10th Anniversary

This Father’s Day 10 years ago I had my second stroke.  Yes, second.  The first was when I was eighteen months old and as a result, don’t remember it.

My symptoms actually began the night before when my family and I were watching Office Space.  My vision was quite blurry, but not overly so that I couldn’t see anything.  I wasn’t quite sure what was wrong so I tested myself a bit and walked to the kitchen for something to drink.  I could walk and use my major muscles so I wasn’t overly worried.

The movie continued and ended without incident.  (Apart from being happy the movie was over because I hated it.)

I didn’t sleep well at all that night.  My belly was not pleased for some reason and I think I was just awake because I wasn’t sure what was happening.  At no point did I wake up my parents.

Sunday morning came and my dad came in to tell me they were leaving for their run, but would return at around 11.

I was sort of sleeping.  We’ve all been there, looking and acting asleep hoping that by fooling others, you’re fooling yourself.   I decided it was time to get up and figure out if I was better, worse, or the same since the night before.  I recall being awake, but feeling only half with it.  As though time was on slow motion.  I thought perhaps a cool shower would work.  I turned on the water and got it, making sure to get my hair wet.  That did nothing.  I hastily dried myself off, put my PJs back on and laid across my parents bed.  At this point, I still had no idea what was happening, but felt doing anything that was not absolutely necessary would not do me well in my current state.  This is why I didn’t towel dry my hair, get dressed or eat breakfast.

My parents returned home and the first to find me was my dad.  Upon entering his bedroom, the first thing he saw were my feet and as usual, he tickled them.  No response.  I didn’t squirm, try to kick him, giggle or anything.  I wanted to, but felt so detached.  Shit, I thought, this can’t be good.  My dad walked around to where my head was.  He had just returned from a run and normally I would have scrunched my nose, but that didn’t fly either.  Dad tried to interact with me but soon found I couldn’t talk, my face was asymmetrical and here’s the best part…I was also drooling because I couldn’t swallow.  Eeeeew!!  Gross!!  Only babies drool…I’m 14, this is not cool!  Mom was in the shower.  Dad went in and told her something was very wrong, but mom, of all things, said, “but I want to go to Starbucks and walk around town.”  Hello!!!  I can still hear, I thought you were a nurse, yeah like a “medical professional”.

After practically yelling at my mom (go dad) we were getting ready to go to the hospital; namely The Children’s Hospital of Philadelphia.  For whatever reason, my mom made me get dressed to go to the hospital.  Nowadays, I go in my PJs because 1) they are more comfortable and 2) I like to avoid the HUGE hospital gowns whenever possible.  To this day, I remember exactly what I wore that Sunday in June.  During the hour and a half car ride to Philly, my dad got on the phone and eventually was able to talk with one of the Neurology fellows.  What is Neurology?  While I had no idea what the word meant, something told me it wasn’t exactly something you wanted to be familiar with.  The fellow asked my mom to direct me to follow her finger with my eyes.  I couldn’t.  I really, really wanted to, but I could.  Shit, I thought again.  Now I am really screwed.  I was semi-familiar with this “follow my finger” test since my pediatrician seemed rather fond of it, not sure why.  Previously, I would just do as she asked without thought as to why I had to do such a menial task.  However, now that I couldn’t do it, I grew more frustrated and the task I had previously done flawlessly, now seemed to have merit.

First my parents thought we should go to the Hospital of the University of Pennsylvania’s ER, since I was a teenager, but the security guard told them no I should go to Children’s (right next door) since I was not yet 21.  Nothing had changed when we arrived at CHOP.  I was the same and could still walk.  I looked around at the others waiting to be seen and to my shock seemed to blend in.  From here on I remember everything; from what the room where my vitals were first taken, to the color and location of the room I was in while in the ER.  I had a CT shortly after getting to the ER to make sure I wasn’t bleeding, had a clot or tumor in my brain.  The Radiology tech who was in the room was a woman with blond hair.  I remember crying a bit in the machine and she was talking to me, assuring me everything would be OK.  I repeated those in my head over and over.  I had my IV in the back of my left hand near my pinkie; it was blue.  Since “real food” was out of the question since I couldn’t swallow, my dad got me a chocolate milkshake from the McDonald’s in the hospital thinking perhaps the milkshake would melt in my mouth and then slowly go to my stomach.  Not so fast since the act of sucking on the straw was not successful.  Mom then tried to spoon feed it, but that too didn’t work so well.  Even though I couldn’t ingest the milkshake, I refused to let them have it or toss it because it was still mine.

After the ER, I was admitted to the PICU (Pediatric Intensive Care Unit).  I spent two days there and three days on what was The Adolescent Unit, this unit doesn’t exist anymore  .  During my admission, I got my braces off (YES!!!) for an MRI since the mouth lines up with the base of the brain and can cause artifact on the scan.  One of the labs I remember being drawn was for Lyme.  I was seen by Cardiology and I remember this quite well since I was sort of confused as to why would my heart render me unable to swallow, speak or smile.  The first meal I had was Fruit Loops with grape juice on the side.  Even though I received Speech Therapy, most of what I did say was unintelligible so I didn’t talk much due to frustration.

One day, however, one of the doctors asked me to follow their finger with my eyes, but the only problem was I couldn’t see it since I didn’t have my glasses on.  The doctor had woken me up and last I remember, my dad had taken them and placed them in his breast pocket.  I then asked, clear as a bell, “Where are my glasses?”  Needless to say, my mother was so shocked she missed out on what I said.  Thank god someone else was in the room because I didn’t want to try again for fear I couldn’t.  So once mom put my glasses on I gave it my best shot to pass that pesky “follow my finger” test.  My mom was wearing a black turtleneck that day.

The doctors and CHOP were very puzzled by my symptoms and medical history.  Strokes stereotypically happen to old people, yes there are always exceptions, but for a 14 year-old to have two for no rhyme or reason simply did not make sense.  Neither was the fact that nothing ever came up on my CTs or MRIs.  Most strokes are caused by clots or lack of oxygen, unless they are metabolic in nature.  That year, I did not improve as much as would be expected in someone my age who has had a stroke.  The young are more resilient and can recover from brain injury such as a stroke more quickly because their brains are not yet fully developed.  The next year, 2002, I was diagnosed with Complex I Mitochondrial Disease by fresh muscle biopsy in Atlanta.