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.
Back in the day when it was uncool to kiss your mom in public, my kids had two options. They could either voluntarily give me a quick kiss on the cheek OR they had to endure a big attention-seeking kiss from me that often lingered way too long. I thought about that when Max headed back to school a couple of weeks ago. I laid motionless as he hugged and kissed me good-bye. Oh how I longed to wrap my arms around him, give him a big kiss and linger…for a really long time. I sure miss those simpler days.
I experienced a new first recently. I said “F&ck you!” to Rolf in anger…first time in 27 years…and, no, I wasn’t angry at my disease, I was straight up angry at Rolf. Fortunately the visceral impact was diminished quite a bit by the fact that I had to repeat myself five times and ultimately spell it out to be understood.
Speaking of visceral experiences, I also recently thought a little too long about taking my life. I can honestly say I have never felt that level of desperation in my lifetime. The urge passed and, of course, I can’t physically do it anyway but it is a fleeting thought made more complicated by the fact that physician-assisted suicide is legal in California. I know that a lot of people worked hard to get that law passed in 2016 and it brings comfort to some but selfishly I wish it wasn’t even an option because it feels like a strange carrot being dangled in front of my suffering body. That’s not how I want my story to end.
I spent a large portion of my adult life working hard to preserve life and I always lived with the mantra, “Where there is breath there is purpose.” In a perfect world I don’t think our bodies would outlive our minds or our minds would outlive our bodies. I envision we’d all just go to sleep and not wake up when our time came. But the world isn’t perfect and my convictions are being tested beyond what I ever dreamed. I’m learning over and over that life is one big exercise in discovering purpose and beauty in all the imperfection. I want to live my life out naturally and experience the purpose of my final moments in word but the living it out is hard and frightening. It’s a classic “easier said than done”. 🙂 Please pray for courage and joy and laughter and all things light and hopeful. I said to Rolf and a friend the other day that we won’t get through this unscathed or without a few war wounds along the way but it doesn’t have to define how this story ends. I will continue to count on there being purpose in every breath…especially when I consider who the Giver of my next breath is.
But, you know what? Even if my mantra is untrue and I actually outlive my purpose, I have to remind myself from time to time that there is great value in being present if only to see purpose being lived out in those I love, like I did this weekend watching Wilson preach…