Living with the Losses of Chronic Disease or Disability: Coping vs Denying

Living with chronic disease and or a disability often comes with losses to grieve.

As Rheumatoid Arthritis (RA) painfully ravaged my hands into gnarly twisted deformities making me look and feel like a grotesque gargoyle monster, I one by one gave up trying my favorite pastime: needlework.

I was once a fairly decent knitter, crocheter, needle pointer, embroiderer.

I also did counted cross-stitch:

Some of my own original designs, as below:

One by one I stopped without any fanfare accepting my diminished abilities with the motto “it is what it is” and with the same half full attitude that has gotten me through 40+ years of living with a chronic, incurable crippling disease, enduring 8–10 surgeries and a week-long hospitalization to drain a pleural effusion and partially collapsed lung: It could be a lot worse. I now see that while might be a a great way to navigate such challenges and the loses that accompany them, it also has some shortcomings.

Backstory

I was one of a few members of my congregation at the time who helped care for a member with ALS. In the beginning he flew overseas seeking cures and later clung to hope with each new charlatan and guru healer and who promised to help. As time flew by far too quickly, I observed up close a capable father and provider with a brilliant mind deteriorate into an adult needing assistance with all personal care and eventually relying on a device attached to his forehead to peck out letters on an electronic keyboard to communicate and needing to be totally reliant on others for everything. ALS, a nervous system disease that weakens muscles destroying physical function. Thankfully for its victims, it does so painlessly. But it leaves sufferers not a shred of independence, nor the protective innocence of a mind ravaged with Alzheimer’s. Instead, I watched painfully — and pitifully — as this once vital business owner and active member of the community lived with full cognitive of his diminishing lot in life.

Watching this up close, as I did, reinforced my longtime fear of loss of independence, either mentally or physically, a fate, I thought far worse than death.

There are people with no sight or no limbs. How could I possibly allow myself a moment of self-pity, as I grew less able to do simple things like button a button? I have a woman friend who was born sightless and has lived independently, caring for her aging mother until she died. Totally blind, this woman cooks and bakes — very delicious brownies, I might add! She is an active member of her church and volunteers, helping other congregants. The only thing she cannot do is drive and the only help she has had are her service dogs and sadly outlived three beloved and devoted canine companions.

In keeping with my full cup life view, I give thanks every day for the roof over head, heat in the winter, indoor toilets and sewers, hot and cold potable water, ample food — things many in the world and in this very wealthy nation lack. Most of all I am grateful for my career at our local state university that provides me excellent health care coverage even after I became too disabled to continue working. My online RA support group experiences daily brings into clear focus the number of Americans who are uninsured or under-insured and suffer in pain with no or inadequate prescription coverage or even the ability to see a physician. It breaks my heart to hear their plight as not only are they denied some of the very expensive infusions of biologic medicines I was privy to, but as the opioid crisis clamped down on doctors, cruelly disallowing patients in need their last refuge: narcotic pain relief.

While I wish they’d find a cure for RA, I am graetful for biologics which have given me years of remission.

I am grateful that while I live alone, I am able to get in and out of my car and drive and that I live in an over 55 gated community with 24-hour nurse at my disposal and an alarm system that includes an emergency call button for those times I have fallen and can’t get up having become like the women in the commercials I used to laugh at. I take none of these amenities for granted.

So, I can no longer engage in my crafting pleasures. So what? I had cats all of my life and had to re-home my last cat after I broke my ankle because he insisted on playing slalom in and out of my feet as I walked room to room. I wistfully moved on as one does as age or incapacities prevent us from doing what we once could. After all, I was no longer 20 or 40 and slim either! I was aging alone with a degenerative, progressive disease that shortened my lifespan and puts me at risk for heart and lung disease and many other complications. But it could be worse. And, after all, while I was unable to engage in my hobbies for decades, despite RA, I am able to write — my true passion. I peck at the keyboard with one index finger from each hand and make lots of mistakes, but I have managed to write and publish two books and hundreds of articles — not for any monetary profit but to further my activism. And now I have access to dictation software and applications.

Humor is the Best Source of Endorphins

My two favorite comedians, Ryan Niemiller (who shares hand deformities with me) and Josh Blue, who both hilariously joke about their disabilities. Check them out!

I too have used humor to look at the bright side. Since I could never sing or dance, I have thought about a stand-up routine, which would go something like this:

>> I wasn’t “born this way” but I can’t work as a hand model. Or a flight attendant: No one would know where I am pointing! They’d all run around in circles crashing into one another trying to exit the plane.

>> After meeting a friend at a diner while back, we left in our separate cars. As I pulled out of the parking lot, I threw him a kiss from my car. He called me and asked why I gave him “the finger.” Truth is, I can’t give anyone the middle finger!

And here is my personal gratitude — look at the bright side — list (beyond the basics as stated previously):

>> I’m glad I have no family members or friends who rely on my ability to use sign language. I am a totally mute in that means of communication.

>> I’m glad I’m not a Trekki, ’cause I cannot make the Vulcan hand gesture

>> Never was surfer, so forget that hand signal

>> Bowling never was favorite pastime

>> While I’m still a hippie flower-child at heart, I’m glad my two-fingered peace sign days are behind me (like Woodstock)

>> I can’t make those cute hearts people make with two hands

>> Never did play rock, paper, scissors

>> Glad I can drive and no longer would ever dream of hitchhiking

>> Glad I don’t rely on fortune tellers reading my palm

>> And glad I never did master the guitar (despite trying) or any other musical instrument

I have learned to joke my way through challenges. But as I get older (approaching 77 this week) my list of physical ailments grows (now including Sjogrens, Fibromyalgia, OA and OP, Spinal Stenosis and neuropathy) I am still a woman with much to be thankful for which leads me to wonder why I also get cranky sometimes. I find myself more easily irritable, impatient and grumpy — not that I have anything to be in a rush for. And so I asked myself why and this is what I concluded:

While I accepted losses such as the loss of my needlecrafts, I never mourned them and that was an important step that got skipped over. My completed knitting and other needlework projects were a source of pride but also, they were calming, soothing pastimes as anyone who engages in similar activities can tell you. I was so focused on accepting the things I can no longer do, I never allowed myself a moment of grief and sadness of losing the comfort they afforded me.

This is my message. When age, infirmity or affliction takes away any pleasure, allow yourself some time to grieve that loss. Even a temporary setback. Sometimes we are so determined to overcome, to push through, to valiantly overcome, that we deny ourselves the necessity of giving even a moment to recognize and be sad for what once was and no longer is. Humans are resilient creatures but we also need to give ourselves a break sometimes from being too stoic. Any loss of ability is a loss and every loss is a bereavement. Our feelings are guideposts. When we side-step, deny, or push down our feelings, they seldom fail to come back in other forms, as in my general crotchety attitudes.

Why wouldn’t I be less joyful? I now see that I had lost not just something enjoyable but a source of relaxation and comfort. Letting ourselves feel our feelings — while not dwelling or spiraling downhill into depression — is a well-deserved and healthy gift we can give ourselves. Having a pity party or an occasional venting rant can be just as important as having a message or a walk in the woods.