As I settled into my chair for the 8th time, I couldn’t help but overhear the young man a few chairs down from me.
He was talking quickly, excitedly as some might describe it. You could tell that he was trying to be brave, but inside he was dying.
It was his first time here at the infusion center.
It was his first infusion.
As the nurse started his pre drugs and got his IV in and all set up, he started rambling on to her about how young he was and how everyone thought it strange that he has multiple sclerosis (all of us younging are rolling our eyes right now at how wrong so many Drs. are on age… but that’s a discussion for another day 😉 ). He kept reiterating how he’s not worried, and it’s “no big deal…”
I instantly got flashbacks to my first time.
I was lucky enough that it was precovid, so I could bring a buddy. The first time my Mom, the second time my husband. They acted as support and reassurance in case anything went wrong. But also served as a distraction, since the Ocrevus peeps are always the longest treatments of the day by far.
One of my favorite parts of infusion day is overhearing (okay okay, eavesdropping) on the life stories of others. Everyone who walks in and out of the door all day has a unique story, and they recognize that their time is not infinite. The people who visit the infusion center know that they only have a certain amount of time left. I think a lot of them are just happy for their story to be heard. I know I am.
The boy went on to say how his insurance wouldnt approve Ocrevus (why I don’t know) so his neuro settled on Rituxin… which for those who don’t know is essentially the same thing.
It made me think about the first conversation I had with another MSer and she warned me that I would have to be my own best health advocate, because nobody was really looking out for me.
It struck me as odd. But already feeling like insurance was a racket, I didn’t argue. Now having lived this chronic illness life for 4 years- I understand what she means.
All of my specialists may not always talk together. Things get overlooked. Results don’t get interpreted correctly. On more than one occasion I have had to ask for the prescription I want, or ask for a referral to someone who would look at a certain issue. I had a digestive expert literally brush me off about a positive hepatitis B test, turns out- he was oh so wrong like my gut was telling me (no pun intended).
I was instantly sad for this boy. And all of the other people who come through these doors with MS. I know it’s high in this area. It’s not lost on me that we have higher than average rates of brain diseases and cancers, and have multiple nuclear installations and government brownfields in this area (again, another topic for another day haha).
We all looked at our whole lives ahead of us.
Until one day we couldn’t.
We were told, you have this thing.
And it has no cure.
Some still pray for a cure- and that is great.
I’m more of a realist in this situation. I’d rather plan for the worst and let myself fall somewhere in the middle.
I recognize that if I want to climb to basecamp, or run a marathon, or do anything that requires physical strength- I need to do it NOW.
Because it’s MORE likely than it is NOT likely that I will need a mobility aid someday. And that’s OK with me.
I smiled to myself at this boy’s courage and strength. He was making lemonade out of lemons, and looking at the rainbows out of the rain. A reminder that a lot of us need sometimes. Especially those of us living with chronic illness.
Like anything, we can get stuck in a rut too. A downward spiral when we have an off day, or are going through a rough week.
Life with multiple sclerosis isn’t perfect. It’s an unpredictable nightmare, and only those who “Get it” get it.
I hope that he continues on his path of positivity. And lets his light shine from within.
The world needs more of that.