Adjust
"Small fiber neuropathy is progressive. This will not go away, and you need to think about how you will need to adjust your life." My doctor sat across from me with I-wish-I-had-better-news eyes.
Adjust my life?
Hasn't that already occurred?
My husband and son have had to adjust. How much more adjustment would need to happen?
Apparently, quite a bit.
When we lived in South Carolina, we contemplated a relocation due to our house. It wasn't conducive to someone with neuropathy. Then, when Dad became sick, getting back to Sioux Falls was the priority. We couldn't buy a home in the timeframe we were in, and Phil's company had released him because they suck; we quickly searched for rental homes. The inventory was slim and pricey, but we had no choice. A house conducive to my neuropathy wasn't going to happen.
Besides stairs, my biggest nemesis was the shower—specifically tile floor, glass door, no seat showers. I know that's the thing, but it's murder on my nerves. When I flare up, I can't even shower because the water is like knives in my skin, but when I could, the tile floors sliced into my nerves. Cleaning the glass doors was torture on my fingers and hands. A lovely element of neuropathy is Erythromelalgia. It's an intense, burning pain in affected extremities, severe redness, and increased skin temperature. I call it hot toes or fingers, which is excruciating, especially during a flare.
When we were house hunting this past June, we were determined to find a home that would work for me. Here was the weird part: in my brain, I was still looking for a house Dad could get in and out of. It was always my goal, but his life was ending, and while we were house hunting, we were in the car. Phil took my hand, "We can't look for a house for your Dad. We have to focus on what you need." It was difficult to hear, but he was right.
Oddly enough, I needed pretty much what Dad needed. One level, no stairs, easy to move around, main floor laundry, primary near the living room, and once we visited Sadie (yes, I named our house), I knew.
What grabbed me was the primary bathroom, now I've seen people call this type a shower basic bitch, and you know what, I don't care. This is my perfect neuropathy shower. No tile. No glass. A seat. A sprayer I can control on rough days.
Sign me up!
Main floor laundry.
Basement stairs, but I didn't need to go down them—only three stairs from the garage to get into the house. The primary was right off the kitchen, so when I flared, I didn't have too far to walk, if I could even walk. And if I ever need extra assistance with a cane, walker, or wheelchair, I can get around the main level without issue.
I can maintain some independence in our current house; I always feel horrible needing the boys to help me; it's that stubborn aspect of my DNA.
My diagnosis changed everything.
It's one thing to have specialists hypothesize what is happening to you, and it's another to read it in a report. Biopsies don't lie.
Neuropathy has zero mercy. It doesn't play fair. It's unpredictable; therefore, I am unreliable. Neuropathy is an enigma for many.
My facial neuropathy remains a headscratcher for specialists. Testing is dangerous, especially for my Trigeminal Nerve. A spinal tap was recommended, and that's terrifying.
Adjusting our lives to this unforgiving condition angers me; however, I've learned not to fight against it. I'd rather concede to what helps me than hold tight to my hardheadedness. It's not worth the frustration. I see many moving against the grain because this new life is hard. The pain wears a person down quickly.
All the medications.
All the questions with limited explanations.
All the adjustments.
What Once Was
Death has been a part of my life since I was a child. But my diagnosis was a different type of death. It was the death of who I was, the death of dreams, and a future I thought I knew. Letting go wasn't easy, and I know many who refuse to do so.
I sympathize.
At first, I felt I was giving in, allowing this debilitating condition to win.
Was I weak?
Was I failing?
No.
I was letting that version of me die.
And I'm doing it again.
Those petals are wilting, and it's time to let them fall to the ground and become part of the earth.
Death shows us life.
It shows us the truth.
It's the breath of revival and evolution.
Who Am I?
After my nervous system implosion and after the death of Dad, I didn't recognize who I was in the mirror.
This occurrence is an actual thing; it's Depersonalization. It can consist of a detachment within the self regarding one's mind or body or being a detached observer of oneself. Subjects feel they have changed and that the world has become vague, dreamlike, less real, lacking in significance, or being outside reality while looking in.
I thought I was losing my mind.
I wasn't.
My therapist explained to me what was happening: my trauma and grief were activating my depersonalization. I felt better knowing what it was. Cognitive Behavioral Therapy helps, and I did start that last year for my PTSD.
Here I am, full circle.
Death. Grief. Rebirth.
Rinse. Repeat.
This time, I feel different.
Hopeful.
Purposeful.
The woman in the reflection is beautiful, resilient, defiant, unusual, thoughtful, imaginative, and affectionate, and I do know her, but in a distinct way. She's a tangible echo.
A soul layered in circumstance and difficulties, but remove all that, and she is who she has always been.
Love.