It was June 1994 when the Mayo Clinic officially diagnosed me as having a combination of Systemic Lupus and Multiple Sclerosis. How lucky could I get? I was wheelchair bound, lived alone and worked out of my house. I had help during the day with cooking, cleaning and personal hygiene. My house was designed with me in mind, a ranch with no steps, wide hallways and doors and a roll-in shower. I drove a minivan equipped with a lift and hand controls allowing me to be independent and did some volunteer work, teaching senior citizens how to use personal computers. Attending classes at the local college and enjoying movies kept me fairly active and I was only limited by my wheelchair and my need for lots of rest.
Having been in and out of hospitals a good part of my life, I guess you could call me a professional patient. I knew more about my diseases than most doctors. In October 1999, I was hospitalized suffering from a stomach ailment that was both painful and preventing me from eating. My doctors were trying desperately to figure out what was wrong and how to treat it but, so far, the answer had eluded them. I’d always been an optimist, but now I wasn’t very optimistic and wasn’t so sure I’d survive. Not knowing what else to do, my doctors transferred me to a rehab center.
As far as rehab centers go, this one was considered one of the best. It provided a place for patients, who had been ill and were now in weakened condition, to get back their strength and stamina. On the wards, patients were expected to dress daily, with the assistance of an occupational therapist, and participate in physical therapy sessions, up to four times a day. All this was extremely helpful in getting patients ready to return home.
However, in my case I was still acutely ill and unable to eat. I didn’t want to dress myself and was much too weak to participate in physical therapy. I shared a room with an elderly woman who demanded lots of attention from everyone, including me, and turned on the lights at all hours of the night.
So, I wasn’t eating; I wasn’t sleeping; I wasn’t participating in physical therapy. Exactly what was I doing there? All I really wanted was to go home and sleep. Of course, I couldn’t go home alone; I needed someone to care for me. So the social worker arranged for me to interview three women for the position of live-in caregiver. I don’t remember much about the first two women, but the third woman was unforgettable.
Her name was Emma. She was 5’ 8” but seemed a lot taller. She was a mountain climber, muscular and unbelievable strong with short wavy blond hair and light blue eyes. She came from Lithuania, spoke excellent English and read voraciously. She was stubborn and headstrong and had her own way of doing things, her way always being “the right way.” She’d a healthy dislike for medicine in general and doctors in particular, feeling medication was an unnecessary addition to proper diet and exercise, herbal supplements and meditation. Emma wasn’t much of a housekeeper or cook, but had a terrific sense of humor and kept me laughing even during my darkest days.
So the next day, Emma and I went home. Things were difficult at first and we didn’t see eye to eye. Emma was dogmatic and sure of herself and I, used to living alone, wanted things done my way. It took awhile for a meeting of the minds but, after some time, Emma mellowed and I decided I had enough to worry about without needing to be in control all the time.
“I’m not going to make it” I’d tell Emma. “I’m going to die!”
“Not while I’m here you’re not,” she’d reply. “Just change your attitude and everything will be all right.”
“Change your attitude” was a phrase my Dad would always use. He would say it was part of his “poor man’s philosophy.” I was hearing the same words from Emma. Was it really possible to change my attitude? Could I will myself to get better? Medical science hadn’t done a very good job for me so far. Now, I thought, I’d try another approach. I’d try Emma’s approach.
Emma would coax me to eat several small meals throughout the day, even if those meals only consisted of a couple of crackers and a cup of green tea. “Green tea is the best,” she’d say. “It has healing properties.” Little by little, I began to eat.
Emma would help me perform range of motion exercises so I’d remain flexible and, slowly, I got some of my strength back. She was very patient. She gave me terrific massages with special “healing” oil that came from who knows where. Of course, I’d smell like peanuts for the rest of the day but that was a small price to pay for such luxury. My circulation improved. She saw that I got plenty of rest and fresh air. We would go “walking” through the neighborhood at least twice a day. She taught me the proper way to breathe, increasing my oxygen intake and when done right, I felt heady and dizzy all at the same time.
Emma had her own philosophy regarding diet, including never eating starch with protein, cutting out all bread products and never, never eating anything that contained vinegar. Sandwiches were definitely out! I’m sure that her choices weren’t based on any medically approved dietary study because she’d change her mind from time to time, keeping things interesting. She’d state her latest dietary ideas with such conviction that it was apparent she was trying desperately to help. She was trying to find something that would make a difference, something that would make me better. I don’t know if she ever knew it or not but she was that something.
Meditation was an important part of Emma’s therapy. She’d have me relax, breathe deeply and evenly, and try to rid myself of all stress and tension. Then Emma would help me visualize my illness, concentrating on each part of my body. I would imagine that a bright, white, “healing” light was shining on me, making me feel better, giving me strength and inner peace. After awhile, I began to feel better.
Everything seems exaggerated at night. Worries are more pronounced, problems become unsolvable, and pain gets worse. In the early morning hours, I’d cry quietly to myself. At first I was afraid I was going to die, and then I was afraid I was going to live. That’s when Emma would come silently into my room to comfort me. And even though she was partially hard of hearing, she’d always know when I needed her. She’d massage my back and shoulders and tell me to have “faith in myself, that healing comes from within”. She’d hold me in her arms so I could fight the fear that I would never again be well. She’d stay with me so I wouldn’t feel alone and isolated. She convinced me, beyond all doubt, that I had the power to heal myself, and so, I did.
After three months I was fully recovered. I began to take part in my life again and went back to doing all the things I loved. Emma returned to her family in Lithuania. I love and miss her more than she will ever know. I will always be grateful for her care, her love and my life.
Rosalee Simon wrote “Emma” after she was diagnosed with a combination of Systemic Lupus and Multiple Sclerosis. A few years later, she was confined to a wheelchair. Rosalee told us that her caregiver Emma “not only helped my body to heal but my spirit as well. With her by my side, I fought the fear and isolation that is so much a part of being ill. I will never forget her dedication as a caregiver or her commitment as a good friend.”
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