In the early 1970’s the rock band The Who wrote a song called “My Generation”. The song was a tongue in cheek jab at the communication gap between the younger generation and their parents. It became an anthem for many dissatisfied with the lack of understanding between generations.
This communication gap remains today despite every new form of communication that exists today. How many times when telling a friend or family member that our son or grandson has Duchenne Muscular Dystrophy they respond by mentioning someone they know who has “MS”. We all know the frustration. To some degree I see evidence of misunderstanding within the DMD community. One way to avoid this is to think carefully about the things we say to ensure the meaning is not obscured by emotion.
The most challenging example that I see in the DMD community is hearing or reading that people say they want a cure or therapy “for this generation of boys”. Webster’s defines a generation as a period of about 30 years. When some people in this community speak about saving a generation I am not convinced we are talking about the same thing. To be completely frank, it is almost implied that “saving this generation” means the youngest boys who have DMD. In some context it also means focusing on those who are still walking to ensure all is done to avoid the loss of this ability. I find this troubling for several reasons.
Regardless of how old a person is with DMD, finding better treatments for them is as important as for a newly diagnosed child. I know everyone is frustrated with the pace of research and the slowness of moving therapies to trial. It is imperative to remember life is precious, even when imperfect; all those affected by DMD are worth our energy and deserve the best we can provide. Our sons get older every day. At what point will we agree that at a certain age it is too late to think of helping them? When a boy is young thinking of the future is tough, yet it is necessary. The one thing that needs to be emphasized is while we fight for future therapies we can’t stop living the reality of our current situation.
It is especially troubling to think that the most crucial ability to “save” is walking. There is no question that independent ambulation is important in our society and for our sons, but there are other activities that may be more necessary to think about retaining. If a therapy can be developed that allows a person to continue using his arms, wouldn’t that be exceptional? In the scheme of things, being able to feed yourself, brush your teeth and wash your own face may be more difficult to lose. If a person cannot walk a wheelchair can help, but what device is available to replace arm function? And, are our sons any less a person because they are unable to walk or need help with their care? I think we can learn a lot from these boys about how to live graciously in spite of the obstacles.
What do our sons see and think about this? Children are just as connected as adults and what they read and how they interpret information may be contrary to what their parents desire. It is not uncommon for people to describe DMD as a “terminal disorder” or a “killer of children”. While it is true DMD severely limits life, young men are living longer with appropriate care and most describe their quality of life as good. How do these statements reflect on our young sons? I suggest poorly. There are other ways to elicit compassion and support for research and fund raising. Describing DMD as a progressive degenerative disorder conveys the urgency well enough. My sons know as much about DMD as most people in this community, yet as we have promoted looking to the future I think they are well adjusted. Constantly hearing that without a particular therapy you will die is cruel and inappropriate. I have to believe most families do not speak this way to their sons, but isn’t it easy enough for them to learn this is what we believe?
There is no guarantee any current therapy in trial or planned will completely arrest the loss of muscle function. It is good practice to hope for the best while making other plans. All trials take time and this works against our sons. What we can do is provide them the support they need to live with their disability while working to change the course of this disorder. No, it isn’t easy and maybe cruel, but life isn’t fair, yet we can work towards a balance between what we would like for our sons and what is practical.
Something else we all need to consider is how much we really need each other’s support in this community. There is enough pain to go around, yet we all could use a bit more understanding especially from one another. Fragmentation within the community only hurts all. It isn’t easy seeing beyond our own son’s needs, but that is what will make us stronger. Every young man with DMD counts and that is the key to our success.