The week of April 27, 2026, contained significant personal anniversaries:
My 67th birthday.
My 15-year anniversary since the onset of polyradiculitis (Poly Rad).
My 4-year anniversary since the deadly blood clots that forced me to give up my epidurals which I had received every 12 weeks for over 8 years.
Now it is May, which marks the 13th anniversary of when I received the correct diagnosis of Poly Rad after consults with eight different doctors over a two-year period trying to figure out what was wrong with me.
This upcoming June marks the 10th anniversary of discovering an underlying cause of my Poly Rad.
And August will mark the 10th year since my revision hip replacement surgery--the explant of my defective, cobalt-leaching hip and the implant of a non-defective one.
What have a I learned in all these years?
Too much to list.
But to sum it up in six words:
Loss. Grief.
Accept. Adapt.
Gratitude. Grit.
Not that I hadn't experienced these states of reality before, but I've grown to experientially know them on a much deeper level. And the learning continues. I doubt it will ever be finished until my last breath.
What have I lost and grieved due to Poly Rad?
The ability to cook, clean, care for a home, care for a pet, shop, work in the yard, socialize, decorate my home, hold employment, care for my newborn and toddler grandchildren, give gifts, send cards, backpack, long-distance hike, and the list goes on. I rarely ever get visitors. I do have a few friends that still check in with me via phone or text, some regularly and others sporadically.
One could say I've lost my identity. But deep in my heart, I don't believe that. Because my identity is not limited to my physical and emotional and mental functions. My identity remains alive in a seed, or perhaps a seed pod. No matter my limitations, I am still Carol with all the changes that life brings--which is true for all living beings.
That said, it was (and still sometimes is) hard to accept that I can no longer do much of what I once did.
Back in 2015, a friend requested information on what I do nutritionally to help with the weakness and pain in my arms. Part of my answer included a powdered food supplement that I buy at distributor cost. I knew I didn't have the energy and wherewithal to help my friend try the product, but I couldn't bring myself to say, "I can't." Instead I said, "I'm not willing," which sounded harsh. But I just couldn't say the word "can't." The saying, "Can't never could," echoed in my brain.
I struggled with this continually--the fact that I "can't." For some things it's not that I literally can't do them, but that if I put my energy into doing certain things it drains me to the point where I have to take time to recover. An example is shopping; when I've done it, I've had to take one to two days to recover.
In 2015 after emailing my friend that I wasn't willing and feeling bad about it, I talked the dilemma over with my husband. My husband responded, "That means you can't. You simply can't do these things without consequence. So that means, you can't."
And he was right.
Eventually I was able to accept the "can't" word without, for the most part, feeling guilty. Someone would not expect one who is blind to be able to grocery shop, at least in the normal matter that others do. Would the blind welcome sight if that came to pass? Certainly. But they can't base their goals and daily life on a someday-maybe possibility.
Grief continues, and still sometimes I drown in it. I wail and cry and shut down. Then when I replay scenarios in my head, fantasizing about explaining what I go through on a daily basis, I realize how very overwhelming it all is. I don't expect anyone to fully grasp the depth of the suffering and the endurance required to navigate. And I am well aware that others struggle with similar disabilities, isolation, loneliness, grief, and processing through it to get up and take on another day of self-care.
And that is where accept and adapt come in...
Then, the gratitude and grit...
Gratitude for breath, for a husband who, even though he's not around much due to his employment, chops my celery and apples and peppers for salad, does the laundry, grocery shops, and knobbles my back. He used to help me bathe and dress, but I'm now able to those things without supervision. And I'm thankful for my family and the few close friends I'm still in touch with. I'm thankful I can still drive, and (drum roll) that I can again ride my bicycle.
The grit comes with living and navigating through all the above...
Like with cycling. It's hard work. The hardest part is the prep and the after-ride tasks. The actual cycling itself usually brings me a feeling of freedom--freedom from the concentrated effort required for other motor movements.
I never have a day off; my self-care duties are not negotiable if I want to continue to be able to partially function and even gain some improvements, however small they may seem.
One of my favorite movies as a youth was the 1969 film True Grit. I was 10, and horses were my life. When I first saw the movie, my companion was a black Welsh pony whom I had named Black Eagle. Mattie's horse was Little Blacky; I felt a kinship.
