An open letter to my doctor {what I'll probably never say}

My neurologist is a jerk. He's a great doctor in that he "knows his stuff" and is very well-educated about various neuromuscular diseases, but he wouldn't know bedside manners if they punched him in the face. I dread going to see him because I know how I'm going to feel each time I leave his office, but I haven't been able to find an alternative... yet. In the interests of pre-appointment therapy, here's what I would tell him if I was just a little bit braver.

Dear Doctor L. -

The first words you ever said to me were "Why are you here?"

Maybe we should back up, though. The first words you ever said in my presence were "Have the wheelchair sit by the computer." The snapchat I sent 30 seconds later pretty well covers my feelings about that one, so we'll move on.

Back to "Why are you here?"

I was there because I have two of the conditions that you claim as your specialties. I told you as much, and your response, still without so much as looking up from the computer screen, was "Well, you were diagnosed with Charcot-Marie-Tooth twenty years ago, so you know it's incurable. We can't help you."

I'll admit, I probably looked shocked, but it wasn't because I didn't already know that you couldn't fix my body. I had been told only two months earlier that I would be better off living with a broken hip for the rest of my life than going through the surgery to repair it - I was painfully familiar with the thought that I was never going to get better.

Rather, I was new to the concept that maybe someone with a serious, degenerative neurological disorder didn't need to be under the care of a neurologist. For a moment, I felt kind of silly. What was the point in going to a doctor, when I couldn't be healed? I had decided years ago that I no longer wanted the drugs you had to offer for the pain, and I wasn't in immediate need of any surgeries. Why was I there? 

I don't remember what I said. I do remember that you sighed and looked at me for the first time since we'd met. Not in the eye, but at my hands. "Well, I guess I can check your strength and reflexes. I'll put them in your file. Then if you ever have a slipped disc or something else I can fix, we can get you in more quickly."

In the end, I left your office that day with a prescription for physical therapy ("good for a year, if you ever want to do it, but it probably won't help") and an updated education on the latest research into neuromuscular disease. Despite your attitude, it was a productive appointment - I learned how much my condition had degenerated in the past few years, and after some prodding, you gave a few suggestions on how to manage the symptoms.

What I want you to understand is this: That's all I wanted. As someone with a severe and incurable disease, I don't go to my doctors expecting to be fixed.

I know you didn't start out in this career to spend your days talking to patients who you can't heal. Like most doctors, you probably set out with the goal of solving problems and fixing what's broken. For most patients, that's what's required of you. For some of us, though - the chronically and incurably ill - we don't need you to heal.

Instead of going to doctors in search of healing, we go to you for help living with the bodies we have right now. Our goals in life are different, and your job is to first learn what they are. Sometimes we may need you to prescribe a pill, straighten a spine, or do something we don't quite understand with our muscles and tendons, but sometimes we come to you just to make sure what's happening to our bodies is still in the realm of "normal" for our disease. Sometimes when I'm falling almost every week and even the simple act of bathing seems as risky as walking down High Street the night of a major football victory, I go to you, not in hopes of a miracle drug to make me never fall again, but for help finding a way to live as safely and independently as I can with this body I've been given. 

Life with this body of mine is hard. It means aching muscles, stinging nerves, twisted bones, and too many tears. It's brought me long days in bed, hours on the floor, and awkwardly asking small children to help me with the simplest of tasks. What you might not see is the good it's brought into my life. My sense of humor as I learn to laugh when I fall in the middle of the street, my slowly growing humility as I meekly ask friends and strangers alike for help, the instinctive trust I gain from people who might otherwise never enrich my life with their stories, my ability to adapt to a life of opening doors with my feet while going through them with my hands. My life is wonderful, and although I would happily give up all of the pain in the present and fear of the future, I would hesitate to trade even one of the things I've gained from living with this disease.

It's okay, Doctor, that you can't make me better. All I would ask of you is that you recognize the humanity behind the unsolvable problem. I, the incurable patient, "the wheelchair," am a person. I'm more than the sum of my twisted toes, hopeless hips, and crooked spine. The next time I come to you - and I will be back, frustrating as it may be for us both - I hope you find yourself able to see me.

And if you'd like to talk to me about nerve damage in mice, I'm totally up for doing that again. That was pretty cool.

Love (no, really),
Heather

My life is pretty great. For real.