Life Before Diagnosis

When I was a teenager I remember sleeping, A LOT. I can hardly remember not being tired or fatigued. Exhausted doesn’t even begin to describe it. In middle school I would go to school, come home and go immediately to bed, only waking up for dinner and homework. During school breaks I would sleep until 2 in the afternoon even after going to bed at 9 the night before.

My first major MS episode took place at 16 when my dad and I were busy setting up for my birthday party. When we were done I went outside to soak up the warm July sunshine. The cordless phone rang and my dad yelled that the call was for me. Back then cordless phones were the hot technology and cell phones were so big they came in a bag (seriously). A boy I had met the week prior at Summerfest was calling because he wanted to know what time he should come by for the party and all I could tell him was “I don’t know” or “I’m fine”. Suddenly, I was Sheldon Cooper stuck in an infinite loop in his friendship algorithm. The boy on the phone started to worry because he could tell something was definitely wrong. He was worried and he was coming to the house to see for himself that I was ok. Isn’t it sweet that a boy I barely knew was so worried about me? After that disaster of a conversation I decided to go into the house but the left side of my body was not cooperating with that plan. I was dragging my left leg as I walked and I remember feeling very heavy and exhausted. When I got to the side door my dad caught me around the waist because I collapsed. Good thing I was all of 120 pounds soaking wet and wearing boots, as my dad would say. He carried me into the house and put me on the bed and seemed of mad at me. He kept asking me what was wrong but all I could say was “I don’t know”, “I’m fine” or “No”. People started arriving for the party. My grandpa came in and asked me if I was drunk. Oh, so that’s why my dad seemed mad. I did ask for a wine cooler earlier even though I knew my dad would say no, I was a teenager who just liked to be a pest, but I did not have any alcohol. I wanted to sleep but no one would let me. Everyone had a million questions. Next thing I knew my grandpa is slinging me over his shoulder in a fireman’s carry and into the back of his car. I do not remember that car ride and I very faintly remember being admitted to the emergency room. When I did start to come to I kept trying to read a sign above the door of my room in the ER and I couldn’t. I knew there were words but I just could not make sense of them. I was whisked away for a CAT scan. My finger was pricked for blood sugar, an IV started and a catheter put in for a urine sample (drugs, she’s got to be on drugs is what I was hearing). All of a sudden I could read the sign above the door “if you are pregnant or have a pacemaker tell the nurse”. I could read and it made sense! The next thing to try was my voice “I, I, I can read”. Everyone in the room stared at me. Next up, try to move my left side. I smiled, I moved my left arm, wiggled the toes on my left foot. I was working again! Then there was talk of a spot on my CAT scan and that I was being admitted to the hospital for observation.

So up I went to my very own room. My dad stayed with me as long as he could. I finally sent him home to get some sleep in his own bed. Of course he didn’t want to but I probably made some kind of threat like leaving the hospital if he didn’t. We lived so close to the hospital it made no sense for him to sleep in an uncomfortable hospital chair. I am glad he went home to rest because he would not have gotten any sleep, I was woken up every hour to answer questions like what my name was and what day of the week it was. Plus, at this point I was hooked up to an IV, some kind of heart monitor and I think I even had electrodes on my head so for me trying to get comfortable was impossible. Finally, morning came and at about 7am a new visitor arrived. The next person to come visit me? A priest to give me my last rites. Yikes. I politely declined and promptly vomited as soon as he left the room.

I was whisked away to MRI soon after the vomiting episode. Ah, you never do forget your first time. You think they would have explained the hell I was about to go through. They put me in the tube. There were no ear muffs, no music, no warm blanket. As hard as I tried I could not hold still and I could not stop crying and then I puked again. I guess I’m claustrophobic and the hospital staff had to find out the hard way. To this day I cannot even look at an MRI machine, open or otherwise, without having a meltdown. They gave up and took me back to my room.

Dad was back and he brought me clothes so I could change out of my hospital gown. Family, friends, flowers and balloons started to arrive, it was my birthday after all. My girlfriends and I got to wander the halls of the hospital which makes those over the top sweet 16 parties look pretty shabby. That night was more of the same, wake up every hour, who are you, where are you, what day is it? On the third day in the hospital my dad returned from home and soon our talk turned to why have I not been visited by a doctor, I just keep having to take more tests, all coming back normal except the CAT scan. I was getting restless, I wanted to shower and I wanted to sleep uninterrupted. That afternoon I told my dad I was going home. He didn’t think it was a good idea. I told him I had clothes and I could walk home (yes we lived that close). I removed my IV, gathered up my flowers and was half way to the elevator before my dad caught up to me and agreed to sign me out and take me home.

At home for me the first order of business was a shower! I had so much sticky glue residue stuck to me from being hooked up to machines. My dad didn’t think it was a good idea but, as I mentioned, I am stubborn and insisted. We compromised. He made me wait to take a shower until my girlfriends got there because he was afraid I would pass out and he wanted a girl to be home to help me if I did. Funny though, that the man who changed my diapers was now afraid to pull me out of the shower if I collapsed. During the first few days at home it was like being grounded but I didn’t do anything wrong. My dad was worried something would happen again so I had to stay home. We found a pediatric neurologist who ordered more tests including another MRI but this time the doctor wised up and I had IV sedation. They finally had a clear MRI of my brain which showed the same spot that the CAT scan did but otherwise nothing remarkable (aside from the fact that my brain takes stunning photographs). The end diagnosis from the pediatric neurologist was that this was a freak occurrence not likely to happen again. I knew deep down that wasn’t going to be true, I always felt like something else was coming but I did not know when. The horrible exhaustion continued but I had no further episodes until I reached my 20s.


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