Growing Up MS

Growing up, I was already a pretty big advocate for those battling multiple sclerosis. I routinely participated in whatever I could to help raise money for research. I also read up and learned what I could about the disease (and back then, there really wasn’t a lot of information). I did all of this because my grandfather, disabled because of the disease, started living with us when I was a young child. My curious mind always wanted to know more about why Granddad was the way he was.  I also wanted to do whatever I could to help him. So, it was a surreal moment, when years later, I too got diagnosed with the disease.

Lessons learned

I’ve mentioned my grandfather in previous writings, I’ve mentioned how I watched him slowly go from using a cane, to a wheelchair, to being completely bedridden, to eventually passing from complications with the disease (all while living under the same roof as me). The experience gave me a unique perspective on the disease, way before I had my first symptom. It’s also made me a huge proponent of disease modifying medications, because I’ve seen the very worst of the disease first hand, I’ve seen what can happen without medication.  While everyone with MS is unique and has a different course, I’ve seen the worst case scenario. Everyone needs to find out what works for them.  

However, I’ve seen what trying to fight the disease with bee venom therapy and only changes to diet can accomplish in an aggressive case of this disease, and it’s not pretty.  It’s a huge reason why I won’t switch from Tysabri unless I absolutely have to. The rare chance of PML is not nearly as scary, to me, as what I’ve seen Multiple Sclerosis do. In short, seeing my grandfather’s decline first hand has ensured that I’ll do whatever I can to ward off my disease progression.

Growing up with my grandfather also allowed me to experience the caregiver side of life. Something that a lot of MS patients, thankfully, don’t get to experience. That has certainly affected my life with MS and the way I treat those that help me. It’s given me an amazing appreciation for those that help others in their time of need. Those that put off parts of their own life to tend to others are the best people this world has to offer. Being a caregiver and then needing one has truly helped me appreciate humanity and the good in people. For that, I am thankful.

Me too

Suddenly going from raising awareness and funding for a disease to actually having said disease is pretty surreal. Particularly because, at the time, we were all very much assured that it was not genetic, that it is not inherited (and as of today, it is still not considered an inherited disease. It does not pass from generation to generation. That said, there is evidence of a genetic risk. So while the disease may not pass down, the risk of getting the disease does. That risk increases when coupled with other factors, like environment.  This is an area that is still very much being studied).

As people who’d been around MS and studied up on it, my family and I were pretty sure of what my initial symptoms probably were, even though the doctors were still very unsure (they were very dismissive of the fact that it could be MS because grandfather also had the disease, almost looking away from MS as the cause because my grandfather had it, and from what they knew at the time, that would have just been too much of a coincidence). When I was finally diagnosed, it was bizarre. I almost felt like I was watching myself in a movie. Like what? The kid that once took top prize in the MS Readathon ends up getting MS? No way, that’s almost too cliche!

The more I thought about it though, it almost felt like it was supposed to happen. Cliche as it may have seemed, that helped me accept the challenge that was ahead of me much more easily than it I hadn’t had the experience of living with my grandfather. It sounds weird, but I almost felt like I had been preparing for it my whole life. My grandfather’s struggles with MS paved the way for mine. Yes, I had seen the very worst of it, but I also did a lot of reading and learning about the advances. I knew I had a better chance than my grandfather (and this was near 20 years ago at this point). I also knew I was a fighter and came from a family of fighters, I knew I’d be fine. Life still hasn’t gone as well as maybe I had hoped, but I can say with confidence that it would have gone a lot worse had I not grown up around MS. I didn’t know it at the time, but living with my grandfather as he fought the disease improved my ability to fight it.

Thankful

I think it’s important for those who fight this disease and have children of their own, to know that, even if I hadn’t gotten MS, being around my grandfather’s battle with it strengthened me as a person. I know some folks worry about what their children will see and how it might affect them. In my case, it taught me a lot, including showing me the goodness, humanity, and courage of people. It helped prepare me for life, and would have even if I didn’t get MS. It taught me how to be strong and yet taught me that it’s OK to not always be strong. It helped shape my life and teach me lessons I might have learned in much harder ways down the line. In short, I am better because I grew up with MS.

Thanks for reading!

Devin

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