September 18th marks the two-year anniversary of my diagnosis. It also marks my official entry into the average lifespan of someone with ALS. This is especially sobering considering I felt the onset of my symptoms a year and a half before my diagnosis…’not sure how all that factors in, but I guess it doesn’t really matter anyhow because I don’t need a calendar to tell me my disease is progressing.
If I had to choose one word to describe the past 2+ years it would be relentless. Rudy’s death came like a giant rogue wave knocking me off my feet and then, BAM!, another one came with my diagnosis pulling me under into a rip current that has steadily taken me farther out to sea. Although we, as a family, have made the most of our circumstances at times in the past two years, the experience itself for me has been relentless…harsh, oppressive, constant, inflexible, suffocating. I guess this is where the hope of Heaven becomes particularly comforting but I really wish there was room in this disease for a break in the here and now.
We reorganized my care. My amazing team of caregiver friends doubled up from a two-week rotation down to one with two, sometimes three, shifts daily! I am surrounded and I am blessed. I have also never been more emotionally alone. It comes with a terminal illness, I think, because I can’t fully identify with my loved ones’ pain nor they mine. I know God can identify with my suffering but I wonder sometimes if He can truly identify with all of the crazy, irreverent, gut-wrenching and immobilizing emotions swirling in and through me all the time. I know that nothing can change the fact that God is near but that doesn’t make this journey any less lonely….that part is inherent and I’m learning not to be threatened by it.