Hope in a bottle?

Hope is a funny thing.

If you’re me, you avoid it because you hold a fundamental philosophy about life that states that if one prepares for the worst possible outcome, one won’t ever be disappointed. I believe this may be a common philosophy among young widows. It started for me before that, though. And it continues after. It’s just how I think. I’m not terribly proud of it, but it feels safe. Cozy. Familiar.

Pictured above is the latest hope in a bottle recently delivered to my doorstep by the nice, if somewhat infuriating and idiotic people at the CVS/Caremark Specialty Pharmacy. It arrived in a giant box, about 20 times larger than it should have been to ship such a tiny bottle. I eyed that box suspiciously. I was almost afraid to open it. The bottom line is, hope scares the shit out of me.

This potential miracle in a bottle called Ampyra is supposed to help me walk better for which I am charged a $200 monthly co-pay. Thanks, shitty pharmaceutical companies. Thanks very much.

The thing about not being able to walk very well is that it pretty much affects your entire life. Every outing becomes a highly complex planning experience. Can I park close enough? Will there be something for me to hold on to? Will there be steps? How many? What if when I start walking my legs have other ideas? These are all things that go through my mind before I leave the house for just about any reason at all. The thing is, I don’t mind my funny walk or crawling up steps in the comfort of my own home, but it’s not something I love to experience out there in the public.

I’m not sure if it’s as simple as being vain, but I’m sure that’s part of it. It does look funny, there is no doubt about that, but more and more I really, truly don’t give a shit how I look. I think it’s more about how horrible it feels. There’s this strange experience when your brain is telling your legs to do something, but your legs aren’t down with the plan. Your brain is saying, “Walk! Head up the street! Here we go, one foot in front of the other, easy peasy!” Even toddlers can do it. Eventually.

But your legs all of the sudden don’t feel like they are entirely under your control. Or even a little bit under your control. I wish I had words to describe it better, because it is a singular, maddening, flat out bizarre experience to feel that something connected to your person isn’t under your control.

When people ask that question, you know the one, if you could change anything about yourself – anything at all – what would it be? Without a second’s hesitation my answer is always the same. I would love to be graceful.

Have you ever seen the way a dancer walks? They are very straight, erect and strong looking. Yet they glide across a room as if propelled by an invisible force that only they can conjure that makes them look like they are walking on air. I’ve always wanted to walk like that. Even when I was healthy, I never came even close.

I stumble, I stomp and I stutter step. I clunk and creek and clomp. And that’s when I stay on my feet. I see myself as the antithesis of graceful. I am the definition of non-grace. Then I started to have those “legs-not-legs” feelings on a more regular basis. I was diagnosed with MS. And my hope to ever be a graceful walker was permanently dashed. I mean, there are worse things that could happen! But being able to walk…it’s kind of fundamental. It’s not like having nice skin or getting a reliable erection (if you’re a man). Those things are simple to get prescriptions for. And they are usually cheap. Drugs that help you walk, on the other hand, take over 7 weeks to be approved, too many phone calls to count, mix ups with insurance details, mean emails to nurses and yet more phone calls.

There are two categories of drugs I take to help my MS. The big MS drugs are the Disease Modifying Therapy drugs (or DMTs to us in the know). For me, that is my monthly infusion of Tysabri. We all know how well that’s been working for me so far. Big snore.

Then there are the little MS drugs – those that affect (or try to affect) daily symptoms. I take Modafinil for fatigue. I take Baclofen for night-time muscle cramps. I take Amitryptiline for nerve pain. I take something called Oxybutynin for my stupid spastic bladder that makes me pee a thousand times a day.

And now, I also take Ampyra, the magical walking drug that is intended to help my legs remember their primary function on a more regular basis.

I’m only on Day 2. I’m not ready to sing it’s praises from the rooftops yet because I’m still pretty shaky but I have noticed that my legs aren’t as stiff and weirdly awkward. I seem to be able to walk a tiny bit faster and straighter instead of my usual drunk-like stumble drag gait. It seems to make me a little dizzy which is odd for a drug intended to help you walk better but I’m trying to give it time to pass. Like many side effects, it might be temporary. I’m learning slowly but surely that time is the factor of life I have zero control over. So I’m trying to be more patient. Emphasis on trying.

But today, I felt like I did indeed walk better. I’m not going to be doing graceful pirouettes any time soon. But I never really could! So who knows. Maybe this one is a winner?

Only time will tell.