if my nightmares were too bad.

The rehab hospital got me to where I could eat normal food again, I was breathing really well, my arms were strong from the wheelchair and I was comfortably standing for a few minutes at a time, so it was time to move onto walking.

Just for the record, walking is hard when you haven’t done it in a few months. There seems to be very little that is intuitive about walking since you’re pretty much hurdling yourself through space. Or at least that was my opinion at the time.

I started out walking between the two rails with a safety belt around my waist and two physical therapists standing there to catch me. I made gradual progress over the first week of working on it, but felt very much like I would be pretty much stuck in a wheelchair.

Then my physical therapist gave me goals. I’m good with goals. I know how to achieve them and I am all about the sticky star. As a matter of fact one of the staff went out and bought gold sticky stars for me so that they could give me a star every time I did something well.

I was meant to be in the rehab hospital for a month, but my children’s birthdays were coming up after three weeks, I was tired of being away and I really wanted to be home for my babies birthdays. So my physical therapist said that if I could get to walking and walk up three stairs then I could go home. They did not expect me to go home early because no one does, but I was ready to give it a shot so I could go home after three weeks instead of four.

I still wasn’t walking without the polls, so this was a big ask, but I’d gotten myself this far, I knew that I could get myself where I needed to be so that I could be there for my kiddos.

We started out with me walking next to a wall with her holding my belt and dragging my wheelchair so I could sit down & rest. You need lots of rest when walking again. It’s exhausting both physically and emotionally.

I was eventually able to take small steps next to the wall, leaning on it for support and sure in the knowledge that my therapist had my belt in case I needed more support.

The day that I was able to take my hand away from the wall and take two steps all on my own I broke out in tears. I was told that I may never walk again, that if I did it would take me months if not years and I accomplished my first steps in a little over two weeks at the rehab hospital.

I spent the next week working on walking with a walker. I wasn’t anywhere near ready to walk on my own, but I could eventually walk competently with a walker and navigate things that might get in my way.

The stairs looked like a mountain and I was so terrified & exhausted by the idea of walking up them and back down. My bedroom at my house was on the second floor so in order for me to go home, I had to be able to navigate the stairs.

The first time I looked at the set of three stairs they looked so oversized & intimidating. They seemed like something a child would climb up and not at all something I would be able to step onto. I got scared when I initially took a turn with the stairs and only made it to standing at the bottom of the stairs and looking at them. Then I managed to go up and down one stair, after which I needed quite a bit of a rest because that was exhausting.

Over a few days we worked consistently on the stairs until I could navigate them up and down without extreme exhaustion or risk of a fall.

I was still a fall risk even though I could appreciably walk with a walker & climb stairs, but I was much less of one and I was able to be home by the days of my childrens’ birthdays.

On the day that I left I was given a lovely card signed by all the people who had worked with me and one of my prized possessions is one of the safety belts that was signed by all the physical & occupational therapists who worked with me with all sorts of sweet messages. I love all that the belt represents and now I use it as a yoga prop instead of a safety belt.

[hell-and-rainbows]

Southwestern Tomato Bisque Recipe

In a slightly confusing move I’m going to give you my recipe for the soup that I’ve eaten every morning for the past six months. I tend to find a soup I like, then I eat it for the fall, winter & spring and then the summer is too hot for soup so I go to toast. But, for most of the year I eat some type of soup and this one has made me happy.

I found that the tomato soup on its own is a bit too acidic, so you will see that I add carrots to the soup. The carrots give it a really velvety texture, but also tamps down the acid in the soup. Also, feel free to mess with the spices. I never make the same soup twice because I’m always adding a bit more or less of one of the spices.

Fair warning, this makes a lot of soup so it will last me quite a few days. You might want to halve the recipe.

I eat this soup with crushed tortilla or corn chips to give it a bit of a crunch.

Tomato Bisque

3 Tbsp Sunflower Oil or whatever you have on hand

3 Tbsp Chili Powder

½ Tbsp Turmeric

½ Tbsp Cumin

1 Tbsp Salt

3 Cloves Garlic, crushed

1 Small Tin Green Chilis, fire roasted

2 Large Tins Crushed Tomatoes

2 C. Chicken or Veggie Stock

3 Carrots, diced

1 Cup Cream or more or less

Put the oil & dry spices in a pot and cook the spices on low until you start to smell them and the oil begins to separate from them. This doesn’t take long and it’s easy to burn them so keep your eyes & nose at the ready.

Once the spices smell nice, put in the garlic and stir vigorously.

Next add the tinned tomatoes, stock, chilies & carrots. Bring the soup to a boil then put down to low and let simmer for an hour.

Once the carrots are soft, puree the soup until velvety.

Add the cream.

It’s all done & enjoy the yummy soup!

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[hell-and-rainbows]

Being Kidnapped

Trigger warning! This is a story about being kidnapped in real life. Please read with care if this is something that will bother you.

One of the reasons that the nightmares of being kidnapped seemed so real was because I actually was kidnapped when I was 20….in Russia.

So this is my story of what it was like to be kidnapped. Because my life has been a freaking dream.

I was on a train from Riga, Latvia to St. Petersburg, Russia traveling overnight in a car that had four bunk beds. I loved traveling by train in Russia because you get to meet people in your car and the train stewardess brings you lovely cups of tea that taste particularly good because they are made with a samovar and sweetened to perfection.

I was traveling and talking with a woman who was sleeping across from me. She spoke Lithuanian, which was handy because, at the time, I didn’t speak any Russian. We talked about her life and her love of Lithuania even though she was originally from Russia. I was happy I felt cozy in the train car.

The next morning I was getting my stuff together so I could get off the train when I turned to say goodbye to the woman I’d been speaking with. When I turned back my bags were gone. I was totally freaked out and I turned to the woman to ask if she’d seen what had happened. She said that the man who had the bunk above me had taken my bags and was taking them to help me get a cab.

This will probably seem like a totally obvious ploy to those of you reading, however, that was all my stuff!!! I was young and everything I’d been working on along with many of my limited wardrobe were in those bags. I was more freaked out about losing the bags than thinking that someone might want to kidnap me. That never even entered into my mind.

Also, men were always being chivalrous in confusing ways when I was in Lithuania, Latvia & Russia, so I wasn’t surprised that a guy was taking my luggage to a cab for me.

I showed up to find him putting my bags in the trunk of a cab, holding open the cab door and directing me in. I thanked him and went to close the door when he got in on one side and a friend of his got in on the other.

I immediately thought, ‘okay, I guess I’m sharing a cab into town.’

I spoke all of zero Russian, I knew not one Russian letter, I was definitely at a complete loss on most fronts. But I did have a super handy note. A friend of mine had written a note telling the driver to please take me to the American consulate, since that was where I had friends.

I felt confident handing the driver the handy note, which he read. The guy from the train then asked to see the note, read the note, said something to his friend on the other side of me, crumpled up the note and threw it out the window.

This was my, I guess I’m fucked, moment.

I spoke no Russian, if I managed to jump out of the car, which would require some type of skill I certainly didn’t possess, I was equally screwed. I couldn’t ask anyone for help, the Russian police is to be avoided at all costs and I was officially scared.

I had the guy from the train to my right and I will call him Mr. LoveYou. He would periodically stroke my hair and say ‘beautiful’ or ‘love you,’ which was absolutely not at all comforting, even though I suspect that was his goal.

I was taken to a Georgian restaurant because it turns out I was kidnapped by the Georgian mafia, which is better than being kidnapped by other mafias because I’m still alive and I don’t think it would have gone so well had I been kidnapped by a mafia that was more ruthless.

I was immediately introduced to a large group of men all dressed in traditional clothing who then surrounded me in a large circle and proceeded to talk about me. Mr. LoveYou would periodically move me around and stroke my hair. Yet again…..not comforting! While the rest of the men would talk and then point at me.

I am not a wilting flower. I am someone who grew up in trauma and handles situations better than most. So I didn’t break. I didn’t cry. I didn’t falter.

Instead I calmly stated that I was meant to meet friends at the American Consulate, which at least was the two words of Russian I did know. I explained that they would look for me when I didn’t arrive. That I was not happy about being wherever they had me and that I would like them to return me to the American Consulate.

I used the amazingly useless languages I knew, so I started off in English then moved to Lithuanian, Spanish & French. None of this was going to be a meeting between me and the men who spoke Russian, and presumably Georgian.

I went to the bathroom to see if there was a window I could climb out of, there wasn’t.

I ended up back in the main room with a bunch of men ogling me and Mr. LoveYou. I was terrified. I had no idea what was happening or what they planned to do with me. Years later, I realized it was part of a trafficking ring where they would find young girls on the train that they could traffic.

There were young women in the back that I caught glimpses of who looked terrified as well who were cleaning and moving around.

However, I didn’t break. They kept me standing in that circle for hours and I didn’t cry, I didn’t break down, I didn’t look to Mr. LoveYou for help or comfort, which was his role. I just calmly continued my circle of statements in a variety of strange languages that I was indeed expecting them to take me to the consulate.

After a few hours of this they took me outside, picked up my bags, got a taxi and took me to the same block as the American Consulate and pointed me in the right direction.

This was one of the scariest and most surreal experiences in my life. I got into the consulate and immediately found my friends and told them what had happened. They told me that it didn’t happen and I needed to forget about it. This was because I couldn’t lodge a complaint. I’d forgotten to get a visa into Russia so I was there illegally, so taking it to the police would only cause me trouble especially since nothing really bad happened. I was kidnapped for a few hours, which is a good day in Russia.

So because I knew what it felt like to be taken by someone it made what I imagined at the hospital seem even more real, which made it especially awful.

But I made it out!

When I came back to the US I studied Russian for two years with the idea that I would never return, but if I did at least I could read the street signs.

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[hell-and-rainbows]

Soundscapes

I love sounds and how they change an atmosphere. I think a lot about sound because I'm pretty sensitive to the sounds around me. Most people would say that my home is quiet, but I hear a lot of noise. As I sit here I can hear the refrigerator go whirr, the oven is on & making a click sound, the clock is ticking (as all clocks should), air is wooshing through a fan & the dog is breathing.

When all the sounds are too much I turn on music so that I can concentrate on one cacophony at a time. The music overrides all other sounds and brings a different type of peace than the one I get from the sounds that make up a home.

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[hell-and-rainbows]

Lyle's Black Treacle

Okay, let’s take a break from the less fun adventures of me in hell and let’s find a rainbow.

If you like black licorice, because you have good taste, then you will LOVE Lyle’s Black Treacle. It’s a type of molasses, but processed differently and tastes better than any molasses I’ve ever tasted. It also has a hearty amount of calcium, iron, magnesium & iodine in there to make it even better!

Think of it as a health tonic. I know that often helps me feel better about the whole thing.

This is totally a British invention and has been around forever. These are the same people who make golden syrup, which is also yummy, but I would like to state that few things live up to the black. You can’t get black treacle at most grocery stores outside of Britain, but you can order it on Amazon by the case. I would like to argue that you will want a case of this. It’s only 6 tins, lasts for a lifetime and is freaking amazing.

You can use this in gingerbread, but also just put it on waffles & pancakes. Nigella Lawson & I love thunder & lightening, which is when you put clotted (or whipped) cream and black treacle. YUM!

Don't ask me about the whole lion bee situation. I get how it goes with the saying, but I can't help but find it troubling as an image.

That’s it. No heart wrenching story. That comes tomorrow :-)

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[hell-and-rainbows]

Waking up from a Coma

Trigger warning! This is a story about waking up from a coma and all the awful stuff that comes with that. It has themes of helplessness, nightmares & helplessness. Please read with care.

Waking up from the coma gets its own post. This was an experience that seemed to last for over a week, but I’m told that it was really about 3 days.

These were some trippy days. I became paranoid & delusional from the many, many drugs I had taken all without any of the super handy anti-anxiety drugs that I need to keep my feet on the ground.

As a result, I became paranoid & delusional for a bit and was convinced that secret people who lived in the basement of the hospital were coming in and moving me around the hospital at night. People were less than helpful when I shared my delusions with them. They mostly told me they were silly and couldn’t possibly be true. This is not information that is helpful to a person who is already paranoid. I figured that the people were simply in cahoots with the secret basement people.

I am still proud that I managed to kick one of the nurses across the room who I thought was a basement person who came to steal me. This was a fairly unkind male nurse who was convinced that my muscles would have completely atrophied after the six week long coma so he went to move me and was being unpleasant and I kicked out and he went flying.

I would like to state for the record that my muscles didn’t atrophy like anyone expected. I was strong as a freaking ox when I went into the coma and I was strong as a very weak ox when I woke up. But I was still an ox.

My then-husband was the worst of the not useful lot and simply told me that I was paranoid and that the facts showed that I was remaining in my hospital room. I was already mad at him because I knew he hadn’t been around when I was in the coma, so I figured he was just being an ass and didn’t care if I was being abducted by basement people.

The one good thing he did was to get me back on anti-anxiety meds once I was awake and acting like a crazy person, which took care of the paranoid delusions, which was handy.

Armed with zoloft in the mix of meds I was taking I started to come back to myself. I kept drifting in and out of sleep, which made the passage of time really hard to tell. My friend Lisa was there and my friend Meg came to visit while I was waking up. One minute I would be talking with someone and the next I was waking up again. I had no control over what was happening, which was really frustrating.

The absolute WORST was the fact that they had stopped tying me down, but they had my hands covered with these mittens which meant that I couldn’t touch anything, but also kept me from pulling out the tubes that were keeping me alive.

I hated these mittens with vitriol usually kept for terrorists. I wanted them off of my hands. I wanted to control my hands. I would wake up and no matter who was in the room or what was happening, I would spend all of my time upon awakening just working to get the velcro off of one glove so that I could then work on the next glove. I would inevitably manage to get the first glove off only to fall asleep again and awaken only to find that some nurse had reattached the damn glove I had worked so hard to remove and I had to start all over again.

My saving grace was that my friend, Lisa, would always take off the offensive mittens when she visited so that I could actually hold her hands. I will always love her for this important reprieve from the much hated mittens.

One of the nurses decided that it might help if she drew a happy face on each mitten. This didn’t help at all. It just made me angry at the nurse as well as the mittens.

I was super confused from the fact that all I remembered was going to the hospital for the surgery for my cancer. I had no idea that I’d been in a coma for 6 weeks at the edge of death for most of them.

So I was irritated as to why I was still in ICU, why I had mittens attached to my hands and was being treated like a toddler.

As I became increasingly aware of my surroundings over the three days it took me to wake up I was able to comprehend that I’d been in a coma, but I wasn’t sure why, I knew that I felt like I’d been run over by a truck, but that seemed fair considering the surgery I was to have. It was impossible for me to come to terms with the amount of time that had passed.

Plus, I had two children. Where were they? Why weren’t they there? It turned out that they had visited sparingly. They were 12 and 15 at the time and young to deal with having a mom on death’s door for what seemed like an eternity for them.

The most shocking thing I learned when I woke up was that the US Supreme Court had legalized same sex marriage, which made me so freaking happy and I absolutely didn’t believe. The world that I went into the surgery with certainly didn’t seem like one which would have this bit of good news, but it did. It really happened, which was wonderful.

I was particularly annoyed by the feeding tube. I knew that my mouth was probably a mess, but with a feeding tube they don’t let you put much in your mouth, which means your mouth feels like hells. I just wanted to have a constant ice chip dispensary into my mouth, but they don’t let you have what you want. They let you have what is best for you, which everyone knows isn’t usually the same thing.

Although the feeding tube did allow me to taste what flavor of liquid they were putting in my tube. The nurses said that I couldn’t possibly taste the flavor through the tube, but I always guessed right, so I’m going to say that I absolutely could. It was chocolate or vanilla and the chocolate is the one I could taste. It was like a faint wisp of chocolate flavor, enough for my senses to pick up on the difference in the tube.

The other nice thing is that the feeding tube was constant and the liquid that they used was cold, which meant that my throat wasn’t sore from the tube since it was soothed by the cool.

Also, feeding tubes go through your nose and down your throat. These are one of the most uncomfortable things I’ve experienced and as you now know, I’ve experienced a lot. They loop the tube around the bottom of one nostril and then click it to the main tube so you have a weird feeding tube ring on one side.

The mittens were taken off on the third day before I was transferred to the rehab hospital. Two days may seem like a minor inconvenience to you. But I cannot state strongly enough how much I was frustrated by and hated those mittens. I still can feel that sense of helplessness I felt when I was put into them and it still makes me mad.

Like I said, waking up over three days felt like a year or a minute all at the same time. It was a wild ride. At the end of the three days they put me in a wheelchair, then in an ambulance and took me to the most amazing place. The rehab hospital. Please Like, Comment, Follow!

[hell-and-rainbows]

Being in a Coma

Trigger warning! This post includes themes of helplessness & nightmares. It also includes happiness. Please read with care.

Being the person in the coma leads to a whole different set of circumstances & experiences. While I was in the coma I had my own version of what was happening and that was very different from the reality of everything.

Since they reduce the Propofol during the day, it means that the person in the coma usually has quite a lot of nightmares because terrible things keep happening to them, but they have no context for it.

I kept thinking that I was being kidnapped & experimented on by motorcycle gangs. It was horrifying. I would always work to escape, just to be kidnapped by another gang and experimented on. As is common, there is a lot of PTSD for people who survive medically induced comas and I had nightmares for years as a result of my long series of nightmares.

The thing is that bad stuff really was happening to me. I had horrible fevers, people were poking me with needles, I had a feeding tube. It was all truly awful so my brain was able to feel that there was too much reality to what I was experiencing to let it just exist in dream land and not come over into other parts of my brain.

The other super big problem is that I was tied down. My hands were tied down so that I wouldn’t pull out my breathing or feeding tube, but that just adds more to the feel of panic when they pull you a bit out of your coma so that your brain can function a bit better. You know that you’re tied down, which is definitely a bad sign for most people, so you try to break out of your restraints. They had to add these mittens to my hands so that I wouldn’t claw at anything, which just made everything worse. On the plus side, I know that I’m tenacious because I didn’t stop trying to escape the kidnappers or hospital.

One of the common nightmares was that I would always escape only to drown. My best friend, who was the only person who held my hand and talked with me regularly, would usually help with my escape in my nightmares. I would get myself out of the restraints, flee my captors, find a car to escape in only to end up drowning in a lake. It was the same damn lake every time and my friend, Lisa, would often be swimming outside of the car holding a sign showing me which way was up.

Just writing about this is horrifying. I don’t have the nightmares anymore, but thinking about them still makes them seem so real.

On the plus side, when I was further under the Propofol and less aware of what was happening, I had a lovely dream where I was doing research with Stephen Hawking on what would happen with the future of autism.

This is absolutely and without any doubt out of Stephen Hawking's purview. I have no idea why my brain chose Stephen Hawking of all people, I’m not even much of a follower of his work and I’ve done research with people who would have been much better choices, but for whatever reason, my brain gave me Stephen Hawking as a research associate and he proved to be capable in my mind.

A few months before my coma, both of my children had been diagnosed as autistic, which is definitely where the idea for the dream came from. I was wondering what we could expect from further understanding autism and how people with autism would affect the future. Both of my children have high functioning forms of autism, so I was mostly dreaming about how to best serve people on the high functioning end of the spectrum.

In my dreams I was traveling the world, interviewing people and giving lectures. It really was my dream life. Other than not being an expert in autism, it was exactly what I wish I was doing instead of being in a coma.

The thing I remember most clearly from my research dream is that I was in a food court in Japan (I’ve never been to Japan, so this was the Japan of my mind) drinking boba tea and talking with Dr. Hawking on the phone. It was a payphone for some reason.

He was telling me that I needed to wake up. I really didn’t want to and explained to him that I wasn’t finished with my research, but he was adamant that I needed to be awake. So I did.

I don’t know if this is what caused me to start breathing on my own, or if this is what someone was saying to me after I started breathing. Either way, I did wake up.

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[hell-and-rainbows]

[hell-and-rainbows]

When I Was in a Coma

The day after my 8 hour cancer surgery I ended up with ARDS (Acute Respiratory Distress Syndrome) from two antibiotic-resistant infections that I caught from the sketchy hospital where I had to have my surgery. This is the thing that killed most of the people who ended up in the hospital from covid.

ARDS is really bad, it means that your lungs go white, essentially you stop breathing. They were super worried about putting a tube down my throat through my mouth since some very expensive doctors had just spent a day taking my mouth apart and putting it back together. So they waited as long as possible before they intubated (put a tube down my throat) me.

This means that my blood oxygen level dropped really low, which is also super bad. We tend toward 99% blood oxygen most of the time. This means that our blood has as much oxygen as it can hold, which is what our brain & organs need to function. When blood oxygen drops below 90% we start getting into brain damage territory. My blood oxygen level dropped into the 70s, 60s & 80s all during the full 6 weeks of my coma.

Yep, you read that right. I was in a medically induced coma for SIX WEEKS. That is some long ass coma time for a medically induced coma.

Since my ARDS just got worse, not better, they eventually put in a tracheotomy so I could breathe, which allowed my mouth to heal while I was out.

A medically induced coma is when they give a patient Propofol, which is a drug mostly used for anesthesia. Because it aids in patient recovery, the doctors give higher & lower doses of Propofol during the day so the patient can often hear what is happening in their room, but they have no awareness of what is actually happening.

I had terrible fevers from the infections, so they would pack my body in ice packs & bags of ice to try & get my temperature down because a prolonged elevated temperature is another risk factor for brain damage. From the stories I was told I was packed in ice often for about a week, which makes me think that it would have been easier if they just had a freezer where they could put me, but that’s also called the morgue & they tend to avoid putting living people in there. :-)

Eventually they added a feeding tube to the fun that my body was experiencing, which is a tube they put up your nose and into your stomach. I was well full of tubes while the doctors were desperately trying to keep me alive.

Once my fevers stopped and I was stably not breathing they brought in a fancy piece of equipment from another hospital called a rota-prone. People with lung problems tend to do better if they are on their stomachs & they get fewer sores if they are moved. So this machine put me on my tummy and rocked back & forth in an attempt to give my lungs a chance to heal.

They still had to do lots of procedures on my lungs where they would go in and try and remove bits of infection & other sketchy stuff that got into my lungs. All the while I still wasn’t breathing, totally reliant on the machine & my blood oxygen levels continued to ping pong around the areas of bad news.

The procedures are important because they often leave a lot of scarring in the lungs, which causes future breathing problems.

So there I was for 6 weeks. Not breathing, being rocked on my tummy, surgery happening on my lungs, fed through a tube, oxygen dropping to dangerous levels.

This was not a great prognosis. They were assuming that I would be on oxygen for the rest of my life, if I lived. I may never walk again and I would likely be in a hospital bed in my home.

My ex-husband would be at the hospital, often the cafeteria,, but the only person who held my hand and talked to me was my friend Lisa, who sat with me and talked to me as often as possible.

My sister-in-law came out to help with my children and she read to me while I was in my coma, which I remember really well. It was so nice to hear her voice and the funny, chick-lit book she was reading to me.

I was not the poster child for someone who was going to leave and live any sort of lovely life. I was definitely the poster child for severe brain damage and likely wouldn’t live to leave the hospital.

Six weeks is a really long time for someone to be in a medically-induced coma. I mean really, really long. People tend toward two weeks or ten days. I was a long-timer by the time we got to six weeks.

The funny thing about breathing machines is that they stop working if the person on the machine starts breathing on their own. They also make lots of beeping noise when they stop working because they want to make sure that the person is in fact breathing and the machine isn’t wrong.

So they were basically waiting for me to pass away because I had been way too long on the machine, my brain was probably trashed and most people just don’t live through this kind of thing.

Then the machine goes off like nobody’s business, pulmonologists come running because I probably stopped breathing or something really bad happened since they had no indication that anything good would happen and they were long on the bad happening with me at this point.

But instead I started breathing all on my own. Six weeks after starting the whole coma nightmare more than that since my cancer surgery and I was breathing, which shocked the hell out of the doctors on staff.

Basically, it wasn’t supposed to happen. I was absolutely not supposed to start breathing on my own. I was most definitely not supposed to wake up.

But I did and it made doctors, Intensive Care pulmonologists no less, cry. I know this because I had some of them cry at me later, too.

Then I had to wake up and that was the really hard part. I was off in my own world, which I’ll share later, during the coma. But I had to work my mental ass off to wake up from that mess.

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[hell-and-rainbows]

When I Got Oral Cancer

In January of 2015 I had a really sore throat that wouldn’t go away, so I saw my doctor. She was unfamiliar with what she saw in my throat so she referred me to an ENT and this is where it all went bad in so many ways.

At my initial appointment, the ENT seemed very unconcerned with my problem. He gave my mouth a cursory look, and gave me something he called a ‘magic mouthwash.’ When this did nothing he just told me to try another course of the same thing. When that did nothing I made it my mission to get this thing in my mouth that was getting continually worse taken care of, so I made an appointment every week to see him when each thing he had me try failed.

He literally asked me at one point why I was continuing to bother him by making appointments. I replied that I still had something wrong with me and would continue to see him until it was better. He then told me that I probably had lupus as if that was no big deal and sent me on my way with yet another useless prescription.

In MAY (started in January) I was diagnosed with a rapidly moving oral cancer after he consulted with another doctor because my doctor wasn’t sure he should bother with a biopsy. At that point I was in SO MUCH PAIN that I could no longer speak and the only thing I could consume was Hagen Daz coffee ice cream. I’m proof that you can absolutely live on ice cream.

My take away for you is that if you think there is something wrong, keep going to the doctor or find another doctor until they figure it out. Do not give up, do not stop. You are valuable and deserve to have your issues properly seen to. We had exactly one ENT that I could see, so I was stuck with the moron who didn’t see why I would continue to bother him, but he did end up doing a biopsy in time to save my life, so that’s something.

I had exactly zero reasons to have oral cancer. I never smoked, chewed tobacco (which is the height of hilarity if you spend more than two minutes with me), drank and there was no history of oral cancer in my family, even though they definitely smoked and drank. My oncologist told me that I was unlucky (bad oncologist no cookie for you). I think I needed to get cancer so that I could see the train wreck that was my life, but you’ll get to read about that later.

They rushed me into surgery a week after my diagnosis since the thing with my kind of cancer is that once it spreads across the midline of your body, you’re dead. So they caught it when it was still millimeters from my midline. Thank goodness. I would rather be alive than dead, so this is definitely a good thing.

By the time I was diagnosed, the cancer had gone from a sore on the back of my mouth to the right half of my tongue & the floor of my mouth.

I went into the sketchy hospital in our city (you know, the hospital where it looks like it was cleaned once a decade and the staff looks tired and unhappy) because it was the only place in the whole metropolis that had the ability to do this surgery since I needed a micro-surgeon (not a tiny surgeon :-) just a surgeon that specializes in doing surgery in small places like a mouth) as well as other specialists. They did all of this in a super long surgery where they cut open my jaw along the midline on the bottom with a saw & flopped my mouth open like a Predator Alien from the movies. This means that I don’t have the ligament that you see when you clench your jaw on one side of my neck since they had to cut it to make the whole Predator analogy as well as the surgery work. This allowed them to remove a good part of my tongue & the right floor of my mouth.

The good news is that they replaced my tongue & the floor of my mouth with tissue & muscle from my ARM! Right?! You didn’t see that coming, did you?

Yep, they replaced part of my tongue as well as the floor of my mouth with my forearm, so I refer to that as my arm-tongue for obvious reasons. They also took a nerve & vein from my left forearm, so my arm is a bit wonky from this whole thing as well since it’s missing lots of bits. The skin graft that they used to cover my less full arm was a really thin bit of skin from my left thigh. Basically what fun is a surgery that doesn’t cover as much of your body as possible?

They found cancer in my lymph nodes on the right side of my neck, so they removed all of them since we don’t even want to talk about what happens when cancer spreads in your lymphatic system. So I also have a whole wonky muscular situation on the right side of my neck as well.

Let’s just say that there was a lot of nerve damage happening to my whole mouth/neck region on the right side as well as my arm. Fun, right?! Wait until we get to the next part.

I went into surgery, came out of surgery, woke up from surgery, was moved into a room, caught two antibiotic-resistant infections from the sketchy hospital and was put into a medically induced coma.

We’ll catch up with the whole coma situation in another installation.

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