Spring 1980 I was in rehearsal for the April Ballet performances. Tuesday April
15 I visited the HMO Gynecologist and was apparently feeling well. Shortly
thereafter the skin on the right side of my neck began to burn. On Tuesday April
22 I reported to another HMO Doctor that I had fallen ill with a sore throat 3
days previous. (A particularly nasty virus had been circulating in the ballet
company over the past month). The Doctor told me I had a virus which would go away.
Minor Mistake: Thursday April 24 I underwent a pelvic sonogram ordered by the gynecologist because of persistent lower right quadrant pains. I had the impression that the technician saw something, but the Doctor signaled to her to say nothing. I did not learn of the results until 1996 after moving to France where the problem was treated correctly. (That is to say the HMO didn’t inform me there might be a problem and didn’t treat it at all. That is another story, though the chronic irritation and pain certainly contributed to my poor health over the following 16 years.) I don’t remember being particularly ill that day. I suspect the Sonogram worsened my health situation since I am exceptionally sensitive to the slightest disturbance.
I began to experience weakness, numbness and tingling in the right arm, neck and
shoulder. An irritating pins and needles sensation developed as though the
blood circulation had been cut off. The right side of my torso felt cold and clammy, spongy and waterlogged. Then I began to drop things from my right hand. I didn’t stop to rest, we were rehearsing and a good trooper didn’t quit. I became feverish and terribly weak. During the Saturday morning pre-performance class it became clear I had lost control of my right arm. I could raise it overhead but once there I didn’t know where it was or what my fingers were doing. I was told they waved about oddly. Worse, I had begun to experience coordination problems in my legs.
Nonetheless I performed tolerably well on Saturday April 26. My last performance April 27 was a near disaster. In one day the paralysis had seriously weakened my legs. It was a Sunday matinee and my husband couldn’t fetch me so I took the bus home. A kind gentleman helped me off the bus because I couldn’t steady myself with my right arm.
The performance season over, I thought I could relax and recover especially since I had recovered from the sore throat virus. Though my symptoms seemed bizarre, I more or less ignored them and kept going. I watched in amazement as my right arm deteriorated as though it were a foreign object attached to my body. If I extended it before me and closed my eyes I found on reopening them that the arm had moved up or down or sideways, the hand usually having dropped without my knowledge or volition. In time I couldn’t use the right hand at all, it curled up useless at my
side and was a source of acute embarrassment. I am left handed and could continue to write, but practical tasks became impossible. And too there was the discomfort of the nervous system run wild. My arm was all pins and
needles, the skin on my right neck burned fiercely while the right side of my torso remained cold and clammy. Gradually the pins and needles rritation developed in my legs. I tried my best to ignore the symptoms in the belief they would subside once the “brain virus” had run its course. I was run down and tired, but not so tired that I had to remain in bed all day. I drove to a friend’s house, we laughed a bit at the anarchy which seemed to have taken over my body.
I had scheduled a meeting for Tuesday April 29 with the residents across the
street to help them deal with the conversion of their apartments to
Condominiums. Since my successful appearance blocking 2 abusive conversions at
City Hall the year previous I was seen as an “expert” by tenants in
spite of myself. My weak dysfunctional right hand embarressed me, the sherry the
piano professor offered irritated my nerves, wrapping me even tighter in the
cold clammy shroud of my skin. This time the Conversion application was handled
according to proper legal procedures, but tenant protections at the time were
pretty thin. And while the owner had prepared his “attack” in advance with
the help of a lawyer, the tenants naturally found themselves caught short.
They didn’t know the law, what their rights were, and were faced with
having to hire their own lawyer which in the USA gets expensive. Again they
were being evicted to make way for building“renovation”. The evening of the
meeting I was shaky and wondered how I could keep going. My body had
begun to alternate between a bizarre burning in some parts, cold and spongy
in the torso, pins and needles throughout, and my walking was labored.
The day following April 30 I typed a letter for the apartment complex residents with my left hand since the right was now useless. Towards 5:30 p.m. just as I finished my task with the pleasure of a job well done, there came a knock at the door. I opened it to have a 30 day eviction notice thrust into my hand by the landlord’s son. I was
shocked, upset, “stressed” and furious. A better located apartment had been
vacated the month before and the owner’s son could have taken it rather
than evict us from ours.
However, it was in the end a godsend for me.
That evening my husband Jacques and I decided to buy a house which we
should have done years earlier before prices began to skyrocket.
We would have to delay the eviction until we could buy a house and move.
We visited a tenants rights lawyer the next day. I don’t remember being
particularly sick when we walked into Sarge Holtzman’s office on Haight
Street. It was a beautiful sunny San Francisco May day. I extended my hand
to shake his. My husband said I shouldn’t have, it was like handing someone
a dead squid. Mr. Holtzman advised us we could delay the eviction for 2 to
6 months through legal maneouvering after which the sheriff would post a
notice on the door as a prelude to the actual eviction. He suggested we
persuade the landlord to give us time to find a house in order to avoid any
further unpleasantness. In any case we could stall the eviction to give us time.
The image of the sheriff posting an eviction notice on
our door sent me into a stress attack. (In retrospect I ask myself why I
didn’t leave the problem for Jacques to solve and myself concentrate on my
recovery. But that isn’t how things worked with us. Finding a
house, ordering boxes, moving, all the endless details rose up
as unsurmountable obstacles before me given my weakened condition. Jacques seemed oblivious to what was happening to me.) The stress precipitated a crisis.
My spine in the upper back burned terribly which seemed to trigger off the
pins and needles sensation in my good left hand and elbow. That evening as
my spine and neck and legs burned painfully and I began to lose my left
hand and arm I wept. I didn’t know what was happening to me and feared the
worst. Jacques called the HMO emergency and the Doctor asked to speak with
me. I described my symptoms and he recommended I come to the emergency
room. At the hospital I was given a spinal tap which was negative. They
apparently were looking for meningitis. The Doctor sent me home after
recommending rest, vitamins, gradually increased exercise and a visit with
a Neurologist. He thought the problem would eventually go away.
I was laid low the next few days with a horrendous headache just as the
Doctor had warned. A heavy weight on the top of my skull seemed to
crush the brain tissue if I tried to rise from a horizontal position. The
symptoms in my left hand subsided. It was as though I willed the symptoms
out of my left hand into my right which by now curled up useless at my side.
Tuesday May 6 I obtained an emergency appointment with the Neurologist while he was doing his Hospital rounds. A friend drove me there, I felt and looked like death, though I believe it was more the spinal tap which had laid me low than the MS. (I had already been treated by the Neurologist for migraine (or tension?) headaches. This seems an appropriate prelude, since migraines also involve brain/blood/fluid
circulation) He seemed dazzled by a pretty young female Resident who was accompanying him on
his rounds and he hardly examined me at all. He told me I was having muscle
spasms, writers cramp and needed to relax (ignoring my comment that I
write with my left hand.) I left discouraged and once home went straight to bed.
That same week my husband called the landlord to say I was ill, that we intended to buy a house and would leave as soon as possible. Mr. Lee agreed and Jacques delivered the rent check to the landlord who lived downstairs. The next day as I lay in a stupor another knock came at the door. I dragged myself to open it only to have another letter rudely shoved into my hand by the landlord’s son. I opened it to find my husband’s rent check and a notice that the eviction was still in effect. Furious I raged downstairs to knock at the landlord’s door. Mr. Lee looked defensive
and a bit upset. (I had always negotiated directly with him in an amiable
way.) I asked them (Mr. Lee and his son) what they were doing, we had
agreed to leave, we would leave, we just needed more time. “I’m sick” I said “My hand doesn’t work.” The son glared at me “What’s this paralysis story you’ve made up” he sneered. I showed them my hand. They began to close the door on me when, enraged, I pushed it open with my good hand. They fell back, stunned.
“Why didn’t you take the apartment that came available last month, why not last summer when you were talking about it?”
I insisted in anger. The color left the son’s face since he realized I had
been talking to another tenant. They insisted they must go, but with less confidence
than before. I returned shaking to my apartment 2 flights up, and collapsed into
bed.That evening Jacques asked the landlord if he could send the rent check and
he agreed, thus leaving us time to move in an orderly way. However, all the stress, anxiety, and the supreme effort of leaving my bed to confront the landlord had left me totally spent.
In order to relax (per Doctor’s orders!) I decided to get a Shiatsu massage at the Kabuki Hot Springs on Friday May 9.
Though I didn't realze it for over 30 years, this would prove a turning point in this first MS crisis..