~I define this as choosing, or finding joy in the midst of dying from a terminal condition.

This in no way detracts from the reality of the pain, grief and suffering brought about by terminal disease’s. Mine is ALS, Lou Gehrig’s disease. The pain begins when the fuse is lit by the words, “you have ALS”. From the moment the recipient of this unstoppable spark receives the diagnosis, only fate knows the length of this fuse. Nothing, at this very moment, can extinguish this terminal spark.

But joy? How can one find joy knowing your life has just been given a fatal blow? It’s no easy feat, by any means. I won’t preach, I will share with you what I do to find joy living with ALS. As unique as each person’s journey is, so is how they find reasons to enjoy life, these are mine.

The obvious one’s: family, friends, self, but wait there’s more!

I find great joy in living in spite of ALS; in a sense I refuse to feed ALS more than the bare minimum. I’m not under the illusion that it won’t take everything from me. But exerting my internal defiance empowers me. This in turn fuels my desire to share my journey publicly, and to help others by engaging in advocacy.

What I write and share I do for several reasons.
• It helps me dump all the anger, frustration and grief I experience living with ALS.
• I write not only what I feel, but what I hear and observe from the community, with creative liberty.
• I’m sharing so those unaffected by ALS can understand the strength it takes to endure life with ALS, to include challenges families face.
• I share because so many living with ALS lose their physical voice and aren’t able to express themselves.

Lastly, I truly love meeting others living with ALS! Why? Because ALS doesn’t define them. We are inextricably connected by ALS, but who they are is so much more than the diagnosis. Having been stripped of all pretenses we create for ourselves, somehow we connect on a deeper human level. I am in awe of others and who they are in spite of ALS, truly.

I hope you are able to find your terminal joy.

TJO