Some Assembly Required

It is the first anniversary of my Multiple Sclerosis diagnosis. Over these last 12 months, my world has been shaken up like an airport-gift-shop snow globe. And now I find myself trying to reassemble my life. I’m putting the pieces back together, scars and all.

In the 40 years B.C. (Before Central nervous system betrayal), I never could imagine the havoc being wreaked on my central nervous system. I was blissfully unaware that my immune system was devouring my myelin.

Now, in year 2 A. D. (After Diagnosis), everything is different. But nothing has changed. I am finding that things are infinitely more complicated now. At the same time, things are immeasurably more straightforward.

And that is a strange and wonderful place to be.

Here is a perfect example. I am back in the dating pool. I can’t decide if I am ridiculously stupid or ridiculously optimistic. But, I am dating. Which—let’s face it—kind of sucks. I am starting to be convinced that the only reason people couple up is so they can quit having first dates. (Well, except those people that will never STOP having first dates. But, I digress…)

I wrestle with telling dates about my MS. Should I tell them early in the first evening, so that they can make an informed decision regarding setting up a date number two? Or tell them after date six, when they are already thinking that they might kind of like me? It’s complicated.

And, it is also so simple. Explaining to dates about my MS tells them one thing about me. How they react tells me everything about them. So, MS is actually a fairly sharp tool that can help me remove liabilities before they take root in my life.

Occasionally, when driving with my son on some silly errand, he will drop a wisdom bomb on me from his place in the backseat. His latest one was lobbed my way this weekend:

Sometimes good things happen because bad things happen. If you didn’t have MS, you would have never have started Derby.

Kidlet is right. I never would have had the courage to even show up to tryouts. And last week, I found the courage to try a jump. I let all eight of my wheels lift from the ground and land again. That was an incredible moment for me. I never would have experience that feeling if I didn’t have MS.

This last year made me realize that there are no safe places. You never know where and when pain will sneak out of a dark corner and jump on you. There is physical pain. Quite a bit, actually. But the emotional pain is so much worse. And it happens in the most banal places. The neurologist’s waiting room. A Little League game. The break room at work.

I’m never really safe. So why bother to play it safe? There is disaster wreckage piled up in every corner of my life. But, now… I dare to jump over it.

Unfortunately, as my body gets stronger, my brain continues to betray me. And, really, is there anything worse than betrayal? In the Aaron Sorkin show The Newsroom, one of my favorite of many brilliant exchanges was:

Why can’t I forgive her?

Because you weren’t rejected. You were betrayed.

This year has been a year of betrayal for me. I think betrayal is one of the worst feelings found in the human experience. My brain, my heart, my trust have all been shredded. But this has also been a year of great discovery. I’ve met some amazing people, who constantly remind me that I am strong, and beautiful, and amazing, and balanced.

My life today would be unrecognizable to the Elys of one year ago. The Who and the What of the future have all been undone. Disassembled. Now, my body is covered with bruises. Some are little and round, created by injecting myself with Interferon Beta‎. Others are large and round, created from a skate wheel. My muscles are stronger and tougher than they have ever been before. Including—for better or worse—my heart.

Everything is different.

And nothing has changed.

It’s very complicated. And incredibly simple. I know what I want. I want to trust others. I want to feel safe. I want to take care of my loved ones and be taken care of by them. I want to laugh more than I cry. I want to go to bed every night knowing that the people I loved through the day will be worthy of my love tomorrow.

And I know great beauty is born of chaos.

The Good, the Bad, and the Ugly

This is how I would describe my weekend: Spaghetti Western.

The Good

The Good started out on Friday afternoon. I met with my Neurologist, who told me that my latest MRI results showed positive signs. While the little divots dissolved out of my myelin will never be repaired (at least not with current knowledge of medicine), the progression seems to have slowed and the inflammation has calmed. That was the word she used: calmed. The Avonex appears to be doing its job with little impact on my liver.

On Sunday night, it was my turn to host Sunday dinner. Every year, around Halloween, I usually go all-out on a spooky party. And the older my son, nephew, and nieces get, the more fun we have. This year, the kiddos ate brains with blood sauce, devils eyes, vampire fingers, and miniature pumpkins with a side of ghost.

The adults had spaghetti with meat sauce, deviled eggs, garlic breadsticks, and mandarin oranges with bananas. We also decorated sugar skulls, which was a ton of fun.

The Bad

Apparently, in all these times I have been shoved down an MRI tube, no one has thought to look at my neck. Or more specifically, my brain stem and spinal cord. So guess who has to participate in another MRI next week. If you guessed Salma Hayek , I can understand why. I am often confused for her. But, no, it is me that gets that little party. (Salma may actually be having an MRI next week. But if she is, she didn’t mention it to me.) Really, is there anything that brings quite the feeling of humiliation of sitting in a waiting area—in a hospital gown—with ten other people who are waiting for their procedures?

Another Bad of the weekend happened Saturday morning when I attempted to make a jump while on skates. Let me be very clear here. I got nowhere near anything most literate people would label as a jump. Maybe, if someone were being exceptionally generous, it could be called a cowardly, one-footed hop. I lost my courage as I approached the cones I was trying to jump.  Wasn't pretty. Probably pretty funny, though.

The Ugly

So, here is the Ugly. On Saturday, coming back from downtown where I had picked up the sugar skulls, I stopped for gas. I put my credit card in the machine at the pump, lifted the nozzle, and looked at the cover to my car’s gas tank. And I could not remember how to open it.

I tugged at it for a moment with no results. I got into the car, where I looked for a button that released the cover. Nope. I got out again and stared at it blankly. I sat in the passenger’s seat and rifled through the glove box for the owners manual, which read : To fuel your automobile, open the fuel tank cover…” No help there.

A total and complete blank. I’ve opened that fuel tank a hundred times. And I forgot how to do it.

I stood there for what seemed like an eternity, but was probably only a couple of minutes. I was fighting tears of frustration and mild panic. I finally pried open the little rectangular flap and gassed up. Then, of course, the cover wouldn’t close because I had broken it. Instead of lightly pushing on the side of the cover, releasing the mechanism that was holding it shut, I destroyed the latch by forcing it open.

It’s called Cognitive Dysfunction. And it is not like “where did I leave my keys.” It’s more like “I see what needs to be done, but I have no idea how to accomplish it.” For me, having this happen for the first time, it is scary, and frustrating, and strange.  It is, in a word, Ugly.

My car gets repaired on Friday. Unfortunately, my brain does not.