Wednesday, October 7, 2009

On fears for the future

I received a letter today from someone who was asking me about the possibility that taking Copaxone can help reverse existing damage and prevent new damage. I am posting my response because I think these questions are something we all face:

My read on your questions is that you are scared about the possibility of long term disabilities and are wondering if copaxone helps to clear up old damage. Is that a correct read? My answer is many layered and not an easy one.

Over the past 20 years of having MS, I've had to learn to live with the fear that today might be the last day I walk. I could wake up in the morning and find that my legs no longer work. Or the fear that whatever transient thing I am feeling today may be with me for the rest of my life.

Copaxone is a negative drug, like all MS drugs: if nothing happens then it's working. But, at the same time, nothing might be happening in any case so the drug might be having no effect, so there is no way to really know. I hate to say it, but these are the fears and the uncertainties that the condition brings. I could tell you different, but it wouldn't be true.

I spend a lot of time working on my fears, as I'm a person who was completely lost in fear for much of my life. Knowing that these fears are real means that I am aware of them and then they don't have control over me. I suspect that another person (who I have yet to meet) would use these fears to take every moment as special knowing that tomorrow everything might change.

For me, I use the fears to help propel me forward on my person growth. I know that my spirit is very tied up with MS, so I try to use it as a tool to give me clues as to the growth I need to do. But I suspect everyone forms a different relationship with the fear.

I recommend not trying to get to any point, but spend time with the fear and then see what relationship develops, just making sure that the fear is acknowledged without letting it take control.


  1. well, this is familiar. and good advice too.

  2. I have been reading Martha Beck's "Steering by Starlight" which is a work and guide about dealing with fear. She is not only bright and a scholar with a sense of humor—two things that hardly ever go together, but she also had a life of physical challenges. I totally recommend her to you. She has helped me a lot; though the fear of the future was not my issue. Maybe not being able to walk tomorrow just enriched my appreciation of the here and now.

  3. Thanks for the recommendation! I'll take a look.