In the quiet moments, I like to take inventory. Inventory in my mind. Sometimes I think about all kinds of great things that have taken place in my life. I’m sure that you do this as well. Maybe you think about a vacation, your kids, your family, your wedding day, the career, or maybe it’s a more simple thought like a great meal, a conversation that made you think, or reading a great blog post.
What a cheap introduction huh? Well…
Do you also think about ALL of the factors that have gone into the great things that happen in a lifetime? Why and how do these things line up and even occur in the first place? You can quickly realize that the simple act of existing is not so simple. If any ancestors had not had “the urge” when they did, and a successful urge at that….you wouldn’t be here. I wouldn’t be here. AND because one or more of your relatives decided to live where they did or do, we meet one another, jobs are taken, friendships are built, hangs are hung, cheeseburgers are consumed and ginger ale is poured. Lobsters are eaten (shout out to my Maine friends…you know who you are), conversations and debates are had (tastes great….less filling, where’s the beef?), tears are shed, laughter is shared and life zips past while you hang in and on through it all.
To keep my sanity, I have a worldview (from my family and friends): I look for the silver linings. The darker the setting, the more silver the lining. I find it a good mental exercise to sometimes reflect on things that I have only been able to experience BECAUSE I have a chronic illness, not in spite of it.
Granted, my health usually feels like an unwanted guest in my living room, but like an annoying relative, I can’t kick it out, so I choose to think about what the hell has happened since my life didn’t go as scripted. Shit, has anyone’s at this point? If you’re reading this just after you have been born (think: Chuck Norris), maybe your life is on point, but I would venture to guess that as soon as you look at photos of yourself as a kid, you will realize (through wardrobe choices alone) that your shit ain’t exactly going the way that you thought it would. It still isn’t. So what?
So let’s dance!
THINGS THAT WOULD NOT HAVE HAPPENED IF I DIDN’T LIVE WITH MUSCULAR DYSTROPHY:
- Good parking (ok, I’ll get more serious from here)
- Free merch because people feel bad (ok, serious starting….now)
- Receiving piggyback rides as a grown up (I am serious. Is grown up 2 words? hmm. it’s both. rabbit hole)
- The value of appreciating the little wins in life. I don’t take anything for granted including looking at nature everyday
- A trip to Perth, Australia
- Several trips to Rome, Italy
- Journeys to The Netherlands, Belgium, and Spain
- Amazing friendships that I have built with people and families who also live with chronic illness
- Speaking to and with members of The United States Congress (ok, sometimes not always a silver lining, but it is fun to see how things kind of operate in D.C.)
- Learning more about science, biology, and drug research than I ever thought possible
- Showing thousands of kids that it’s ok to be disabled
- And the reason for this post……the latest crazy twist that is on the docket……I didn’t have this on my bingo card…….wait for it……….drumroll please……JOY TO THE WORLD (sung in your head like Clark W. Griswold in Christmas Vacation…..
Speaking at The United Nations in New York City!
You see, September is Duchenne (Doo-shen) action awareness month. DMD Awareness Day is September 7 of each year. Thanks to the Permanent Mission of Kuwait to the United Nations, a short documentary film will be shown to more than 150 diplomats on Friday September 5. I have learned that a “permanent mission” is responsible for organizing and coordinating their members to serve and further the work and missions of the U.N.
The U.N., as you know, comes together to tackle global issues, such as poverty, climate change, and access to health care. They currently have 17 goals that are being worked on with an eye toward 2030. The goals, as you would imagine, are lofty. This is the point. We, as GLOBAL humans, need to do the hard stuff.
Goal 3: Ensure healthy lives and promote well-being for all at all ages. This is where my tiny sliver of contribution comes in. Following the film, I will be making remarks along with Pat Furlong, the woman who founded Parent Project Muscular Dystrophy in 1994, and is one of the most remarkable humans that I have ever known (another silver lining since she lives in Ohio, and how would I have ever met her without the “unwanted” house guest disease thing??) Pat will be the subject of a whole other blog….it’s the stuff of legend.
So her and I will be commenting on the film. What do I say, in 5 minutes, to a room full of diplomats from around the world who likely know little to nothing about muscular dystrophy?
I rise to the moment. I never read from notes. I speak from the heart, but I do plan ahead of time. I think it may go something like this:
“I am honored to come before you today to represent a disease that does not discriminate. This disease does not care if you are wealthy, poor, urban or rural. This disease does not care what country or land you live in, nor what you eat and drink. It does not care what God you worship, the social networks that you operate in, nor the friendships that you keep. Muscular Dystrophy is a ruthless progressive disease that cuts life short all over the world. Life and lives that are needed, as every single one has purpose, value, dreams and goals. Today, I represent thousands of individuals living with Duchenne muscular dystrophy, and although the type of MD that I live with is different, the outcome will be the same. We must achieve universal health coverage, including financial risk protection, access to quality essential health-care services, with a further goal of training health care workers around the world to recognize symptoms of rare disease and put a network in place to shorten the time between diagnosis and treatment. It will take all of us in this room to continue to work as one so the hundreds of thousands of people living with Duchenne muscular dystrophy continue to have hope. I am here representing many children and adults that are too sick to travel, but I carry one message: Do not forget about us. Do not abandon us. Choose the hard work that must be done. Together, we are stronger.”
Stay safe, stay awesome and stay tuned. I will likely throw in a personal story about being dead for 6 minutes, so there’s that…. but if and when the short film is available to the public, I’ll link it. Wish me luck. I wouldn’t be anywhere inside the U.N. if I didn’t live with my rare unwanted disease house guest. Life is pretty crazy right? I will do my best not to create an “international incident.”
Next week I will tell you how it went. Also, yearly cheeseburger count is up to 26. Ugh. I have a disgusting problem, but most of them are grilled at home by my lovely wife. That’s ok right??
Patrick moeschen 
Thank you.