Dr. Jose Montoya, head of the ME/CFS initiative at Stanford, gave a talk yesterday. I  started streaming it online, but then unfortunately got pulled away. I did glean a little bit of data however; That the life expectancy of ME/CFS patients is 55 years.

I’m 45 years old. That gives me another 10 years. (yeah, no guarantees either way, I know). I suppose I should be shocked by this information. I should at least be a little terrified. I’m neither.

He also mentioned how some of his patients had taken their own lives, or rather, he said “hope could not reach them”. Hope could not reach them. There is so much pain in that phrase. There wasn’t a shred of judgment in his voice, just the sad acknowledgment of loss with an inflection that said “I get it”.  A lot of people with CFS, Lyme, and related diseases commit suicide. I’ve seen the number stated as 7 times the average, or 30%.  Sounds about right. I don’t plan on joining those numbers. For really only two reasons. My parents are still alive, and I’d never do that to them, and because hope still reaches me.

I see the research teams all over the world, in the US, Norway, Australia etc, moving both so quickly and yet so painfully slowly. Each time a study is launched, I feel like someone holding a lotto ticket. I know the odds are against me, but for $1, I’ve earned the right to dream for a little bit. So dream I do.

But if, on Dec 29, 2027, when my clock flips to 55 years, my heart fails to keep pushing blood through my veins. I’m OK with that. 

Only healthy people fear death. For people who have spent years suffering, dragging their chained souls through life, there is no sadness is death. It’s just the expiration of a vestle carrying the remains of a  life that effectively ended years ago. When the final numbers of the lotto are called, the fantasy ends. Hope must be crumbled up like the ticket with the losing numbers, and discarded.  The fantasy of hope finally cashed in for an eternity of peace.