Another TV Interview

I did another TV interview yesterday, this time offering my thoughts on Physician Assisted Dying, or what others call Physician Assisted Suicide. I prefer the PAD term; I really don't want to die, but there will come a time when it will make sense, a time when I will be maintained by machines and tubes. Rather than simply stopping my food intake or letting me choke to death, I would prefer a more caring, managed approach to my own demise.

Doing these interviews does not take a lot out of me physically; all I have to do is sit there and look like I have ALS, a very easy thing for me to do. Emotionally, however, it takes a lot out of me to sit there and talk about the reality of having ALS, the certainty of death, how my illness is affecting me, my quality of life, and how I will die. These are difficult subjects to contemplate, let alone share with others. It is not an easy conversation, no matter whether on camera or not.

Inevitably, after the interview, I feel depressed, down, saddened by what we discussed. The media process is also kind of disappointing in its very nature. We do about 15 minutes of interview and about 30 seconds appears in the piece. It's a lot of work for just a few seconds of television. Notwithstanding what others may think about my loving the spotlight or being a media hound, it takes a real, draining effort on my part to do this.

Regardless of how it makes me feel, these interviews are important. It is a sense of responsibility within me, like it is my job to tell this story, to share this reality, as widely as I can. I feel like the more I share this story, the more people know about ALS and the issues that go with it, the more work will be done on research and finding a cure. Without public awareness, there will no advances in this field.

I want a cure for ALS. I want people to know how terrible this disease is, the difficult choices I am forced to make on a near daily basis, how I will end up when all is said and done. It's not a pretty picture, not even on TV. But I will keep telling my story as long as I can, so that others may see and learn, so that one day we might have a cure for this pernicious, brutal, ugly illness.