Patient Stories

From early adolescence, I knew that my destiny in life was to be an independent woman. As a child of the Fifties, that meant, for me, not being dependent on a man for my livelihood or my definition of self. My first summer job was at 14 years old, and I left home for college at age 17. After graduation, I travelled to Europe on my own at 22. At age 25, I left my family home for my first apartment and began a career in social services that spanned nearly 40 years. At age 39, I purchased a condo that became my permanent home. On July 1, 2008, at the age of 64, I retired from my job to enjoy the fruits of my labors and indeed I did. I read, took long walks, visited with friends, traveled and seriously pursued my interest in photography. I did what I wanted, when I wanted and how I wanted. I was in charge of my life. I answered to no one. I had earned it and I was enjoying every moment. I had decided that when I “grew up” I wanted to be a life-long learner and a life-long explorer. I had become just that.

Along with independence, I also enjoyed good health. Throughout my adult life, I had never been in the hospital, never been in an ambulance, never been to the ER, never broken a bone, never had more than routine medical tests, rarely took more than an aspirin and almost never had so much as a cold. I ate well, exercised, did not smoke or drink alcohol, got enough sleep and kept stress to a minimum. I did all the “right” things and prided myself on having the protection of a competent and efficient immune system.

All that changed in the summer of 2010. On July 2, 2010, I had dinner with some very dear childhood friends. It was a wonderful evening although I was experiencing some back pain, different from any back pain I had ever felt before. The following night, my heart was beating faster than usual and my stomach wasn’t right. I didn’t feel like staying home on July 4th so I accepted an invitation to a barbeque. I found a comfortable chair and I ate carefully. When I got home, I was tired and took a nap. When I awoke, I did not feel rested and my heart continued to beat too fast. So I drove myself to the emergency room where they tested my heart, kept me overnight for observation and sent me home with a healthy heart and a clean bill of health. That was my first trip to the ER and the beginning of a life-changing adventure into the world of health care and an eventual diagnosis of CIDP. Suddenly and without warning, my competent and efficient immune system went into overdrive and I was very sick. My body had betrayed me.

Over the next eight months, I had many medical tests. I also had surgery to repair a broken leg (the result of a fall from increasing muscle weakness), surgical removal of an abscess due to medication, and I cycled between hospitals and rehabilitation centers, both acute and sub-acute. Transportation was always by ambulance because by this time I could not walk. I worked hard in therapy but progress was slow or not at all. And there were setbacks as medications were adjusted. There was little I could do for myself. Basically, I required total care. The loss of modesty and dignity were bad enough, but the loss of control was the worst. Practically overnight, I had gone from total independence to nearly total dependence. It was humiliating. It was awful.

My family had wanted me to go home with home care, but I didn’t feel ready. It frightened me not to have doctors, nurses and aides awake and available at night. I needed to be rolled in the bed at night, required diaper changes for bowel accidents and sometimes had problems with the catheter. Two people had to move me in and out of bed using a Hoyer lift. I could not imagine how this could be accomplished at home, and I did not want my beautiful and newly decorated condo to look like a hospital filled with medical equipment. Going to therapy was the best part of the day. The therapists were upbeat and I enjoyed the energy and camaraderie of the other patients. As luck would have it, I began to feel healthier at around the time that Medicare was running out. Although I had long-term care insurance, I still had to pay privately for a while which was very costly. I also noticed that as a private pay, I got less attentive care and less therapy. It was time to go home.

Coordinating such a move was way too confusing for me so I hired a private care manager. This turned out to be a very smart move as there were many behind the scenes tasks to accomplish as well as working with the in-house social service staff. After extensive planning, I came home in an ambulance seated in a motorized wheelchair. The apartment was filled with people and equipment, and furniture had either been moved or placed in storage to accommodate wheelchair accessibility and to make room for a live-in home health aide. My care manager, Doreen, accompanied me home from the care center and we were met by her boss, Stacey. Annette, the home care nurse manager, was also there. They were all tall women and filled the living space with their physical presence. Their voices seemed loud to me and it sounded like they were all talking at once. As I looked past them and through them, I saw in the corner of the dining room a small Indian woman from Guyana named Eunice, who was to become my aide and companion. Our eyes met and we began to size each other up. I saw my reflection in her eyes – nervous, unsure, apprehensive, confused and overwhelmed. I saw a stranger from another culture and so did she.

After Doreen and Stacey left, Annette and Eunice brought me into my bedroom to help me get settled. Gone was my queen sized bed with its bronze metal headboard, the cream-colored matelassé coverlet and custom-made decorative pillows to match the cream, green and lavender striped bed skirt. All that remained were the custom shades and lavender valences. How out of place they seemed. I had loved decorating that room and was so pleased that I had created such an attractive and peaceful space. Now it was jammed with equipment. In place of my beautiful bed was a twin-sized hospital bed with an overhead bar and a Hoyer lift. I did not want the overhead bar or the Hoyer lift and subsequently had them removed. Fortunately, I had gained enough strength before leaving the care center to transfer from the bed to the chair using a slide board so I never used the lift. But I still needed to be pulled to a sitting position. Later, a commode was added to the mix. My TV and recliner had been moved to the bedroom from the den/office in order to make room for Eunice’s bed. I looked around the room and burst into tears, crying, “This is not my room, this is not my house.” Annette tried to comfort me by reassuring me in a gentle voice that, “Everything will be all right.” I was inconsolable. It hurt too much.

The only rooms that remained the same were the living room and the kitchen. I was unable to sit on the living room furniture as it was too soft for me to get up and down; I could not access my enclosed terrace as it had a step to climb over which I could not do and the galley kitchen was too small for the wheelchair. I was confined to the bedroom and the dining room that now served as an office with my laptop and papers taking up most of the table. The table had been repositioned to accommodate the wheelchair and four of the six chairs were now in storage along with a hand painted chest of drawers. This was not the home I had left. It was the home I returned to and it would take some time to feel like it was my home again.

After Annette left, Eunice set about cleaning the bathroom until it sparkled. I had never seen my bathroom so clean. Then we sat at the table to talk. The first order of business was what to have for dinner. In her soft voice, Eunice quietly and worriedly confessed to me that, “I don’t know how to cook American food.” I thought that was very sweet and I reassured her that, “We’ll do it together.” This was Eunice’s first live-in job and it was her first thought and greatest fear when she first saw me. It was also the first time that I had lived with anyone in forty years. It would be a big adjustment for both of us.

Eunice and I quickly developed a routine and a very special relationship. I got depressed every Friday evening when I knew she was going home, and I got happy again when I heard the door open on Monday mornings and was lifted by her beautiful voice singing religious hymns or funny Caribbean folk songs. She made me laugh, and she very gently pushed me to get better. She exercised with me every day and paid close attention to what the therapists taught me so that she could know what I was trying to accomplish. And she photographed me doing the exercises so that we could remember what I was supposed to be doing. At night we watched TV together in my bedroom, and I came to enjoy watching her enjoy my recliner. I also came to like sharing my bedroom and my life with her. My room was my room again, only different. It was made up of new memories. I often wondered what I had done wrong to be given such a dreadful disease. Eunice helped me understand that I must have done something right to be given the best aide anyone could ever ask for.

Sharing my kitchen took longer. Eunice and I both like to cook and we are both very organized. But we organize differently and use the space differently. My way makes sense to me and her way makes sense to her. We also call things by different names. At first, it became the cause of a lot of frustration and then it became the source of some funny jokes and a private language. Cooking American food also became a challenge for Eunice. We started with the basics – soft cooked eggs and “light and fluffy” scrambled eggs. Eunice was used to hard-cooked eggs and hard-scrambled eggs. She worked at it until she got it just right. We then moved on to canned tomato rice soup. The first effort was a very thick soup as she didn’t know that she was supposed to add water. Eunice is a “little of this, a little of that” kind of cook. It took a while for her to become a “follow the recipe” and “read the instructions” kind of cook. And then there was her dash of pepper vs. my dash of pepper. I screamed, “No” and startled her the first time she showed me a handful of black pepper and called it a dash! Now we work together like a well-oiled machine and have developed a repertoire of many tasty delights, some American and some Caribbean. Our recipes are highly regarded and shared with many friends, hers and mine.

Weekends did not go so well. I was assigned a different aide almost every weekend. Between the hospital, the care centers and home care, I have been attended by so many strangers that I have no accurate count. I do recall one incident at home in which I had developed what was essentially a diaper rash. The home care agency got so nervous that the coordinator assigned round the clock shifts. For one week, I had nine strangers pass through my home who were essentially paid to babysit me. From that experience, I learned the ways of home care and I never let that happen again. I also learned to fire those aides who were inattentive, had bad attitudes, were lazy and who stole from me or tried to scam the agency.

Most of the aides were from Africa or the Caribbean. This meant starting over every weekend not only with new and different personalities, but with cultural and language differences as well. And since I no longer put things away, I could not describe to the aide where a particular item was located. I tried to impress upon the different aides the importance of returning items to the location where they found them, but that didn’t really work. And I had to describe what an ice cream scoop looked like or the difference between a teaspoon and a tablespoon. And then there was the time I asked for cinnamon and got cream of tartar or I asked for cheerios and got bran flakes. This was frustrating to me and to the aides and required more patience on my part than I really wanted to exercise. Eventually, I adjusted. I had no choice.

It took some time, but after a while I developed a team of regulars. In addition to Eunice and Doreen, I added physicians, including one who makes house calls. Dwayne is a nurse who comes to the house to administer IVIG infusions every three weeks and Allan is a physical therapist who comes to the house once a week and meets me at the YMCA pool once a week for aquatic therapy. I almost added a weekend aide to the mix but after eight months I let her go and decided to try weekends alone. I had already tried evenings alone and it was working well.

It is now four years since I became ill with CIDP and just over three years that I have been living with it at home. It is a brutal disease and it is a brutal recovery. Physical therapy has played a major role in my progress. From having no feeling in my legs and feet, from being unable to move my legs or roll over on my own, I am now able feel the floor under my feet so that I can walk with a walker and/or arm crutches. I am able to roll myself over in bed, I am able to get up and down off the floor using the bed rails and I am able to go up and down a few steps. I have gone from diapers to pull-ups to incontinence panties to regular panties with a thin panty liner. I have accomplished all this with PT including specialized physical therapy for bladder retraining. The slide board is in the closet and the commode is in the basement storage unit as I am able to use the walker to walk to the bathroom. Now that I am stronger and more independent in the bathroom and kitchen, I am able to stay alone at night and on weekends. Eunice sets things up for me so that I can heat dinners in the microwave using a paper plate and I can stand long enough to rinse out a cereal bowl and some silverware. I still have to rearrange some things in the kitchen every Saturday morning as Eunice puts them away differently than I do. Now it makes me chuckle. A small price to pay for my new found independence!

Through all of this, I have continued on with my life. I no longer drive or travel and pain is an on-going issue, but I still do enjoy many of the activities that were always important and pleasurable to me. Most relationships with family and friends survived; some did not. And then there are new ones, like Suzette, a nurse who came into my life in the very early stages of my illness and who became my guardian angel and friend. Fortunately, I live near the center of a town that has much to offer and I can get around on my own with a motorized wheelchair. I can meet friends for lunch or dinner, go shopping, go to the movies or just hang out taking pictures. I make to do lists, work on projects, set goals and feel good when I accomplish them. I also manage my home and pay bills using on-line resources. And Facebook and e-mail make keeping in touch easier.

Never did I ask, “Why me?” because the answer is simple, “Why not me?” I’ve accepted my condition, but sometimes I still feel like this is an out of body experience, that I am watching this happen to someone else, especially since I don’t look like me from the side effects of medication. So I created a new persona. I always liked jewelry, but I was no longer able to wear my good rings and necklaces due to the swelling in my fingers and neck. In my travels around town, I found two stores that sell inexpensive, attractive stretch rings and bracelets as well as adjustable necklaces. I also found colorful fascinators and sparkly headbands. Now I wear a lot of big fake bling and tops filled with sequins. Eunice has become my fashion coordinator. Every morning, she helps me select my outfit and coordinate my jewelry. I also paint my nails bright colors and Eunice paints designs on top of the color. I have become known for this look and people stop me to inquire where I got my jewelry and hats and who does my nails. It’s a totally different look for me. It’s fun!

I still have a long way to go and where it ends up I don’t know. I worry about what I will do when long term care insurance runs out, when Eunice is not able to be with me anymore or if and when I will no longer be able to remain in my home. I am already 70 years old and have many limitations. I try not to dwell on such thoughts as I have learned that life has a way of working out, that people and things come to you when you need them and that somehow I will find a way to make the right things happen for me. I always have and I am not going to let a disability change that.