Mother

“About driving…I want to talk about that,” my mom said, as I settled myself next to her hospital bed in a position to clip her fingernails.

“I can’t drive,” I replied.

“Oh, you can too drive, Sara!”

“Well, yes, I can physically get into our car and drive it but I’ve given up driving because I’m not capable of taking in all the information around me. I have a slow reaction time and confusion.”

“You told me that a long time ago.”

“And it’s still true. My cognitive abilities are impaired and it’s not safe for me to drive.”

“No one can see that though. Other drivers don’t know.”

“I know it!”

“I get it. There was a time when I holed up in my house and didn’t want to drive. What would it take for me to get you to drive to the end of the street and back?”

“That’s not this. I can physically get in the car and I could drive. I’m not nervous or afraid to do that. I still won’t know when I’m not seeing something or making a bad decision because I don’t process all the information because of fibromyalgia.”

My mom just looked at me, no emotion or comment.

Then I got it. “You don’t accept that I have fibromyalgia?” The tears flowed now as it dawned on me what she was really communicating. She doesn’t believe in fibromyalgia so, of course, I don’t have it.

When fibro first started to be discussed widely in the mid 1990’s, I knew my mom was totally skeptical, deciding it was a trendy, catch-all diagnosis for doctors who didn’t know what else to do when someone had mysterious pain. I didn’t understand fibro either and agreed with my mom. I had also begun experiencing a wide variety of seemingly unconnected health issues since the early 1980’s to include tinnitus, high blood pressure at 19, easy bruising, etc.

Forward a decade and I’ve had car wrecks, childbirth, surgeries, and major illness nearly resulting in death. Widespread pain and difficulties have increased and persisted. For the first time, I’m diagnosed by my physician with fibromyalgia. When I googled it the first time, I came across a list of symptoms that described me to a T. I couldn’t believe it! It wasn’t just that I experience a couple items on the list but one after another detailed specific problems I hadn’t even associated with one another. I read the list to my husband and he was surprised at how particularly the symptoms described me.

Since that first diagnosis, I have struggled and suffered while fibro changed my life and my mom has been a firsthand witness. I truly thought she knew now that it was fibro, that she had come along and accepted it as I had. It’s an in-your-face reality for me every fucking day.

I explained to mom that fibro appears to be a situation where a flip gets switched in the amygdala, a primitive structure in the middle of the brain which gives our bodies the “fight, flight or freeze” response when danger is sensed. The body is flooded with stress hormones, over time affecting every part of the body. It’s a disorder of the central nervous system. I reminded her how she’s commented throughout the years that it doesn’t seem like I’m ever able to relax. That’s evidence of fibro.

Didn’t matter.

Over the course of the discussion, she didn’t accept fibro or believe me because, “I just don’t understand it,” “I don’t get it,” “Where does it come from?” “How would it feel if I had it?” Again, I laid out the dysfunction of the central nervous system and how that affects my mind and body. “Well, then that takes me back. What did I do?”

She seems convinced that she knows more about fibromyalgia than I do. It seems easier for her to reject the illness she’s watched unfold and chalk it up to me being a hypochondriac. She’d rather cling to an opinion formed 30 years ago with no real basis than listen to me, trust me, and believe me.

“Something is making you sick. This is not normal.” She sees that but, for some reason, it just cannot be fibro making me sick.

“Your body and mind aren’t in sync.”

“Yes, unfortunately my mind and body are in sync but in a bad way.”

Over and over she’d say, “There’s nothing I can say or do.”

“I don’t need you to say or do anything except that you love me and accept me.”

Over and over, she’d lay there looking at me with zero response.

I asked, “If I was diagnosed with diabetes, would you need to understand how my pancreas is dysfunctioning in order to believe me? Would you need to see proof with blood sugars? What if I was diagnosed with heart disease? Would you need to see the cholesterol numbers and scans to accept it? Would you need to know how and when it started to have compassion for me?” No response.

As far as driving goes, I’ve blown a stopsign I didn’t see. On a right turn, I didn’t see a car coming from the left and missed nailing it by a couple feet. I have involuntary movements of my feet, legs, and hands at times. I experience episodes where I have vertigo, dizziness, and chest pain followed by collapse with no control over my body. Suddenly, my vision will blur as though I’m looking through a thick, vaseline filter and it won’t clear for me no matter how I blink or use eye drops.

So, who wants to go for a ride? Can I take one of your children or grandchildren for a drive?

When I left, she said, “I love you.”

I turned my walker so I was facing her and said, “I love you, too. You can call or text me anytime.”

I am shattered.