"Hi Cindy, we got the results of your MRIs, and there were some abnormalities, so Dr. T is referring you to a neurosurgeon..."
This was Friday. On Monday I had had two MRIs done because my left hand has been numb for almost three years, which, having no health insurance before Obamacare, I couldn't afford to do anything about.
In 1995 I was diagnosed with arthritis in my neck, have lived with chronic pain for decades, so the "abnormalities" were completely expected. As I was driving when the call came in, I pulled onto the shoulder, and grabbed a pen and paper so I could write things down.
"What abnormalities, exactly?"
"There is severe deterioration of several cervical vertebra (news I was expecting to hear), and there were anomalies on your brain scan too (news I was not expecting to hear)."
"Excuse me?" My mouth suddenly went dry, and I had difficulty getting the words to come out.
"Yes, I'm not 100% sure what they were, so I cannot be specific, but she's going to refer you to either Dr. S, or Dr. W. When you decide which you're going to see, please give me a call back, and we'll send them the referral."
"How do I know which one to pick?"
"That's for you to decide. Time is of the essence here, so please let me know soon."
They worked in the same office, so she gave me their telephone number and hung up.
I'm a super practical sort of woman, so when things go wonky in my life I kinda go numb, focus on the task at hand, get shit done, then fall apart later. True to form, I sat in my car on the shoulder of I-10 and stared straight ahead, looked for the starting point - choose a neurosurgeon - then wondered who I needed to talk to find out which one to choose.
As if on cue, my phone rang again, and it was my best friend, and business partner, Kim. She could tell by my voice that something was wrong. (I may feel numb on the inside, but my face and my voice give me away every time.) The moment I told her what happened she swung into action. Her mother is a nurse, so she'd ask her about the surgeons, and get right back to me.
That could take some time, and I had to keep busy doing something, anything, productive, so I called the neurosurgeons office. The doctor with the next available appointment that meshed with my schedule was Dr. S. I booked the appointment thinking that if it turned out that Dr W was the best selection I could always reschedule.
Next, I called my ex-husband, Scott. (I really need to find another descriptor for him other than my ex-husband because - while yes, we were married for 23 years, and have been divorced for 9 years - he is so much more than that. He is my partner, my roommate, the father of my children...we are family.) When I heard his voice I felt safe, so some of the numbness melted and my tears flowed.
"It's okay, baby, we'll get through this together like we always do." His gentle voice soothed me as only he could.
Over the course of the day I spoke with family and friends, and got unanimous verification that Dr. S was, indeed, the ideal choice. His office told me that he'd need a copy of the MRIs, and it would be best if I brought them before my appointment, so he could have time to review them.
Friday afternoon, I stopped by the imaging center to pick up the disc, and the lovely receptionist asked me, "Does he need a copy of the report?"
"Absolutely!" His scheduling coordinator had said nothing about getting the written report, but I wanted to see it.
The moment I got into my car, I ripped the envelope open. I sat in the parking lot for almost an hour with the 4 page report in my left hand, cell phone in my right hand, and Googled terms I didn't understand.
"...a few scattered foci of increased FLAIR and T2 signal in the bilateral frontal and periventricular white matter, with one focus of mild increased signal in the posterior left basal ganglia, having the appearance of microangiopathic change. There is mild to moderate cerebral cortical atrophy along the frontoparietal convexity which appears slightly advanced for age..."
There was more. Two pages worth on my brain, and two pages on my spine.
When I broke it down, it looked to me like the TIA (aka mini-stroke) I'd had three years ago was actually a mild to moderate stroke. Nothing "mini" about it. And that I have the bio-markers for Parkinson's Disease and dementia.
What the fuck?!?
My grandmother lived to be 94, but, as she reached an advanced age, had Parkinson's Disease, went blind from macular degeneration, and, at the end, dementia. The gentle, loving woman whose delicate, and deceptively strong hands used to knit at the speed of light, and so deftly french-braid my hair when I was a little girl, shook so badly as she reached an advanced age that she couldn't even sign her own name. I watched her decline with an aching heart, and the thought of following a similar path terrifies the begesus out of me!
I live by the axiom that if you do not look at reality, you cannot take responsibility for it, and if you don't take responsibility for it, you cannot possibly learn, grow, or change it.
So, in this moment, here is my current reality:
- I am a 51 year old female
- With a raging sugar addiction, which is out of control
- My left arm is numb, most probably from the deterioration of three of my cervical vertebra C4, C5, and C6, which are, quite literally, crumbling
- I had a mild stroke three years ago
- I'm having balance issues, and have twisted my right ankle and fallen twice in the past two years, possibly broken one, or both, times but not having insurance, I could not afford to go to a doctor, which means I am probably looking at having surgery to repair
- Memory issues, Gawd, don't get me started on how many times I have a thought only to have it slip away...soooo frustrating and frightening too
- And, at 278 lbs, with a BMI of 41%, am morbidly obese.
Despite the way it sounds, I had always been disgustingly healthy until about three, or four years ago. Then something changed. I cannot put my finger on it, but I felt...different. Like I had crested a hill, of some sort, and was in decline.
Decline? More like free-fall!
I had always been bubbly and vivacious, but my energy has been slowly leaking away. Three decades of obesity has caught up with me in a big way, and my poor body is breaking down.
While I was never a fat child, I've battled obesity since the age of 20. The reasons are complex, and definitely something I've looked at head-on, and found the gift those dark times brought me, but I still have to forgive fully and let it go if I have a hope of turning this train-wreck around.
The numbness descends like a warm, fuzzy blanky. I'll fall apart later, but right now I've got work to do. My mind smooths out, and I look for where to start...
It is the boss - my mind is the one thing I am most proud and appreciative of - and if it breaks down nothing else can get fixed. So, I start with my mind.
I see the neurosurgeon next Monday. Perhaps I'm putting but cart before the horse. Perhaps not. Bio-markers are hardly a diagnosis, are they? Genes are a possibility, not a probability. If I change my course now, can I change my outcome?
There is so much life to be lived, and I am still young enough to change this. I cannot simply slip quietly into disease and dementia. I've got to try!
I'm going to study everything I possibly can on brain health.
I remember seeing a TED Talk last fall by a psychiatrist who said, and I paraphrase, of course, 'You're not stuck with the brain you have. You can change it.'
I'll start there, and find him...