———- Forwarded Message ———-
From: “Mark” <—-@hushmail.com>
To: —-@netzero.net
Subject: Ellice and her CFIDS
Date: Mon, 16 Nov 2009 15:08:11 -0500
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Dear Nina:
This installment is about Ellice once again, and it may serve
to illustrate what I would call, “Boyfriend Behavior in the Face
of Disease.”
Here’s how I met Ellice: My cousin Margot was riding on a
subway train in the very early 1980’s or such, when she noticed a
young woman sitting next to her, and struck up a conversation.
That young woman was Ellice, and she told my cousin that she was
moving to a new apartment, and having all sorts of problems doing
so, why, she couldn’t even find a good locksmith. My cousin, of
course, told Ellice that she knew of a very good locksmith, me!
She gave Ellice my phone number, and later that night told me to
expect Ellice’s call and that I should try to make friends with her.
A few weeks later Ellice called, and I made a series of service
calls to her new apartment to install her locks and gates, at my
usual prices. I saw a bicycle amidst Ellice’s possessions, and I
mentioned that I enjoy bike riding also, why, I even had a tandem
bicycle for two. Ellice said that she had never ridden a
tandem…but would like to. That set the stage for our first date,
but it would have to wait because the temperature outside was 15
degrees Fahrenheit!
During this time, I talked to Ellice on the telephone weekly.
She evidently enjoyed talking to me, and I discovered that she had
many friends, both in her work as a hospital nutritionist, and
outside her job too. She was an avid sportswoman and mountain
climber who, every six months or so, went on one Outward Bound
expedition or another. She also had a boyfriend, a big fellow with
a beard named Steve. I knew that they fought a lot, and apparently
having a boyfriend did not interfere with Ellice having other
friends.
Eventually when the weather warmed, we had our bike ride on my
tandem bike. It was memorable because everyone we passed was
looking at us, and telling us what a lovely couple we made
together. This bothered Ellice, and she began calling out when she
saw people looking at us, “He is not my boyfriend! He is not my
boyfriend!” At one point, while we were stopped at a light, she
got off the bicycle without my noticing, and kept one foot on one
pedal. When the light changed, Ellice pressed down on the pedal,
and off I went, leaving her behind. I did not notice her missing
and kept up the conversation I had been having with her, now one
sided. Two blocks later, stopped for another light at a crowded
bus stop, I wound up the conversation I had been having with
myself, and asked Ellice her opinion. I then turned around, and
she wasn’t there. The crowd at the bus stop pretended that they
didn’t see me talking to myself. I turned around and went back to
find Ellice. She thought it was all very funny.
Steve gave way to Steve the Second. I gritted my teeth. Then
Ellice was told that she needed eye surgery on her good eye. She
has only one eye. Steve simply said, “I can’t handle this,” and
walked out on her. By now I had known Ellice for two years. She
was panic-stricken both at the thought of being “patched” for two
weeks following the surgery, during which time she would be blind,
and at the prospect of permanently losing her eyesight should
something go wrong during surgery. I stepped into the boyfriend
role, and comforted her as best I could. She was terrified at the
prospect of permanently losing her vision and worried aloud what
would happen to her if that occurred. I thought long and hard for
a very long moment and told her that if she lost her vision
permanently, that I would marry her and take care of her for the
rest of her life. She was stunned. “Do you know what you just
said?” she asked me softly. “Do you realize what you just said?”
Ellice went off to have her eye surgery and left me the key to
her apartment so I could water her plants. I remember that I
brought my vacuum cleaner to her apartment and thoroughly cleaned
it because she needed a clean environment post-surgery in order to
avoid infection in the eye. After getting out of the hospital she
went to her parents upstate who cared for her during the time that
she was patched.
After Ellice returned, the surgery successful, I tried to make
her my girlfriend, and we dated a few times as opposed to being
just friends, but I failed to ignite Ellice’s interest. I just
wasn’t totally her type. Her interest in me as a prospective mate
waned. It had never really been there in the first place. I went
back to just being her friend, but with a difference: we now had a
history together, and she went out and got herself another guy
named Steve.
Two years went by. Then the eye-surgery monster reared its
ugly head once more. Ellice needed another surgery to save the
vision in her one eye, or she would lose it entirely, and this time
a much more invasive and serious surgery, and with less of a chance
of success. Once again, her current boyfriend Steve (not the same
Steve as the first time) couldn’t handle it, but this time with a
difference; the two of them had a bad fight over it and Steve left,
but began making threats against her and anyone who might date her
in the future, and he began cutting up and mailing back to her each
gift that she had ever given him. I changed her locks and started
wearing my body armor when I went to her apartment. Then Steve
rammed his car into a bridge abutment, permanently paralyzing
himself from the neck down, which removed him as an effective
threat, since I don’t have to be terribly afraid of a paralyzed guy
in a wheelchair.
Ellice and I discussed what my role would be following her
surgery; she would be patched and blind and need drops in her eyes
and care and so on. I was not her boyfriend and had never been,
and as far as she knew, never would be. The idea didn’t even
cross her mind, but it did mine.
She had her surgery, and spent a weekend at her parents’ home
and then came back to her apartment. I had her key, and came and
went as needed, gave her her drops and medicines and fed her and
cleaned her and so on. Nurses make difficult patients, and Ellice
delighted in poking fun at my amateur efforts to nurse her and she
did to me all the little tricks that patients do to make life
difficult for nurses, that she had learned from her own patients.
One day while I was doing her eyedrops she began distractedly
telling me how, once she recovered, she was going to have to go out
and find herself a new boyfriend. I told her to turn her head to
the right (I was on her right.) She did and said, “Now what?”
I said, “You’re looking at your new boyfriend.”
She actually looked past me, as if there was someone behind me.
She said, “I don’t see anyone here.”
“I mean me,” I told her. “I’m your new boyfriend.”
“You?” she exclaimed. She began studying me appraisingly as
she considered the possibility. I put my arm around her, and
playfully pinned her arms. “And I’m not giving you a choice,” I
told her.
“OK,” she said after a moment of thought. “But give me some
time to get used to the idea.”
I gave her the time as I stepped into the boyfriend role, but
this time officially with the job title. I had to force Ellice to
admit to her other friends that she was now my girlfriend, which at
first she tried to hide; they accepted me and Ellice herself grew
comfortable in the state of affairs. She was very active, almost
exhaustingly so, she could tire me out, and did. She was not one
for staying home; we always had to be outside on the move. This
was, of course, after she had recovered from the eye surgery to the
point that she could be this active. She was still subject to post-
surgery restrictions on her activities which I enforced rigorously
and which she reluctantly complied with.
Our relationship was not without its problems. Ellice is
temperamental and likes to provoke a fight with a boyfriend,
because she likes the lovey-doveyness of making up afterwards. I
personally hate this characteristic of hers, and like a stable
relationship with as little conflict as possible. As the days and
weeks of “us” became months, we fought more often, very often in
public, and both of us began dreaming of getting out of the
relationship. But I would not leave until Ellice no longer needed
my care; I would not jeopardize the successful results of her
surgery. That time came in late Spring of that year; Ellice was
now well enough to make a go of it on her own, and we both hoped
during the coming summer to meet mates more suited to our
individual temperaments. In fact, we had never been sexual
intimates, neither of us having ever felt much desire to be. And
so, after one last fight, we broke up, with much tears and promises
to always remain friends. Which we have done, to this day.
But things did not go well for Ellice that summer. She became
tired. She did not feel well. She felt worse and worse. She
began going to doctors. No one knew what was happening to her,
just that she was sick, and we didn’t know with what. There was
talk about the Epstein-Barr Virus. And by the end of that summer,
she was diagnosed with a disease that few people had ever heard of,
CFIDS, also called at the time the “Yuppie Flu,” because of its
propensity to strike the population of intelligent successful young
overachievers like Ellice, and like you, Nina.
By the end of the summer Ellice was no longer able to live by
herself, and she quietly slipped back into the role as my
girlfriend, so that I could nurse her again. But this time she was
easy to handle, because she was so weak and exhausted most of the
time. Gone was the girl who could wear me out or who always had to
be on the move; Ellice was now either sleeping in bed, or going to
bed to sleep. Her exhaustion would come upon her with such
suddenness that she might be unable to cross the room to reach her
bed; she would freeze in midstep, teetering and nearly collapsing
as I would get to her in the nick of time and support her as I
assisted her the last few feet to her bed, and with difficulty try
as gently as possible to lay her down on it.
For a few days at a time I kept her here at my apartment, and
then for a few more days in her own. This was about the time that
I took my EMT course and effected the “save” on Ellice at the
doctor’s office. The ulcer which she had was likely one of the
infections which she had due to the compromise of her immune system
by the CFIDS. Not long afterwards she decided to move back upstate
with her parents, where she lives today, 18 years later. She
closed down her apartment and gave away all of her furnishings and
belongings, at that time, and left her job for good. I had to pick
up her last paycheck.
Today Ellice lives with her mother. Her father passed away
years ago. These days Ellice has a boyfriend, a fellow who likes
her companionship and is kind to her. And I’m so glad that she has
him and I hope their relationship lasts forever.
During the time that I had Ellice while she was sick with
CFIDS, I really did not know how to handle someone with this
disease. Much of the pain of CFIDS in internal in the victim. It
doesn’t show on the outside. The fatigue and tiredness is
excruciating to the sufferer on the inside, but those around, like
parents, boyfriends or caregivers, absolutely do not know what the
patient feels. Forcing someone like Ellice, or probably you, Nina,
to even walk across the room, or to talk when they are exhausted,
causes so much pain that no one else can see, and can cause even
deeper fatigue, which then lasts an even longer time. I really
learned what I know about this disease from the mistakes I made on
Ellice. I learned that I could not push her; and that even she
herself could make mistakes in judgement as to how much energy she
really had in reserve. It was said at the time that in a way, this
is a disease of the mitochondria in her cells; there are fewer of
them and so she has less energy. At least, that’s what was
believed back then.
CFIDS sufferers are often told even by doctors that their
disease is imaginary, in their mind, because their pain is not
visible to others. Mental illness is often suspected. Sometimes
when a CFIDS patient loses weight, doctors suspect anorexia or
bulimia when such is not the case. But the abnormal lab results,
and the infections, and other abnormal findings are clearly not “in
the mind.” It is for this reason that the CFIDS sufferer should
only seek treatments from the doctors who specialize in this
disease and so have developed a better understanding of it.
One more thing I have to say about it is about my use of
reflexology to try to treat Ellice’s CFIDS. Reflexology is a foot-
massage technique that is supposed to have health benefits. You
may have seen a few businesses along Kings Highway that offer
“reflexology” if that in fact is what they are actually doing and
not just faking it and taking their customers’ money. I took a
reflexology course about the same time that I first met Ellice, and
I first used reflexology on her shortly afterwards, when I
completed the course, long before she was ever sick with CFIDS.
She liked having reflexology done, and I did it for her from that
point onwards, whenever either she asked for it, or when, being
with her, I just felt like doing it for her as a way of showing
affection. By the time that Ellice had been diagnosed with CFIDS,
I had been doing reflexology on her for 8 or 10 years. Obviously
you are not going to cure anything by just massaging someone’s
feet, but it does produce deep relaxation and sometimes makes pain
a bit less. I began using reflexology to try to reduce the
severity of the pain, fatigue, and other symptoms of the disease,
as Ellice was experiencing them. It is impossible to say with
scientific accuracy what degree of success I had, but I think
perhaps that I made her feel a little bit better for a while. I
hope to do this for you when you are back here.
Well, I want to get these emails off to you, so let me stop
here. More on what lessons we learn from all this later.
Sincerely,
Mark.
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Sydney, November 23, 2009 - I have been admiring your project and I am looking forward to seeing it grow to Sydney (my hometown). It is great that you have involved so many different parties and individuals from across your city.
New York, November 20, 2009 -The 
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