To Devin on His 20th MSiversary
February 2nd (yes, Groundhog Day) is a big day for me; I actually consider it my most important day of the year. It’s the day of my MSiversary, the anniversary of the day I was diagnosed. I’ve discussed the significance of this day in the past, notably how I prefer to celebrate it. Each year, the day fills me with a tremendous mix of emotions by the end of which I try to focus on the good.
Two decades since I got that phone call
This year seems bigger than most, as I will be celebrating my 20th MSiversary. A full two decades since I got the phone call confirming what my whole family expected, that I, like my grandfather before me, have multiple sclerosis. Twenty years is a long time to live with a disease, and so I thought I’d take a few moments and reflect on that time.
Why I celebrate
Yes, I celebrate this day every year. Sometimes I throw a party; sometimes I do a bar crawl - one year, I got a large group of friends to go to a Flyers game with me, but no matter what I do, I always try to mark the day and the importance of it to me. Multiple sclerosis isn’t my whole life, but after all this time, it’s impacted every single part of my life. At this point, MS has molded me, shaped me, and I can honestly say I wouldn’t be the same person without it.
I like the person I have become
That’s important, because at the end of the day, even though I wouldn’t choose to have this disease, I like the person it’s made me. I feel that by celebrating this day, I’m owning it, I’m turning what would be a sad moment for most into something that I can smile about. It’s my way of saying, “I’m not locked into this prison of a body with MS, it’s locked in here with me."
The impact of two decades with MS
When I look at myself after twenty years with multiple sclerosis, the impact of the disease is everywhere. I am 42 and disabled. It’s been a few years now since my body forced me to leave my career, since it stole my identity. I still look decent on the outside (though far removed from the former, very much in shape, collegiate athlete I was when diagnosed).
Living with chronic pain
However, I suffer from pain pretty much every day. Burning, searing, nerve pain that can seem never-ending. I routinely still fall and deal with numbness and spasms. I’ve developed cognitive issues that I never even knew were possible when I was first diagnosed.
I feel older than I am
I’m also routinely stuck in my tracks with awful fatigue. I’m such a mess that on some days, the simple act of showering can be problematic. My body is broken on the inside, with numerous areas that the disease has attacked over time, and it makes me feel much older than my age.
The effect of MS on my relationships
The effects of my illness, both physical and emotional, have taken its toll, severing relationships, friendships, and even a marriage. As the years and symptoms mounted, depression, something I did not experience for most of my life, became a new challenge the disease threw at me. While not everyone is affected the same way by this illness (I’d say I’m middle of the road as far as severity), in my case, I can say it’s had a tremendous impact on my life.
It’s amazing I’m still going
Twenty years ago, it never crossed my mind that I’d someday be talking about having lived so long with this illness. As I mentioned, I grew up with a grandfather who suffered from the same disease. He essentially had no treatments available, at least nothing that could slow the illness like the disease-modifying medications we have available today, so I’ve seen the very worst of what MS can do.
How scientific breakthroughs and awareness have made a difference
I was also firmly aware of the realities it could have on my life expectancy. The fact that I’m alive and even writing this is a testament to the scientific advances that have happened over those twenty years. That fact is also great evidence that the fundraisers, all the walks, readathons, swims, etc. also have an impact. While we have no cure to this complicated disease, we are closer than ever, and we have amazing treatments that simply didn’t exist just two decades ago. The people diagnosed today will be in much better shape at their twenty-year mark than me, just as I am in much better condition than my grandfather at that time. That’s because while it may not seem like it, people are working hard at this disease and advances are happening.
To younger me from older me
If I could go back and talk to that oh-so-young and naive 22-year-old who got diagnosed, I’d tell him it’s going to be OK. It’s going to be very hard, but you’ll be better because of the journey. I’d tell him to learn patience, and I’d tell him to never skip his medication (and if it all possible, switch to one of the infusions over an injectable as soon as they become available). I’d tell him that the disease will have as much or even greater impact among those around him than to him, that it is far easier to have the disease than to know a loved one with it.
I'm tougher than I imagined
I’d tell him to be more open about his symptoms with his loved ones, to not try to bear it all himself. I’d tell him to do what I already know he’ll do, to always keep fighting, to just keep getting up every time the illness or life knocks him down (which will be plenty). I’d also tell that cocky 22-year-old that he’s actually even tougher than he thinks he is and that in all my years with the disease, I’ve only ever met the toughest of people who have this disease. Finally, I’ll say that your life will in no way be the one you expected, but that’s not a bad thing.
Final thoughts: I am proud
Twenty years is a long time, and a stretch of time that long is bound to be filled with ups and downs. It’d be extremely easy to focus on the down moments and what this disease has taken from me. That doesn’t really fit with my idea that this should be a celebration though. I acknowledge that the disease has changed my life dramatically and it has stolen from me, but instead of lamenting those losses, I’d like to think about how proud I am that I’ve survived them. Those losses, however painful, have made me who I am today and I’m proud of who I’ve become. I make an effort not to think of the bad moments without looking at the end result.
A reason to celebrate
As someone whose siblings and friends now have children of their own, I take comfort in the advances I’ve seen over the past twenty years. I know that with the disease-modifying therapies we have now, should their children get MS, they won’t have to endure some of the hardships that I have. I like to think how much I helped that by participating in all of the various charity events and by simply spreading knowledge about the disease. That’s a very comforting thought and most definitely a reason to celebrate.
How many specialists did you see before finding "The One"?