It all started with a stomach ache... It was Febuary and our family had gone to Swiss Chalet for dinner and I remember being not that hungry. I thought this was odd as I was an 11 year old duel rep athlete who enjoyed a good meal. I simply ordered the pierogi appetizer and was done after two. My stomach began to hurt and I packed the rest of my food in a doggy bag I definitely would not end up eating.
Later that day my symptoms developed into more of a flu. I ended up being off school very ill for a whole week; this had only every happened in grade 2 for the chicken pox nightmare. I got better and could eat normally for a few days, I attended school and my sport trainings and everything seemed fine. Then the stomach aches began again, accompanied by vomiting and a mysterious fever that seemed to only appear in the late afternoon. It was not cool. My mom took me to my family doctor who said I had a virus and to ride it out, he assured us I would get better. This cycle went on for three weeks. I would be ok for a day or two, then sick for a day or two, I would be okay in the morning but have a full blown fever by 5 o clock. We would go to my doctor every Monday who would assure us I would be okay. It was probably “just a virus and acid reflux.” Quack. It was the day before March break and at this point I was 88 pounds and very ill. My father had planned a trip to California for me to meet a special softball pitching coach and was still very adamant in taking me despite my symptoms. He took me to the doctor to ask his opinion and naturally my quack doctor answered that I would be fine, I should fly to California and enjoy my vacation. The rest of that day I wasn’t able to hold anything down. My throat was so incredibly sore at this point it was hard to even want to try to swallow anything. It was 2 am and I violently projectiled the juice I had attempted to drink hours earlier out of my body. My Mom was a nurse as Sick Kids and was officially fed up. She decided to take me to her hospital ER which was the smartest decision she’s ever made… We drove to Toronto and parked in the underground lot. I rested against the railings of the elevator as we ascended to the hospital level. The doors opened and I pushed myself off the wall. As I began to take a few steps my vision completely darkened. I panicked and remember saying “I can’t see.” A moment later I opened my eyes and I was laying on the floor. My mom was kneeling down beside me saying “it’s ok.” I slowly sat up with her assistance and could see the parking elevator we exited a good distance away. I was so confused and asked how I got there. She said I walked with her there, then gently laid myself down. Apparently it was the most “careful passing out” she’d ever seen in her life. It was at this moment I started to realize how incredibly aware my sub conscience was, I thought it was cool. My mom went and got me a wheelchair and brought me the rest of the way to the Emergency Room. I wasn’t taken very seriously at first. I remember the doctor being very snide with my mother asking her “why would you be here at 3 am with a 3 week old problem?” It was also really crappy timing that a fellow basketball teammate of mine was also in Sick Kids for anorexia and I was 88 pounds with weird symptoms. They were asking me questions like “so you don’t like to eat?” Which is laughable to person who has actually moaned into a chocolate chip cookie before. I tried to explain how much I LOVE to eat, it was just very painful to eat. Then when I did eat it didn’t stay in me long and had two very violent exit points. So I was put on an IV and tests were ordered. I ended up having to spend the first 24 hours in the ER waiting for a room to become available on a floor. That’s when the blood work started. I was always a kid that could get needles but was never really ok with them. I began counting the amount of pokes I was getting and after 2 days I was up to 50 and stopped counting. An ER doctor mentioned after a simple exam that he noticed something behind my eyes and would be sending me to the optometrist for further tests. I remember my mom jolting to attention at this. She did not look well. Being a nurse she always seemed to know what horrible things they were testing me for and was so good at trying not to freak me out too. At this point they were thinking brain tumours. She revealed this with a big sigh after the eye doctor didn’t find anything behind my eyes and it was concluded that my cognitive function was normal. It was now around the time I would’ve been on the airplane flying to California. A nurse came to get me for a test and I got out of bed to transfer in to the wheelchair she had. As soon as my right foot hit the floor I collapsed in agony as shooting, twisting pains began to surge throughout my leg. It felt like the worst charlie horse I had ever experienced, but it wouldn’t go away. My Mom helped me back into bed and pulled up my hospital gown to expose my right leg which was double the size of my left. She touched it and said, “oh no it’s hot.” Her and the nurse looked at each other knowingly and the nurse exited the room to bring to light this new info to a doctor. My mom, having experienced the exact same thing in the exact same leg, knew it was a deep vein thrombosis, or major blood clot. An emergency ultrasound revealed it ran from my right knee all the way up to my liver in a major vein. I was given blood thinner injections and a crash cart was placed in front of my room. That’s when I knew shit was real. I was put on bed rest and not allowed to get up with very minimal leg movement as to not disturb the clot. So as to not “have part of it break off and go into my brain, lungs or heart causing a stroke…” This was all very daunting to an 11 year old. I even remembering thinking isn’t that old people problems? It got even more intense upon the realization that if my mom hadn’t brought me to the hospital that night, my Dad would’ve followed doctors orders to take me on a nice vacation. I would’ve had a major blood clot on the airplane, the high altitude would’ve caused breakage and there’s a likely chance I wouldn’t of landed alive. The first week of the hospital was horrible. After a day and a bit a spot opened up for me and I ascended to an actual room, however it didn’t make much of a difference. I wasn’t allowed to move, I wasn’t allowed to eat or drink and I was getting every test imaginable. Scopes revealed major inflammation and ulcers throughout my intestines, up into my stomach and all the way up my esophagus. I remember the doctor showing me the diagnostic images of my throat saying, “See all this stuff that looks like cauliflower? That’s not right.” Ironically the most important test, a biopsy of inflamed tissue, could not be performed because I was now on a lot of blood thinners and they couldn’t just internally cut a piece off of me to test with no way to stop the bleeding. I can only imagine what I looked like. Since it was March Break now, a good friend came with her parents to visit me in the hospital. I remember the look on her face as she stood in the room. She was terrified to come close to bed. The intense sports playing friend she once had was a bed ridden skeleton hooked up to multiple monitors and IV bags unable to move or speak without a rasp, I can’t imagine it would’ve been easy to see me like that. In typical fashion I began to feel better the following week. My hunger came back, and my symptoms seemed cleared. Considering I was receiving no real treatment and they hadn’t found the cause of my sickness, the doctors were baffled. The 7 days of no food was also up and I rejoiced at the thought of stuffing my foodie face. I was given the ok to eat but it was in-between meal times and I didn’t want to wait. My parents went and brought me a tuna sandwich. I had never been super fond of tuna before, it definitely wasn’t my favourite sandwich. But believe me when I tell you after 7 days of nothing touching my tongue this was the greatest thing I’ve ever eaten! The hallelujah chorus rang out as I devoured every last bite. To this day nothing quite satisfies me like a good tuna sandwich on white with a little lettuce. The cycle continued and a few days later my food tolerance lessened and things ran through me. I was getting pretty comfortable with my daily routine and with needles at this point. The nurse would come in for my morning blood work, I would roll over and stick out my arm, eyes still closed. She would poke me, collect her sample and I would roll back over and continue sleeping until my doctor or breakfast came. The doc would come in and measure my leg around the thigh. I had a tick mark I had to be careful not to scrub off so they could measure the same place everyday and get an accurate sense of how swollen my leg was. We’d chat about my blood work levels, if I had any tests for that day and generally how they still didn’t have any concrete answers. I recall one night I lay in my bed awake. It was the middle of the night and I was having trouble sleeping; it is not easy to get comfortable when your leg is on fire. The silence of the room was cut by the sound of someone else in another room retching. It was a kid, sounded like a boy probably around my age, and he gave a giant “BLECH!…ewwwwwwwwwww…” I gave an automatic chuckle at the funny way he said it, paused, and thought…wait… ewwwwwwwwww… It was then I had an important realization. I wasn’t the only sick kid… in Sick Kids. You would think it’s an obvious lesson but it really isn’t. Most adults are even completely consumed by their own situations to notice others. It may be in different ways but I realized that I wasn’t the only fighter in this building. I generally had a positive attitude despite the illnesses and I think little moments like that night helped me to really connect to my fellow patients and care takers. I can thank Pukey McGee next door for the healthy mental perspective during a rough time. Growing up with mentally and physically handicapped brothers also played a huge role. I never had a sense of “woe is me, why am I being punished?” It was just something that made me different. No less. The Doctors ended up finding a hereditary clotting gene in my blood called Factor 5 Leiden, mixed with the dehydration of Crohn’s it was determined this was the cause of my DVT (deep vein thrombosis). This clot several weeks in was still very painful. I was getting ultra sounds often to monitor the size of it and the pushing down of the paddle into the charlie horsed area did not feel great. At this point however my leg was in a state where I cleared to begin walking. I thought, cool I can just get up and can walk to the mirror over there now right? Not so much, I was told to wait for instruction. Instruction on what? A little while later a physiotherapist came into my room, she introduced herself and said was there for my walking lessons. I was taken aback. Walking lessons? Like I forgot how to walk in three weeks? She looked me dead pan in the face and answered, “yes.” She took it slowly, there were exercises at first and finally I was allowed to take a few steps with her assistance reminding me heel to toe. I found it all incredibly easy, I remember her being impressed with how quickly I was able to walk again. I had always picked up sports easy, I wasn’t surprised I did well with you know… walking. It’s just like riding a bike, but, walking. She gave me more exercises to do to regain the lost muscle and I was under strict instructions to still not walk TOO much. Physically I was still terribly sick and weak, the thought of walking farther than my bathroom seemed harrowing anyway. During this time my Father was also taking it pretty hard. I was his athlete. His “little him.” I was supposed to do all the things he couldn’t or didn’t. The doctors knew they had found one clotting factor, but I also tested positive for others, Lupus Anticoagulant and S Protein. These were very serious clotting agents that if I had them would mean permanent blood thinners for life. If that was the case, sports was out the window. I would need to be on blood thinners for the next 6 months for the current clot, but a retest would be done to determine if I needed to stay on them for the remainder of my life. The thought of me having to already miss one softball season was crushing him, he actively tried to persuade the doctors to clear me to play showing them my batting helmet with a face guard and buying a padded jacket for me to wear. They firmly said no, there’s too much of a risk. (That season I still had to attend every practise and game and he even forced me to play an inning in right field wearing the previously mentioned helmet and flak jacket, despite the fact it could kill me). I even remember discussing “back up” sports I could take up that would be safe enough to play while on a life time of anticoagulants. There was bowling, curling, but ultimately he said there’s more success and money in golf. I know my Dad would like me to look back and remember some of the positive things he may have done for me during those times, but I don’t. I try but can’t conjure up a fuzzy, warm memory. I do remember commenting on how it would be nice if he said Hi or looked at me as he entered the room for the first time in two days, instead of immediately telling my mother “let’s go get food.” Tiny moments like that are actually really huge to a child. Several years later I was crying to my Mom about being horribly depressed in the hallway. My dad heard my weeping, came out of his office, and asked “are you pregnant?” I shockingly through tears responded, “No!?” He said “good,” and shut his door again. I actually got very good at drawing during this time. It was 2002, there weren’t smart phones, or iPads. I had a small television in my room that played 28 channels of daytime TV goodness, but The Price is Right is only on so much. I could also rent out a larger TV on wheels and pick a VHS from the video library. There was even one TV that had an N64 hooked up to it. Rad. I was in the hospital a total of 6 weeks and needless to say, I got bored. One day I decided to copy the polar bear poster that had been hanging in my room. I took my time, remembered all the shading techniques I’d learned in art class at school, and by the end of it had a pretty darn good picture. I began to practise more and more and eventually ended up being able to sketch out copies of pictures pretty damn well! I was proud that through a tough, boring time I could practise and acquire a skill I never had before. Side note: you have to keep up with that shit! When I’m out of practise my sketching looks like I drew it with my left hand. I guess it’s not as easy as, you know, walking. At around week 4 I was getting particularly frustrated. There were still no definite answers, I had missed a solid month of school, and I could still barely walk around without intense pain in my leg or getting severely winded. They had a teacher that would come into my room and help keep me up with my class back in grade 7. It wasn’t quite the same but I actually enjoyed the one on one learning. I was always a quick learner and reader and it was nice to be able to kind of go at my own pace. Especially when The Price of Right wasn’t on. Seeing as it was a children’s hospital, they would also send around a clown. I forget her name, but she was silent and it was weird. I always felt awkward around things like silent clowns (clowns in general actually), mimes, people in character suits; like how do I interact with you?! Anyway I remember always knowing around the time when she would be coming down my hall, and it got to the point where I would tell my mom to stand watch of the hallway and warn me when the clown was coming so I could pretend to be asleep or go to the bathroom. Thankfully my frustration was eased by Sick Kids giving me two tickets to the Leafs hockey game IN THE PRESS BOX! I had always wanted to see a live hockey game. I had been to dozens of Blue Jays and Raptors games and had always wanted to see the Leafs. In the press box no less. I was as excited as I could get without passing out, literally. My Dad bought me a vintage leafs jersey to wear to the game and a Carlton the bear backpack to carry any supplies I may of needed. He naturally would be the one to take me to the game. I was loaded up in a wheelchair and brought to the arena. I actually got to tour around the Air Canada Centre and even see some of the Florida Panthers warming up, it was really cool. I don’t remember much about the game itself or who won, but that it was a blast. I remember the incredible view from the press box, the phone in front of our seats we called my Mom on to let her know how it was (remember no cell phones for that), and the tables of food we could indulge ourselves in. All in all the experience truly made me forget for a night that I was actually being pushed around in a wheelchair because I couldn’t physically walk my broke body farther than 20 feet. That wasn’t the only incredible gift Sick Kids arranged for me either. Shortly after I was asked if I wanted to throw the first pitch out at a Blue Jay game. Holy Super Crap! Heck yes I wanted to throw the first pitch out at a Blue Jay Game! The game ended up being a week after I was released from the hospital. That thankfully gave me a liiiiiittle bit of time to practise throwing again. I was so nervous. At that point in my life I had performed singing solos at church, acted in school plays, played in championship sports games and was generally used to high pressure situations. That all wasn’t shit to knowing I was going to be in front of tens of thousands of people trying to get my noodle arm to throw a major league distance. I could at least relax a little in the fact that I was there with one other sick kid I’d be going up with and we were being announced as such. No one’s going to judge a little sick girl too harshly right? I got to go with both my parents this time and bring a friend. We were brought down right to the sidelines next to the dugout to meet the players as they warmed up. I was in awe. This was seriously meeting celebrities to me, players I admired and cheered on from so far were now in front of my face. I ended up with a baseball signed by Darryl Fletcher, Shannon Stewart, Homer Bush and Carlos Delgado. I was freeeeeeeeeaking out. Then the rookie of the team, the new third baseman Eric Hinkse walked over. My dad told him I play third when I’m not pitching. He goes “no way!” and runs into the dugout. He walks back out with a marker and a bat. He said he cracked it in practise and would I like it? Would I like it?! I believe I responded with I would LOVE it. He signed it for me and a separate ball. It was such an amazing moment for me, and I think he liked being gushed over a bit too. After a whirlwind of an experience like that I was quickly snapped into the reality of the crowd that had now formed in the SkyDome. I honestly don’t remember too much, I may have spaced out from the adrenaline. I did manage to get the ball in the right general direction with only one or two hops, that’s a win. BJ Birdie gave me a hug and our picture was taken. We then got to watch the game in amazing seats as I clutched my autographed possessions. I don’t remember who won, it was never really about that for me, I just remember the incredible gift I was given. I felt very blessed despite my situation. My last week in the hospital was annoying more than anything. They were fairly certain I had Crohn’s Disease and I was taking meds that helped me feel a lot better. Again, the biopsy to confirm Crohn’s still could not be done for several more months once I came off blood thinners, if I could even come off blood thinners. I was off the IV as I could hold down food for longer than two days and I could walk to the nurses station and back without too much pain or exhaustion. The only reason I wasn’t being sent home was because my liver enzymes were off. A normal liver enzyme count should be between 20 and 40, mine were 1200. The concern was my blood clot had actually reached and affected my liver function. Every morning I would wait to hear if my count went down so I could go home. Finally I was given the ok to be released. I was overjoyed. We loaded up the car and exited the hospital parking lot. I looked at my mom and told her to roll up her window for a second. She looked at me confused but did. I then threw my hands in the air and proceeded to yell as loud as my weak little body could, “I’M FREEEEEEEEEEEEEEE!” We were getting back to town around the time school was ending for the day. I asked my mom if we could go. We pulled up to the school and I walked (hobbled) in. The final bell rang and students began to flood the hallways. A boy in my class who I didn’t have any real kind of connection with spotted me. “Maureen! Are you back?!” he exclaimed. I nodded and he gave me a huge hug. I was happily surprised by the affectionate greeting. Then one of my very good friends in my class spotted me. I had missed her so much, we used to partner up for every assignment possible and turn it out! We were both looking forward to being reunited again. She helped me into our classroom so I could say Hi to our teacher and sit down, the long hallway walk and excitement had winded me slightly. Several of my other friends rushed to give me hugs and my teacher was thrilled to see me. I’ve never been so happy to be in school in my life! It’s now close to 20 years of living with Crohn’s Disease. If I could go back and give my young, newly diagnosed self some advice it would be to not hide my symptoms and shove my differences in other peoples faces. I dealt with a lot of teachers who didn’t understand what “I need to go to the bathroom NOW,” meant. I dealt with a lot of people who found me “lazy,” or “weird.” There were also a lot of friends and family who didn’t understand my isolation and took it personal. I would also advocate for my well being with my Father. He never let me be sick. I still had to be the perfect grade A student and the ultimate athlete. I could not miss a day of school or a session of training for anything. If I had to throw up it had to be in secret, if someone asked me how I was feeling I had to say, “Strong.” If I had to miss two days of training in a row I was immediately put on prednisone (a medicinal steroid from hell) which severely messed up my hormones and bone density at such a crucial development age. I was constantly exhausted for many years of my life dreading waking up the morning. I carried that mentality throughout my entire life, pushing myself with commitments and “normalcy.” It eventually led to me being burned out by my early 20’s and way sicker than I ever should have gotten. I would tell my younger self full of potential and positivity simply when you need a break, take a damn break. It’s okay to not run at societies version of a normal successful pace, especially when you’re not normal. Starting to accept myself with my differences and living a life to my needs has truly made me a happier person.
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