He warned me

Seven years ago, Dr. Pasupuleti, my neurologist at the time, reluctantly gave me a prescription for a wheelchair. “When I give my patients this, they almost never walk again,” he told my mom and me.

“But doctor,” I said, “I plan on walking for a long time. Don’t worry. It’s just that right now, I’m so tired. And I’m especially tired of falling down. And lately I’ve been missing out on so much. You understand that right?” I was naively asking a middle-aged doctor to sympathize for the lost social life of a 27-year-old woman.

“Besides, a wheelchair is just another way to get around. It’s not like I’m planning to use it every day. It’ll only be for navigating long distances, like parking lots at concerts or ball games, maybe lengthy shopping trips even, but it’s only for convenience. You know, conserve my energy.”

He listened quite patiently but he still had his doubts. I just couldn’t understand why he was so opposed to me owning my own wheelchair. After all, didn’t he want me to be comfortable? Or at least, safe?

In these seven years since that conversation, I have come to understand his reluctance. He was opposed because he knew my short-term reasons were overlooking the long-term realities of life in a wheelchair.

When I began using my chair, I started to believe that I had outsmarted and proven him wrong. After all, I was walking 80 percent of the time and wheeling the other 20 percent. Not a bad arrangement, I thought.

But over time the balance subtly shifted. I missed the slow development of my reliance on the wheelchair because I was so impressed by how much I could accomplish when using it.

“Look at me go,” I remember thinking. “This disease is no match for me.”

Ahh. Silly, silly me! Sadly, I realize now that unused muscles atrophy.

Despite regular and intense physical therapy to strengthen my weakened muscles, I remained comfortable and safe from falls as I depended more and more on my chair. And my weakened, unused muscles led to pain ­- and nobody likes pain, especially me – so my chair kept the pain at bay. It really is a vicious cycle!

Sometimes I think the worst thing about my multiple sclerosis is that the disease has left me completely dependent on a wheelchair. But in reality the absolute worst part of my MS is the almost constant guilt I live with. I often feel as though I gave up. Really. Especially during my irrational, emotional moments (Be honest: We ALL have them, MS or not).

Unfortunately, I carry this guilt, frustration and sadness with me. Yes, I try to stuff it down. Silence it. But it’s almost always there.

But in a logical frame of mind, I know that it was this chronic disease that took away my ability to walk. It’s just so easy to feel guilty, or sorry for myself, and I understand now why Dr. Pasupuleti was so opposed to writing that prescription.

OK. I’ve learned my lesson. Joke’s over. I think I’ll start walking again. Can I have my do-over now? Unfortunately life doesn’t work like that.

Fellow MS blogger Patrick Leer recently wrote about Elizabeth Kubler Ross’ book On Death and Dying and her idea of the five stages of death, which are denial, anger, bargaining, depression and acceptance. His blog made me realize I’m far too accepting of the death of my walking.

Starting today I’m making a conscious choice to reclaim the possibility of walking. I know it is going to be difficult and frustrating. But while it may not happen, I’m realizing that I’ll die before I accept that I will never walk again!