I feel incredibly blessed for the life I have been allowed to live.
My husband and I have been together for almost thirty years. I enjoyed my own career while raising three beautiful humans who are now 21, 19 and 17 years old. We have lived in a majestic mountain town in the Sierras for the past twenty years. I have a powerful support group in my family, as well as a team of my closest friends held closely throughout all walks of my life. I call them my ‘wolf pack’.
I was diagnosed on January 6, 2018 at the age of 51. I did not cry when the doctors grimly told me my prognosis. I did not cry when I told my wolf pack what ALS was. I did not cry when I realized they were not kidding, there is no significant treatment and absolutely no cure. My rare tears of frustration come when I realize that ALS is just not a priority on this planet.
There could be treatments.
There could be a cure - but it is not going to happen by accident.
I remain astounded that even though this disease was discovered in 1869, not a lot has transpired since. ALS is the most destructive disease on the planet yet we sit with no protocol; two drugs that are marginal at best. We have allowed this disease to elude us for 150 years.
I am on a mission to ensure that protocol is created in my lifetime for a group of people who deserve it. Lou Gehrig said it best in his 1939 speech when he stated that he “has an awful lot to live for”. I, too have a lot to live for and will do whatever it takes to create pathways for ALS patients to do just that.
strikes young people, as well as older
hits extreme and professional athletes
tragically hits our Vets 2-to-1 – which is no way to thank those who have served our country
the #1 disease that doctors consistently say would be the worst ever diagnosis – hands down
It is a death sentence, but that is not the reason that doctors don’t want it. We all have to die one day. It is the way we have to die which places it at the top of the “avoid at all costs” lists. To become a prisoner in your own body is nobody’s idea of fun.
Here’s the crazy part about this disease...even though I continue to lose ability, I remain grateful and hopeful for what I have left. Mourning my losses feels like wasting my day. So many of us continue to maintain our positivity and hopefulness in a crazy tunnel of demise. The way I see it, my strong mind is the only thing I have control over so I won’t relinquish that.
I do not want you to focus solely on making me more comfortable while I die. I would greatly prefer that you join me in my fight to live. I am brave enough to participate in clinical trials and take experimental drugs/placebos to move this ALS needle along for faster drug development. I am committed to holding leaders accountable to stand with us and fight to conquer ALS.
ALS has lacked a voice in the past. I am happy to be that voice; to join the powerful voices of pALS all over the world.
I personally would rather die trying.
Make no mistake, I will die trying.
People with ALS (pALS) are amongst the fiercest you have ever seen. We merely need a little support and a little hope. We don’t want your “help”, we certainly don’t want your sympathy. We want you to join us in this fight.
Take my hand…
Take my baton…
Let’s run toward a treatment.
Let’s run toward a cure.
It’s time to conquer ALS.