I followed the sales lady over to the counter to finalize my tile purchase for a small bathroom renovation project. I handed her my credit card, and she began filling out paperwork so that my contractor could pick up the tile for me. I decided to sit down on the stool provided while I waited, something I’ve done countless times without thinking about it. This time, however, the wheels spun out from under me, and the stool rolled across the room while I began to fall. I knew from experience that I had no control over what was happening, so the best course of action was to just go down. I landed on my behind first, then my head went back and hit the floor softly. There I was on my back, unhurt as far as I could tell, but unable to get up. I felt like a turtle that needed to be flipped.

“Are you okay?” asked the sales lady as she rushed around the counter.

“I’m okay, but I can’t get up,” I answered. I’m certain she was worried that something was terribly wrong because I don’t appear to be disabled. I am physically fit and had only moments earlier been walking around the store. She began pulling on my arms, trying to raise me up.

“Stop,” I said. “I have a medical problem and I can’t get up that way. I need to roll over first and get on my hands and knees.” She helped me to do that, and I leaned heavily on her. After a few laborious minutes I was able to reach a standing position. It was embarrassing.

Six months ago, I would have been able to catch my balance and remain standing. Six months ago was when everything began to change, although I didn’t notice it at first. I turned seventy-five in October and I felt marvelous. I congratulated myself on my excellent health and my active lifestyle. I retired ten years ago from teaching and moved from New Jersey to sunny Florida to fulfill my dream of living where I would be able to play golf year round. Luckily, my husband had the same dream. We bought a condo in a beautiful golf community and had been happily living our new life there with no second thoughts about our big decision to move south.

In October 2020, the pandemic was in full force, so no big birthday celebration for me. My friends drove by my house in their golf carts, honking their horns and holding up signs wishing me happy birthday. It felt festive enough, considering that was all we could do. While seventy-five is a big birthday that some dread, I greeted it with open arms. I was so grateful to have reached this age and to feel strong and healthy. Never did it occur to me that I would feel any other way. I see golfers in their eighties and nineties who play golf regularly, and some can beat the younger players with their well-developed short games. I assumed I’d be among them. I became hooked on golf in my sixties after tennis began to take a toll on my body. I played golf three to four times a week and practiced at the range for hours. I entered all the local tournaments and usually did well. Golf served my needs for physical activity and mental well-being. Most of my social life revolved around it. Then, suddenly, the distance of my tee shot started to decrease, flying only half as far my normal distance.

This must be the proverbial golf slump, I thought. Happens to everybody. All I need is a few lessons to get back on track. But lessons didn’t help, and more strange things began to happen. One day, without warning, I tried to cross my legs and was astonished to find that I couldn’t lift one leg high enough to get it over the other one. I began adapting to the new limitation, manually lifting one leg over the other, while stepping up my core exercises, thinking that must be the problem. Shortly after that, I was lying on my mat in my living room getting ready to begin my daily stretching routine, and I found I could only raise each leg a few inches off the floor. Previously, I was always able to lift my leg at a right angle to my prone body. I tried some sit-ups and found I couldn’t even do one. After that, every day I noticed more difficulty performing motor skills. Climbing stairs became hard. I couldn’t lift dishes or groceries to put them on shelves. Getting up from a chair, standing up from a squat position, all became impossible.

I had become a weakling over the course of about a month, and my solution was to work out with a vengeance to get my strength back. Maybe it’s some kind of virus, I thought, or maybe it’s just that I’m getting old. I believed that through force of will and perseverance, I would overcome this strange weakness and everything would go back to normal. I had gone from being able to lift eight-pound weights to struggling with only one-pound weights. I was fatigued and lost ten pounds, a huge amount for me. Finally, after weeks of effort, I had to face it: something was really wrong and it wasn’t going to just go away.

I made an appointment for a physical with my general practitioner. He was alarmed and sent me to see a neurologist, a rheumatologist, a gastroenterologist, and a specialist in neuromuscular diseases. Then began the MRIs, the CT scans, and the dreaded electromyogram (think being tasered in certain muscles). The blood tests were within normal ranges except for one, creatine kinase. That test measures levels of muscle enzymes. The normal range is 29–143. My level was 8000, way out of range. All doctors involved said it was indicative of myositis, an inflammatory muscle disease. Then the doctor who was a specialist in muscle diseases ordered one more test. She suspected something else. The extra blood test she ordered was for antibodies. It came back positive, which confirmed her suspicion that I had autoimmune necrotizing myopathy, a rare chronic muscle disease. The word “necrotizing” had nothing but dire associations with death for me. It turned out that I wasn’t dying, but my muscle cells were. My muscle enzymes were attacking my muscle cells and killing them.

I found my disease on the National Organization for Rare Disorders website. Anything affecting 200,000 people or less is considered rare. People of all different ages can get it. Only 0.3 people per 100,000 have this disease. Will anyone notice me when there are so many other diseases affecting so many more people, I feared. There is no known etiology. There is very little information on prognosis other than to say, you can get better, you can get worse, or you can reach a maintenance level where you need to control the disease with medication. Necrotizing myopathy wasn’t differentiated from other forms of myositis until a couple of years ago.

Typical of this disease, I don’t have pain, just severe muscle weakness and fatigue. The disease affects the proximal muscles of the trunk. My legs and arms feel like noodles when I walk, like they’re not firmly attached to my body. I feel wobbly and sway side to side, much different than the determined gait my athletic build and fit self once allowed me to cover ground with. My arms feel like rubber bands with no ability to apply pressure and a tendency to shake when lifting things as light as a mug of coffee.

Getting appointments for the examinations and the blood tests took longer during COVID-19, so it was almost three months before a final diagnosis was made. My doctor wanted me to get the vaccine before I started the immunosuppressant medications because there was conflicting information on how the two would interact. That took another two weeks. Finally, I began treatment with heavy steroids, an immunosuppressive drug, and physical therapy. I’m not improving, but I’m not regressing either. Soon I’ll be starting immunoglobulin infusion treatments and hoping that it will help me regain even more strength.

I walk daily thinking at the very least I’m getting aerobic exercise. The turtle comparison holds truer today more than ever. I walk very slowly, but I do walk. Not a couple of miles, which was standard for me; more like twenty minutes to go around my block. I’m tired after that. Where I live, there are many lakes and sand traps which turtles love, so I usually see at least one on my walk. I observe them trudging along in a manner similar to my new walking style, which is not exactly graceful. I can still go faster than a turtle, though; we’re not neck and neck, but the turtles are gaining on me. I’ve become nervous crossing streets and walking in parking lots since the cars go so much faster than I can move. I fear they don’t expect it to take me so long to get to where I’m going. I’ve seen those squashed turtles in the road, and I can imagine ending up just like that.

Without golf, I knew I needed to develop a new lifestyle. I’ve always been an avid reader, and writing has long been my creative outlet. Now, I set aside time most afternoons to write. And I’m reading all those books I didn’t have time for and starting a book club. I take short walks with friends who don’t mind walking slowly, and I put more effort into meeting them for lunch because I know I have to pay attention to my mental well-being as much as my physical health. I’ve become interested in cooking, too, and I enjoy trying new recipes and techniques. I bought that air fryer everyone’s been talking about, and it’s a new toy for me. I signed up for online writing courses with Joyce Carol Oates and Amy Tan through MasterClass. Last week, I joined an online writing workshop. Surprisingly, I keep busy all day.

For five years, I taught in a special education classroom for first through fourth graders, and then spent twenty-five years as an administrator, designing programs for students of all ages with every type of disability. My special-education training has come flooding back into my consciousness and is also helping me to cope with the limitations inflicted by my illness. The philosophy of special education is to focus on what you can do, not what you can’t. How many times did I preach that to the children and to their parents? There are so many things I can do when I think about it! When I come up against something I now struggle to do, I adapt. For example, I can’t lift a heavy glass of water with one hand, so I use two. I’ve had my husband lower all the adjustable shelves so I can place things on them. I was dropping things like my phone or my iPad until I realized that I need to tighten my grip or use both hands. Fatigue prevents me from exercising daily at the level I would like, but I’m learning to take it slower and rest between exercises. The goal is to complete them at some point during the day, it doesn’t matter what point. I’m less driven now, and taking it slow has relieved stress I was imposing on myself.

On my walks, I pass by the golf courses where I spent so much time. The lush, green fairways, the putting greens rolled as flat as pool table surfaces, the bunkers filled with sparkling white sand all stir up what seem like distant memories. I’d love to be out there again, but I know I haven’t got the strength to hit a ball now. I can putt, but that’s not very interesting when it’s not part of a game. I see my friends out there swinging their clubs and I hear the beautiful click of a golf club striking the ball in the sweet spot. We wave to each other. Someday I’ll be back, I tell myself, but for now, I’m content to walk past my old haunts and accept what is. My golf clubs sit neglected in the garage and my golf clothes hang in their portion of the closet, ignored and lonely. Where are you, they would ask if they could. Wait for me, I’ll be back someday, I hope.

I would like to get back to the person I was before this disease took hold, but if I can’t, this experience has forced me to grow and develop other interests, and I’m grateful. Even if I recover fully, I’ll keep my newly added activities in my life. I like the more well-rounded person I’m becoming. I feel like I’m a more authentic person, too—I do what I really want to do and spend time with people I really want to be with. My life is more varied and more stimulating.

Today, on my daily walk around my block, I spotted a typical box turtle with yellow markings on his dark-green shell crossing the road. Each step seemed like an effort for him. He lifted each clawed foot alternately and pulled his heavy home along. The determined turtle held his head up out of his shell and plodded along, heading for a lake on the other side of the road. He kept his eyes on his goal and didn’t seem to notice me behind him or the herons and ibises daintily stepping along in the grass nearby. Does slow and steady really win the race, I wanted to ask him? Then I realized, he’s not in a race. He’s not competing with a hare or anything else. And neither am I. For now, I’m Turtle Woman, and I’ll get where I’m going eventually, wherever that is.

Benthanie Gorny’s essays and short stories have been published in online and print media. She won first place in the Florida Writer 2019 creative nonfiction contest. She is a retired professor of special education. She loves running book clubs, writing, cooking, and being with friends. She is writing a memoir about being a caregiver.