QUALITY

Let’s make one thing clear: I am not an individual who needs to be “fixed.” I am speaking about my chronic medical condition. I have seen hundreds of doctors in my life, maybe even more, and the vast majority are trained (and rightly so) to diagnose, discuss options (if there are any) and fix. Fix, fix, fix.

Treat, which is a hidden word for fix, also gets thrown around like discussing Halloween. “Don’t worry my lovely patient, we are going to ‘treat’ you!” Yippee. YOU, Dr. New Doctor, have a plan of attack that no one else on the Earth has ever seen. I’m happy to be a part of this plan. Let’s do it!

OK, to be fair, I was diagnosed (incorrectly) with my muscular dystrophy in 1985, and since that time, there has been an exponential increase in the understanding of the mechanisms that are related to the progression of the disease, and even a few approved therapies that have begun to appear on the market. The elephant-in-the-room question that no one wants to talk about is: do any of them work? How well do they work? It is said that they may “PROLONG THE LIFESPAN!” In medicine we must “PROLONG THE LIFESPAN.” This will give us (science), more TIME to come up with something better in the long run. Sounds great right? Put this stuff in your body, and we think it might help a little bit to SLOW THE PROGRESSION of your poor, wasting muscles. Key words….slow, prolong. Sounds a lot like TREAT and FIX.

Here’s the kicker. I recently had an in depth conversation about this with a dear friend who also has an extensive relationship with muscular dystrophy, as she has two adult sons living with it. Both are in their mid to late 20’s and are as well-adjusted to this nightmare as anyone I’ve ever known. I am proud of the way they have dealt with this shitty poker hand, and I am honored to call them my friends. They too have seen hundreds of doctors, and specialists in different parts of the country and have been offered the latest and greatest science to “TREAT”, “PROLONG” and “FIX”….but as we spoke, we realized a huge piece that is missing from each and every clinic appointment. No professional ever asks us simply how we are doing.

There are surveys, checklists, and paperwork to see if we are suicidal (that’s uplifting right?) I always get asked if I have “been feeling down, or blue for more than a couple of weeks.” I always say no, because I have nothing major to feel blue about. Everyone I know simply manages, and people who are ABLED, think it’s amazing. It’s not. You would do the same thing. In fact, you do. Don’t you have anything in your life that bothers you? Of course you do. You even have things that you can’t fix. You have family drama that never ends. You have people that you love who are sick. Perhaps you have become trapped in a job that is making you question your sanity, but you manage it. Doctors are shocked to find out that I have private insurance, a wife, two kids, and a full-time career. Why? Because my muscles are screwed up and I use a chair? That’s ridiculous. Usually, these medical professionals praise me for “living a full life.” WTF does that even mean? Everyone’s definition of a full life is different. Of course I live a full life. So do you. You are enriching your already full life reading my blog right now. Learn this: I DON’T NEED TO BE FIXED. I DO need to be asked how I’m doing. Not in passing….hey man, how’s it going? That will give you an answer about the rain we’ve been having, or that stale Oreo I ate. (still addicted).

It’s high time that the world of medical professionals take note of the fact that giving me a suicide survey sends the unwritten message that because I am a disabled adult, my life must be so awful from using a wheelchair, that I don’t know how to assimilate into society, and that this causes such burden, that I think about hurting myself. While I do not wish to trivialize mental illness, or real feelings of self-harm, which I have witnessed first hand in middle school students who are “normal” as well as people suffering from chronic illness, there are many ways to reach out for help, and to receive help. I am not trying to marginalize any of that. It’s real, and the suicide survey certainly does have its place. What I am saying is, with all these clinic visits (side note, those of us living with MD, who go to clinic once or twice a year, usually spend 3-4 hours or a few hours over the course of two days getting poked, prodded, moved, scanned, looked at, and looked at some more….hey! Can the STUDENT DOCTORS COME IN? THEY HAVE NEVER SEEN A REAL PERSON WITH YOUR CONDITION!” I always tell them…sure, but no autographs! yuk yuk.)….with all of these clinic visits, no one asks about my quality of life. If they do, it’s a passing question, not an in-depth conversation. What good is “TREAT”, “SLOW THE PROGRESSION” and “FIX” if my life is no fun and I can’t do anything? When I’m in the clinic, talk with me about adaptive sports, places to go, accessible travel, peer and social groups with which to discuss things that we all have in common. Ask me about what makes me tick and why I get up each day. Don’t give me a suicide survey and then tell me about a help line, or hooking up with a therapist. Did you ask me if I already have one? No. Don’t sit with me and pretend to understand my disease because you see others with it too. You have no idea what my day to day life is unless you live in my house and help me function.

Here’s an idea that no hospital will go for, since it won’t bring in revenue: Hire me. That’s right. Hire adults living with muscular dystrophy to work in your clinic simply to connect with the patients. We have immense skill at solving problems all day everyday. We can talk about anything from adaptive soccer to getting laid. We can talk about school, college, travel, and quality of life. Why? Because we live it. Want to know how we are? WE want to work, make a livable wage so we don’t need the government to supplement our income. WE want insurance, and a place in society that makes us feel valued, respected, and loved. Just like you. Just like all of us. Self esteem goes hand in hand with quality of life right? Don’t you feel good when you are adding to society? I don’t care if I die next week, as long as I can look back and realized that I participated actively in life. (Well, ok, maybe not next week, maybe 2 weeks….humor is my defense armor but you know what I mean.)

Ask us how we are, but then give us the tools to connect with one another who actually know how we are. We are living full lives, and we would love to help others. Imagine that? My friend living with MD: Start the process of asking for these tools at clinic and let’s make some change. It has been, is, and always will be about quality of life. Don’t fix me. Ask me how I am.

Stay safe, stay awesome, and stay tuned. It’s 6:30 AM as I type this. I’m jacked up. Make it a great day.