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A letter from my newly diagnosed self to my MS self of today

By Dan Digmann

You likely have read an essay where a person living with an illness writes a fictitious letter to their newly diagnosed self. The premise is so simple yet purposefully intentional. What words did you need to hear then? Was there anything you wished someone told you that could have made your journey easier? Such a letter encourages and comforts countless other people who were recently diagnosed, but it also is so cathartic in releasing the pain of pent-up emotions for the words we never heard. Hands that were never held. Reassurances we never received. 

As I celebrate (and I do celebrate!) 21 years since my formal MS diagnosis, I realize there is a different kind of essay that I need to write and others living with the disease need to hear: A fictitious letter from my newly diagnosed self to my MS-experienced self of today. And it didn’t take much to recall what I was thinking more than two decades ago. Those of us living with MS understand that not even time can make us forget how we felt after hearing the phrase we had feared: “You have MS.”

Dear MS-experienced Dan,

I’m sitting here in the kitchen on Feb. 14, 2000, not knowing what to do. Staring at the fridge. Then the counter. And back to the fridge. My mind is totally numb, and it has absolutely nothing and everything to do with MS. Are you serious? How did this happen to me? I mean, me! And MS? What did I do and where did I go wrong? Can I fix it? Is it just going to get worse? What does this mean for me and the rest of my life?

Yes, I’m asking a lot of questions, but I don't even know where to start. It’s like someone took everything out of the house and scattered it throughout the yard, and now I’m supposed to get it all back inside and put it in the same exact place it was. I still am trying to wrap my head around this thing. Oh yeah, my head and my spinal cord, right? See what I did there? I am paying attention to what the neurologist said, and I still have my sense of humor. Sort of. 

I mean, MS isn’t a laughing matter. It’s a chronic progressive disease of the central nervous system. And while it isn’t a terminal illness, which is encouraging, there is no cure, which is so sickeningly discouraging on so many levels. Yes, there are three medications I can choose from to slow its progression and severity, but they all are injectable. How convenient they respectively start with the letter A, B and C, so we can lovingly refer to them as the “A-B-C drugs.” 

How charming.

Meanwhile, all I do is sit and worry about what MS is and isn’t doing to me, what I should and shouldn’t be doing to treat it, and whether or not it’s worth it for me to put up a fight or if I’m perpetually engaged in a losing battle. 

I get it. There isn’t anything my future self can do to help me make it through today. I guess I just needed to get this off my chest to you because you are the one person who understands what it’s like to be me at this point in time. MS affects everyone differently, right? See? I was listening to my neurologist.

You know what’s on my mind and in my heart. And I know you know I will find my way through this. Not getting better per se, but eventually getting everything pulled in from the yard and back to where it belongs. You’re right. It would be a great time to get rid of the excess baggage and clutter I don’t need in my life. You know: Pointless worries. Unsubstantiated anxieties. Loveless relationships.

And you of all people understand why I can’t get the words that Bruce Springsteen so often uses in his concerts out of my head. You remember, when he says something along the lines of, “Unlike my competitors, I can’t promise you life everlasting, but what I can promise you is life right now!” I realize I will get to that better place where I’m at peace with this and have taken as much control of this as I can. Someday. But what is helping me through my life at this moment?

Maybe it’s just knowing that there is the promise of a better tomorrow. That with each day, I have another opportunity to stay ahead of this disease. And you can’t be where you are in the future if I don’t get my house back in order today. So, I will make this promise to you today if you uphold your end of the bargain throughout each day that follows. I’m trusting that in the future you will continue to:
  • Unapologetically maintain your positive attitude.
  • Keep your head and heart in this game I call “Living with MS.”
  • Take good care of yourself and continue to control everything that you can, from diet to exercise to attitude.
  • Believe in yourself more than you fear the disease.
  • Get excited about all advancements in research that helps people slow the progression of the disease and gets us closer to a cure. I mean, can you imagine if they came up with a disease-modifying therapy that didn’t have to be injected?
  • Stay strong and always show gratitude.
  • Relentlessly rely on your faith.
  • Continue to increase your friendship base (I am foreseeing we’ll need a lot of them).
  • Always remember the fears I’m feeling following my diagnosis so you always will be there to help the newly diagnosed to deal with their lifetime adjustment.
  • Never forget how hopeless everything seemed when I didn’t know where to start so that you forever will find encouragement in how far you’ve come.
  • It’s good to focus on the future but remember to always embrace all the good that you have right now!

You give me hope for my future,
Newly Diagnosed Dan