Memory, NaNoWriMo, Illness…

blanket flower - digital art

Abide has been linked to by the CFIDS Association of America, and I am getting lots of new visitors. I feel I should offer you something of substance, but since I am doing both NaNoWriMo (National Novel Writing Month) and, at Watermark, NaBloPoMo (National Blog Posting Month) I haven’t much energy to prepare a new, substantive post.

My NaNoWriMo project is a memoir of sorts, a collection of memories. As it happens, I’ve written a bit about the time I first became ill — so I’m giving you that, beneath the cut. This is what I have.

If you are new here, I hope you will explore a bit, and find something of use.

[This post was written before I saw Lorelle’s Blog Challenge, but I’d say it meets it.]

   

********************

It’s
1995, I’m forty-seven years old. I go to work; I come home; I sleep. I
am so tired. I do none of the usual things — play with E, go
to auctions and antique stores, galleries and readings. I want to do
these things, but I’m too tired.

At work, I sometimes close the office door and lie on the floor. Just to lie down.

I
can respond to demands; I am there when called on. But I can initiate
nothing. And, outside of work, I can respond to nothing.

It’s
summer; there is a writers conference at the hotel next door. Linda
Hogan is coming to speak; C and B are coming [from Alaska] to attend. I’ve
arranged to take time off work. I carefully review the schedule, decide
which sessions I can attend, then come home and sleep before another. I
don’t notice that this is odd; that this is unlike me.

On the
third day, C and B sit me down and tell me I must see a doctor;
something is seriously wrong. This is not me. This is not the
high-energy, active and busy person they know. Something is wrong.

Of
course, I’ve known that for awhile. I convinced one of the docs that
works for me that I am depressed, and he’s prescribed anti-depressants.
I’ve been on them for months.

I don’t question my self-diagnosis, though a simple glance at the DSM [Diagnostic Statistics Manual], a
simple thought about all that I know of mental illness, would tell me
that I’m mistaken. Depressed people don’t want to do anything. I want
to do everything. I just can’t.

Later, C tells me that she
and B came to tell me he has leukemia. They don’t tell me, because
they think I have it, too. All the symptoms are there. The fatigue, the
absence.

I go to the doctor. I tell her: Just don’t say I have chronic fatigue syndrome.

So she doesn’t. She tells me I have fibromyalgia.

She
and the physical therapist decide that I must take two months off work,
and rest. I must cut way back on swimming: only five laps a day. I go
to the physical therapist once or twice a week; I try hard to get out
of the pool before I’ve done too much; I walk slowly; I sleep. And
sleep. And sleep.

I am sleeping twenty hours a day.

I am taking medications. I gain fifty pounds.

I sleep.

***********************

When I return to work, I begin at only half-time. I close my office door; I lie down on the floor. I forget things.

I
have a conversation with [a colleague]; he asks if I’ve done X. I don’t remember
saying I would do X, which is something important. His face. His
stunned face. He says, don’t you remember? He prompts me with pieces of our previous conversation. It comes back to me, bits of it. Only bits.

I know I am failing. I know I am not doing my job; my staff is doing my job. I am not doing my job.

I can’t do my job.

**********************

I’ve spent most of my professional life teaching people to not say can’t. To see their lives differently, to see and claim the choices they’ve made. To say: I choose to. To say: I choose not to.

This is the most difficult thing, to say I can’t.

**********************

I
meet with the agency director. He is unfailingly supportive. He
understands, having been ill himself. He suggests a part-time, at-home
job. I agree.

For several months, I drive once a week to
P—, review charts, make notes. Every day I get up, get dressed, sit
at my desk in the study and stare out the window. Then, when it’s time
to stop for the day, I get undressed and go back to bed.

Finally, I meet with him again. I tell him I am not doing my job. I tell him: I can’t.

I resign.

***********************

I hope that, as guilt for not performing lifts, I will feel lighter. But I don’t.

I sleep.

I
grit my teeth and swear I will get better. I do everything I’m told. I
take my pills. I rage, deep inside, where no one — not even I — can
hear it.

This goes on for years.

*************************

I
see a psychologist for many months, trying to identify and ‘fix’
whatever psychological defect is causing this illness. She finds no
such defect. She says that I am ill; that my challenge is not to find
the psychological roots, but to find the psychological stamina to
adapt, to make a new life for myself, from this present and real
situation.

She tells the insurance company this; the Social Security
Administration. I am plunging through my assets; selling the property
J left me, piece by piece.

I am waiting to get well. I am trying to get well.

M
visits. She tells me I am not the person she used to know. She says
this with disgust, with anger. She does not like this new person, this
person with nothing to give. This angry person.

And neither do I.

*************************

But I’m too tired to care, much.

************************

I
still write. I could go to those notebooks now, and see what I was
thinking, what I was feeling. But this is about memory, its roses and
its deficits. So I will not look. Not yet.

3 responses to “Memory, NaNoWriMo, Illness…”

  1. Hi, somehow was looking up Hashimoto’s and saw your link. It was the support of another who has memory issues due to M.E./Cfids. Also, had to leave job in mid 90’s. Could not push myself formerly active up stairs at work and my boss took me to ER. The beginning ot this more than decade of illness, being limited, alone, mostly and finding quality of life through the daily myalgic pain…it seems to have its own circulation. Am grateful for what I am able to see, hear and do. Thanks for sharing your experience. Feel better but so tired. Bye for now
    Susan

  2. You wrote that, “I feel I should offer you something of substance,” and I wanted to let you know that you are and have.
    I just came across your blog trying to find information on “how to live with severe CFIDS”, which I have, so severe I can’t bathe for days, brush my teeth, prepare food for myself, sometimes even drink a glass of water, pay bills, etc., and I see that you have had the same.
    I have tried so hard to deal with this, and I seem to be getting worse, not better (in part, I think, because I can’t get rid of stress; life seems to overwhelm me with it in situations and experiences whether I want them or not). I have no one to help me, and my own mother won’t allow me to move back in with her, so I am now thinking about a care facility, although I may not qualify because I am only 45, although I feel like I’m 145.
    I don’t know if Medicare would cover it, but I know I can’t continue this way … I wonder how many people might have this, though, considering the popular illegal drugs through the years, from cocaine to meth. If I could find cocaine or meth, I’d use it. I’m so desperate to be rid of this; if someone said eating live scorpions would cure me, I’d do it.
    Anyway, again, I don’t know whether I could even afford a care facility or be able to get into one, so I guess, in this instance, what would happen to me is that I would just wind up dying of starvation and/or dehydration because my CFIDS is so bad, I can’t chew food, and swallowing takes so much out of me too.
    In the past, doctors tried Provigil, Adderall, etc., but the meds would stopped working or the dose required to force energy into my body caused my heart to experience tacchycardia.
    So I’m at the point where, although I would not intentionally take my life, I think that this illness is going to take my life.
    How does one get help when no one will help? I have tried all sorts of agencies, etc., and that is just more stress.
    K

  3. One more thing: For years, doctors insisted my fatigue was caused by depression.
    And you wrote exactly what I write/say (when I have the energy to speak) to doctors and others to try to get them to understand (which they rarely do) that depression is not causing the “fatigue” (what a terrible word to use for how severe the exhaustion/lack of energy is; I often just tell my doctors/family members, etc., that I have all the energy of a “dead person” because this is truly how I feel).
    I have experienced depression in the past caused by grief and loss (of a parent), and I know the difference, like you do. I know that depressed people don’t want to do anything. When I was depressed, I didn’t want to do anything.
    But with CFIDS, it is very different. Like you, I want to do so many, many things. I have lists and plans and hopes and dreams of so much I want to do and accomplish and be. I think anyone who has desire and no energy, or the will but no stamina would feel depressed about it. I am sure this is how many elderly people feel.

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