I’ve lived my life with MS as though we’re in a competition together. I trash talk it every day. Gotta be tough, ya know? Not that this chronic disease of the central nervous system cares what I have to say. I won’t hurt its feeling. But I talk tough so it won’t hurt mine.
Still, no matter how tough I talk after I throw down and capitalize on accomplishing another goal – everything from getting out of bed in the morning to finishing another training run or organized race – I know this disease will bring me to tears at least once every other year.
I cried earlier this week.
My neurologist, Dr. Surendra Kaul, likes to do an MRI of my brain every other year to monitor the progression of the disease. It is through this magnetic resonance imaging of my brain that he can gauge the disease’s activity over the previous 24 months.
It’s one of those things where even though I’m not experiencing any negative effects of MS on the surface doesn’t mean it isn’t wreaking havoc throughout my central nervous system. The MRI is proof positive whether or not the disease has stealthily destroyed unused portions of my brain as I’ve naively went about my business thinking I’ve kept this beast at bay.
I’m not going to lie: I peeked at the MRI scans before I took them into Dr. Kaul. Not that I could tell what any of them specifically meant, but I know enough to look for the white spots on the brain. These spots are the scarring, or sclerosis – evidence of where my immune system has mistakenly attacked the myelin sheath surrounding my nerve cells.
As always, I got a little short of breath when I knew I found the scan I was looking for. I wondered to my self whether there were too many white spots this time. Is this worse than what it was before? Or is it the same? Maybe it’s worse. Wait. Don’t read into it, Dummy. It’s probably nothing. But how can I tell? I can’t. And I won’t.
So I prayed. Not that I prayed it wouldn’t be bad news, but for the strength to handle whatever news I received. Interesting thing to note is that you can connect with God even if you don’t fold your hands. God is good that way. I mean, come on. It’s God.
Like a criminal awaiting his sentencing, I stood firm when Dr. Kaul clipped THE scan to the light board in the exam room. Pointing to the scan that I had feared, he said something to the effect that this one looked just like it did two years ago, and he confirmed what the radiologist had reported each time I’ve had an MRI over the past decade.
“There is no progression in the disease. Everything is stable.”
And as I always have done following each MRI for the past decade, I saved my tears for the car.
Then I trash talked the disease all the way home.
No. No, no, no, no, no.
Your MS is STABLE, so why in the world are you trash talking to it? Don’t be a ninny – be kind to your MS as it is being kind to you; except for the fact that it has decided to take up residence in YOUR CNS, that is.
Play NICE with your MS. Don’t get me wrong. MS is not always a nice player – and at those times you may trash talk to it all you want. But when it’s being kindly to you – show your appreciation and make nice in return. It’s only fair.
May the stability it has shown you last for many years to come.
You’ve just given me courage to go ahead and publish the poem I’d written but held back for some time. There are a few curse words that did not make it in, but I think my intent will be obvious.
As for the nonprogression of the disease, hurrah!
Go ahead. Trash talk this MF disease because sometimes the lack of rhyme or reason is BS. (Pardon my French. How did bad language get to be French anyways?) I imagine that several folks say “I have MS, but MS does not have me”. You can certainly say that. Just look at your MRI.
By the way, congratulpations on that.
Great news! Happy to know the MonSter is minding its MannerS. Saw you & Jennifer smiling @ me from my Morning Sun:) Sorry I have to miss your speaker series presentation, but I have a JOB!
Dan, your the man, nuff said! You and Jennifer both are champions. Congrats on your latest news and continued achievements in reaching your goals! Your disease has too brought me tears…
I think you guys are great. You’re vocal about MS in a very distinct way that is very good for the community. You’re a great team.
This sentence made me laugh, “I know this disease will bring me to tears at least once every other year.”
What? Once every other year? I’m in tears once every other week! Of course, I’m recently diagnosed. This disease is literally different for everyone we are all at different stages. I was just diagnosed, but I’m having some serious mobility issues, and those are probably the kind of symptoms that make you turn into a giant cry baby. (I’m proudly a giant cry baby.)
I’m not criticizing you, just the idea of crying once every other year with MS is kind of funny to me. Keep doing what you do, you guys do it very well!
Also, Michael B. Gerber, I started reading your comment and it made me LOL. This stupid MF disease is BS!
As always, I am overwhelmed by your perspective. I only wish I could see some things in life the way you and Jennifer do and communicate them the way you do. I am proud of all that you both are doing. Keep it up, bro!
Can I just say hearing from you and reading this blog gave me my first tears of joy in months?!
I feel like I have found kindred spirits in this wild new world I’ve found myself in.
I think my journey will be that much more meaningful now that I can share it with you two.
Best of wishes, and stay strong!
Jenn