It's MSiversary Time!

By Devin Garlit

3 min read

On February 2nd, 2000, I was officially diagnosed with multiple sclerosis. While most people think of February 2nd as Groundhog Day, I know it as my MSiversary. It’s become a special day for me. One that I actually like to celebrate. In addition to partying, I like to take the time around my MSiversary each year to reflect on my life with MS. To look at the past, where I’ve come, and where I’m going with respect to the disease. With so much of my life with MS shared here, I thought I’d share these thoughts here too. This year is a big one for me, as I will now have the disease longer than I didn’t have it.

MS anniversary: An odd milestone

It never crossed my mind 22 years ago that I would eventually be living longer with multiple sclerosis than I did without it, but that’s where I’m at. I know most folks love to say things like “MS doesn’t have me” or to play it off like it’s not a big deal (and for many, that’s true), but for me, it’s now been with me for the majority of my life.

It’d be foolish of me to say that my illness hasn’t been formational in my life, that it hasn’t helped shape and mold who I am as a person. It’s had a major impact on my life and who I’ve become. A big reason for that was that I became disabled at just 35 years of age because of this disease, a fact that I am still having trouble with seven years later. However, it’d be crazy for me to not acknowledge that being as young as I was when I was diagnosed also impacted me. Still in college and becoming who I was meant to be and having an incurable illness thrust on me, had to have impacted who I became.

This milestone won’t matter to future Devins

One thing I’m so happy to think about on this MSiversary is that in the future, a milestone like this won’t have the same impact on people. The newer medications are incredibly effective. The more people have access to them early in their diagnosis, the less debilitating this disease will be to the population.

I know that if I’d had access to my current medication (Tysabri) or any of the newer ones when I was diagnosed, I would not be disabled today. Those medications simply didn’t exist back then. Medicine has come a long way during my life with MS, so much so that the future is very bright for those that get this disease. While it’d be easy for me to curse and bemoan that I didn’t have these medications available to me, I’d rather focus on being happy for the next person that this disease attacks.

The worst of things can turn out well

While I can’t sit here and say that my life is perfect, I can say that I like who I’ve become. Despite being unable to work, struggling with painful symptoms, and wrestling with mental health challenges, I still feel like my experience with MS has helped me grow into a good person. While my struggles seem relentless at times, I’m still able to find enjoyment in the smaller things in life. Even on my worst days, I can usually still find something to smile at, and I like to credit my life with MS for that. While on paper, my life looks like a disaster and not how anyone would have planned, it doesn’t always feel that. Living with MS for so long has made me realize that even the worst situations can have their silver linings, and for that, I am thankful.

I celebrate

As I often say to others when their MSiversary pops up, celebrate it! I celebrate it each year because of all the things I’ve mentioned here already, but also because it’s a way of gaining control. The anniversary of being diagnosed with an incurable disease isn’t normally a reason for joy, so I make it one. I’ve now turned this day from something sad into something I look forward to, and that’s a big reason why I celebrate. Instead of moping and sitting around thinking about all that’s happened or what could have been, I try to focus on how much fun I can have that day. I make my MSiversary MY day, not the disease’s, and I am better off for it.

Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!

Devin

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cheyennejourney Member
<inline-mention username="Devin Garlit" user-id="3978256"/> I admire your way of looking at it. I remember when I was "official", on 2.17.14, I felt like I had "won the fight". As I had spent 350 days trying to get help. My onset was quick and brutal. My leg went out from under me on 3/4/13 and within 3-5 months I was having trouble with everything from walking, speech, cognitive, urinary, and swallowing. I have been dreading the anniversary of the symptoms coming in March (9 years of complete disintegration). But I really appreciate you sharing your way of coping. It helps a little and I appreciate you.
1. Devin Garlit Moderator
 Thanks so much, <inline-mention username="cheyennejourney" user-id="4080790"/>! My onset was very similar. It was so incredibly quick, I could walk one moment and then couldn't the next (and for several weeks). While tomorrow is my diagnosis date, like most of us, symptoms came on way before that and it took a while to accurately diagnose me. Best of luck to you and thanks so much for sharing some of your experience!
Harry1968 Member
Well you are a far better person then me Devin. This horrible disease ruined my life . It just sucks that we have to suffer every single day and get worse. But I understand what your saying and how you deal with it. I am just angry that my damn body turned on me. I was always health conscience and started working out at 15 years old five days a week. It became second nature to me. I didn't want to smoke cigarettes or drink and not exercise like my parents and my sister's did. I continued that healthy path for years. But all that didn't matter still got MS. I should have smoked several packs of cigarettes a day , I should have done drugs like the other kids in highschool and after high school and I should have been a drunk. Then I probably would have been healthy like most people are that do those horrible things to there bodies.
1. Lori Foster Member
 How horribly frustrating, <inline-mention username="harry" user-id="4053774"/>. Life is certainly not fair. I wish it were that simple, that you could do all those things and not develop MS, but MS is rather cold in that way. It does not discriminate. I hope all those years of self-care have resulted in slower progression that what might have been. Sending the best of all possible wishes your way. - Lori (Team Member_ 
2. Devin Garlit Moderator
 Thank you <inline-mention username="harry" user-id="4053774"/>, I very much sympathize. It sucks and it's far from fair. I think that's one reason that I choose to celebrate this day. Kind of my way saying "F" you to the disease, it's the disease's day, but I take it and choose to make it about me, to treat myself. Best of luck to you, I was very health conscience and an athlete before this too, so I understand exactly where you are coming from.
Allie R Member
In September of 2002 I was told I definitely did not have MS because only one lesion was detected on MRI. September of 2006 I was then told by the same neurologist that I definitely did have it. I now date the appearance of MS to the winter/spring of 1994 when a vicious and recurring case of mono forced me to withdraw from law school, changing the trajectory of my life completely. After very careful review of the literature, I refused all those early treatments. I was raising five young children and absolutely could not afford to live with the side effects of interferons, especially in light of the limited effectiveness observed in studies. Perhaps it was a foolish decision, but I enjoyed a ten year period of only two relapses and a life without flu symptoms. As soon as more effective treatments became available, I took them. Tecfidera did not work for me, but Tysabri was the best thing ever. I could feel it doing good even with the IV still in my arm. Unfortunately, my JC titre became too high so I am now on Ocrevus which, while superior to Tecfidera, is not the same as Tysabri. Like most of you, I have lost so much to this disease-career, marriage, hundreds of thousands of dollars in lost earnings, etc. The research into EBV gives me hope that this horrible disease can be prevented and/or cured in its earliest stages. 
1. Lori Foster Member
 Wouldn't that be wonderful, <inline-mention username="Allie R" user-id="4534437"/>? I hope Ocrevus as least slows things down for you. Thinking of you and wishing you the very best. - Lori (Team Member) 
2. Devin Garlit Moderator
 Thanks so much <inline-mention username="Allie R" user-id="4534437"/>, appreciate you sharing some of your story here, it's always appreciated. The research into EBV is definitely promising, we've come a long way over the years in terms of treatment and learning about potential causes. Even if it doesn't always seem it.
Therry Neilsen Moderator & Contributor
Devin, if you became disabled at 35, and that was seven years ago, that means that this year you are 42. Now, you know me, and you know that I'll go for the joke no matter the consequences. I am a major fan of The Hitchhiker's Guide to the Galaxy, the life's work of the late, great Douglas Adams. At some point in his five part trilogy, someone asks the Great Computer Deep Thought what the answer to Life! The Universe! and Everything is!, and Deep Thought goes into some sort of paroxysm and replies, "I have the answer to Life! The Universe! and Everything!". Cautioning the questioner that he is not going to LIKE the answer, Deep Thought then tells the questioner that the answer is 42. For the next twelve months, Devin, YOU are the answer to Life, the Universe and Everything.
everchangingms Member
Devin, Always Great Article you write. Inspiring in a way, but my anniversary not doing as well. Don't want others to get excited of what this disease doesn't come with. The unexpected "end stage" is what or all I can call it. What to prepare for, what needs done, or hasn't been done. Not to say its in a day, week month or years. Just that it is there for me. Knowledge is power, that keeps me going, trying to bide time with bandage approaches expert Drs and science supplies. Even the weird questions I ask my Drs are looked into. A hitchhikers guide to the galexy, forgot about that.. Wow!! Perhaps it has something I forgotten about., as I can not get my mind to blog on my condition. Still walk with a cane, Botox and Ampyra, along with a miniature poodle and small westie dog and my partner keeps me going. Everchangingms.blogspot.com JoeY
1. Erin Rush Community Admin
 <inline-mention username="everchangingms" user-id="3988457"/>, I definitely think each individual can recognize their MS anniversary however they see fit. Much like the disease itself, how people choose to respond to it is definitely not "one-size-fits-all"! I hope a full cure for MS is found well within our lifetimes. And I am glad you have your writing, your partner, your strength, and your two furry buddies to keep you going! Best, Erin, <a href='https://multiplesclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member.