Saturday, February 22, 2014

The Cure for Duchenne? Let's try a Change in Thinking



http://www.bloomberg.com/video/jpmorgan-dad-on-son-s-disease-biotech-venture-IZrvLpguSs6D45C1Iwfhmg.html 



Sorry, but I can’t not speak my peace on this one. The news story linked above does not cause me to rejoice. It quite frankly turns my stomach, and for several reasons. 


A high profile rich guy’s kid is diagnosed with Duchenne, and as fast as you can say, “Oh shit,”, he’s got 17M in investors, and we all jump up and down like we won the “Price is Right” grand prize.  


Newsflash: WE didn’t. The pharmaceutical companies did, and the investors, who we are told are quite happy about their potential return on their investment for this business model. This is about curing disease? Get a clue…it’s about the money, first and foremost. Period. They will receive the funds, and proceed to distribute them to the corporations to profit off of. And when, in our fairy-tale hopes-and-dreams world they find a “drug cocktail”, they will SELL IT BACK TO US at prices that none of us could possibly afford if not for the benevolence of the Insurance Industry. 


Let’s talk about that “drug cocktail”. Are you serious? As of now, steroids are the only drug used to treat little guys with Duchenne, and we all have to weigh the risks and benefits, which are nothing to be written off as no big deal. The steroids do on occasion help them walk longer, and they enjoy a bit more artificial strength in their childhood, but that wheelchair is coming, and a sedentary body is going to need all the bone strength it was born with to stay in an upright position. Steroid weight gain and bone loss will more than likely come back to bite your now-little boy in the ass when he’s not so little anymore. Steroids – and I would venture to say most of the drugs they are looking at – (the “cocktail”) – is only treating him in a Snapchat photo. He is growing and changing, and people whose kids are little are not thinking about the rest of their life.


I realize that this is because of the painful thought processes we have to entertain. I know all about the intentional denial factor. But what we are stepping into is a life of drug dependency that in the long run is going to shorten their lives, because most of these drugs are in fact toxic to their system. Their immune systems – which, by the way are NOT directly affected by MD – are now compromised by the very drugs we are trying to “save” them with. This is a slippery slope of medical dependency that did not need to be, as one drug side effect begets another counteractive drug, which begets another, and another, until we surely will have that “cocktail”. And the drug companies wear it well. 


For those with a recent diagnosis, I understand the overwhelming desire to want to “save” your child. They look fine right now – just a little “off” of the norm of age appropriate development. And in our current narrative, that means we need to do something, and that something is raise money for a cure i.e. the drug companies. Because your child is still walking, laughing, probably unaware of his “fatal disease”, this seems reasonable. We call it “raising awareness”. 


But the awareness that needs to be addressed is within our own homes, long before we export this to the world that knows nothing of it. The PARENTS need to be aware that as your son ages – drugs or no – your life is about to undergo a paradigm shift with him. With the little guys, you are not thinking about whether or not you will be able to afford the right kind of wheelchair, or what kind of vehicle you will tote them around in, or what happens when they need a Hoyer lift for every transfer, and a hospital bed, and how much time it takes to dress a 14-year-old for school, and how to manage your life around that. You don’t think about the necessity of straws, or what to do when they can no longer manage the Legos we inundated them with. And how are you going to handle his sexuality, mom? Is there a dad here? Then there is also a marriage that has to deal with a third person in it, night and day, up close and personal. Good chance there are other children who can’t be kicked to the curb because they can function independently. 


What I’m telling you is that this “disease” does not need a pharmaceutical answer – it needs a change in thinking. Once you change the thinking, you will, by default, change the disease, and get the cure you have prayed for. It just isn’t coming in a bottle of pills or IV treatments. It’s coming in a way we should try and come to expect. It is in not seeing a Duchenne-affected child as tragic; a problem to be fixed; crippled…handicapped…pathetic…fatally ill…DISEASED.


If you’re like me you will bristle at the description as you look at your son, and loudly cry, “FALSE!”  We would insist that this is not how we see our sons! But it’s time for a little self-examination. Yes. Yes, we do. And it’s reflected in the beggar’s behavior we engage in, and how we get all excited when a rich guy gets affected because he won’t look so much like a beggar. We are a glorified pity party, where we foot the bill, and it’s been going on since Jerry Lewis started it how many years ago. We are the tragic, helpless victims of a disease and we need help. That’s how we see it, that’s how we play it, and that will not change it. If we really want to change it, we must first indulge in honesty. And only then can we see this in the light of what it could be. 


You see, Not all beautiful things are good. Not all good things are beautiful. And such is a child who will be living with Duchenne. Did you notice I did NOT say “dying from a fatal disease”? There you have change number one. Heads up: LIFE IS FATAL FOR US ALL. Shame on us for the death-sentence we place on our boys. No one has a guaranteed life into adulthood. No one.


Then there’s the “disease” thing. Let me share personal point. My son, at 15, heard the words “fatal disease” strung together for the first time, and they were describing Duchenne, a condition that he is well aware that he has. His words to me? 


 “Why do they call it a disease? That makes me feel like a rat in the sewer or something,” with a look on his face as if someone spit on him. Who is responsible for calling a genetic mutation a “disease” in the first place, and why must we perpetuate it? If I called a Down’s Syndrome child diseased, someone would take me to task on that, you can be sure. Change in thinking #2: Stop with the disease thing…it is a genetic condition. Period. 


Remember Willy Wonka and the golden tickets? Well, in my world getting a boy with Duchenne is a Golden Ticket. I get to enter into a place that almost no one has ever been. I’m the parent chosen to go in with him. It awesome…it’s creepy…it’s amazing…it’s frightening…it’s colorful…it’s crazy…it’s calming…it’s nerve-wracking. But at the end of the day, we exit that place  different people than we went in. Like Charlie, when faced with compromise on our integrity, we scorned the big prize for the relationships in our life…for LOVE. And it’s only in walking away from the corporate promises and returning to the human side of life that we are granted the keys to that kingdom. And once in that kingdom, we are free to create the lives we dreamed of. 


Look around you! If all you see is a disease to be cured, and begging for scraps from the government and pharmaceutical tables, you are missing out on things that would really change our lives. Think of  the world of robotics, which could have power wheelchairs looking like iron lungs in no time. On physical therapies that would keep them moving their muscles artificially, instead of atrophying into stiffness. On technologies that could give these boys the chance to give the world of their gifts, instead of languishing in the solitude of their homes in front of the computer and video games, the only things left for those who have been left to wait for the drug companies to do their thing. Could it be that having a boy with Duchenne is your cue from the Universe, or God, or the Powers that Be to push you to see REAL possibilities of LIFE? To see that what you have is the very definition of a HERO? 


Let’s talk about heroes for a minute.  How many times have I read someone lauding their son as a hero, and then curse the “disease” that afforded him the title? It’s a package deal. Most teenage boys, regardless of disposition, are monosyllabic with their parents and seeking their own meaning to life at that age. Parenting becomes a spectator sport. But not for us, you see. We are blessed. We have a hero we are raising, and will be effectively a Siamese twin with this same hero, and so thereby have to develop some heroic attributes ourselves. 

But who have we been taught are heroes? Those with outstanding athletic or acting or money-making skills? Why then, we just have a pack of short-bus losers. Not a society I want to live in. But let’s talk about the boys and men with Duchenne that truly inspire us. They are doing things that everyone else does: writing, directing, producing, going to prom, graduating, marrying, travelling cross country with friends. So why the inspiration? Why the standing ovations and sense of awe? Because they are amazing for what they were able to accomplish IN SPITE of being “diseased”. Because like all heroes, they face what we esteem to be insurmountable odds to come out on top. They still love and live life, despite the fact that we all “hate Duchenne”. 


We are conflicted. These are not strugglers and stragglers. These are not immobile invalids we need to pressure society to accommodate. We instinctively know this. We know that they are, in fact, over-comers, who are brave because they have to be, and we know that most of us are not equal to that task. Yet, we take their actions and serve them up as icing on the cake at our pity parties. We devalue them by reducing their efforts to an appeal for money they will never see. At a certain stage of life, we realize that any “cure” is a moot point, but by that time, you have no more time for running around begging. Your life now revolves around this super-hero you have birthed, and all the research in the world is meaningless if you still see his life as merely a struggle to live a standard-issue life until they die. 


In this context, our fundraising makes no sense at all. Imagine having a child who is a gifted athlete. I mean, over-the-top Olympic hopeful stuff. “Oh, dear,” we cry, “Janie is a special child! She’s not like the other girls. She so much faster, so much better at her sport than all the other kids. What if we have to allow her to be homeschooled so that she can practice more hours in the day to become the best? What if she wants to actually try for Olympic status? Her training will be a rigorous hell-on-earth! Oh the struggles, and battles, and tears, and missed social life, and high expectations, and potential crushing disappointments! And fame…oh dear. Maybe we can find a cure, so she will be just like all the other kids.” 


It’s the same…yes, it is. Our children might not be impressing anyone on figure skates, but their gifts hit people at a far, far deeper level than ESPN. They get to people’s HEARTS. They get into their minds. They see things that those who rush around in their “healthy” bodies will never even notice, and they would probably be able to share these profundities with the world if they hadn’t been labeled by their fellow humans as broken, diseased, and pitiful. Put them on a stage for all to see just how pitiful they are to wrench a dollar from the merciful masses for…what? These kids are the X-Men, but unless they have knives for hands or can control the weather we just pass them off as hopeless cripples? 


No. In my way of thinking, there should be schools set aside for them, just like the X-men. They ARE different. They will never be mistaken for “normal”. They are special, indeed. They are gifted. And those gifts will cost them. And they will pay the price for having it. As will you as parents. And the cost is great.  Will we honor their gifts with the reverence they deserve? Or will we be found begging society to make room for them, while we search for a “cure” for the very matrix of their gifts? 


So how could we possibly make this happen? Again…A CHANGE IN THINKING. And that thinking has to start at home, where this child will be nurtured and raised. We need to stop listening to what the current world paradigm is, and listen to our HEARTS. We need to stop being victims, and take up ownership of our situation. We need to stop seeing our children as SICK. They are not. They are rare. They are different. They are gifted. They are special. They have a spirit that will be stronger than any physical body if we will but allow them to see themselves as who and what they really are, instead of pathetic patients in need of pharmaceutical “cocktails”.


There should be a touring bus coming through every town in the U.S. on a regular basis with a Duchenne boy on it, inspiring celebration for a life being LIVED. There should be a line of young men waiting to accompany such a hero on his trip. This is how lives would be changed! Want a kinder, gentler world? Give people the chance to live with one of these extraordinary men and become involved in their daily life for even a few weeks. They will never be the same. We shouldn’t even have to pay people to do it…for it is an honor, privilege, and task of heroic proportions all by itself. 


Who is going to tell this to the world if we, as parents, do not esteem it so? If we see our boys as burdens, we become not much more than human zoo exhibits that people like to visit so that they can feel better about their own lot in life, but are happy to leave at the end of the day. Our message turns into, “Hi! My life sucks, my kid is diseased and dying. So since we know you don’t really want anything to do with this shit, could you drop some money in the hat?” And as life goes on, and the progress becomes more and more difficult in the life of Duchenne, the tendency for the story is to become more tragic, and pretty soon you have to leave the spotlight, because the sorrow we project is downright scary. Plus, it gets a little too obvious that all the money for a “cure” has been for naught. We must not allow ourselves to see it this way.  


Life with Duchenne is like a video game. We level up as they grow. The levels become increasingly difficult, but they can be won: Not with medicine, but with SPIRIT. With attitude. With guts. With risk. With chutzpah. And winning is NOT living forever. Winning is finishing the game after completing all the levels successfully, and becoming the full person you and they were meant to be. And we must come to the point of allowing this to happen. We resist. We try to stop time. We try to turn back the clock. We are so focused on an uncertain future and pining for the past that we miss the NOW, the present and all that it is bringing us every day that grows us. 


Life with Duchenne is a roller coaster ride, and here we parents are, white knuckling the safety bar, screaming our head off, feet firmly planted inside the cart and our legs shaking with the effort of trying to stop what cannot be stopped. Enough, I say. Let go. Raise your hands. Surrender to the void. Scream with a smile for the complete and total overwhelming rush that it is. That’s your kid beside you. Let him enjoy it, too. 


The hope we seek is within us, and it’s in a perspective that does not see this as a medical problem to be fixed by some drug company or government approval. It is a THINKING problem that can be fixed right at home by rejecting the whole story we’ve been told about Duchenne. It is NOT fatal. It is NOT a disease. Your child is not a problem to be fixed….he’s a hero in training. We need to accept that challenge with grace and strength, so that they can indeed be all they can be. 

They are not meant to be poster-children for suffering. Nor are we as parents. We have been knighted with a task that is superlative and herculean in nature. Will you rise to it, or crumble underneath it? It’s all a matter of the way you THINK about it. 


So…do we just ignore the difficulties? Ignore the medical needs? Pretend it doesn’t hurt at times? Charade that our hearts are not broken regularly and repeatedly? Deny our despair at times? No, no, no, no and no. That’s part of our hero training. Heroes of history have all met with life and death decisions, physical hardships, extreme pain of both and emotional and physical nature and crushing defeats. The difference between a hero and a victim then is in how you interpret the life you have been given. In whether or not you allow these things to grow you, or to destroy you. It’s in facing the Highest Power in your life with a sense of profound gratitude for choosing you, rather than shaking a fist and cursing your fate. 

It’s about not wearing your pain on your sleeve for all to see and pity, but showing the world that you have a Golden Ticket. Yes..YOU! And only when we stand with a pride borne of humility and hardship will the world see us in that light. As long as we parade about as victims and beggars, that is all we will ever be seen as. People disappear from your life, because you are depressing and sad and a representation of everything nobody wants. That is the picture we have painted. 

I am suggesting it’s time to scrap that picture for a new canvas altogether. But this time, let’s give the paintbrush to those who understand that we are not looking for handouts and pity. When they call the Duchenne people to come forward, let’s not send in the clowns to dance for money…let’s show them the height and breadth and depth of soul that people aspire to. Let’s present people who are worthy of infinite respect, who are not asking you to relieve their suffering and remedy  their tragedy, but who inspire them more than a Tony Robbins conference, or “The Secret”, or the Wisdom of the Holy Books. People of strength, and joy, and gratitude, who see their lot in life as an opportunity to live it to its fullest; fullest joy, fullest sorrow, fullest victory, fullest pain, deepest valleys, highest mountains. 


Where does that leave our “money for a cure” issue? Right where it is, shrugged off as a rag in exchange for the robes that befit us.  Find me a “charity” for which the return on investment is not monetary. Find me a van for every family that needs one. Find me new and innovative technologies to assist our heroes with movement and communication and connection. Find me financial support for the medical appliances that become necessary as we level-up in the game. Find me community awareness that does not involve a pity party for the “sick” one. 

Let us, by our show of strength, create a community that rallies around such kids with all the enthusiasm of the Green Bay Packer fans. Let’s stop being such downers that we are shelved into the pigeon-hole of the needy by living lives and showing attitudes that people are drawn to and not repulsed by. Let’s create a world where there is support for parents – plenty of shoulders to cry on because it’s not a permanent state-of-being for us. A world that doesn’t need to be reminded to make their establishments accessible – because if they are not, they would be afraid the heroes would not come. (Interesting…because heroes are better for a successful business model than beggars.)


The question then arises: Are we willing to change our thinking? Or have we become comfortable victims? Do we use our “diseased” sons as a sort of social currency? Have we rather enjoyed the constant stream of pity? Would we be lost if we had to stop the busy-ness and distraction of our fundraising long enough to realize what we honestly believe about it? And how this looks from a distance? Do we really want a cure? Do we want one bad enough to stop all the presses and perhaps write a new narrative on this? 


It won’t be easy. But it’s not impossible. Try just fantasizing that world for a few minutes. It exists. As parents, we already live there. We arrived there the day our son was born, and we held them and promised them a life worth living. Look at your son today and tell me that you don’t see a hero. If you do, then start putting that belief into your thinking. When someone comes and wants to use your son as a mascot for pity, it won’t make sense anymore. You will have started thinking that what they are looking for is pity to generate donations. But if you are going to sell anything about your son, it won’t be his tragedy, it will be his Heroism. He IS the cure for Duchenne as we’ve been lead to believe it. And because he IS the cure, we are just about the business of LIVING LIFE now, and we will do that with or without any pharmaceuticals. We are already winners, and people would rather join the winning team than financially prop up a losing “battle”. 

And with the support of people, our sons won’t suffer the isolation and stigma of being "diseased".  People want to hang out with heroes. And our sons will be more apt to pursue their passions, because people look up to heroes, and heroes tend to live up to or surpass expectations. And opportunities will abound, and obstacles will move out of the way. 


Finally, I need to say that I offer no apology for how I see this, and have no need to entertain argument regarding it. None should be generated. You need no validation from me for any works that you may currently do in the fund-raising arena. I believe your hearts are pure in your quest. 

But I see every Duchenne kid and parent as a comrade…part of a reluctant-elite force of humanity. I see a value, a strength…a trait nothing short of valor in all of you that I have come into contact with. And it’s as if you don’t even know who you are. As if we are sad, and small. I want you to know that we are NOT! And we are far, far above the social paradigm that makes us tragic. The monetary nature of our society has played us. And I’m pissed off about that. Because it makes us out to be fools. So much money for them at the cost of so much for us. And I realize that most of the efforts we put forth were by newly “condemned” parents. But one day, shit will get real enough that you see the folly in it. You will not be thinking about money and a cure when you are in a battle for air. 


Let’s fight for something more important than a pharmaceutical cure. How about let’s fight for our dignity, and sell the benefits to society for appreciating those heroes among them. Of the benefits of making sure these heroes have everything they need to live a life of service to others. Where people greet you and your son with awe, and not “Awwww.”  


We need to change the thinking. We need to change the story of Duchenne. And we’ve already got a lead in on that, you know. Our friend Dr. Guillaume Duchenne has another label to his credit. He studied facial muscles during smiling, and differentiated between a forced smile, (which more closely resembled pain), and a spontaneous, genuine smile. He labeled the latter: The Duchenne Smile. When we can all wear our Duchenne Smile, we will have the most tangible Cure for Duchenne we’ve ever seen.

2 comments:

  1. I can't find a word that does justice to how much I stand in awe of what you do - you are spot on with this and it is the way things ought to be. I wish that every family that is working with Duchennes can read this - it is powerful medicine!

    ReplyDelete
  2. Perfectly stated! Thank you for the words expressing how I have always felt about my hero, Michael.

    ReplyDelete