About

Mostly, I am like other people. I am a busy wife, mother and community member. I’ve championed a learning garden at my children’s school, participated in local politics and nurtured personal research projects about food, nutrition and health. And, I want what most people want: simply put, I want to be successful living my version of living well. What’s different about me is that I want to do this while living with a fatal neurodegenerative disease with no known cure: ALS.

Living with ALS-or any crisis of health-is enormously challenging for all involved. For my husband and I there are financial ramifications, parenting considerations and role changes. For my children there are social hurdles related to looking different because their mother is in a mobility scooter, lots of requests for assistance from their parents and a need to mature a little faster. And friends and family struggle with how to interact with me and how to be helpful. And the list goes on. 

And I am one of the lucky ones. I have a strong, hero-of-a-husband who’s ability to create solutions to my ever-increasing physical limitations seems to know no bounds. I have several communities of friends and family just waiting to be asked to help. And, I have access to what is known as the best standard of care for my disease.

As grateful as I am for my good fortune, I can’t help but also give voice to what has been hard about my challenge especially because some of what has been hard comes from some unexpected places. Medical providers are disease management oriented as opposed to health oriented. Similarly, available social service providers have a one-size-fits-all mindset at a time when patient-centered care would seem more appropriate. Even some of the medical research literature speaks of ALS as “devastating” and “horrible”. And, although it would be hard to argue that these words do not reflect some truth about having such a big disease, they do not get me any closer to figuring out how to live with it.

And these unhelpful manifestations of mindset are not particular to those dealing with ALS. For the past several years I have had the privilege of engaging with people with a variety of complicated health problems including cancer, Sjögren’s syndrome and Stevens-Johnson syndrome to name a few. They are also searching for ways to live well with their health issues and often hit a lot of dead ends before (if ever) finding the right supports. Health providers who listen to them until they understand well enough to make suggestions that are relevant seem to be in short supply.

Living well with a health challenge-no matter how big or small-necessitates thinking outside the neat, disease management oriented ICD-9 box and it takes time and curiosity and a whole lot of up-to-date information.  I may not be able to change the systems that many experience as falling short, but I can pull together what I have learned and make it available to the millions of others like me so they can move on with living well with their particular set of challenges.

Advertisement