INDEPENDENCE DAYS

My friends….it ain’t just about July 4. When you live with chronic illness, you take the independent days whenever and however they come. It always amazes me that so many of you “ableds” that can get up, move freely and do whatever you want, still choose to sit around looking at your phone. Hell, look at you now, sitting there reading my blog! (Hey Gerry….can you hear my voice right now? Hop on that golf cart and be the mayor that you know you are!)

It’s ok, I sit around too (yuk yuk). But there was no idle movement last week. For the first time since my illness last winter, last week felt like the old me was back in the saddle again. Independent living for a bit and giving my daily support system (my wife) a well-deserved break from the tornado of my sophomoric humor and razor sharp wit. For those of you who might not know….I went to Florida with my best friend Jim Felker to attend and work at the 30th annual Parent Project Muscular Dystrophy conference. This year’s meeting was held in balmy Orlando where it rains daily in the sunshine state and you can feel and see the air. Who invented Florida in late June? No wonder why my wife didn’t want to go with me. I just thought she was tired of my jokes.

I won’t bore you with airline travel power wheelchair issues, because on SouthWest, there were none (BRAVO!). I won’t bore you with Jim and I taking side trips to 24-hour fast food places at 2:30AM or why we arrived at that situation in the first place. (I’m not young anymore so pounding a quarter pounder in the dead of night isn’t such a good plan anymore….but hey….independent living right?) I won’t bore you with the fact that I rented a ramp minivan so I could avoid trying to hire a wheelchair taxi at the airport only to learn that the company misunderstood my request and left said van at the hotel, so I had to hire a wheelchair taxi anyway to get to the hotel to pick up the wheelchair van that I rented so as to avoid a taxi. The company didn’t reimburse me for anything and blamed the error on how I filled out the paperwork. (Side note: 2 day minimum rental is $500. Being handicapped is expensive)….Last year, this all might have made me grumpy, but several weeks in the ICU will change your thought process real damn quick, so Jim and I grumbled, and laughed it off. After making sure the van was insured, we cruised around, seeing some Orlando sights and enjoying the earlier described grease meal in the middle of the night. The Orlando night scene is not so good on a Monday night, though I did meet a caregiver connection named Margo. Thanks for sharing some tips.

Did I mention that Jim and I went to Florida a day before conference started in order to visit our dear retired friends who now live in The Villages? This place is Disney World for grownups, and is full of clubs, live music, activities, a million holes of golf and all kinds of sports. It’s wild, but I told my buddy Gerry that if he and his wife join the shuffleboard club, then we are no longer friends. We had an amazing visit catching up and sharing memories of teaching together over the past 30 years that we have been in each other’s orbits. Everyone in The Villages has a garage AND a golf cart garage. These old people are going to kill us people in our rented wheelchair ramp vans. Gerry warned me…..the damn carts are EVERYWHERE!!! His golf cart is also tricked out with JBL speakers which makes him even cooler than his Hot Property that surrounds him. Hey man….I’m hearing good things…..

Onward to the conference.

As I have written before, I work with a group of almost 50 young adults and adults who live with muscular dystrophy called the Patient Adult Advisory Committee (The PAAC). Quite simply, we support and encourage each other to live our best lives, and amplify our expert voices to share with anyone who will listen, how we battle for independence each day. The people in this group are like my brothers and sisters. We have become close through laughter, shared experience, happy, and difficult times. Through this bond, and the leadership of PPMD, we have been allowed to grow the PAAC to bring change to the current and future generations of people living with this difficult condition. We were given a large room during the conference to program our own sessions as we saw fit. We covered topics such as finding your life’s passion, how to achieve independence in adulthood, social skills, relationships, sex, mental health, choices after high school, adaptive sports and more. From the feedback I have received so far, we raised the bar on how to successfully live with this condition and I am honored and proud to have been involved in developing a far reaching program of high quality for all of those who attended. It’s all about building community, and we are doing it in real time.

In my mind, the next steps are to take this outside of the circle of current people involved. The conference was attended by more than 1,400 people, making this a big one for the MD world, but tiny in the REAL WORLD. To truly achieve days of independence, we must work tirelessly to shift the views of society until everyone understands that disabled individuals are not a problem. How society sometimes views us is the problem. Until more people realize that the laws are written to punish us from working too much (too much income = loss of benefits) and until more people are aware that travel, hotel stays, car rentals, beaches, buildings, bathrooms, and a million other things are a nightmare for wheelchair users, our work must continue. You don’t need to be disabled to notice that a sidewalk has no curb cut. Speak up. You don’t need to be disabled to realize that a restaurant is not “accessible” if it “only has 2 steps to get in.” Speak up. Next time you are in a store, see how wide the aisles are. Could you push a stroller through? A wheelchair? No? Speak up. If we are going to have days of independence, it will take all of us. Learn, observe, think, and act. Things only change if you want them to. My dear friends in the PAAC help me see this lesson in action on every independent day.

Stay safe, stay awesome, and stay tuned as next year’s conference is in Vegas. I might not be coming back from that one. Lot’s of planning to be done to change the world.

I delivered a keynote address on resilience…..although she was not in attendance, my wife complained that my pants were too short. Little did she know that I was clam digging in the Bay of Orlando just before I went on.