Lessons From My Grandfather's MS: Part One

Recently, I wrote a piece about how I worry about inconveniencing people with my illness. In it, I mention some of my experience growing up with someone else who had multiple sclerosis and how it contributed to this concern I had about putting people out due to my disease.

Seeing the impact of MS first hand through my grandfather

After writing that, I began thinking a bit more about how my experiences with my grandfather have impacted me, now that I too suffer from MS. This could obviously be an expansive subject, but I’m in a unique position, so I do think it’s worth exploring. There is no doubt that seeing the disease first hand before getting it helped shape my approach to living with the illness. Some of my memories are clouded by the cognitive impact of the disease; others are cloudy simply because I was so young during some parts of it. So I tell this as I see it, as I remember it, and as it impacted me.

Watching his MS progress over the years

My paternal grandfather lived with us from when I was a young child through college (when I was diagnosed). He lived during a time when there really was no legitimate therapy to halt the disease. So it progressed, leaving him completely disabled over time, unable to speak or even move on his own, before MS finally took him. I watched him go from a cane to a wheelchair to being unable to sit up (needing 24/7 care) to passing. I helped care for him when needed and would occasionally go in and watch baseball with him (and I so wish I had done more of that - why didn’t I do more of that? As someone who is often so lonely because of my disease, that still hits me hard).

A fear of being undesired

We took him in when I was young because his wife and youngest son wouldn’t have him (that is at least how I remember it, again, I was a child and not told everything). It’s alluded to that maybe he wasn’t always the best husband or father. I can’t attest to any of that, but what I can tell you is that getting diagnosed with the same disease as someone who had family unwilling to care for him (for whatever reason) definitely impacted me. I often complain about loneliness here, and I’ll be honest, his situation crosses my mind. Am I or will I be as unwanted as him because of my illness or because of the behavior my illness causes? It is a terrible thought and one that I’ve struggled with mightily since the very day I was diagnosed.

Reminding myself that he was still loved

While those fears of being undesirable often creep up in my mind, I remind myself that he was still loved. My family took him in when no one would. We cared for him, sacrificed for him. We seldom went on vacation or similar activities as a family unit so that someone could stay behind and care for him. My mom and dad will probably never realize just how incredible they are for that. My mom and dad are heroes, real-life superheroes who altered their lives and their family’s lives to care for him.

Their actions left an impression on me

When they did this, they had no idea their oldest son would one day be afflicted with the same disease, they did it because they were good people. That’s what real heroes do, they sacrifice for others because it’s the right thing to do. Sure, it caused some hardships for my family along the way, it wasn’t easy, but it left one hell of an impression on me. When I think about how nasty and uncaring the world is, when I worry about anyone caring about me, I think of how my parents agreed to take my grandfather in and it strengthens my belief in people.

Importance of treatment

One of the biggest things I’ve learned from my grandfather’s MS is the importance of treatment. It’s a big reason I’m such a huge proponent of getting on a disease-modifying therapy as soon as possible. Having witnessed him deteriorate first hand because he had no medication available to halt his MS left an indelible mark on me. You could say he treated with diet alone, as his diet was carefully monitored; in the back half of his MS, he actually required a feeding tube, so a careful diet did nothing for him. Everyone with MS is different; not everyone left untreated will have the same progression he did. That said, if you witnessed it first hand, as I did, you’d think twice about not taking a recommended disease-modifying therapy. They may not make you feel better in the moment, but they can be crucial to your future.

Thanks so much for reading and always feel free to share! I’ve definitely learned more than this from my grandfather’s MS, so I hope to continue this series in the future.

Devin

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