Abide

Learning to Live with the Wall

 

 

Thinking about my life for an art journal prompt, I realize – my life used to be full, challenging, in every way. Intellectually, emotionally, physically, aesthetically, spiritually – I pushed myself, I challenged myself, I moved, loved, lost, changed jobs, went into therapy, worked hard, read books, took classes, thought, looked at art, wrote poems …

Getting sick really was like hitting a wall. Hitting it, then being surrounded by it. No way over, around, out. Locked inside. I tried.

The first years, what energy I had went to the house, mostly. An aesthetic, design challenge. Some writing, some reading. Oh, and, therapy at the beginning, thinking the problem was psychological. But no.

Where I used to be busy on all fronts, the illness narrows it down. One thing, one dimension, at a time. For a long time. Small challenges, small tasks, small thoughts.

But along the way, I forgot – or perhaps never noticed – what a truly amazing life I did lead. My life was not boring. I look at it now with some astonishment. If it were someone else, I would be impressed.

I am lucky to be a person who always had a wide internal life, since that is mostly what’s left to me now. I remind myself: treasure that, be grateful for that. Resenting what has been lost is useless. Worse than useless; it is debilitating.

 

 

 

[Click the image to see credits & larger sizes at flickr.]

 

Isolation and Shame

 

There are side effects of long illness. Isolation is one of them.

I was lucky, relative to other folk with chronic illness, in many ways. I was lucky to not have a partner who would -- or would not -- struggle with this burden. Some few may be lucky to have partners who walk beside them, but from my reading it seems they are few indeed. With all the adaptations this illness required, negotiating through it with another person was a complication I am happy to be without.

When I was well, friendships were grown around activities. Friends and I did things together: auctions, concerts, plays, farmers’ markets, art fairs, antique shops, lectures, lunch, dinner, breakfast … and, of course, work. When all that falls away, it’s no surprise that friends fall away, too.

Or perhaps I fell away. Those first years I was not only fatigued; I was enraged.

Many tried. I tried, too, through the fatigue and frustration.

Friends may also have stepped away due to my own rage and resentment. I was cranky. Not just from pain, but from powerlessness. A workaholic deprived of work; a swimming addict denied the pool -- I was not in a good mood. I was not a graceful patient. I know that some of you were. I don’t know how.

That, at least, is better now. Have I adapted, accepted, or merely given in? I’m not sure, but whatever it is, it’s better. I’m much more able to focus on living a good life, as the life it is, rather than regretting the life that is not.

But the stubbornness, the perseverance, that served me well in my professional life did not serve me well here. It took years to learn to pace myself, and I still struggle with that.

 

Getting Dressed

I am blogging in my pajamas. I've been in pajamas since 2:00 this afternoon.

What does this have to do with the purported topic of this blog?

Well, fifteen years ago, when I was first diagnosed with fibromyalgia and chronic fatigue, I made a commitment to myself: get dressed every day. I might not brush my hair; I might not even brush my teeth; I might just go from my bedroom to the daybed in the sunroom; but I would get dressed.

Aside from a couple of times that I had the flu, I've kept that commitment.

The last few days, fatigue has been heavier than usual. I slept some of yesterday, and again today, and when I got up today I thought, why not just stay in pj's? It was already 5:00 pm, and it's not illegal or anything.

So, after a year of silence in this place, and after fifteen years of keeping to a standard -- here I am, blogging, in my pajamas.

A Bad Spell

A bad spell (which can last for months) means:

• Energy to do only one or two things per day. Taking a bath or shower counts. So does cooking a meal. So does writing a blog post, or talking on the phone with a friend. Take your pick.
• Neglecting the pets. Not walking the dogs. Insufficiently petting the cats. Ignoring the parakeets. Being a bad pet parent.
• Beginning, setting down, forgetting, several books at once.
• Sleeping at least twelve hours per day. Not quite being awake the other twelve.
• Wearing the same clothes, unwashed, day after day after day, because doing laundry is too difficult.
• Eating rather too much pizza. Cheap, filling, delivered.
• Stepping carefully around piles of books, magazines, unread mail.
• Leaving phone calls, email, paper mail, blog comments -- unanswered.
• Wondering how one prioritizes long procrastinated tasks.

Of course, the fact that I can write this means that the bad spell is easing; it's only in looking back that I see how bad it's been.

Solitude, The Bad Smell, & Trying to Feel Thankful

Solitude, from the odd neighbor
[click for larger image]

It's Thanksgiving. I'm alone. It would be a day like any other, except it's this day; this day to celebrate attachments, family, friends, community. Any other day, I am grateful for solitude; this wide emptiness I need for writing.

Not all writers need this; some seem to be quite social. But I do need it. Empty day after empty day, in which to explore my insides; in which to watch my narrow outside. What Abigail calls the vertical: the going down; the going up.

The Bad Smell is back. Every year or so I have an attack of this unpleasant smell. It permeates everything. During the first few episodes, I would drag friends and neighbors through the house, trying to find its source. No one but me can smell it. Whether it's an ordinary scent that my brain decides to warp into something awful, or merely a misfire in the brain itself, I do not know. My doctor says: Wow. An olfactory hallucination. That's weird.

And it is weird, but I am not alone. A few years ago I was perusing random blogs, and came across an entry wherein the author spoke of an appointment to see a neurologist, because of a terrible smell. A quick review of old posts and her About Page told me that yes, indeed, she had chronic fatigue and fibromyalgia. I checked back, and as I expected, the neurologist found nothing. So I know it's just another of the inexplicable symptoms of this inexplicable syndrome. One that is shared, but not noticed. No physician has yet wondered; no researcher has yet explored.

In the meantime, I try to cope. With each new assault, I recognize it sooner; I know there is no point in going from room to room, looking for something rotting or dead. Once, during an especially intense episode, I wrote in my journal about smelling my own death.

We writers may seem staid on the surface, but we can be melodramatic on the page.

I try to find my way to gratitude, on this day we set aside for that. And I do, often, feel grateful, and not only in the sense of sprinkling sugar on lemons. Morning light, the purry, furry greetings of my companions. The bright red head of a woodpecker in the garden. That I am sheltered and fed, where others are not; where I could well not be, if not for a largely fortunate life and the care and love and generosity of others. For this machine, on which I place my ephemeral thoughts.

I brush my teeth; I chew on pungent ginger candies; I catch myself when I begin to wander about, trying to locate that terrible smell...

The smell will go away. Tomorrow I will share a meal with a friend. Today I will talk on the phone with another, and another. The snow will melt, the gate will open freely once more, the squirrels will be fed. In the meantime, I have this moment, in which to be thankful.

   

Memory, NaNoWriMo, Illness...

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.]

   

Invalid

@ Wiktionary:

invalid [adjective]

1. not valid; not true, correct, acceptable or appropriate

invalid (plural invalids) [noun]

1. One who is confined to home or bed due to illness, disability or injury
2. Any person with disability, e.g. invalid carriage

Usage notes

• The sense of a person confined to home or bed is considered politically incorrect by some.

It's been a tough few months; I am feeling invalid: not correct, acceptable, or appropriate; confined to home...

As I confront yet another decline, further in/abilities -- or, try to confront them. Try to accept, adapt, cope anew...

It's been over a decade now, that I've been ill -- sometimes better, sometimes worse; sometimes coping well; sometimes not. But managing, more or less, on my own.

But not lately. And, perhaps, not in future -- at least, not in the immediate future. This -- needing help just to manage day-to-day -- is another whole level of humiliation. I hate it.

Hate hate hate.

It pushes all the worthiness buttons. Sirens and alarms throughout my psyche.

At this point, I can live a sad, dreary, uncomfortable life -- with my companion animals neglected, and myself as well -- or I can face this, and apply for the help offered to the helpless. Medicaid. Aging Services -- though I'm not yet (quite) sixty. Help with shopping and cooking, household help --

But if I have that, perhaps I can walk the dogs again. Perhaps I can write more than briefly; perhaps I will pick up the camera again.

Just typing this, I am crying. And I don't cry.

Don't cry. Don't ask for help.

Messages that have been useful for me, in some things. Practices that have helped me push through this far, keeping my independence --

Now, possibly, counter-productive.

Do I deserve a good life? Even if I can't work for it? Even if I don't earn it?

How do people -- the saintly, the patient, the cheerful people -- how do they cope with this?

Illness is a kind of winter...

Illness is a kind of winter. It strips the green, leaving only the bare, peeling branches of your life; but it opens the sky. The view widens. It is a new season, only that. You know it will get colder. You know ice is coming. You retreat indoors; inside.

Reading MFK Fisher, I see that I know nothing, really, of pain; and less of those who live with -- who love -- the person in pain.

I am in a between place. I feel change coming -- which, I suppose, is appropriate to the season. I sit on the deck, alone, late in the night, smoking in the snow.

I shall accept T.'s offer of a tree, cut from his property in advance of the power company saws. We will put it on the deck, and decorate it with icicle lights and the Buddhist prayer flags K. gave me for my birthday. I will welcome this solstice and whatever darkness and light it brings.

I don't know who I am. I am no-one. I am a dark vessel, waiting.

[Crossposted from Watermark]

Updates

Kathy says, in a comment on the last post (Illness Etiquette):

I was wondering . . . if you have any "Do" suggestions. Most of the suggestions on the list are "Do Not" or "don't go in" or "leave when they're tired". I'm glad to know that. But when it is appropriate to visit, what should I do then?

I think this is an excellent idea, and have been doing some thinking on it -- though it may be awhile before I get to it. In the meantime, would any of you who have ideas for this, post them in the comments, or email them to me? I'd really appreciate it -- and will credit contributors, of course.

For those interested in the Cymbalta saga -- I'm feeling very much better. So much so, that I'm experimenting with dropping pain meds altogether. It's been over a week now, and while I have had pain, it's manageable; and my head feels clearer. No great surge of energy, but more presence, and more pleasure.

Both of which count for a lot.

HAPPY NEW YEAR

From all of us to all of you

The card, a gift to me from friends, says:

Given human beings' love of truth, justice, peace, and freedom, creating a better, more compassionate world is a genuine possibility.

His Holiness The XIV Dalai Lama