After All These Years

Hi, welcome to Humbly Courageous! This is an open and honest account of my perspective as a woman who has lived life with a disability. I wonder how many times I’ve been to the doctor over my 48 years for my muscular dystrophy? Hundreds, definitely, thousands, likely. I should have these visits down. I should have a confident voice as I’m facing these doctors. Many who I’ve known for years. But, the truth is, I’m not great at that. I’m a quiet, soft spoken person by nature. That is not to say that I don’t feel fired up on the inside. I’m really good about creating strong conversations in my head, and then when the time comes to deliver my side of that conversation, I chicken out, for lack of a better way to describe it. 

Patiently waiting….

This week I had an appointment with my neurologist who I’ve been seeing for about 16 years or so. If you’ve seen a neurologist, you may agree, they are generally very intelligent, pretty subdued people. That’s not to say they ALL are, but in the MANY I’ve seen, I can tell you that is 99% true. They are mostly all business. And it’s a business of not much they can do to help in my experience. It’s more of a formality I guess. There are some quick tests to check on my strength, a “have you had any recent falls”question, is there a need for PT or pulmonology to be involved, and then see you in 6 months to do it all again.

A couple days ago it was my turn to see Dr. P, my neurologist who works at my local MDA Care Center. He’s a top tier doctor. If there were any help to be gotten, he would be my man to deliver. Everywhere I go, medical wise, doctors know this man. He is highly regarded and respected in the medical world around here. I met Dr. P after a really horrible string of events with my previous neurologist. I won’t go into detail, but it was pretty messed up. The first guy I was switched to after this incident, I did not care for at all. I spoke up, which I feel proud of, and I got switched to Dr. P. I don’t think it’s easy to get into him. I think I was placed there because of this string of events. Anyway, you get it, he’s the best of the best in my neck of the woods. 

Dr. P

When I first met him, I liked him. He was willing to let me continue a treatment called IVIG therapy, that my previous neurologist had me on. It was expensive and experimental in nature, so I think he probably knew it wouldn’t help, but he could tell I really wanted to continue trying. It was the first treatment I had EVER been offered to potentially help my neuromuscular disease. I had to try. So, I was instantly a fan for that reason. I felt like for the first time in my life, a doctor was actually listening to my thoughts and feelings. I felt respected, which was great. His extensive medical knowledge combined with my expertise as the person living in the actual body with the disability, listening to each other, was a great match. 

After a couple of years, I accepted the fact that the IVIG treatment wasn’t going to help my muscles. I was heartbroken to let it go because I wanted SO badly for it to work. At the time I was still undiagnosed, so I felt like I was just going back into the black hopeless hole, which essentially I was. Over the years, we have tried a couple more things that I brought to him as ideas of things I’ve had researched, and he graciously let me try knowing they wouldn’t harm me, but also knowing they probably wouldn’t help. He understood my hunger for wanting to try something, anything. He’s the guy who ultimately diagnosed me after 44 years. I credit him and my genetic counselor for that. My heroes. 

I find myself closing up when I go to these appointments. I feel very guarded and protective of myself. For so many years, these visits were so mentally devastating for me. Dead ends. Over 44 years of dead ends, and I became extremely guarded and somewhat defensive. Time after time, I was told so many different things, so much false hope only to be crushed again. I am not sure I recognized these feelings fully until this visit. My husband usually attends these visits with me. He’s a fantastic listener and note taker, which is much appreciated, so I can just be present. Before the doctor came in, my husband was a little annoyed with me because I didn’t have my list of questions ready. I could feel myself getting angry, and anxious. Then, I think I finally realized that it’s ok now. I won’t be let down with a false diagnosis because I have one now. I can let my guard down. I can relax and focus on what’s to come, and how I can help myself in the meantime. It was a great visit. We talked about lots of things, and now in the mix are conversations about possible treatments on the horizon. There is a tinge of hope at these visits, when for so long there was none. A tinge of hope is so much better than none. 

I shared with him that the Muscular Dystrophy Association had chosen me to be their adult national ambassador again for 2023. He was excited for me, and we discussed possible ways we could work together on a few things. I felt lighter as I left the exam room. As I was checking out, there was a woman in a nearby room who had seemingly just been delivered some terrible news. Her sobbing was heart wrenching. I saw a different doctor walk out of that exam room, and he looked so sad. I can only speculate that maybe he had to deliver devastating news, such as a diagnosis of ALS. Her cries broke my heart for her, and I was suddenly hit with an overwhelming sense of  the realization that my doctor has to deliver this devastating news frequently, as the majority of his patients live with ALS. What he must live with day in and out knowing he cannot stop their devastating disease from progressing. My heart broke for him too. 

I feel like somehow, I was meant to be in that moment. I needed to get outside of myself and see things from a different perspective. It definitely ignited a renewed passion in me to continue to fight for these treatments and hopefully cures on the horizon for Muscular Dystrophy and ALS. They are so close in many ways. I have to do my part to keep advocating and raising awareness. Maybe I will be offered a treatment in my lifetime, and maybe I won’t. Time will tell. For the many coming after me, I need to keep working. Facing neuromuscular disease takes humble courage from me, my doctors, as well as their many patients. I’m glad I was able to see things from a different perspective after all these years. I’m grateful I was in a position to do so. It’s time to keep fighting. 💚