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.
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| 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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“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.
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!
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.
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.
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.
She mentions it is her student apartment…
I remember that time period, A, because I think you still worked at the company with your husband and mine? We were so shocked to hear about the diagnosis. 5 years later my cousin also received that diagnosis.
Yes! Student apartment but not a student. Just broke!
I hope your cousin is weathering their MS. Nice to hear from you, Jennifer!
MS has me ageing in dog years.
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!
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!
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.
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.
Presents are great, we should turn all bad day anniversaries that won’t leave us alone into opportunities for celebrating. Presents for ourselves count too, right? I don’t have MS, but CMT is my companion.
100%
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?
Now I remembered my first neurologist, a pretty woman-doctor in Istanbul, she said after I had talked about my Symptoms, that she wasn’t sure, just had some predictions and thoughts and I had to do EMAR Test and after three days I was informed about my diagnosis, then two weeks of steroids and release afterwards after returning to my country I got known abut death of my brother The end of January 2007, just like now:(((
Anniversary reactions can be tough. Look after yourself.
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.
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.
The tactful neurologist that diagnosed me, literally, slapped my MRI on the white board and said ‘Yup, you have MS.’ He then handed me pamphlets about various drugs for it and told me to look them over and decide what I wanted to do. My mom was in the waiting room. They didn’t even suggest that I bring her back. I walked out and told her and she just started to cry. Her brother and dad have MS. I really didn’t even know what it meant. October 3, 2006. A day that I will NEVER forget.
I have only had MS for 5 years but I have to admit that people that can walk fast and easy make me envious knowing I probably can never again do that myself. Reading your blog sometimes scares me but other times uplifts me. What you do with your blog is important to all of us with MS, keep it going. Your experiences touch all of us positively Ardra.
I am also envious of the simple task of others walking fast and easy – then I think of how I also used to take it for granted and I’m more understanding. Charcot Marie Tooth affects my feet and legs and will also effect my hands and arms.
Hi Christy,
I'm not sure how I missed this comment, but thanks for sharing. I had a similar experience, where my mom was in the waiting room and I had to give her the news myself. Such an awful memory.
I hope you're doing well now.
A.
Hi Bill,
Thanks so much for this note and for your kind words. I definitely remember a time when I wouldn't have wanted to read anything like this, but it sure helps to connect with others now and know that if others can do this MS-thing, I probably can too.
I dont remember my exact date of diagnosis but I certainly remember being in the neurologists office with my mother and my husband. I was a RN at the time and had taken care of MS patients and knew exactly what the neuro was saying, my mom and hubby not so much. My mom just didnt believe it was true and my husband was just clueless. My mom came with me for a second opinion in Boston at MASS General Hospital and she saw how the neurologist were,very matter of fact, no beating around the bush, they told me what medication to take and what not to do.(lay around feeling bad for myself) Go enjoy enjoy your life MS is not fatal. So I lived my life for 10-15 years. And now I live my life trying to get around with a cake or walker depending on the destination or weather. I daily live in fear of falling and ending up in w/c for the rest of my life. God has been good to me and I know many who are worse than me and many who have it better than me. So I just continue on putting harsh medications in my body and having faith that I'm doing what God and Jesus want me to do. I also relate so much to your blog Ardra. I feel better with my progression when I think with your perspective! Happy New Year!
Thank you for reading and for sharing your story.
Be well and happy new year to you too!
My first anniversary in 28 days time. I’m at the top of the MS class as I was 54 when diagnosed and apparently have RRMS, I’ve always been an over achiever. My diagnosis was delivered by a doctor who was so kind that he insisted on calling it inflammation so I had to turn to my husband and tell him the doc meant MS.
I have no idea if I’ve come to terms with it. I’m mildly affected currently, so probably in denial.
Anyway, love the blog for being truthful, vicious and funny.
DX-day for me was 06/06/06. I have very clear memories of what happened that day in my GPs office! I had been having symptoms for years! The irony is that my Dad had MS too and my Dr and I never thought to test for it! By then my father had been gone 6 years. Took another 10 days of anxiously awaiting a visit to the MS Clinic and my first steroid treatment. The very special neurologist (who went to work out west) told me that my Dad’s MS was not my MS. Those words have guided me over the last 14 years. I was also a very early adopter of medications, because anything I could do to hold off deterioration was worth it in my book!
Wow. 06.06.06. Thanks a lot, Satan.
Your and the other anniversary posts are fascinating to me. I am not sure why I would be so naive but I thought perhaps only I remembered those days with such clarity . 16th anniversary this year -2004 at age 51. This month. So many things in my life are a memory blur – except that week – and also the day I learned about my husbands cancer diagnosis. In both situations I knew life would never be the same from that moment – as you say – before and after. I really valued your comments focusing on what has been accomplished in “the after.” – you have used your time very well, as have I and so many who posted. I think it is truly that we understand tomorrow is not promised – so capture today as best you are able!
Thanks for reading. I’ve also found it super interesting to read all these origin stories.
I’m celebrating my one month anniversary – and I must admit, it was just such a relief to finally get a diagnosis after years of my body doing odd things. I’m seeing a great neurologist and she is really supportive, so that helps a lot.
A neuro you click with is key. Glad you’re getting some answers.
We always celebrate my MS diagnosis day. But we call it the “perseverance in the face of adversity day” celebration. Grit and determination are important, but so are grace and gratitude for what I can do. Oh, and I have been know to add a new pair of Jimmy Choo biker boots to my shoe collection on that day as a sign of my perseverance.
I love this so much.
My first symptoms were slurred speech and limited movement of my right hand and right leg. My GP thought I’d had a TIA (mini stroke) and was medicating me on that basis. I thought I was too young, at 50, to have a stroke, so I was thrilled when I discovered it was MS, not a stroke! Thrilled, because I remembered my mom did fundraising for the MS Society when I was kid, and it was so long ago there must be a cure by now or at least something that would render it a manageable disease, right?
And then I did some reading and realized what the state of MS really was, and sank into depression. I still can’t believe how little progress has been made on understanding the disease although I am grateful, of course, for the DMDs we do have.
I’m coming up to my 4th anniversary of diagnosis and although I’m on a DMD and relatively stable, I’m still freaked out about what I know could happen. It’s the not knowing that gets me. Give me a prognosis, a likely path, anything other than a “who knows what your MS will be like?”.
I get it. I’ve said it before that Fear is at the top of the list of worst MS symptoms.
My official diagnosis came as my (now ex-)neurologist told me “if it looks like a duck & quacks like a duck, then it is a duck – you have MS.” True story.
So for me, my ms anniversary day is referred to as “the day I realised I was a duck).
I’ve heard from more than one person that they were dx’d as ducks. I feel like neuros need to spend a minute learning how to better deliver this kind of life-altering intel.
I don’t remember the date of my diagnosis, although i do remember that day. it wasn’t a shock as i had been in and out of several specialists’ offices looking for a reason why my left ankle was tingling and numb, and my balance was going south. the neurologist never came out and said i had MS. I had to ask if her mumbo jumbo meant i had MS. “Yes”, she said. it was actually a relief that i had a name for my ailment.
So the diagnosis date does not mean much to me. it is the life experiences affected by MS that stick with me. i can think of incidences in the years prior to diagnosis that certainly were MS symptoms, albeit mild ones, that went away before i ever told anyone. oh the second guessing i did… what if? what if? is it my fault i am in this position?
when the twinges in my ankle started happening, my wife and i were both in a 10 pin bowling league as well as taking ballroon dancing lessons. the previous year i had taken some bowling lessons that propelled me to a league leading average for the first time ever! now i get this handicap! grrr! still i managed to hang on pushing myself some nights for the rest of the season to get that high average prize! mission accomplished… no regrets here, even though that was the last time i was able to bowl.
the dancing lessons with my wife are the thing that has stuck with me. obviously, i could’t continue. i had just ordered a pair of new dancing shoes when all this transpired. i still have them, unworn, waiting for the day they find a cure for MS. it is still hard to hear a song we used to dance to, or watch the movie “Shall We Dance”, my wife and my favorite movie at the time. again, twinges of guilt bother me because i forced the end to our dance lessons. i know that is irrational, but still. such are the thoughts of someone that has a rug pulled out from under him.
this has been rather cathartic to write this. my diagnosis was 12 years ago and i am in a good frame of mind nowadays. thank you for indulging me. i didn’t think this would become so long. time to shut up lol 🙂
Thanks for sharing, Michael.
I was diagnosed 35 years ago. Back then it was Diagnose and Adios. There were no drugs, just steroids to stem the attack. The Neuro I saw said he would not prescribe steroid because, and I quote, “It could put hair on my pretty face.” After at least a dozen steroid treatments, it never has caused me to sprout additional hair anywhere. About 2 years before I was diagnosed, and a sophomore in college, we all had to choose a disease to report on for a Biology class. A classmate chose MS. During her report, I listened intently and said to myself I could really get that. I had the feeling I would. I pretty much knew, upon the first tingling in my legs after a brisk walk. that I had MS.
I remember the month (April 1992) but not the date. All that sticks out in my memory is having to tell my 8-year old daughter that we had to cancel our planned family trip to Washington, D.C. I guess maybe it helped to focus on the impact of the diagnosis on my family rather than how it would affect me. That came later, in spades.
Funny I just wrote about my experience in my blog yesterday lol. 4 minutes. That’s how long it took for my life to change. My Dr called the day after my MRI, January 13, 2022, less than 1 month after my left side went numb and my vision blurred. 4 minutes to say, “I’m sorry to say you have multiple lesions and it is MS.” Still wrapping my head around everything. Thank you for sharing your story 💛.
What is your blog, Kristin? Feel free to share the link here.
Do was 1976. Still a moving target but have lots of tools now. Brain tumor was their initial thought for me too. Yay no tumor, boo wtf is mS.
wtf indeed