I went to bed on St Patrick’s Day 2023 in a rosy glow after spending the evening with good friends. When I woke up the next morning, I thought I was drunk.

I couldn’t walk straight, my hearing was off, and as I discovered when I drove my car, my thinking was off. “This red sign I think means stop. How do I do that? These cars coming at me from the right, do they stop?” And so much noise, some of it inside my own head. I could barely follow a conversation, let alone read or watch a movie.

After several days, I called my primary care physician, who urged me to go right to an urgent care since I was out of town.

The doctor immediately said, ‘You’re in A-fib’ and hauled in equipment for an EKG. Then he told me to go to the hospital emergency room across the street. I was offered an ambulance, but declined. Come on, across the street? I thought. But then I wondered if I could make it down the sidewalk. As I slowly stumbled in the ER door, the medical staff hustled me in and did all the usual: Hooked me up with sensors, drew fluids, took scans, rolled me out for tests and back.

Finally the diagnosing physician declared, “There’s nothing wrong with you.”

I don’t think I imagined dismissiveness in his voice. Old lady. Unsteady on her feet. Muffled hearing. Fuzzy thinking.

Welcome to old age? No! At 71, I wasn’t prepared to be dismissed so cavalierly.

Volunteer Work – Spring 2022

I had spent decades dynamically aging. I was physically active, building social relationships, improving my diet, meditating, practicing mindfulness, making sure I got quality sleep, managed stress, and kept my weight in a healthy range.

I had always felt good. Actually, I felt great. I had lived an active and healthy life. I decided I just needed to power through whatever this was. So even though I still felt unstable on my feet, I decided to visit an out-of-town friend and go hiking. Then I fell down and injured my ankle. Unfortunately, I erroneously thought it was just sprained. So I iced and elevated it and drove 1,000 miles home to see my own doctor.

My doctor diagnosed the fracture and put me in an ankle boot. But even though the focus was on my fracture and the boot, I knew underneath something else was wrong. Very wrong.

I was working too hard to be normal. I noticed a slurring in my speech, a tremor in my hand. Overnight, my handwriting started to mimic that of an old woman. I could manage driving because the ankle boot was on my left foot. But when I drove, my hearing felt like a sound tunnel.

I found myself on a medical hamster wheel, with medical test after test, but no answers.

Hiking in Sawtooth Mountains, Idaho – Fall 2022

At a Buddhist retreat I attended, I desperately tried to act normal. But I could barely hear the speaker and I felt profoundly disoriented and fearful. I was crying a lot. One of the nurse practitioners at one of my many appointments used the word “ataxia,” which describes a collection of symptoms that can have a variety of causes. Still no diagnosis. There is nothing more frightening than the unknown.

It was spring and I struggled to do yard work, plant a garden, mow, weed. The ankle healed and I ditched the ankle boot. I started using a cane and I quit driving because I couldn’t trust my leg to lift off the gas pedal. But now it was obvious this was way beyond a fractured ankle. I went for MRI’s, vestibular therapy, evaluations. Sick of everything, I decided to visit my sister. But I was afraid to fly – what if I couldn’t handle the distances required to transverse? I ordered a wheelchair at every gate. I had my cane. I did it.

My sister and I made good food together, went out for lunch and laughed. We took short walks because my leg would give out and my foot would start to drag. I did physical therapy exercises. I rested. And I started feeling stronger.

When I returned home, I tested myself driving and it seemed fine, and I avoided traffic.

Hiking in Arizona just before MS episode

My primary physician, through process of elimination, called it a stroke. So I read My Stroke of Insight, by Jill Bolte Taylor. I started to feel grounded, like I had a direction, a plan, a course of action, and the possibility of improvement. I wasn’t heading towards permanent and incurable disability. My daughter visited, bringing cheeriness, support, hope.

Then there were more tests.

Because my suicide screening tests had gone steadily downhill since the whole thing started, eventually I had been referred to a therapist, even though I had started feeling a bit better. I cried the whole time. It had been months since the first symptoms appeared and still no diagnosis.

The next day a friend and I went to a loud, hot, crowded food festival, walking a mile to and from where we parked. I ended up in the ER the following day.

I’ve always been energetic and strong. It was challenging to admit that it just wasn’t there anymore. I had to say no to things I would have done before. Before. I so much just wanted to be the person I was before.

I had another MRI. Then another. My neurologist said something was off and was unwilling to sign off on a stroke. Then, on July 5th, he called with a diagnosis. Multiple sclerosis. I would have to wait three weeks to find out what that meant.

I stayed distracted with loving friends and family visits. But inside my head, I was freaking out.

Multiple sclerosis.

MS is an incurable degenerative neurological disease resulting in disability. My symptoms came on in mid-March and here it was July. Finally, my appointment with my neurologist gave me solid information. I have relapsing/remitting MS, not progressive MS. Researching and reading, I developed a plan. The cause of MS is unknown and there is no cure. But there is medication that can reduce the likelihood of relapse.

My neurologist said that I have had MS for years, possibly decades. My theory is decades of healthy living perhaps prevented an outbreak of symptoms, and perhaps is also responsible for the extent to which I have bounced back.

With brother, Thanksgiving 2023 – 4 months after diagnosis

There are still things I cannot do at this point and I don’t know if I will be able to do in the future. Long walks and hiking in the mountains has been one of my lifelong loves, but now I can only walk about a mile at a time and I need my cane towards the end. Grieving the very real things I have lost or experienced is an authentic response to trauma and I give myself permission for that. I will not attempt to placate my soul by saying “Other people have it much worse.”

But they do, of course,

This experience has brought into focus that everyone deals with pain, loss, illness, trauma –– it is the human experience, so I look into the causes of suffering, and honor it. I stopped giving any energy to my part-time retirement business of home organizing because I don’t have the band width or the energy. I dropped my volunteer activities because I realize I can’t do them. My job is to take care of myself. And this pushes every button I’ve got, such as:

“You’re not doing enough.”

“You’re not worth it.”

“You must accomplish something, achieve something, get something done in order to take up space on the planet.”

I was so preoccupied for so long that I became sick of myself, sick of thinking about MS. I had lost my joy for life. It was my first thought when I awoke in the morning and my last thought before sleep.

It’s been nine months since my first incident and I am beginning to find pleasure again. I count myself lucky. I drove to the nearby pond on a recent hot day and walked into the cold water, porpoising around and floating on my back. I looked up at the expanse of sky overhead, rimmed with the foliage of trees and realized I was feeling joy.

Aging is like childbirth. You can choose the kind of birth you want and prepare for it. But when you go into labor, you realize you are not in control. We can prepare for the aging scenario we want but sometimes shit happens. We realize that we cannot control events, we can only control our response. So many of us, as we age, are lucky enough to start a business, travel to exotic locations, fall in love again. But my job – and my only job right now – is to take care of myself. To take care of my space. Take care of my relationships.

Period.

For now.