It’s been over 2 decades since I was told that I have multiple sclerosis (MS). Despite all the time that’s passed, my diagnosis experience is something that has stuck with me.
My circumstances were a bit unique and played a huge part in how I handled the news. Not only was I given the news young, at a time when people my age were rarely diagnosed, but I also grew up around a family member with MS. I had already seen some of the worst that the disease could do.
My life was touched by MS long before I was ever diagnosed. Truthfully, I can’t remember a time when it wasn’t part of my life.
You see, my grandfather had the disease.
As a child, I witnessed him go from using a cane, to needing a wheelchair, to being confined to a chair, then to eventually being completely bedridden and requiring around-the-clock care. He had MS at a time when treatments were few and far between. I not only watched his steady decline over the years, but I also assisted in some of his caretaking.
My grandfather moved in with our family when I was very young, after his wife left him. I never learned all the specifics about it. But while his disease may not have been the reason for his marriage’s dissolution, it became hard for me not to view it that way, especially when I was diagnosed myself.
As his health declined, it impacted my family greatly. Someone always had to be around, so vacations and events rarely involved all of us together. Even going out to dinner as a family would require hiring a nurse for a few hours.
My grandfather’s MS required many family members to learn how to do things, ranging from changing and cleaning him after a bowel movement to understanding the basics of a ventilator.
Caring for him had some positives, too. My aunt was inspired to go to nursing school late in life. She still works as a nurse today and has touched countless lives!
And I became a dedicated student. When I was a kid, our school would routinely have a read-a-thon to support MS research. Given my grandfather’s situation, I felt the need to win every year, and always read a tremendous amount.
Watching and participating in my grandfather’s care also taught me the importance of caring and sacrificing for others. Witnessing my family give up things to take care of him had a huge impact on me and how I treat others.
One day in my very early 20s, I went to get out of bed and fell flat on my face.
While I was able to get right back up and brush it off at that moment, I would proceed to fall several more times throughout the day. My legs felt weak, numb, and tingly.
The next day, while at hockey practice, I fell during a drill and couldn’t get back up on my own. I had to be carried off the ice. Eventually, my legs got better, and I could stand again.
A doctor who was affiliated with the team was the first to say, “It sounds like MS, but you’re too young for that.”
The next day, my father took me to see a different doctor who actually had to leave the room and “consult some books” (not something you ever want to hear a doctor say).
By the end of the appointment, I couldn’t stand at all. My legs became numb and stayed that way. I was wheeled across the street to the hospital, where I stayed while they ran tests. After a week or so, I could walk again and was released.
I thanked the doctor and hung up. I then had to face what was, to this day, the hardest moment of my life: telling my parents.
The ramifications of being diagnosed with MS hadn’t really hit me yet.
My main thought at the time was, “How am I going to tell them their son has the same disease as Granddad?” After everything they’d experienced over the years, after all they’d gone through with my grandfather, how could I tell them that I have it, too?
I was so worried for them, and felt so very sorry for them, that it was as if I wasn’t the one with the disease. I hugged them both and delivered the news. I think it’s the only time I’ve ever seen my father cry.
MS had already impacted my family’s lives to such a huge extent. To have to explain that I now had the same illness was devastating to me. I wasn’t worried about myself, I was worried about them.
This concern for my family, coupled with my youth, made me less focused on how MS would affect me. Despite all I’d seen, I was still pretty cocky. I had the mindset that I would not become like my grandfather, that I could somehow fight MS off.
Maybe I was really just in shock because of all I witnessed growing up with my grandfather. I also knew that I had more options than he did.
I started on a disease-modifying medication pretty quickly and placed a lot of faith in that approach. But then, I had another exacerbation, which is a flare-up or worsening of symptoms. This exacerbation affected my vision, the whole right side of my body, and my hands.
Like the first one, it came on suddenly. But this time, it persisted for much longer too. I think that’s when I really started to process everything. Simple acts like feeding myself became difficult. I distinctly remember being frustrated at my inability to use a fork to eat, then getting up and hobbling away from Thanksgiving dinner so I could go cry in my bedroom.
I began needing a lot of help. It wasn’t just being unable to walk — so many aspects of my life became more difficult. I was just 22 years old and needed help cleaning myself up in the bathroom. That’s really when everything with my grandfather hit me. I went from a cocky “that won’t be me” attitude to being terrified that I would end up just like him.
It was additionally traumatic for all this to happen at a time when I was finally about to start my adult life.
It’s so strange to me that those events took place about 22 years ago. When I think about some of those moments, it feels like they happened just yesterday. I’ve now had MS longer than I didn’t have it.
Despite my illness and the many exacerbations it caused, I did go on to have a very good career. That is, until I was in my mid-30s, and the damage done by the disease began to catch up with me. I ended up officially disabled at 35, which was honestly a whole new type of diagnosis to process.
My life with MS didn’t go as well as the young and naive version of me thought it might, but it certainly didn’t go as badly as I’m sure my parents feared.
My latest medication has done a great job of slowing my progression. I firmly believe that if it had existed when I was younger, I wouldn’t be disabled today, just as I’m sure my grandfather would have fared better if he’d had access to the medication I was able to take.
I am truly happy for the latest generation of diagnosed people, as they will have an even better outlook than I had.
I’ve come a long way since my diagnosis. It hasn’t been easy, but it’s made me who I am today, and I like that person a lot.
As awful as getting diagnosed with a chronic illness is, it doesn’t have to be the end of your life. In fact, it’s really a new beginning, and a chance to appreciate all that life offers you. While living with MS has been difficult at times, it’s also given me an appreciation of life that I don’t think I’d have without it. And I’m thankful for that.
One last note: I now celebrate the day of my diagnosis each year. I call it my “MSiversary,” and I usually throw a party or go out and celebrate with friends.
That may be a strange concept to some people, but for me, it’s a way of taking back a little control over the disease. I transform what should be a sad day into a celebration. And now I’m filled with so many fond memories from all those celebrations over the years.
Because of this adaptation, the anniversary of my diagnosis has now come to symbolize joy, and to be something I look forward to.
Devin Garlit lives in southern Delaware with his senior rescue dog, Ferdinand, where he writes about multiple sclerosis. He’s been around MS his entire life, growing up with his grandfather who had the disease, and then being diagnosed himself when starting college. You can follow his MS journey on Facebook or Instagram.