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MS at 19

Greater than the sum of my parts

By Erica PsaltisPublished 3 years ago 10 min read
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MS at 19
Photo by Josh Riemer on Unsplash

My MS story starts before me.  My paternal grandmother had MS.  By the time I knew her, she was in a wheelchair.  I thought it was great to sit in her lap and be pushed outside to enjoy the Tucson roadrunners.  I remember her as a very quiet soul, with a lovely smile.  She was an artist.  

My personal diagnosis happened in late February 2002. I was living in an apartment with three other women and my dog, Kansas.  I was a sophomore, 19 years old.  I was taking a full class load, and had been accepted to study abroad for my junior year. 

I woke up one day with a tingly leg.  It felt like I had slept funny.  I was, after all, sharing a twin bed with a 60lb dog.  I carried on.  The next day, it was worse, and I knew that something was wrong.  I went to the school medical center.  The doctor seemed a little baffled.

I went to see a doctor off-campus.  By this time, both my legs were affected. They were numb but also heavy.  I felt off-kilter.  The doctor took my medical history, and performed a series of tests that I now know to be pretty standard for MS.  I took off my shoes and socks and he pricked the soles of my feet with a lancet.  He held a tuning fork to my feet to see if i could feel vibrations.  He tested hand and finger strength.  He tested my balance.  He decided we should wait out the weekend and see what happened.

It was a long weekend.  The strange lack of sensation kept creeping up my legs, up to my waist.  By Monday I was in full on freak-out mode. The doctor completely blew me off.  He had pulled my medical records from the school and seen that I had gone to see a counselor a couple times during my freshman year.  He thought this was stress.  He sent me home.

I couldn’t believe it.  I knew something was wrong, something much bigger than stress.  It was the first time I could remember being betrayed by a medical professional.  I had been pigeon-holed as hysterical and sent home with a pat on the head.  I called my parents.  My dad told me to go back and be my own advocate.

I went back to the office the next day.  The doctor I had originally seen was not working, so I saw a different doctor.  The new doctor did the same battery of sensory tests, and was concerned that I could not balance on one foot.  She ordered an MRI, which had to be done at the vet hospital.  Apparently there was not a human MRI in Pullman in ’02.

I remember having to go super early in the morning to the vet hospital.  My friend Emily took me, because I didn't have a car.  I don't remember being instructed not to wear metal, and he actually let me wear my nose ring in the machine.  In hindsight, it is funny that I spent any fragment of energy worrying about my brand new nose ring given what was happening, but I think sometimes you worry about something focal because the bigger option is overwhelming,

The MRI experience is quite unlike what you might see on medical dramas.  I actually find it comical, in the way my husband finds police dramas comical.  The MRI tube is smaller than it looks on TV.  You are not given as much freedom of movement (in my most recent MRI, I was instructed to try not to swallow during the process).  You lay on a sliding slab and have to put your head between two tiny plastic walls.  They pad around your head because its important you hold your head totally still.  Then they put a plastic cage over your face, not dissimilar to a goalie mask.  Hello, Clarice.  They will also put padding at your shoulders and arms.  You wear earplugs, or sometimes headphones.  They might give you a blanket.  They give you some sort of item to use to indicate you need them to stop And then they slide you in.  I am not claustrophobic, but I can imagine that if you were, an MRI would be  the manifestation of a personal hell.  Doctors offer you sedatives if you need them.  It is lit with can best be described as track lighting.  If you are particularly creative, you could pretend you were in Tron.  I try to sleep.

When the imaging starts, it is obnoxiously loud.  It bangs and knocks.  It has a sterile, mechanical efficiency.  It will get quiet, and then it will start again.  They slide you a little farther in and take images, then adjust you again and take more.  You wait and hold still.  Then they let you out.

I went the net day to follow up with the doctor.  She sat me down and emphasized that she was NOT a neurologist, however, given my family history of MS and what she saw on the MRI, it looked like MS.

I don’t really remember the immediate aftermath of that moment.

I do remember telling my parents, kind of.  But it was definitely shattering, for all of us.  They presented me with two options: to continue to pursue treatment in Pullman on my own, or to come home and seek treatment in Olympia.  I opted for the latter.  My fledgling adulthood had not prepared me yet to tackle this without my family.

I flew home.  Kansas was flying with me, which made me really nervous.  I had to check him at baggie claim and just have faith he would be at the end.  In a world fresh off the events of 9/11, my choice of overalls and sixteen eyelet Doc Marten boots as flight attire was poor.  I was randomly selected both at security and the gate for random security screening,  in the tiny Pullman airport, by the same attendant.  My embroidery needles were confiscated.

I made it to Olympia, where one of my parents had made an appointment with a neurologist. He had wanted a new MRI.  So into the tube I went.  No nose ring the time.  Tap tap tap.  Bang bang bang. Knock knock knock.  Back to his office.  It was MS.

One thing that I appreciate about my family is that they always have my back, but that they also never let me just sit and wallow.  I think immediately following my diagnosis, I was allowed about  one week of self-pity and grief.  I remember sleeping a lot, and Kansas being reluctant to leave my side.  I had to go to St. Peter’s for a five day course of steroids to get my flare under control.  Since my dad worked practically across the street, he would come visit me during his lunch.  I struggled with the emotional impact of this diagnosis so young.

Eventually, my parents put their feet down and said I had to snap out of it.  It sounds brutal, but in reality, it was incredibly pragmatic.  The situation was not ideal.  It sucked.  I’m sure they both would have traded their eye teeth to change it.  But this was my new reality, a new part of my integral self.  Gotta make the best of it.  It was decided that I would not return to WSU for the rest of the term.  I was expected to find a job.  No laying about feeling sorry for myself allowed.  It gave me the strength to fight back.  I would NOT be defined by this, I decided.  Not by me, not by anyone. 

My parents also made it clear to my neurologist that I was going to Europe in September. I don’t remember ever being presented an option of NOT go, and for that, I am also thankful.  My year abroad was incredibly formative, and I was especially malleable, having just been broken down to my basest self. 

Spring passed uneventfully.   I flew to London and made my way to Plymouth.  I moved into my dorm room and started to make some friends.  It was great.  I was having a blast.

And then it happened.  The panic attack that brought this relatively seamless disease transition to a screeching halt for nine years.

I injected my meds one day.  I hadn't been in the U.K. very long, maybe a week or ten days.  Long enough to have met people but not long enough to be good friends yet.  Almost immediately, I knew something was wrong.  It started small.  My face felt warm.  I felt a little dizzy.  I sat down.  My chest felt tight.  I put my hand to my face - it felt hot.  I looked at myself in the mirror - my face was flushed red.  I ran some cold water on a wash cloth and laid down on my bed with the washcloth on my face.  I couldn’t breathe.  I ended up passing out and remember thinking about my body being shipped back home to my poor parents.  It was terrible.

I have no idea how long I was out.  When I woke back up, I felt woozy.  It took me two days to feel fully recovered.  Bad hangovers don’t even take that long.

I felt so alone.  In the week or so I had been in Europe, I had met some great folks, but we certainly had not bonded to such a level that I felt like I could tell them about this; I had barely had time to recover from jet lag.  I didn’t want to worry my parents and I didn’t want to be brought home. 

I stopped taking my meds.  I just couldn’t do it.  I would sit with the needle in my hand and shake.  I gave up.  The drugs won.  I felt defeated. 

I think it took about two weeks for the emotional burden to become too great to bear.  I finally called home.  But a serendipitous thing happened in the process.  I was living in Merrifield Hall, where University of Plymouth housed foreign students.  With European sensibility, there was only one phone for the building, right off the foyer, near the stairs.  I was huddled on the orange plastic chair under the phone, trying not to have a total melt down.  I’m sure i was emitting that sort of vibe because as I was sitting there, one of my newly made pals walked by.  He asked if I was ok, which I clearly wasn’t. I told him that it was a “long story” and fully expected that would be the end of it.  Instead, he sat down on the stairs.  I poured my heart out, sobbing.  It was cathartic.  I was not alone. 

In the years since then, I have had ups and downs. New meds came into play. I met a man who has been my partner in this. In all honesty, the only reason I can really talk about this fear is because of my husband.  He is the embodiment of all the comforting things people said to me about finding a partner who will love you anyway. When I told him I had MS, he threw himself into learning about it.  When I told him I had a gluten allergy, he made sure the restaurants we went to had a gluten free menu.  He went with me to see the neurologist to get the results of a 2012 MRI, only four months into our relationship. In March 2014, I had my first MS flare since we started dating that required a steroid drip.  He loved me anyway.  In July 2015, when I had to have prednisone, he brought home my prescription and told me the funny story about the pharmacist warning that it could cause what Chuck dubbed "poop explosions."  He loves me anyway. 

I am learning that I am greater than the sum of my parts.

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