An Open Letter to Myself About My MS

Dear Body,

Why do you continue to disobey me? I don’t understand. Have I mistreated you so badly over the years that it’s time for revenge? Have I done something so dastardly, so hateful that you won’t forgive me? Or do I simply have bad luck?

I know I made some bad choices in the past. Like the time I ate a quart of Ben and Jerry’s Chunky Monkey ice cream for dinner, or when I’d stay up all night to study for college exams. I didn’t mean to neglect you so I don’t think you should be angry.

Maybe you’re still angry about the time I drove into town with my friends during a Vermont blizzard and our car was hit head-on by an elderly driver. A concussion and sixteen stitches in my forehead marked the beginning of numb feet and hands. Uh oh. Maybe that’s it.

Grateful for the good years

I know I should consider myself lucky for the years you ignored my MS diagnosis by allowing me to walk, drive and care for myself unassisted. I was truly grateful for that.

I’d like to remind you that for the first eight years with MS I prayed for an FDA approved medication to help us. When the first two medications came on the market, Betaseron and Avonex, they caused terrible side effects. I’m sorry. The third injectable in 1998, Copaxone, was the charm.

Bad Days Will Happen

Life with Multiple Sclerosis is often described as a roller coaster. With a wide variety of symptoms that can pop up at any moment, we never know when we’ll have the next high or low. No matter how much we plan for the next day, we have to be prepared to toss those plans in the trash. I know I’ve woken up many days with a grand plan of doing super important things (you know, like laundry, showering, walking the dog, etc.), only to have my body suddenly fail me. These types of last minute struggles and changes of plans can be extremely hard to cope with and tend to make me down on myself. It’s important to remember that these moments will happen though, and we can’t beat ourselves up about them.

Canceling plans

Canceling plans is a big part of having MS. The unpredictable nature of our disease can wreak havoc on even the best laid plans. Triggers like stress and temperature are often big culprits, however, there are times when our symptoms get ramped up and we can’t pinpoint any particular reason for it. Sometimes, it just happens. I don’t know about you, but when something just happens and I can’t figure out a reason, I get incredibly frustrated. Not that having a reason makes it that much easier, especially when some triggers are simply unavoidable.

IS THIS DISABILITY SHAMING?

In the time since I was diagnosed with Multiple Sclerosis I have always worried that I would one day be discriminated against because of my MS.

I don't mean it was any sort of fear or anxiety, it was just something that I didn't want to deal with that I knew I eventually would have to, so maybe "worry" is too strong a word.

But since then, I have seemed to develop a concern regarding anyone being able to blame my MS for me not being able to do something that I actually can, because I still try to take personal responsibility for the things that I know I should.

AN ONLINE DEBATE

Well, the other day something interesting happened. On Facebook, I made the mistake of engaging in a conversation of the political type and for some unexplainable reason, I actually thought that I could express a difference in opinion and spark a constructive conversation

… Well since when has the internet not been a place for meaningful conversations and instead a place for exchanging angry insults?..

As you could imagine this did not work out as I had hoped it would, and I was quickly ganged up on by everyone for not agreeing with them. No big deal, I should have known better, this is the internet, but here is where it got interesting.

You see, when I engage in any sort of "debate" about anything (whether it's politics, philosophy, or simply solving a problem regarding the best way to complete a task) I always try to look at it from a "logical" point of view...: problem -solving.

At the same time, I have always been interested in seeing how someone else views a problem and what they think the best solution is.