1.13.2018

Remembering My First Official Day With MS

This morning as I wrote the date in my diary: 01.11… I stopped short before writing the year. Not because it’s still a new year and I refuse to accept it, but because January 11th is one of those dates that strikes a chord deep inside my mind. It makes me stop and say, “Oh yeah. January 11th.” This morning, still sleepy and under-caffeinated, when the date finally clicked for me, images from years ago started filling my head in vivid detail, like I was reliving the events of yesterday and not of 2001. 

I remember waking up in the canopy bed that was too big for my small student apartment, with the fake fireplace and the moss-green walls. The weather, like it is today, was grey and drizzly, kinda mild for the dead of winter. I remember my dad picking me up in his mini-van to take me and my mom to my neurology appointment. I remember the long hallways of the hospital, the crowded waiting room full of weary faces, and finally, the doctor pointing out 6 white spots on my MRI that confirmed I had multiple sclerosis. I remember the calm with which I’d received the news, and later, the hostility I’d shown the clinic nurses. I remember trying to crack jokes with my humourless neurologist, because even back then I had a sense that part of the burden of this disease would be to reassure others that it’s okay, that I’m okay. 

This was not pink in real life. IRL it was scary AF.

I remember the relief my dad felt when he heard 'MS' and not 'brain tumour', and the discomfort he must have felt when, as I was flipping through pamphlets, scrolling through possible symptoms, I shreiked, “Sexual dysfunction? What the fuck does that mean?”. I remember wondering what the people who’d promised me “Pretty girls don’t get diseases” and “The good Lord would never let this happen to someone like you”, were going to say now. I remember sitting on my bed, next to my mom, making her call my friends and deliver the news. It wasn’t that I couldn’t bear to say the words “I have MS”, it was that I couldn’t bear to hear their reactions.

January 11th, 2001 frames the BC and AD of my life. 
The Before and After. 

It was a day that moved in slow-motion, where random details worked hard to secure a place in my long-term memory. I can recall its minutiae with technicolour clarity; except, it wasn’t a colourful day, everything was in black and white. I remember going to the movies that night, just to do something normal, to convince myself that life was going to stay the same. I remember that the plot of the film (Billy Elliot), was not distracting enough to pull me out of my own reality. I even remember looking around the theatre, and being struck with that strange feeling that comes when the world stops for you, but keeps moving for everyone else. Like, why wasn't everyone leaving the theatre looking as slack-jawed and stunned as I felt? I heard laughter and wondered how come these people didn't know that EVERYTHING IS DIFFERENT NOW?

Psychologists would call my unplanned trip down memory lane an anniversary reaction, which sounds vaguely fun, but isn't, really. The good news is, it's a predictable and totally normal response to unresolved trauma, and while it can seriously mess with some, my own experience was nothing more than melancholy that made me wonder if anything good could come from peering into the past, and re-experiencing those early emotions. 

Thinking about that day and what it has led to, made me appreciate that being diagnosed with MS is a big fucking deal, and that from time to time, I deserve to pay tribute to that. To say, holy eff, that happened to me. 

Someone should give me a present. 

But it's hard to congratulate myself for having gone through something when I haven’t yet made it to the other side. If anniversary reactions are about your brain forcing you to explore unresolved trauma, it would seem that the cure would be to resolve the damn trauma. 

17 years after my diagnosis, I can’t say I’ve done that. The feelings I remember from that day, when I was barely an adult, still relying on my parents, are so familiar, I feel like I’ve failed at the acceptance part of having a disease. I’m a grown-ass woman. Why aren’t I better at this yet?

But 17 years of perspective has taught me that MS is a moving target and it's impossible to get through the grief that hasn't happened yet. That's not even grief yet, it's anxiety and it's useless, and yes, I really need to learn to properly meditate. And maybe I don't deserve props for being totally chill about my progression, but I realize there are some props I do deserve. Because, actually I've done a really good job of accepting all kinds of shit. Par exemple, my vision sucks, I don't drive. Over it. The whole catheter thing? In my sleep. Even the use of mobility aids. It's tough, but so am I. And that’s the real lesson of the past 17 years. I’m still gonna freak out from time to time, but at the end of the day, I’m pretty resilient. I’m still here. 


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13 comments :

  1. “Pretty girls don’t get diseases” is a thing an actual person said?! wtf. I don't remember my actual diagnosis date but one of my favorite restaurants was ruined for close to a decade because I ate there right after getting the news. I'm over it now but eating there still brings on a tinge of melancholy. Anyway, major props to you for being resilient af and for being funny all the while.

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    1. Yup, someone said that to me. She was, I think, trying to be funny and completely, one-million-percent did not think I could possibly have MS, but the long-term effect that stupid little off-the-cuff phrase has had is to make me think about how the world doesn't always want to think of people with disability or disease as 'beautiful'. (Which is obviously bullshit.)

      I totally feel for you about your fave restaurant. That is a real drag.

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  2. I was recently recalling my diagnosis which happened in a whirlwind I barely remember. I was in the hospital 5 days and everyone around me has a better recollection about that time than I do. I sometimes wonder if it will always be so jarring to remember life before and those slow moving, eternal moments when you're diagnosed, and the haze that seems to follow you around after. Also, it took me like 3 years to be okay with things? Whyyyy, brain, why?

    Always love what you have to say and your practical, real, and honest posts! Cheers to resilience!

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    1. Hi Lori,

      I wonder if your MS origin story is harder to remember because if you were hospitalized I'm guessing you were pumped full of drugs?

      Thanks for your kind words and I will def drink to resilience.

      A.

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  3. So, honestly, I thought we were nearly the same age. Clearly I am older since you were still living at home in 2001 when you were diagnosed and I had my daughter that year.

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  4. I remember my diagnosis - of being completely alone in the office of a flaky neurologist who simply told me I'd be completely crippled in 6 months, and the 'get a wheelchair' scenario. My mom found my current, sympathetic neuro, but truly, the trauma endures. The meditations help as I do them and these things are called 'practices' for a reason - it's always day one! For me, that's where the hope and the comfort reside. An MS meltdown is never, ever a disqualifier or a sign of...anything. The next day you can just sit and meditate one more time ... that space will always be there.
    I'm amazed at my own resilience often also, and acceptance of awful symptoms. But - as you said - still here!

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    1. Wow. What a nightmare. How can somebody go to school for that many years and still be so clueless?

      I'm gonna figure this meditation thing out. I'm gonna do it.

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    2. That was back in 1994 and he was a young doctor; I'm convinced I was his first patient ever and he felt compelled to deliver this blow. I'm guessing (hoping!) today the doctors are more aware?

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  5. Although my diagnosis was less than 3 years ago, the 2 anniversaries I've had thus far have felt virtually impossible to cope with. I can't imagine it gets any easier with time. In a way, the hardest part of going through the entire gamut of relived emotions is the feeling of doing it entirely alone--AGAIN. Despite the fact that my family and husband were physically THERE with me in the hospital and can say things like, "Oh, yeah, that was a pretty terrible day," I just can't bear the isolating feeling that nobody around me understands the full extent of being given The News. Oh, September 19th, you will forever be a shitty, unwelcome, traumatic dark cloud on my calendar!

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    1. The first few years were definitely some of the hardest emotionally. You're right that your friends and family can't entirely 'get it' the way you do. But they can get you a present. Maybe if we turned our diagnosaversaries into days we actually took time to recognize and reflect, and yes, receive a present or two, it would help us get through them? Or maybe I just like presents.

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  6. I don't remember when I accepted my diagnosis. Definitely not when the inept family physician read the radiologist's reading of the MRI and told me that there was something happening in my brain. Not when the first neurologist berated me for not bringing a CD with the images and then read the radiologist's report and told me that I had MS. I was in my late 40s, brown and male. MS affected young white females. So when I went to India, I had more MRIs which showed lesions in my brain AND spine. Also the visual EP showed a longer reaction time. The Indian neurologist DDX'ed me by stating that when he was a medical student he would have failed his viva voce if he had diagnosed MS. It was very rare in India. Then he commented that sometimes B12 deficiency showed similar symptoms. His diagnosis was MS and the neurologist read the film. Not the radiologist and not the images. Still, I remembered that for a year that I lived in Montreal, I was influenced by vegan friends to give up red meat. So I overdosed on B12. It didn't change the MRIs.
    I had first heard of MS on a first date with a nurse in Denver, CO who looked after patients with MS. She told me that it was typically found in people who lived North of the 38th parallel. There was no second date but I went home alone feeling relieved. MS was one disease that I didn't have to worry about. In India, we get malaria, typhoid, leprosy...there was even an outbreak of the plague in 1994. But we don't get MS. But then I remembered that my childhood was divided between the UK, Denmark, New Zealand and India.
    I guess that in addition to those other diseases (did I mention tuberculosis?) I can get MS.

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    1. Thanks for sharing this Joe. I think you're right that Denmark and UK could have influenced your outcome, and not just your cool accent.

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