Another Interview, Sadder And Wiser

I did another interview this morning, this time with Global News Calgary. The interviewer remembered me from their interview here in my home last summer during the Ice Bucket Challenge. Her first comment was that I was looking good. Then I explained to her that this was how ALS worked. I might look good, but the disease is still progressing, still taking me away one bit at a time.

This interview was actually a three person setup, the media interviewing myself, Dr. Lawrence Korngut, one of the country's leading ALS researchers, and Karen Caughey, the Communications Director from the ALS Society of Alberta. The subject was the impact of the ice bucket money on ALS treatment and research. My part was to give a patient perspective on what this money and research means to patients.

I did my bit, told my story. When asked about how this research impacted me, of course I said it gives hope in a hopeless situation. I talked about the emptiness and anger that resound after being told you have a terrible illness and there is nothing anyone can do to help you. I talked about the positive possibilities of perhaps having my progression slow down or even, maybe, stop.

At the end of it all, I was exhausted, sadness and depression creeping over me. I've noticed this feeling in the last couple of interviews I've done; the one for Right To Die legislation and this most recent interview. These interviews leave me feeling the challenge of ALS more than those I've done before, those focused on the Ice Bucket Challenge and interviews around funding cuts by Alberta Health.

I think I know why these last couple of interviews have had this effect on me. In my prior interviews, I was talking about living with ALS, how government services helped me live, how the Ice Bucket Challenge would raise money to help me live better and possibly longer. The two most recent interviews, however, focused more on how I was dying from ALS. This was not intentional in today's interview; it's just that the interviewer had some sense of the loss over time and the questions revolved around hope, something I have learned to mistrust with ALS. The interview the other day, the one about Right To Die, was clearly around how I planned to die, not how I planned to live.

These thoughts, these reminders of the ultimate outcome of  ALS, are tough to deal with. They are lead weight on my spirit. What I have learned to do is take them out, look at them, and then put them away again. There is no need to dwell on the inevitability of death. Even with treatments, hope is only faint, the possibility just barely there. What I have to do for the rest of my day is start looking at how good my life is, how much I have lived, and how well I can live, at least until I die.