Saturday, October 17, 2015

My One-Year Anniversary: Part 2

Part 1, if you want.

I feel like I left things off a little gloomy in my last post.  Well, let's get one thing straight: I'm doing fine.

At first, it was really hard.  It felt completely out of the blue (although looking back, it had been around for a while -- 5 years or something -- there just wasn't enough evidence/symptoms to do all the testing we did this time around back then), because we hadn't even really considered that it was actually something serious, especially after the neurologic exam went so well (before the MRIs).

I think what was hardest for me was that there was no way to have prevented this.  You know that phenomenon where people try to explain bad things that happen to other people in a way that makes them feel less at risk of those bad things?  Like when someone finds out that a person has lung cancer and they say, "oh was he a smoker?" so they can tell themselves they're not at risk because they don't smoke.  Of course, this is largely subconscious, and seems like a natural reaction to have.  Here's the killer for me: I didn't do anything wrong.  MS isn't something that can really be predicted or prevented.  Modern medicine knows a lot about the disease today, but there's also still a lot that's unknown, so...Anyway, because of this lack of explanation for the cause, it felt like my body had betrayed me.  That's one of the worst feelings in the world.

Ok, ok, hang on.  I told myself that this was going to be a more uplifting post.  On to that...
Look at me, being positive!
So, while it was a very emotional, difficult time for me, there's also a strange comfort to be had in the fact that there isn't a cure.  I know that sounds weird, but when you can't get rid of it, you just have to deal with it.  But here's the other thing: with MS, what I've learned from various doctors is that everyone's experience is different, and nothing is sacred -- meaning that, in theory, the disease could affect any part of my body to any degree.  So, how do you process something that hasn't happened yet?  ....or something that might never happen? ....but maybe will?

The answer, as I've been slowly learning, is just not to try too hard.  There will never be some moment where I'm completely at peace with everything...because what is everything?

I got a therapist back in New Orleans who was affiliated with the MS clinic I went to there.  Actually, I have to say that that was one of the most difficult things to leave - that medical community.  Everyone there, the nurses, the neurologist, the PA, the social worker, was so awesome and compassionate, and everything had such a personal touch.  Anyway, having a therapist was helpful, so I could talk it out and all.

Here's another thing that I did that I had a good feeling about beforehand.  I'm happy to say that I was totally right.

It sort of came to me one day that a tattoo might be a good way to help me process a little bit.  I'm really into tattoos.  I have a lot, and I already have plans for more.  I thought that having an MS-related tattoo would help, because then I would have something that was very definitively positive, and something that was so definitively associated with MS.  But what could it be?  I thought about an orange ribbon, which is the awareness ribbon for MS, but that was a bit too clich√© for me.

For the first few months after being diagnosed, MS was basically all I could think about.  It was the first thing I thought about when I woke up and the last thing I thought about when I went to bed.  When I was with people who didn't know, I felt stranded, because I had no allies.  Not that I actually needed any, but it was just nice to be around someone who was aware of what I was going through.  So sometimes, in those moments of feeling like I was in a bubble, if I felt like I could make it work, I would tell someone.  I know that a lot of people with MS choose not to tell anyone, because you totally don't have to.  It's a "silent disease."  That is, most of the time, other people can't tell that anything's going on with you -- or they never can tell.  (You probably already know someone with MS, even if you don't know it.)  I came up with an analogy for why I'd decided to be open about having MS and all's an elephant in the room.  Period.  The thing is, when I'm the only one who knows about it, it's only my elephant in my room.  If I could just share the elephant with other people, we could move into a bigger, shared room, where the elephant could still hang out, but be a little less oppressive.

I was contemplating that analogy one day, and happened to also be contemplating what my tattoo would be, and it hit me!  So I got the tattoo 2 weeks later.  That's the smallest amount of time I've ever taken to think about a tattoo, and the most confident I've felt about one when I got it.  I had the artist put it in a place that wasn't super visible, so I could choose to show people or not (just like I could choose to tell people about MS or not), so unless I've shown you, you don't know about it.

OK fine you can see it.

I'm kind of in love with the little guy.

As I said, the tattoo had exactly the effect I thought it would.  I smile every time I look at the tattoo, and if I was feeling bummed or gloomy about it, I just took a peek at my elephant.  He was inexorably tied with my MS because of my little analogy above; he was also a super positive symbol for me in general.  I had successfully tricked myself into changing my attitude.

That whole, talking-about-things-to-feel-better-about-them principle applies to other things in life as well.  It's sort of the reason I'm writing this whole blog in the first place.  Writing about the fact that I'm training for a half marathon (one week to go!) in a public forum gives me a bit more accountability.

Speaking of the half marathon, I didn't decide to do it for any reasons remotely related to MS.  But it definitely became a part of it.  My therapist in New Orleans told me to try not to think of the MS as something I hated, because it's a part of me and who I am now.  That said, I feel ok about my mindset surrounding MS and this race.  The running definitely became a vendetta against my body, for my body, if that makes any sense.  If I'm going to have a chronic illness, I want the rest of my body to work pretty damn well.  I wanted to prove to myself that I could do it, despite a continuing occasional negative psychological state, and despite any misconceptions about MS.  There is this one thing that happens when I get really hot (a super common thing that happens with MS patients) where my legs and, depending how hot I get, other parts of my body get this weird, tingly, sort of electric feeling through them.  It's called Uhthoff's phenomenon.  It doesn't mean I'm having a new MS relapse (a.k.a. exacerbation, a.k.a. flare-up); it just means I'm having symptoms.  Whatever.  It doesn't mean anything terrible, but it doesn't necessarily feel good.

Anyhow, everything's fine.  I'll probably write more about this soon, but later.  I've had enough for now, and I think some of you guys might want a break from the heavy stuff.

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