Having built a career as an occupational therapist in London and then Chicago, Janet R. Douglas’s life was turned upside down after suffering a massive stroke. It resulted in her spending the next decade overcoming physical and mental challenges to become a new version of herself.

From her experiences the book, A Wonderful Stroke of Luck: From Occupational Therapist to Patient and Beyond, was born, detailing the huge impact of a stroke from Janet’s unique dual perspective as both therapist and patient. In her memoirs, she examines the effects of brain damage on personal identity and relationships, and how the noticeable disabilities a stroke causes are only part of the struggle.

The idea of writing such a raw account was a personal challenge for Janet. She remembers: “When the idea of writing a book was first raised, I could neither read nor write normally. It took almost a decade of therapy to be strong enough physically and mentally to take on the challenge.”

Here, NR Times shares an excerpt from her work. This passage features Janet and a small cast of healthcare workers…

 

 

One topic that occupied a great deal of my mental capacity was food, in particular, scrambled eggs. I don’t like eggs. This is an aversion born of surfeit. Growing up as I did, during a time of food rationing in the aftermath of the Second World War, our diet had to be supplemented by anything that could be produced at home.

We had chickens, kept in a coop made of wood, corrugated iron and of course, chicken wire, at the top of our garden. Every spring, twelve day-old chicks, yellow and fluffy and no bigger than a sparrow, travelled by train and truck to our house defying all odds, to enter a cycle of eating, laying and being eaten. These chickens produced enough eggs to feed not only our family of six but several neighbouring families as well.

As a consequence of our good fortune, we had eggs just about every day. We had soft boiled eggs with toast soldiers, fried eggs, egg sandwiches, hard boiled eggs, poached eggs, pickled eggs, coddled eggs, scrambled eggs, omelettes, and for dessert, egg custard. When the hens stopped laying, had an accident or got into a fight, we ate them. I’m not overly fond of chicken either.

Breakfast was served in the rehab patient’s room. On my first evening, an aide brought the menu for me to select breakfast, lunch and dinner for the following day. The menu was attached to a clipboard and was hard to manoevre with one hand. It was also hard to read when your brain didn’t understand what your eye was seeing and a large chunk of the page was missing.

After a struggle, I managed to circle what I thought was toast, for my breakfast. Next day, breakfast arrived on a tray, a plate covered by one of those stainless steel warmers with a hole in the middle. The food service attendant lifted the lid with a great flourish and revealed scrambled eggs! “That’s not what I ordered,” I said. “It is,” she replied. I ate the toast, put the cover back on the eggs and pushed them away.

The transporter came to get me for physical therapy and the incident was forgotten. At lunch time, once again what was on my tray was not what I had ordered. The next day the same thing happened at breakfast – scrambled eggs again! I was angry! “This is not what I ordered,” I barked. “Yes it is!” came the stern reply. I hate this place! The food was bad enough to begin with and they couldn’t even get your order right.

I began to keep count of the number of wrong breakfasts, making a mark on the edge of my bed table with the pen that is always lying there. On the twelfth day of scrambled eggs, I demanded to see the food service supervisor. She arrived as I returned from my third or fourth therapy session of the day. Her name was Ella and I knew her from my days of working at the hospital. A capacious, comforting yet commanding African American lady, she is the one who will solve my problem.

“What’s wrong, honey?” she asked. “Ella,” I whined, “I’ve been here for many days and my order has been messed up every single day. They keep bringing me scrambled eggs and I hate scrambled eggs, I would never order them.”  I heard the childish petulance in my own slurred words but was too mad about the eggs to be embarrassed. Ella was reassuring and told me it won’t happen again. I should just fill out my menu and they’ll
bring me whatever I order.

Later, my rehab nurse came to tell me that I was fit enough to join the other patients in the day room and my breakfast will be served there from now on. Linda, the occupational therapist came, as usual, to help me through what is euphemistically labeled “activities of daily living”. It should be called atrocities of daily living. It involved going to the bathroom first.    Linda helped me transfer from the wheelchair to the bed. This involved a hop, a skip and a lunge, sometimes making it to the bed, other times falling short and landing back in the wheelchair.

A couple of times, I missed altogether and landed on the floor.  Once on the bed, the struggle to get into my clothes began. The first few days in rehab, I declined to get dressed in my own clothes, choosing instead to go to PT wearing two hospital gowns, one on forward and the other backwards. I was alert enough to realise that indecent exposure could result from wearing just one. From this point on, not only did I not get breakfast in bed, but I had to get dressed to go to PT.

Linda came the next morning and asked what clothes I would like to wear.  My choice was limited to one of two sweat-suits brought from home. I chose the purple one. After a torturous visit to the bathroom and having completed the herculean task of getting myself back on the bed, I lay on my back, hanging from the ceiling and struggled to wind a leg that wasn’t there into pants that had something seriously wrong with them.

By something wrong, I mean there is no opening for a second leg, even if I had one. To make matters worse, my catheter kept getting caught and yanked, producing an agonising pain. This exercise should be classified as torture.  People have been prosecuted for less. Finally, after much grunting, groaning and gyrating, my lower half was clad. Linda showed me how to fasten my bra and put it over my head.

I knew the drill: affected side in first, affected side out first. That assumes one has an affected side. I have no side at all. I battled to get the unruly, uncooperative appendage through the aperture that Linda has created above my head. It won’t go. After about twenty tries, I’m exhausted, slick from perspiration and completely stuck. I don’t know whether to laugh or cry. I’m on the edge of hysteria.

Linda gives me a look and in an instant, we opt for laughter. She took pity on me and helped me finish getting my clothes on. I’m resplendent in the sweat-suit that the girls have brought from home. It’s very rumpled and has a few cat hairs on it.  Now it’s time for the brace and shoes. Linda hands me the brace and patiently showed me how to lift up my affected leg with my unaffected hand. We are very careful not to say ‘bad leg’ or ‘good arm’. We are scrupulously non-judgmental about deadbeat appendages.

After a half a dozen tries at snaking the foot into the brace, I feel my blood pressure increasing along with my frustration level. At the point that my AFO was about to become a UFO, Linda once again intervened. “You’ve done enough for one day. Good work. Tomorrow is another day.”

I was finally ready to go to breakfast. Around the large table were several patients in varying states of disrepair. Some were dressed, albeit in a haphazard fashion, some were in hospital gowns. A couple of my table mates didn’t seem to be aware of their surroundings and quite a few were wearing at least part of their breakfast on their face or down their front. I was acutely aware of the state of other people in the room but painfully unaware of myself as I pushed up to the table.

There was a place setting and a plate with the inevitable stainless steel lid. I lifted the lid from my plate and there they were again – scrambled eggs! A wave of intense anger surged through me as I slammed the cover back over the eggs.. “I. Didn’t. Order. Eggs!” I said, through clenched teeth. “You must have, food service only brings what is on your menu.” I looked at what else was on the tray. There was an English muffin. “They aren’t English, by the way.” I muttered.  “They are as American as  French toast!” I ate the muffin. I couldn’t get the tin foil off the top of the butter or jelly, so I ate it dry.

I grabbed the carton of orange juice, stabbed the foil top with my fork and slurped it down through the holes. No one offered to help with anything and I vaguely recall that we are supposed to be independent. I’ve been in this room many times before but never to eat breakfast.

As the director of occupational therapy, wearing a starched, white lab coat over street clothes, I had bounced into this room once a week, to face a roomful of stroke patients. In a forty-five minute exercise program I had instructed patients how to lift their affected arm with their unaffected arm, to stretch it above their heads, to swing to one side and then to the other and to march with their legs while seated in a chair. We had pointed our toes, or at least the toes on one foot, made circles with the ankle that moved and shrugged a shoulder or two to loud music emanating from an elderly radio in the corner of the room.

I had hated every minute of it, straining not to show that I thought it was an exercise in futility, wanting it to be over so I could get on with the rest of my day. The daily grind continued. Every evening I filled out my menu card or would ask someone else to do it for me. I noticed that when I do it, I get eggs. When someone else does it, I get toast or oatmeal. Clearly this vendetta is personal! They don’t like me. Well, that’s OK because I don’t like them either!

Day after day , I arrived at the day room, having been stuck in the doorway of my room, stuck in the hallway and stuck, again, in the doorway of the day room. The wheelchair really should be replaced. I am a paying patient. I worked here for seven years. I should not be stuck with this worthless piece of junk that will not go in a straight line.

After one particularly trying journey, instead of easing into my place at the table and following my established protocol of ignoring the eggs if they were there, and eating whatever else there was, I issued a proclamation. “If there are scrambled eggs on my plate today, I am throwing them at the wall!”  Absolute silence followed and I soon found myself being wheeled very quickly back to my room. John didn’t come to take me to PT.   “Yay!” The more appropriate response might have been “Uh-oh!”

The psychiatrist arrived before lunch. I had been exhibiting signs of hostility and making threats that could be considered acts of aggression. I have also shown signs of not being in touch with reality. I also seem to be a little “depressed”. He wonders if medication would help.

I wonder why it is that the light at the end of the tunnel must always be powered by a pharmaceutical company. “It’s the stupid medication they are already giving me that is making me act the way I am and if I had a plate of scrambled eggs at hand right now, I’d throw them at you!”

Much later in my recovery I would learn that there was nothing wrong with the wheelchair and no conspiracy to feed me scrambled eggs – I was suffering from visual defects, denial and neglect associated with the stroke and also Anosognosia that convinced me that there was nothing wrong with me.