The Road Ahead
“Don’t spend a lot of time imagining the worst-case scenario. It rarely goes down as you imagine it will, and if by some fluke it does, you will have lived it twice.”
– Michael J. Fox
It’s a punch in the gut to hear “your disease is progressing.”
My neurologist used those exact words at my most recent appointment. It wasn’t a surprise for either of us. He knew I had been struggling with flare-ups over the past year, and the results of my latest MRI confirmed that. So, honestly, I would have been stunned to learn otherwise.
I’m not even sure what I did the rest of the day. I wasn’t depressed or even sad–just deflated.
I find that optimism is valuable therapy in my battle against MS. But sometimes, I need a break to allow myself to think, “this really sucks.”
In this somber moment, I remember that I’m a guy living with a chronic disease… and this particular type of disease tends to get worse over time, not better.
A dark cloud will hang over me, maybe for just a few seconds, minutes; or even a couple of days.
And honestly, I think that’s ok.
The reality is, we all face something and carry around our own bag of rocks that weigh us down. Maybe it’s not as heavy as multiple sclerosis… perhaps it’s even worse.
Punches in the gut are fine–they happen–but how do I respond?
I resist venturing too far into the darkness by reminding myself of how far the medical community has come with MS treatments. And although MS isn’t a household word, I believe awareness and understanding of this disease, within the general population and even among medical professionals, has greatly improved within the past few decades. I also realize how fortunate I am to be surrounded by a loving family, wonderful friends and an excellent medical team.
Those truths provide me soft cover from the repeated blows of to my health.
In its own way, MS serves as a perpetual reminder of how blessed I am: Every step I take. Every day I have clear vision. Every time I find the energy to hang out with my children. Every moment that I don’t feel pain, a spasm or tingling sensation.
These thoughts echoed in my head during my latest doctor’s appointment. And, after my neurologist confirmed the progression of my MS, we decided I should start a new treatment.
On the one hand, it is good news. I’ll be replacing shots with a pill. I can’t complain about that!
But there’s uneasiness that comes with it, too. What if my body doesn’t respond well to this new medication? What if my disease progresses even more?
All these worries are out of my hands, so I will focus on what I can control.
And really, that’s all any of us can do. Why should I waste a moment of my day wondering if new lesions are forming, or if old ones are intensifying? What I can do is make healthy choices each day. Being active as best as I can, eating well and resting when needed (which can be quite often).
I stay informed about MS and regularly meet with my doctors.
I know there will be more punches to come, but I’m prepared. No jab hurt worse than when I was first diagnosed in May 2008.
I choose not to imagine the worst-case scenarios on my journey with multiple sclerosis. Sometimes, I pause to reflect how difficult it can be on my Life Less Traveled, but I know the road ahead always sparkles with beautiful potential.
Address racial disparities and inequities in the healthcare system that impede access to care, and ultimately, a cure, for MS.