A story popped up on my Facebook yesterday, from Humans of New York. Sometimes I find these stories a bit trite, but the opening words caught my eye:
“I miss that we can’t go out and dance. Or visit other people. We used to volunteer…”
The voice was that of an older gentleman, describing his life now with a wife who is experiencing what I’ve heard called “The Slow Goodbye,” aka, Alzheimer’s. The husband describes all his wife can no longer do, and says:
“I don’t see this as a curse. It’s an honor. This is what the Lord has given me to do. She has served this family her entire life. And now it’s my turn to serve her. I may not have her mentally. But I have her… Every morning we’ll sit in this chair and we’ll cuddle until noon. I rock this lady more than I rock my grand children.”
(see the full story here)
I was brought to tears.
Life-altering illnesses scare the hell out of me. And along with it, one of my greatest fears in life is that I would be a burden on anyone.
My mother hid many aches and pains from Dad, because he just couldn’t find his empathy mode, and made her feel like a burden if she was ill or incapacitated. After her major heart attack, all my Dad could tell me about my Mother’s condition was how horribly he’d been treated by hospital staff, and what a burden he suffered. And although I miss her terribly, I thank God He took her quickly once the stage 4 cancer was diagnosed, so that she didn’t have to linger and feel a burden to Dad.
A couple I know had incredibly successful careers, decided to remain childless, and retired rich at 50 to spend a decade sailing around the world and enjoying life. Both were incredibly physically fit and young at heart. She was vivacious and fun. They looked forward to many adventures. The wife was diagnosed with Alzheimer’s at around 57, and lingered on in her very fit body for nearly 15 years. Her husband cared for her at home as long as he was able, but when she would turn up missing, and barely recognized him, he needed help and put her in the best facility money could buy. He was uncomplaining and upbeat, and I so admired him. I never knew what to say to this man, but I wept for him, because suddenly his life was over. He was married, but to a stranger; he had a moral responsibility to care for her, and he did. He was still young, healthy, and no doubt full of dreams. I can’t even imagine suddenly losing your best friend and your dreams like that.
This is my biggest nightmare. I have told SJ that should anything like this happen to me, to just ensure I’m cared for but to never stop living his own life as fully as he can. The thought that my illness would deprive a person of enjoying life is unbearable for me. I seriously consider moving to a state with legally assisted euthanasia.
SJ of course looks at me and just shakes his head. Because he’s the guy in the story above. He’ll stay with me until the bitter end, I’m “afraid.” And, of course I’d do the same for him (it’s different if I were to be the “giver” or “caretaker” because I’d be “in control”).
Enter my recent diagnosis for an autoimmune disease: the doctor can’t decide if it’s Rheumatoid Arthritis or Lupus. This class of diseases never were on my radar screen, I never chose to understand them. I never realized all the other diseases that tag along with autoimmune diseases. I vaguely recall having some very uncharitable thoughts about people with autoimmune diseases… like they were lazy, didn’t care about their health, were probably hypochondriacs. When I’ve known anyone with cancer, it makes me angry and uneasy. I can’t wrap my head around that.
I’ve gone to a few RA sites recently and read the testimonials, and the sad stories of people who have suffered since their 20s and 30s. I can now identify with the symptoms that people describe, and the frustration of random good and bad days, days with no energy and flu-like symptoms, pain that defies any drug, no known cure or remedy, and the inability to explain your illness to people. Autoimmune doesn’t have a face, it is a silent disease. It affects young and old. And, it potentially messed up my future plans to see the world and have an active retirement. It certainly creates a lot of depression.
And it sure as hell isn’t sexy.
Damn. Mortality is just not sexy.
As I checked into my flight last week, my entire right side was in pain and dysfunction. I couldn’t manipulate my fingers to grasp or do the simplest of tasks. It was a struggle to wheel my carry-on AND present my boarding info and ID all at once. The TSA agent was surly and terse at my fumblings. She pulled a face that my ID was in the phone case, and wasn’t about to make it any easier for me. I wanted to scream at her, “Patience, please! I have this disability…” But of course I didn’t. I suffered the indignity of a rude person who is clueless, pretty much as I probably have been in the past.
On the bad days it’s obviously difficult to see anything good. I’m trying really hard to very actively thank God for every good day and every moment without pain. I’m looking for what lessons God has for me in this disease, but I know there are lessons here. What I do know is that my empathy meter has taken a major re-calibration, and I have repented of every calloused or unkind thought I’ve had towards a person suffering from an illness I didn’t understand. Just because I don’t see or understand you might have a medical problem, doesn’t mean you don’t. Or, a bad day. Or, someone you just loved died.
There is pain everywhere, and it is the human condition. We generally never are grateful for our health until we lose it. And when we do, we’re angry and indignant, as if we were owed this perfect life or have done anything to deserve it. No one was promised a perfect life, and when we take vows with another human being, we take them for life–in sickness and health.
I’m learning the lesson that Kindness is in terrible short supply. And the only thing I can do about that is to change me…
…And to be grateful for each good day that I get, that I get to see my kids growing into awesome and confident adults, and that my husband is here to hold me, cuddle me, and rock me.
…And that great Hunter Thompson quote:
“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming “Wow! What a Ride!”