I close my eyes and the Dream begins…
In my Dream it is morning and I am lying in bed under the covers. I look at the clock and realize that I overslept and am going to be late for school! But there is no nurse there to help. So I try to lift up my hand and for the first time in over a decade it moves and I yank the covers off of me. Now what? I normally can’t get my clothes on without assistance. Miraculously, I try to roll over from my side to my back and sit up in my bed, and this time I was successful. So I reach out with my other hand and grab my underwear and pants. Then I lift one leg at a time into the underwear and pants and pull them up all on my own. I then use my torso muscles to shimmy myself over to the edge of the bed. Next I bring both of my legs and hang them off the side of my bed. I throw my shirt on with hardly any effort.
Then I stand up.
A wave of emotion comes over me and grows exponentially with every small step I take. I turn to look at my wheelchair. I can hardly stop the tears from flowing now. I walk past my wheelchair and never look back. I walk slowly to the door to my room and turn the handle. The door swings open. I walk into the hallway. I look to the right at the elevator door. Tears are running down my face. I walk past the elevator and keep going without a second thought. I walk faster down the hall and turn to look at my reflection in the bathroom mirror. I stare silently for about a minute, not really recognizing the person in the mirror, but understanding the importance of this moment and what is about to follow. I reach the staircase to go downstairs. Walking forward, I grab the banister for dear life and step down one step. Then two, then four, then ten. I let go of the banister and feel secure and balanced enough to walk down the rest of the steps.
I walk into the kitchen.
There is the sound of bacon and eggs cooking on the stove. My mother is facing the stove with her back to me. She yells to my dad in the other room, “Can you go upstairs and help Anthony get dressed and into his wheelchair? His nurse called in sick today.” Before he is able to respond I clear my throat and say:
“I don’t think that will be necessary Mom…”
She drops the eggs onto the floor. She slowly turns around and sees my standing there. She blinks a few times. Looks closer. Taps me on the shoulder to see if I was real. Then she faints. I grab her before she hits the ground and sit her in a chair. When she comes back to me she smiles. One tear goes down her cheek. She says three words: “Is this real?” I say yes, and I put my arms around her and we cry tears of absolute joy.
As the rest of my family comes into the kitchen, the room fades to black, and I wake from my Dream with my face wet from the tears and a smile on my face. My nurse comes into the room and says, “Good morning! Did you sleep well?” I think back to the dream I just had and remember how amazing it felt to do everything on my own without a nurse or my parents assisting me. Then I come back to reality and realize that I may need assistance, but that does not mean I am helpless. Accepting assistance means that I adapt to my situation and use the support available to me to live my life to the fullest. I respond to my nurse…
“Yes, I had a nice dream, but I am more excited
for everything this day has to offer me!”
I share this Dream with you for three main reasons. The first reason I share my Dream with you is because I know many of you have had the same kind of dream. It may be the dream that motivates you every day to fight for a cure, to run for your son, or simply to get through your day. Or it may be the dream that motivates researchers and scientists to work for years on searching for viable forms of treatments. Or it may be the dream that someone living with DMD/BMD has every now and then. The second reason I share my Dream with you is because a company called SRI International is working with PPMD and Solid Ventures to build a robotic suit called the Solid Suit. The Solid Suit is a motorized suit made of soft materials that can be worn under clothing and assist with specific muscle movements. Those movements will at first be focused on simple fine motor skills, such as lifting an arm or helping with feeding, but in a few years time, the suit will evolve to allow for more complicated gross motor skills, such as standing in place or sitting on the toilet seat without losing balance. Let me stress that this suit will never allow for most of the very complicated movements I made in my dream. What this suit will do is it will greatly increase our abilities and allow us to be more independent in the long run, which is much more of a realistic outcome. I am honored to be the PAAC member leading this robotics initiative and will help test out the prototypes and keep all of you posted throughout the entire research and creation process. In the future you will be seeing many blog posts and YouTube videos from me keeping you informed of the evolution of this initiative.
The third reason I share my Dream with you is to show people who have not faced the impact of this disease, people with normal muscle function, that they should be grateful for every step they take, every move they make, every breath they breathe in and out. They should be grateful for every second of every moment of their life. In my Dream, most of the simple movements, which made me incredibly emotional to finally be able to do, are not even a second thought of someone without this disease. If I can teach everyone to never take their life for granted and to cherish everything they have and everything they can do, then all the struggles I have faced in my life will be worth it.
Let me be honest, that Dream I shared with you is an unrealistic dream. And I am not saying that to sound like a pessimist or to lower your hopes or expectations. What I am saying is that dream will never occur to the same extent. The realistic dream is NOT that a miracle cure will come and instantly restores muscle function to the same level that an able-bodied, non-disabled person would have. Instead, the realistic dream is that a cure will be found that will restore some function, allow our lungs to breathe deeper, allow our heart to pump stronger, and allow us to live without a ticking countdown clock.
Yes, I want a cure. I really, really want a cure within my lifetime. I am simply saying that the cure will not be one that performs miracles, but it will be one that makes a realistic difference in the health of all those living with DMD or BMD. I like to promote that difference because if you hope for a miracle cure, and a realistic cure comes instead, you will never be completely satisfied.
Finally, don’t hope for the Best, please hope for the Better!
…and if the Best ever happens to occur,
then you can be even more grateful for it.