Get Busy Living, Or... Well, You Know

In ten more days it will be 2015. During the year 2015 I can expect several things to take place. 1. I will celebrate my thirty-eighth birthday. 2. My twentieth high school reunion will happen at some point, and 3. in the month of April I will mark twenty-one years since a diving accident in a friend's backyard pool would alter every facet of my life forever. Much has changed since then. We have smart phones, touchscreen computers... hell, even programs like Skype and Face Time make the cartoon concept of George Jetson's video phone a reality. We have a black President. We have new World Trade towers. We have hybrid cars and legalized weed (getting there anyway). Eye doctors can correct vision without slicing open an eyeball. Little cameras and lasers are used to perform surgeries. Last year a friend had a vertebrae in his neck repaired and was home in time for dinner that same day. Spinal Cord Injury research has made strides, mostly in physical therapy and adaptive equipment. Along with stem cells we have better electric stimulation, biofeedback, loco motor training, lighter chairs, power assist, exoskeletons that walk, adaptive surfing, disabled dating services and even sex toys for spinal cord injury... but we haven't cured it. Not even close. Well... closer.

When I started this blog and this journey I had no idea where it would lead. Truth be told, I didn't think it would be going on this long. The older I get the more the lines that define the end from the beginning of anything become blurred. If I had known what was ahead I'd have looked square in the camera as the stem cells hit my spinal cord and said, "Let the games begin!". After the fundraising and trips to the gym and therapy and the treatment itself I saw a lot of improvement. Was it everything I expected? No. Was it worth it? Yes. Why did I do it? Because I, like many others in this situation want more, much more. We believe that for all the gadgets and gizmos and new assisting devices there's only so much "oh wow that's cool!" you want to hear from your friends when all you'd really like to do is stand at the bowl and piss like a man.

It's funny, in the last few months my postings have become more serious, some would say darker. I have actually had friends message me upon reading to ask if something was wrong, if I was okay. I am truly blessed with friends who care and I do not take that lightly. If you are wondering, yes, I am alright. What some mistake for darkness I prefer to call determination, purpose... a mission. I'm on a mission to beat spinal cord injury. To defeat it. To kill it. There... I said it. I am drawing a line in the sand in my life and I do not care if it takes my whole life to do it. Who is with me? I am putting out a call to everyone who reads this who has a spinal cord injury, to those who love someone with a spinal cord injury, and those who lost someone with a spinal cord injury. Are you tired of the pain, the discomfort... the transfers and ridiculous splints and Velcro straps? Are you sick of the accidents, the skin sores, the infections and endless stream of antibiotics prescribed by clueless, mealy-mouthed doctors who haven't got a clue? Are you exhausted by lack of sleep and chronic nightmares? The delicate electric equipment that breaks down? Freezing in winter and nauseous in summer? Financial instability and discrimination in the work place? The fear of dying? I am. I'm over it. Yes, there is life after spinal cord injury, but it's not LIVING and I defy any disabled motivational speaker to tell me it is.

So what is "living" after spinal cord injury? Living is fighting, breathing, getting up in the morning and throwing off the mental shackles of a belief that there is no cure. That this is finite, the last word. Living is hoping, DOING. Living is pushing out the strife, fear and anger that settles in to so many families after an injury. It embeds itself so deep that the love, patience, teamwork and commitment so desperately needed to survive becomes buried and the injured member only gets weaker and more sick. Living is trying, trying something new each day because in your heart you believe. You believe through the tears and the stench and the failure that there is more. You believe so much that you let your heart fill with love and compassion for your brothers and sisters in chairs instead of jealousy because they are incomplete or can move their arms and hands or drive a car. You believe because you are grateful for the scientists, doctors, therapists and caregivers who fight on with little to no funding and sinfully low wages. Living is shattering the fear of never being able to run, dance or make love. Living is letting go of the past and looking to the future.

So let's talk about the future. For most of us the phrase "don't get your hopes up" has been the mantra of every physician and therapist we've ever known. So much so that it has inserted itself into the collective consciousness of the spinal cord community, its iron talons hold the doors closed to any kind of real progress because we're torn between hope and "wait and see". This is dangerous to all of us and hinders the very living I am talking about. The fault dear Brutus is not in our stars, but within ourselves... and if it continues unchecked will set us back years. It must stop.

In October of this year The Christopher & Dana Reeve Foundation announced a fundraising campaign backed by real, tangible scientific evidence to grassroots finance further testing of a break through technology on forty new cases. Think about that a moment, grassroots. Our own. The potential to show the federal government, insurance companies, private investment firms and more that the spinal cord injury community stands united and committed to living. The epidural electrical stimulator is the single most important breakthrough to date. Yes, there are incredible things on the horizon, but this is real. It's real and it is now.

A few days ago I had the honor of having a conversation with Debbie Flynn. Debbie is the Western Regional Director of The Christopher & Dana Reeve Foundation. She is in charge of fundraising in that part of the country. She had this to say...


"Like most of us who are passionate about the cause, I was introduced to sci when my son became paralyzed in 2002. A drunk driver took so much from Pete who was only 20 years old, and I made it my mission to understand the injury, take care of him, and find a cure. Our focus in the west is simple - fund the Big Idea campaign. Everything I do is about finding the money to launch this life-changing study for the next 36 patients; we are 4 for 4 and believe absolutely we will be 40 for 40. Then, we can quickly get this treatment out to everyone suffering from sci. We believe this will be as common place as a pacemaker for heart patients, and it will be reimbursed by health insurance.

The Big Idea is revolutionary for several reasons - one, because we found recoveries that we were not even looking for, we could not have imagined these dramatic, miraculous results. And two, because the restoration of autonomic function: bowel, bladder, sexual function, temperature regulation, cardiovascular improvements are perhaps the most important of all imaginable recoveries. These functions restore our paralyzed population to health, wellness, and independence. They bring about a confidence and sense of well-being for these patients that they never imagined, it's nothing short of miraculous. I want people to know that today there is hope, and a reason to persevere through the difficult challenges of spinal cord injury. Never before in the history of this injury has there been something so hopeful as the Reeve Foundation's Big Idea; we finally have something concrete, something we can talk about and sink our teeth into, something real. The Reeve Foundation has been funding basic science research for 30 years, and here we are today with a real and promising reason to hope, and believe.


As a  mother, my message to mothers has always been that there is life and happiness after spinal cord injury. As mothers, we wish we could carry the burden of this terrible injury, we wish we could take it upon ourselves and lift it from our children. I still grieve my son's losses every day, and as tough and positive as he is, there is a sadness upon him that never completely fades. I want this treatment for him, I want it for every one I know living their life in a wheelchair. I want it for their mothers. It's a hard thing to understand and repair a spinal cord. It represents the most complex system in our body, and was thought throughout history to be impossible to repair, kind of the final frontier. Our Big Idea treatment is unique because it actually "awakens" the circuitry in the spinal column and reminds it what it used to know before injury. Epidural stimulation amplifies the signal so the tiniest bit remaining can get through and restore previously dormant connections. What I love is that it's the person's own body responding, trying to heal itself. And some of the results are quick, within days. Everything about this is thrilling.


Of course we have been hearing about promising research for years, without deliverables... but... all the research, all the money invested, all the scientists who devoted their lives to solving this complex problem have brought us here today, to this moment. This is the first step, certainly there is more to come. But this is the most important first step in history, the first real, measurable, repeatable, incremental cure. I don't think the sci community is afraid of the treatment, these are the bravest, most fearless people on the planet. I think they may be a little afraid to believe, it's almost too good to be true. Many have waited so long, 20, 30 years, for something, anything. This is real, it is happening now, and in 2015 we will see the beginning of a life-changing movement for this heroic population.  We are changing the world. I am so proud to be part of the Christopher & Dana Reeve Foundation, so proud to be part of this Big Idea movement. We are half way to our fundraising goal of $15mm, the faster we get there the sooner we bring this life-changing treatment to the next 36 patients and ultimately our community."
This blog began as a simple journey towards stem cell treatment, but I see now it is much bigger than that. It's a voice. An opportunity. A chance to light a fire, a fire of dreams. If not us who? If not now when? I am sending out a clarion call to anyone in this community who cares to listen and dares to believe. I'm calling out our brothers and sisters in chairs who have made millions. I'm calling out those of us on Medicaid and SSI benefits beholden to the government. What does it say of us if we do nothing? What are we if we do not attack each barrier together and with hope? What will we leave for those who are to come? Out of my own mouth I have said hundreds of times "I'd never wish this on anyone." Let's start LIVING that.

Please follow the progress at www.reevebigidea.com , donate, share the word and get busy living in 2015! 

A blessed holiday season to all of you and thanks for reading.

Comments

  1. I might add, I am grateful for the goddamn internet for connecting us...feel like we've been buds for lifetimes

    ReplyDelete
  2. Excellent!! Thank you for this Caleb, I choose to believe and keep my hopes up in spite of what anyone says. Internet is so helpful in connecting the community. I am so frustrated at times and wish there was more I could do to further the message and cause, we need to be heard and taken seriously. This way of life, in a wheelchair, is a hard painful way to live both physically and mentally.

    ReplyDelete

Post a Comment