By Rosalee Simon
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
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
“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.