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[marlodonato]

Sometimes getting Chiara to go to sleep is frustratingly but hilarious. She always makes us laugh! #lifeisbeautiful #tooCute #downsyndrome @changingthefaceofbeauty #love #syndromededown (at Bañalbufar, Islas Baleares, Spain)

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Chiara has done a good job of applying suncream to herself and all the under 4's at the pool; they all seemed to be impressed. #love #happiness #downsyndrome #sindromededown #downsideup #changingthefaceofbeauty #majorca #bañalbufar #guapa (at Bañalbufar, Islas Baleares, Spain)

[marlodonato]

I bought this hat for my daughter and she won't wear it... mine now! 😂 #badmother #womanchild

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Marlo Love taken by #maripol . I am so lucky! Thank you! #extraordinarylife

[marlodonato]

Another Chapter of book 2

Beginning of the End  “Would you want to fly to Tallinn?” William asked me. “Oh my God, yes!” I answered. I thought for a moment. “Where is it?” “Estonia,” he answered, laughing because I had agreed to go before I knew where it was. There are not many places on the planet where I wouldn’t want to go. I want to experience everywhere. I love traveling. A few weeks after he asked me, we were in the airport meeting William’s friends from work. It was the same group of friends we holidayed with in Germany. One of them was from Tallinn, so she was going to be our tour guide on this spectacular weekend break. Unfortunately, I came down with a severe cold a couple of days prior to the getaway. If you don’t know what it’s like to have a cold AND multiple sclerosis, well let’s just say each problem makes the other problem worse. I almost cancelled the trip, but the thought of ruining it for William made me pull myself together. Actually, the thought of ruining it for me played a part as well. It was spring of 2008, and I felt ill for much of the beginning of the year. I was tired of multiple sclerosis trying to deter me from doing what I wanted to do.

At the airport, we stopped in a pub for lunch. Everyone was drinking beer or shandies. “Do you want a coke?” William asked me. “I think I should have a stiff drink,” I answered. William chuckled. “Are you serious?” “Yes,” I answered quickly. “I need to kill this sickness. I feel like shit.” “Well if you feel like shit, I don’t think you should be drinking.” “Yes, I should. It’s a remedy,” I told him. “Please get me a vodka—Neat.” “Really? Who’s remedy?” “Yes, really.” I retorted. “It’s like a Russian remedy. Or no, it’s Croatian— I think. Whatever. Someone uses it as a remedy.” I was already sweating and had the chills. I thought if I drank, I could survive the flight, and kill the illness at the same time. William came back with a vodka straight up. His friends looked either impressed or worried. They seemed to think that I must like to start partying with the hard stuff early, so I just went with it. I knocked back the vodka, laughing and chatting all the time. It numbed my throat, and made me sufficiently jolly.

By the time we landed in Tallinn, I felt horrible. The vodka was one of my dumber ideas. I had a fever and my MS was flaring up full throttle. I could feel pressure on my eyeballs when I turned them and my vision was blurry. “I feel really sick,” I told William as we got in our hotel room. “You don’t look well,” he answered. He sat me on the bed and hugged me. The thought of Germany entered my mind; not leaving our room, whilst William went off with his friends. I suddenly became almost violent with grief. “Get away from me!” I blurted, pushing him away. “Marlo, calm down,” he said, looking hurt. “Maybe take a shower and you will feel better.” He tried to walk me to the bathroom, but I would not let him. The pain in my eyes was rapidly escalating to an intolerable level. I also had a terrible headache, and chills. I stepped into a scalding hot shower and fiddled with the knobs trying to make it hotter. Nothing was hot enough as I shivered with cold. I could not see my feet through all the steam. My eyesight became more blurry and the pains continued. I could no longer differentiate between what was steam and what was blurry vision. I bent down to the floor in horrific pain. Every joint was now aching as well. I started crying out of control. I heard William’s voice as he entered the room. “Are you okay, Imo?” “Am I okay?” I screamed. “Do I look okay?” “Marlo,” he started saying. I cut him off. “I am so tired of stupid shit happening to me! Every time I get sick, my MS turns into a mother fucker! Why can’t I be like everyone else? Why can’t I get a cold and take over-the-counter medicine like everyone else and just get better like everyone else? No! Instead, I have to go blind and get pains in my eyes like someone is carving them out of my head!” “I am so sorry, Marlo,” William continued. “But getting yourself upset is only going to make things worse.” “Get out!” I screamed. “Get the hell out and leave me alone! You have no idea what this feels like! You have no idea what this pain is like! I want to die!” I continued sobbing uncontrollably as I shivered on my knees in the shower. I kneeled there for I don’t know how long. I got out of the shower and threw up in the toilet. Vomiting made me feel slightly better. When I came out of the bathroom, William was dressed and ready to meet his friends for dinner. “Sorry,” I said solemnly, as I sat on the bed. “I feel so sick.” William looked bewildered. I started to wonder what I must look like from his point of view. “You must get tired of this,” I said. “I am just sorry that you always feel sick when we are on nice trips.” “I know,” I said. “I am so sorry.” “You don’t have to be sorry,” he said, sitting next to me. “It is not your fault.” I felt tears welling up in my eyes again. This worsened the pain. “I will tell everyone that you went to bed early,” he suggested. “No, no,” I protested. “You go down and I will meet you in a few minutes.” The second William left the room I burst out crying again. I believe that it was only anger and spite that got me up from that bed. I opened the mini bar and contemplated how much dumber I could get. I closed it and instead took triple the dose of cold tablets. I applied tons of makeup and got dressed. My eyes were red and glazed, but I decided I would just tell people it was from my cold; although half the hotel probably heard my mental breakdown in the shower.

And so for the next three days, we explored Tallinn. I refused to give in to the suffering that multiple sclerosis seemed to have in store for me on yet another trip, so in an effort to numb the pain in my eyes, I drank alcohol from morning until night. It was the only way I could enjoy the beauty of a city with eight hundred years of history. The medieval Old Town was my favourite, with tiny cobblestone roads, towers and gothic spires. There were beautiful churches and museums to explore. It made me feel like I was in a story-book. It is a city that I promised myself I would return to one day—without eye pain.

 Shortly after the break to Tallinn, William contacted a couple of well-known producers who were interested in a new song William wrote. The song was called Keep up the Fight. It was short, catchy, and I loved singing it. On the night that we met one of the producers, something else monumental happened. I believe I remember the exact moment that William and I started to let go of our marriage. Shocking as that may seem, somehow, the beginning of the end was upon us. This man who was my rock; my comfort; my hand through the glass; was somehow becoming someone else—someone not my husband. The evening began with us in our usual rehearsal room, waiting for one of the producers to meet us and listen to Keep up the Fight live. He was the same guy who produced music for Simon Webb, if you know who that is. He was coming to see if he would take on the project or not. He came in, along with a talent agent, holding a bag of beers. William and I looked at each other and winked, as we never drank during rehearsals. We were not that type of band. We always drank tea during rehearsals. But we both felt that we should probably say yes to the beers out of politeness, so we each took one. We played the song for him several times, each time changing it slightly, as per his suggestions. After some time, he told us that he loved the song and would take on the project. We felt elated, but didn’t want to look desperate, so we thanked him calmly. There were lots of “cool, man!” phrases flying around the room. “Shall we go out for drinks?” the producer asked us after the rehearsal. “Let’s celebrate.” I was dead tired. My eyes were still hurting since the trip to Tallinn, and I wanted nothing more than to go home and snuggle under a duvet. “Yeah, man,” William nodded, looking at me out of the corner of his eye. “Ab-su-fucking-lutely!” I agreed. Oh god, Marlo. I thought. How are you going to get through this? Once I got to the bar, I was fine. I sat down drinking Guinness and getting excited about the project we were about to embark upon. This was what William and I wanted. This was exactly where we wanted to be. We wanted to be in London working with top producers, and that was what lay before us. We had worked hard for so many years. It seemed like perhaps all that work could now pay off. We felt like the sky was the limit. I certainly felt that my MS was not going to slow me down anymore. I would happily run myself into the ground. I would compromise my health in order to find success in the music business, if that is what it took. Walking home that night, with our equipment in tow, William and I talked about the future. And that is when the moment came; a tiny moment where the fate of our marriage seemed to rest on the edge of a knife. A thought popped in my head. “William,” I whispered, stopping on the pavement. “If you had to choose between the band making it, or our marriage making it, which would you choose?” He paused for a moment and looked down. That pause told me everything I needed to know. I knew right then and there that he felt the same as I did. “Because I choose the music,” I stated. “So do I,” he agreed. We stared at each other for a moment. It was just approaching midnight, and a proverbial earthquake split the ground in Balham—the ground between us. We divided at that very moment. “But we won’t ever have to choose,” William declared, and we continued walking. “No, never,” I answered, wishing to believe my words. “Never.”

[marlodonato]

Hot Chocolate and a Scooped out Toasted Bagel By Marlo Donato

Jesus Christ, I thought, getting off the ‘F’ train at 54th Street. These mornings suck. It was a Thursday at 7:40am, and I had already been awake for two hours. One of those hours was spent in a crowded train, crammed next to other commuters from Long Island, who were breathing the same overbearing amounts of dry heating that I was. It sounds blasphemous, but I always loathed mornings. That glimpse of first light that penetrates a crack in the blinds or an area of the curtain I forgot to overlap. It has always made me want to vomit. Twelve noon would be a more civilised hour to wake from a cosy bed. As I got out of the subway station, the sting of bitter NY winters hit my face abruptly. NYC is like Antarctica in February. The wind was picking up and I quickly looked at all the people with scarves wrapped not only around their neck, but around their face. A few men had ski masks on. Fashion faux pas, but who could blame them? Against the violent wind, and occasional Japanese tourist, I made my way up Fifth Avenue. I suddenly felt my phone vibrating in my bag and contemplated whether I should take my gloved hand out of my pockets to answer it. I figured it had to be Carolyn calling, so I decided it was worth picking up. ‘H—he—hello?’ I said in my I’m freezing my ass off voice. ‘Hey, Marlo,’ Carolyn answered cheerily. ‘You sound freezing! Are you almost here?’ Just the sound of her voice brought a smile to my frozen face. ‘Almost,’ I answered, my lips sticking to my gums in the cold wind. Carolyn continued with her usual directness and urgency that made me love her from day one. ‘Now,’ she said. ‘I stopped by the diner on the way in and got us both—’ Suddenly the wind picked up and I couldn’t hear a single word she said. ‘I ca... ca... Can’t hear you,’ I chattered into the phone. ‘I’m at the door anyway. S... See you in a minute.’ I was walking through the side door of Chanel on 57th Street. As I passed the security and made my way down the back staircase, I started to thaw out. I walked through the corridor that leads to the break room and locker area. I did so with great anticipation. I already knew what Carolyn was going to say on the phone. When I heard the word, ‘diner,’ all was made clear. She had gotten us hot chocolate, accompanied by two scooped out toasted bagels with scrambled eggs and cheese. When I thought about it, my whole morning changed. I no longer loathed the mornings, or at least not this morning. This morning I felt lucky to be alive. I was lucky to be alive and know Carolyn Smith Pittel. I was lucky to work with someone who went out on a bitter cold morning to buy me hot chocolate and a scooped out (less bread equals less calories) toasted bagel with scrambled eggs and cheese. To me, it was ‘cosy’ in a bag. A fuzzy feeling of warmth swept over me. It reminded me of the days when I was seven or eight when we would get heavy snow storms that would cause the schools to close. Having heard the hopeful news reports the night before, I would get out of bed in the morning and look out the window with bated breath. ‘Yes!’ I would whisper when I saw the snow was covering our lawn chairs. I would crawl back under the covers of my bed and shout down to my mom, who was making breakfast with the radio on. ‘Is it closed?’ ‘Not yet,’ was what she usually said. ‘But they are going to give another list of schools in a few minutes. It is still snowing, so I don’t think they’ll open it!’ I would wait in bed, contemplating all the cosy things I would do that day. I would have hours to do what I wanted instead of what some teacher wanted. I would sleep for a couple more hours. Then I would have lots of hot chocolate and play with my Barbie dolls. Maybe Barbie would go to the hair salon that day. The possibilities were endless. I would wait for the sound of my mother turning off the radio and walking towards the stairs leading to my bedroom. This was what I was waiting for! ‘Marlo!’ she’d shout up to me with excitement in her own voice. ‘It’s closed!’ There are few feelings in this world that are as good as I felt on those days. What compares to being safe and snugly under a blanket? To be in a warm house that was stocked with food and hot chocolate mix. To have a mother who would make you the food and hot chocolate. These were the days when I was happy to be alive.

I entered the break room and peeled off my coat, then my gloves. I ran my hands under warm water to defrost them. Next, I removed my heavy wool sweater, followed by a turtleneck. Under that was a tank top that I decided to keep on in case the shop was cold. I used the phone in the break room to call up to Carolyn, who I knew must have been on the sales floor by now. As the phone rang, I looked at the staff message board. I saw the flyer I had put up the week before. Hi Everyone! We have an exciting event at the makeup counter next week! We will be introducing the new lipstick colours. Please invite your clients for a makeover. We will be booking half hour slots! Thanks! Carolyn and Marlo

Carolyn picked up the phone. ‘Good morning!’ ‘Sorry I couldn’t hear you before,’ I said. ‘It got so windy!’ ‘No problem,’ she answered. ‘You probably know what I was going to say anyway, right?’ ‘You bought hot chocolate and scooped out bagels with scrambled eggs and cheese?’ ‘That’s right,’ she answered, laughing. ‘I’ll be right there.’ I slipped on one of my four inch Chanel heels and made my way to the sales floor. The cleaning staff was vacuuming the ivory plush carpets. I walked past the endless glass shelves stocked with beautiful bags and scarves adorned with the ‘CC’ logo. The glass cases were filled with artful displays of rings, necklaces, wallets, and key chains; all of them costing more than I could afford. I walked past the display of beautifully coloured silk scarves and at last arrived at the cosmetic counter. There was Carolyn. She wore a beautiful smile from ear to ear; a smile that was always painted in the latest and shiniest gloss. Carolyn was petite with long blond hair and blue eyes. She was a fireball of energy and used to tell me that she woke up each morning like that. She ‘sprung out of bed,’ a concept that I could only dream of. ‘Here you are,’ she said handing me my hot chocolate. We both giggled like school girls. I looked around the counter. A gigantic bouquet of fresh roses was in a crystal vase by the Chanel No5. The glass shelves and mirrored walls had not a streak of dust or cleaning cloth streaks. The lipsticks in the display cases were brand new and untouched. The brushes that we used to apply makeup were freshly washed and ready to assist us in working our magic. All that was left to do was set up chairs and work stations for ourselves and the two other artists who would join us at ten o’clock. We were makeup artists at one of the finest boutiques in New York City. We were having one of our many successful events that day. In a few hours, we would have New York’s wealthiest socialites, tourists, and actresses at our counter asking for our professional advice.

‘Today is going to be great!’ Carolyn said in her usual enthusiastic tone. ‘We have so many people booked.’ I nodded my head in agreement, busy chomping on my bagel.  I knew the bitter cold would not stop New Yorkers from coming to our event. Suddenly we heard a gust of wind rattle the front door of the boutique. We looked at each other and smiled. In a couple of hours those doors would be open and the shop would be filled with staff and clients alike. The day would no doubt go by very fast, and Carolyn and I would probably not get a lunch break as was usual at these events. But in these moments of our quiet morning, time went slower. The world was freezing and chaotic outside. But inside, at our luxury counter, we were warm and cosy. It is at moments like this, that I am happy to be alive and so happy to be a New Yorker.

[marlodonato]

Awkward Bitch 2 (unedited chapter 2) By Marlo Donato

Dracula and a Wee  “I heard shrieks coming from the bathroom,” William later told me. He was shaking his head and smiling.  “I just stood there laughing to myself.” “You knew what happened?” I asked. “Of course I knew.” “Was I loud?” I asked, giggling. William smiled. “You were VERY loud. The whole airport heard you.” I turned to Laura. “Was I THAT loud?” “You were VERY loud,” she concurred, giving a half smile and running her hand through her long hair. Well of course I had to scream loud. You see, William and I had booked a holiday, along with my good friend from New York, Laura, and her boyfriend, Mark. This wasn’t any ordinary holiday. It was um —well—a Dracula themed tour through Transylvania. And guess what else? We were spending Halloween there too. Laura and I had been obsessed with vampires since we were thirteen; vampire films, shows, books, etc. We were the part of our generation that fantasised over Lestat. Anne Rice was a god to me. I saw Buffy the Vampire Slayer air for the first time ever when it was a pilot. I remember my mother saying, “Marlo! There’s a new show on tonight with those vampires. It looks like something you would like; it’s called Buffy the Slayer.” By the way, Laura is the one who I brought to William’s shop when I first met him. The one who I told I was going to marry him. Everyone going on the tour was to meet up in Budapest, Hungary. William and I arrived a day early and slept in this enchanting city. The next day, the tour bus picked us up, along with about ten other people. There were a few more people arriving that day, and Laura and her boyfriend, Mark were amongst them. We went to the airport to pick them all up. As per usual, I had to use the toilet after thirty minutes and there wasn’t one on our mini bus. I had not seen Laura for a few years, and the thought of seeing her ever youthful face filled my heart with excitement. Going to Transylvania with her was going to be a holiday of a lifetime. And here we were about to do it with our men by our side. So when I walked into the bathroom, low and behold, who comes out of one of the stalls? The excitement of seeing my long-time friend pop out of a bathroom stall in an airport in Hungary was overwhelming. I started screaming! I think I almost picked her up when we hugged. She is light enough.

We chatted away as we boarded the bus and began the journey towards the Tokaj wine region, our only stop in Hungary, before crossing the border to Romania. We were stopping at a well-known winery for a wine tasting and lesson in grapes. If you have the opportunity to taste a Tokaj wine, do it. You won’t be sorry. At the winery, I was explaining to Laura why I could not fully partake in the actual tasting. “I can barely have tiny sips,” I explained. “Every time I drink wine, I get a urinary infection.” “Oh no,” she replied, cringing. “Yeah, and I get them really bad,” I told her. “My wee turns to blood in seconds.” She winced. “And if that wasn’t enough,” I continued with dramatic flair, “When I get an infection, my MS either flares up badly, or I have a relapse.” “Oh my God,” she replied, shaking her head. “Does everyone with MS have these problems?” “Well, not everyone with MS gets urinary infections, but we are definitely prone to bladder problems in general. But for sure, almost everyone who I ever speak to has the same experience with infections leading to relapses. It could be a cold, a sinus infection, whatever; each time, they suffer a relapse or a flare up.” “That is awful.” “So awful,” I nodded. I wanted to tell her more. I wanted to tell her what happened on the flight to Hungary. I looked around the long table we were all sitting at. It was a heavy looking wooden table nested in a cosy stone vault. I loved the setting. Everyone was chatting with people they just met as they tasted the wines, getting a little tipsy. I realised that this was not only a wine tasting, but a great ice breaking exercise for the group. “I will tell you the rest later,” I told Laura, realising it was neither the place nor the time. I thought to myself about the flight. For the past few weeks, I had been having a problem weeing. Every time I went to the toilet, I would end up sitting there for ages. It was like stage fright. You know that feeling when you go into a public bathroom and there is only one other person there? I hate that. You sit there (or stand there) anticipating the other person listening to your wee hit the porcelain— or am I the only one who thinks that? Our flight had become a urinating nightmare. My bladder was full so many times, and each time I was in the toilet for well beyond the courteous passenger time allotment. I was sweating by the time I came out. For one of the trips to the toilet, I brought my make-up bag as an alibi. In retrospect, I am sure no one was paying attention. But I felt like everyone noticed, especially since I got up four times during a flight that was less than three hours! “Jesus, that woman is back in the toilet, again?” The final time, I brought a toothbrush in, so it would look like I was really into hygiene. I did brush my teeth whilst sitting on the toilet and found the distraction quite helpful. William was empathetic to my problem, comforting me each time I returned to my seat. “It’s okay,” he kept whispering, squeezing my hand.

Just thinking about the plane scenario made me want to wee. We continued tasting the wine, although I pretended for most of it. I certainly did not want to risk getting an infection on this holiday. I talked to a couple sitting next to us, trying to put all my weeing fears in the back of my mind. After the tasting, we continued the tour of the winery. We walked through vaults filled with barrels of wine. I had never been to a winery before, which was a shame because Long Island, where I am from, has several of them. It was a wonderful experience. Back on the bus, I had a million questions for Laura. I wanted to know all about her current job, her apartment, and what was on her book shelf. I did not want to talk about multiple sclerosis. When we crossed the border into Transylvania, Laura and I smiled at each other. Both of us having a sense for the eerie and dark, I think we ignorantly thought that our tour would have some mystical effect on us and the thrill of it consumed us.

As night fell, my ears focused on the sound of the bus’s engine. The road we travelled was white with frost and a dust that seemed to float above the ground. The churning of the wheels and the mist outside the windows added to the creepiness. Out beyond the white canvas that was visible from our headlights was just pitch black darkness. “Laura,” I whispered, “Imagine breaking down out here?” She laughed nervously. “That would really suck,” I said under my breath. The whole bus was quiet. Everyone was either sleeping or looking out the window, thinking the same thoughts as me. I thought about how the bus did not have a toilet, and I started to sweat. I panicked about having to wee and then panicked about not being able to wee. I was also terrified that if the weeing problem was part of a relapse then maybe more of the relapse was to come. I was partly scared because of a recent experience: We had been to Germany for Oktoberfest, the month before. William worked with a cliquey bunch of people who frequently planned holidays together, and boy did they have energy. As well they should, as they were all in their twenties! We headed to Munich on a day that I was feeling the dark cloud of MS hanging over my head. Luckily, we were not flying over with the rest of the group. This was pre-planned because they were camping there, and needed an earlier flight. I like camping, but only very specific camping—the scenic and clean kind. There has to be beautiful wilderness, and or streams, lakes, waterfalls, etc. If it is within a city, I don’t do it. If there are bands playing and people dancing merrily in mud, I don’t do it either. Some might think I require a toilet facility, but that is not the case either. That only brings more filth and bacteria, and relying on someone to clean it. No, I will take an open field and the open sky any day. “I don’t do dirt,” were my exact words to William. So, as his friends set up their camping gear somewhere in the city, William and his diva bitch were headed to a hotel. As we got to the hotel, I was feeling worse than on the flight over. I was past exhaustion; I was falling asleep in my stance. My vision was starting to double and I had a pain in my face. The feeling of screwdrivers shoved up the back of my eye sockets had returned for maybe the tenth time in my life. All I wanted to do was lay down. When we entered our room, William fluffed the pillows and told me to take a nap and see if I felt better. I napped for a couple of hours. I only woke up because he was touching my head. “Are you feeling better, Imo?” he asked. No, that is not a type-o. William had a nickname for me, and it was “Imo,” pronounced EE-MO. I had one for him, and it was “Papa”. Even years later, I have a lump in my throat typing that. “I feel worse,” I told him, truthfully. I started crying. “I am so sorry.” He rubbed my head and told me it was okay. He explained that he had been texting with his friends and they were waiting for us inside one of the beer houses. “I can stay here with you, no problem,” he said, comforting me. “Absolutely not!” I told him. “You have to go.” I was concerned about him not having a good time because of my stupid illness, and his friends thinking that I was just being a bitch and not wanting to come out. With a lot of persuasion, William left around one pm. I hid under the covers for another couple of hours. William texted to let me know he was in the epicentre of the activity and having a gigantic beer called a Stein. I was in too much pain to laugh. I turned on the TV. After watching vacantly for about two hours, I was reminded why we did not have a television at home; I started watching aimlessly, surfing channels and landing on the dumbest programs. I was glued now to programs about the process of automation. I had stumbled upon a channel of twenty-four hours of factories. I do have a fascination with this. It somehow amazes me how a product can go down a conveyer belt and be heated, swirled, chopped and packaged by machines. I particularly love watching sweets or gum being made. I was watching everything from cakes to cars. I decided to flip through more channels, and got stuck on a twenty four hour porn channel as well. Do you know the worst part? I wasn’t even turned on! The fact that most of the films were low budget didn’t help. I began focusing on the bad makeup and horrendous sets. Uh! I thought. Who would have sex on a carpet like that? With that wallpaper!  Then I started shouting at the television. “Look at those nasty shoes! Did the ad say, ‘Porn actress needed—bring your own cheap shoes’? I mean, there is low budget, but this is NO budget!” I looked at the clock on the TV and it was nine pm! I had been watching these two channels for six hours! It got to the point that they were interchangeable. The pistons would be frantically working, whilst some woman got pounded, and then at the end, a cherry was placed on her head, and she was boxed up with cellophane. “What the hell am I doing?” I groaned, turning it off. I crawled deeper under the covers, feeling sicker and disgusted. I woke up when William came in. I could smell food. I had been shut in that room with only snacks that we had from the airport and the mini-bar. The hotel did not have room service, but I hadn’t been hungry until now. William was carrying a plate; an actual hot plate stacked with food! “Room service,” he joked, in a bad German accent. My heart sank at the sight of him and the love I felt for him. “How did you get that?” I nearly screamed with excitement. “I told the waiters in the restaurant downstairs that my wife is very ill, and could they make a vegetarian plate.” These were the moments that William was famous for. He was my bestie; my best friend ever. He took such care of me.

So, I looked at William, sleeping next to me on the bus, and put my head on his shoulder. (Yes, we are now back in Romania. Stick with me.) Even if I got sick on this holiday, he would take care of me. 

Never in my life had I viewed scenery like the landscape in Transylvania. On one hand, it was dismal, as it was the beginning of winter. But it was also hauntingly beautiful. We travelled to incredible cities that I didn’t know existed. I was ignorant to cities like Cluj-Napoca, filled with University students scurrying around baroque, gothic, Renaissance and neoclassical buildings and little coffee bars. I secretly wished that I could have attended University there instead of in Queens, NY. My favourite city was Sibiu. This was another city, that I could picture myself living. There is so much rich history and culture. My mind was filled with what I was learning of their art, poetry, religion, architecture, etc. It was eye-opening. If you have not heard of or seen these cities, then I suggest you book a flight immediately (or at least google them). One of the most memorable places we visited was The Merry Cemetery in Sãpânta. It is probably the most colourful cemetery on this earth. The headstones, which are not stone at all, but wood, have vibrant pictures that represent the life of the person buried. If my memory and research are correct, the point is to celebrate death, as a birth into the next world. Therefore, the joyous occasion should be marked with plenty of colour. There was a lot of blue. We were enjoying the merry place when of course; I had to use the toilet. The toilet was in a tiny building that looked like it was about to collapse. There was an old woman sitting on a chair outside. I figured she was just an old woman resting on a chair. As I passed by her, she called out angrily in Romanian. Her hand was cupped and reaching out. I had no idea what she was actually saying, but it was obvious that she wanted payment for using the toilet. I looked at William. “Does she work here?” I asked. “Probably not,” he laughed. “Should we pay her?” “Yes,” he answered, producing a coin from his pocket. She frowned and started raising her voice. William pulled out another coin, which seemed to please her. I went in, as she grasped the money from William. This is bizarre, I thought, as I entered the cubicle. The door to the cubicle was like a front door of a house. There were many glass panes, and several of them were broken. It made me feel uneasy. I lined the toilet with a thin, pink loo roll, which seemed to be the Romanian favourite. We had seen it at every truck stop and restaurant. I sat down and tried to relax. There were only two cubicles, so I knew people would be waiting. I waited for the wee—and waited. Nothing. My bladder was full; bursting, in fact. I started sweating. I tried to hum to myself. I decided to give up. I had to get off the toilet and go somewhere else. I had no plan, but I could not stay in this bathroom and not wee. Minutes had gone by. As I was giving up, a miracle happened— Through the broken window pain, came a hand. It was the big, comforting hand of my husband. He knew I was struggling, paid the lady extra for his bathroom entry, came in and reached his arm through the broken glass. I reached up and grabbed his hand. He squeezed it. I closed my eyes, and out came the wee. 

On this tour, we were lucky enough to also see rural areas, and places off the beaten path. We stopped at one such place where we met a man who was known for making wood carvings. We stopped to watch him work, and to look at his wares. His woodshop was part of a farm. Or at least I took it as a farm. There was a pig. I met him— As we watched the woodcarver at his craft, I realized I had to wee. I was getting angry with myself, because I had to wee every second of this trip and it interrupted everything. I asked Sorin, our tour guide where the toilet was. He pointed to an area where the pig was. I looked at William, who cracked a small smile. “Oh my god, please come with me,” I whispered. “Of course,” he said. “You will be okay.” He held my hand, and led me near the pig, which started squawking when he saw us. “There’s a toilet here?” I asked in disbelief. “With the pig? Like WITH the pig?” William led me to what can only be described as a small one person (one short person) shack with a hole in a box. “Jesus,” I said as I stepped in. “Please stay nearby,” I begged William. “I think the pig is not happy with me here.” “I’ll come right back,” he said comforting me. “Okay, but come right back in one minute.” Or fifteen minutes, by the time I piss, I thought. The shack was made of slats of wood that were no longer holding up. There were cracks everywhere, letting in the extreme cold, wet air outside. “Nice little piggy,” I whispered. I couldn’t concentrate on weeing, as the pig started squawking louder. It would seem that a chicken or a rooster (I have no clue which) began clucking around him. A full-fledged animal argument was kicking off. Through the broken slats, I could see them dancing around each other. I almost screamed, and had to hold my hand to my mouth. My heart was racing. I became increasingly terrified. I could feel beads of sweat on my forehead, as I tried to block the angry animals out and make myself wee. Nothing would come out. Please, please, please! I pleaded with myself, trying to block out the escalating pig and cock fight. It just couldn’t get worse— So of course it did. I heard a growl from behind me. Yes, another animal had joined the argument. I could not see what the animal was, but it sounded like a large dog. I looked through the slats to my side, and saw that a rickety wooden fence was all that was holding back this mystery beast. “You’ve got to be kidding me,” I murmured. He was growling and throwing his body against the fence. Each time the fence took a blow, it seemed to come closer, ready to cave in. Jesus, he is coming through the fence. He can’t come through the fence, can he? Of course he can come through the fence! It’s buckling! Just pull yourself together and wee! It was like a symphony around me; a symphony of mad animals. Squawk, squawk. Grhhhhhhhhh. Cluck cluck cluck! Piss, God damn it! Piss! I looked at the little sheets of pink paper for some sense of comfort, trying to pretend I was on a porcelain toilet. I hummed to myself and blocked out as much of the animal sounds that I could. I saw William’s face in my mind’s eye. I saw his comforting smile and his outstretched hand. I held my right fingers in my left hand, pretending it was William, and alas—wee.

And then there was the day the bus broke down in the Carpathian Mountains. After hours of being stranded on the bus, I needed to wee…

by Marlo Donato

[marlodonato]

It can always be worse. I always think of my friend Tanya saying "chin up and tits out, lady" #ms #thinkpositive #multiplesclerosis #fuckms #dontworrybehappy #chinup #cuto (at London, United Kingdom)

[marlodonato]

Our bodies are water and wires...it is no wonder so many things go wrong. #ms #multiplesclerosis

[marlodonato]

#bondstreet tonight #itsbeginningtolookalotlikechristmas #London Love this great city!

[marlodonato]

So, doctors tell you to be afraid to have a child with #downsyndrome #ds Does this look like my child is having a shitty life? #changetheworld #changeperception #t21

[marlodonato]

Me in a reflective moment. What do you want to do with the rest of your life? What do you want to be? What is your real purpose? What truly makes you happy? What are your passions? Are your passions a huge part of your life? Or just a dribble... Time runs out. But time does not even exist... #passion #selfreflection

[marlodonato]

Smile, though your body's aching?

MS has turned me into a liar…and a tired one.

I find it frustrating when people who don’t have multiple sclerosis talk about how tired they are, or when my husband says, “Who’s turn is it?” to do the 3am bottle for our youngest child. Arghhh!!!! But hey-ho, such is life, and I try to get on with it, as I don’t want to mention MS all the time. But that brings me to how I have become a liar, and how that has made me even more tired…

When people ask me how I am, my immediate response is “Great! How are you?” This is my answer every day; every time. And let’s face it, there are days when I am not so great…

I live in chronic pain.

Even typing that sentence makes me want to hire a string quartet and sing “Poor Marlo. Children are starving in other countries and you are complaining about your silly pain.”

I want to pretend it is not true. Furthermore, when people ask how I am, I don’t want to give them a story, when that probably was not what they were looking for. Then there ARE those who stop me to really ask how I am. They are actually looking for the story. I keep smiling at them too, saying, “Yeah, I am so great. Really. Truly. I could not be better!” Meanwhile, I am on epilepsy drugs trying to dampen the nerve pain that goes down my whole left side.

There is a coffee kiosk I pass every day, and when the wind is strong, the pain that goes down my side gets worse. On some days, it takes my breath away, and I have to mentally coax myself to walk to the train… And every day, the man who owns the coffee Kiosk comes out and says "hello, how are you?" Every day, I give him my biggest smile, telling him how well I am and to enjoy his day. I get to work, I do the same. I buy my lunch, I do the same. I talk to my mom on the phone, I do the same. I assist clients, I do the same.

I never stop pretending and by the middle of the day, my head is ready to explode sometimes. Continuing life as normal is essential in many ways, but constantly pretending you are ok, and continuing every daily task with a smile is exhausting. Sometimes it seems to take double the energy of just saying, “Nah, I am not that great, actually.”

I pretend so much, that sometimes I fool myself. I forget that I have pain and other ridiculous MS problems, until I get into bed at night….completely spent, and whisper to myself, “fucking hell, Thank god this day is over.” And so my ‘normal’ MS fatigue has become even fatiguier (new word. Just made it up!) with my lying...

But what is the alternative? Being a downer? No, it is not rhetorical. I am really asking you.

[marlodonato]

I swear I am working on it. ..

[marlodonato]

View from inside #blackfriars station #shard #londonbridge #thames

[marlodonato]

Spite

Spite is something that people usually think of as a negative, but I use spite in my life as a positive. I have used it as a weapon of mass construction since I was little. I have constructed a life around it, in fact.

I can't remember a time in my life when I didn't hear the words 'You can't do that,' and didn't think, YES I CAN. AND I WILL.

It has always been this way.

It came up again this week, when a friend of mine was asking me to interview for a position at her company; a position that I am qualified for.

I was telling my mother about it, when she said to me...'oh, I don't know about that. It sounds like a very big position. Would you really be able for that?'

Well, any doubt that I had in my mind was suddenly replaced with anger and spite. 'I will do it if I want to do it,' I told her.

She went on to tell me that she worries because I have MS...

Ah, yes...MS...That little fuck of a disease in my brain...The reason people tell me I am so lucky that I work and have a career.

Yes...MS...the reason I should be scared and just be grateful for what I have...NOT!

  I have had a pain in my eyes every day for the entire summer...I get up and go to work anyway...why? SPITE!

I have a pain in my leg and weakness in my hand, but I pick up my toddlers every day...In fact, I let them jump on me and pretend I am their horse and they giggle...why?  SPITE!

My under eyes have been dark for weeks because I have not been on any MS medication in over 7 months...So I bought a new Chanel concealer...why? SPITE!

Had I let MS stop me from what I wanted to achieve, it would have taken even more than that.

My mother inadvertently  gave me just the fuel I have been yearning for to advance my career. If MS is going to tag along with me for the ride, then this ride is going as far as it can go. Anyone who thinks I should not continue climbing the career ladder because of MS is wrong. I want to achieve a certain amount in my life, so while this roller coaster is still in operation...I am going to take the loops...In SPITE of what people...or MS think I should do.

[marlodonato]

Websites that promote affairs?

  I am one of those people who is not easily shocked. Ever. But I must admit that I saw something this week that shocked me.

It is a website devoted to promoting affairs. Their tagline is "Life is short. Have an affair."

I almost fell off my chair. I mean, really? How much bad karma can you accumulate starting or using a site like this? There are categories you can choose from to discreetly peruse through other married people you might start a dangerous liaison with.

How wonderful...

NOT!

Affairs are no laughing matter, and to treat the act of lying to a spouse so blasé is appalling. My first husband had an affair for eight months, whilst I was completely oblivious. he was so clever in his orchestration, that I missed the secret phone calls, the secret meet-ups, the secret presents he bought her, and the secret dinners...And I was around! I was not off on business trips for half the year.

The pain that I felt when I discovered this was immense. There were so many feelings, that it is hard to pinpoint which one stood out over the others. Was it the shock? was it the depression? maybe the hatred, the grief, the hurt? the rage? the confusion? the inadequacy? the devastation? Hmmmm.....let me think...

It is not only the spouse who gets hurt. It is often other people around, including children. I know many people who have parents who have had an affair, and the pain they experienced from it is there, and often not dealt with properly.

I can tell you from my own experience, that parents of people who cheat, also get hurt...

And you know who else gets hurts? Who else becomes emotionally and spiritually depleted? The actual person having the affair.

I know plenty of people who had an affair. Most of them are not callous about it. Most were unhappy, and rightfully so, in a bad relationship. Most were lonely, and one thing led to the other. And most are not that happy about it. I am not judging these people. But I AM judging anyone who uses a site like this.

Affairs are a lose/lose decision.

Anyone searching a website that tells you life is short, have an affair, should be googling marriage counsellors or divorce lawyers instead. Maybe google how you can help someone else in need. If you are that unhappy in your situation, then consider throwing your energy elsewhere. Do something positive.

Why would people want to deplete themselves AND someone else who probably has a family? Websites like this give people permission to hurt other people. And hurting other people sucks.