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I had a visit the other day with a rheumatologist. It went amazingly well. Before the visit I’d taken notes. I’ve been keeping track of day-to-day symptoms for several months now. I thought about what I used to tell my patients before they were going to see the Psychiatrist. Doctors speak in the language of symptoms.

After the doctor came in and introduced himself, I launched into my list. I tried to present is as dispassionately as possible. Doctors are not well versed in the language of emotion. About half way through I looked up and apologized for having such a long list.

He said, “No, I appreciate it.” He was actually listening to me! I’m so used to the blank stares and curt dismissals of Neurologists. When I was finished and we had talked a bit more about the history of things he paused for a moment. “So, you’ve been dealing with this for 5 years, and have probably done a lot of research. What do you think is going on?” I about dropped my pants without being asked. I’ve learned that you should never suggest a possible diagnosis to doctors. They instantly see you as a hypochondriac who sits around looking for symptoms on the internet all day. It insults them that we common folk think we could figure anything out related to our health.

I told him I thought I was experiencing a progressive autoimmune or neurological disorder. I knew when the illness first appeared as an unrelenting pain in my left scapula over 5 years ago that something serious was going wrong with my body. Turns out I was right. The illness has finally progressed to the point where the symptoms can no longer be dismissed. And truly, I am relieved. I’ve been waiting for an accurate diagnosis for a long time.

I read this book when I was about twenty about a young woman who was injured in a diving accident and became paralyzed from the waist down. I’m pretty sure her name was Joni. The book was about how the accident and resulting paralysis deepened her faith. The book terrified me. I couldn’t imagine a worst fate than a physical disability. I was so afraid that God would strike me down in order to use me in some way.

Long before I had any illness I worried a lot about my health. My worst fears conjured up things like the C word or Lupus or some other health problem that could be disabling. I would say it was an obsessive fear that took the form of fear of contamination. I washed my hands until they were red and had abrasions trying to protect myself. I knew this was coming.

Some might suggest that I attracted that which I feared the most. I would disagree. Life has given me exactly what I have needed to further my spiritual evolution. Life has been in the business of removing every obstacle I’ve constructed to prevent myself from fulfilling my life’s purpose. And I am an expert in creating obstacles.

I’ve always had to learn things the hard way. Anyone that might have given me directions to avoid some of life’s hazards would have been wasting their breath. I had to experience things first hand, and sometimes more than once before deciding if it was unworkable.

Throughout the course of the illness I’ve often felt ashamed. I’ve felt like a failure for not working, and for not being able to cure myself. I’ve shamed myself for hurling through life in such an adventurous way and in a way that did not fit into a societal norm. I was horrified to find myself nearing the age when retirement becomes an option disabled and without a retirement fund. I’ve never been one to prepare for the future, or so I thought.

So now here I am and I’m OK. Being forced to step out of our busy-ness obsessed society has given me a completely different perspective on life. It’s changed my relationship with my son. And all that adventurous living, well, there are things that I’ve done and places I’ve been that I may not be able to experience in the same way again. I don’t have the endurance I used to have, that is just factual. So I’m glad I’ve lived a life that has been abundant in experience.

I don’t know what the future holds. There are medical tests pending, and more on the horizon. There are many possible outcomes, although my mind is attracted to the worst possible ones. Things could head in several different directions. I could be facing something that is more disabling, or I could continue to limp along as I have for many years to come.

Vindication is defined as “the action of clearing someone of blame or suspicion”. For those along the way who have doubted me (doctors, friends, relatives), I have many words to say that you will most likely never hear. Often people dismiss things that they don’t understand. The experience of chronic illness is unique and can only be understood by those who have experienced it. People who haven’t experienced it have no business inserting their uninformed opinions into the dialogue.



Despair’s aftermath

I woke up this morning to find that Despair was gone. Apparently my darkness was not enough to satisfy her.  She left my sink overflowing with dishes of half eaten food, empty Coke cans strewn about.  Apparently she left in a hurry; her laundry is still in the washer. There was a note scribbled on a paper towel on the counter saying she’d be back. She’d threatened to leave a few days ago when she found me on the computer reading kind words from strangers.  I have not yet noticed her absence enough to miss her.

I have a confession to make.

Despair didn’t show up unexpectedly. I went looking for her, gave her my address, asked her to come. I’ve been in love with her since the first time she presented herself to me, wearing a sleeveless shirt, drunk and bleary eyed, confessing that she’d just seduced her step sister. She was athletic then, burnished golden, the blonde hairs on her arms glistened in the sunlight. When I put my mouth on her exquisite lips, I knew for the first time what it felt like to be alive.

Despair knows exactly how to entice me. She knows I am Desire’s slave. I go back and forth between the two of them. I can never go too long without sleeping with Despair. She has never refused me, in spite of the many times I have abruptly left in search of Desire. Despair knows that as long as I am Desire’s slave I will never completely belong to her. But she is content in the knowledge that I will be back. I need her presence as much as she requires my absence. And Despair and Desire never come at the same time. They cannot co-exist.


Everything has crashed into a despicable pile of decaying moldy detritus. I learned that last word from a professor in a college photography appreciation class. I’m always looking for ways to use it. I’m not sure what the official definition is, but to me it means a whole bunch of messy unidentifiable crap. And that is the truth of my life at this moment. Or at least from my perspective.

Perspective is a funny thing. Any person could come along and point out a whole bunch of really good things in my life. My kid is healthy. I actually have a kid. I have a good job, a career that was years in the making. I have an opportunity to change people’s lives, and I do. I own a house and I’m not upside down in it. I’ve got money in the bank. And yet….fucking detritus.

It’s all such a train wreck now, I don’t even know when I began to slip off the track. Was it when my father died? When the ache in my shoulder turned into a twisted tree limb, spreading its branches into my neck, my head? When I started sitting with people witnessing their trauma, visions of which I now carry in my head? Or was it earlier, was it perhaps the moment I found out I was pregnant that I began to unravel? Or was it when it dawned on me that my relationship with the other mother of my son and I was broken beyond repair? Whatever the beginning, one thing is certain. A series of succeeding events have brought me to a place where I know nothing about myself anymore. I’m at times perplexed by my actions, embarrassed, and at others times horrified.

Who I was, I fear, is gone forever. Not that I want her back. She had her own demons. But the absence of knowing exactly who I am to become is daunting. My journey to self began somewhere around 1982, when this poster hung on my wall:

I Am Me
~ Virginia Satir ~

In all the world,
there is no one else exactly like me.
Everything that comes out of me is authentically mine, 
because I alone choose it. 
I own everything about me.
My body, my feelings, my mouth, my voice, all my actions, 
whether they be to others or to myself.
I own my fantasies, my dreams, my hopes, my fears.
I own all my triumphs and successes, all my failures and mistakes. 
Because I own all of me, I can become intimately acquainted with me. 
By so doing I can love me and be friendly with me in all my parts.
I know there are aspects about myself that puzzle me, 
and other aspects that I do not know.
But as long as I am friendly and loving to myself, 
I can courageously and hopefully look for solutions to the puzzles 
and for ways to find out more about me.
However I look and sound, whatever I say and do, 
and whatever I think and feel at a given moment in time is authentically me.
If later some parts of how I looked, sounded, thought and felt
turned out to be unfitting, 
I can discard that which I feel is unfitting, keep the rest, and invent something new 
for that which I discarded.
I can see, hear, feel, think, say, and do. 
I have the tools to survive, to be close to others, to be productive, 
and to make sense and order out of the world of people and things outside of me.
I own me, and therefore I can engineer me.
I am me &
I am OK.

I can recall the sense of empowerment I felt when I read it then. I was young, I was inventing myself, everything seemed possible. I was a survivor and the world was going to know it! It was my declaration. When I read it now parts of it seem silly, childish, even hollow. For instance, how can I be authentic if I’m not sure what is authentically me?  I’ve learned I can fool myself on this one. And I’ve learned that there are some things, many things, that defy sense and order. And about being OK. It was enough back then. Now I’m just not sure if that’s enough, or if on any given day I am anywhere near it. Right now, I am not OK.

And so I begin with a different poem, one I stumbled upon that was mentioned in a book by Dawna Markova, an author whose words have spoken to me in the past.


after chopping off all the arms that reached out to me;
after boarding up all the windows and doors;

after filling all the pits with poisoned water;
after building my house on the rock of no,
inaccessible to flattery and fear;

after cutting off my tongue and eating it;
after hurling handfuls of silence
and monosyllable of scorn at my loves;

after forgetting my name;
and the name of my birthplace;
and the name of my race;

after judging and sentencing myself
to perpetual waiting,
and perpetual loneliness, I heard
against the stones of my dungeon of syllogisms,
the humid, tender, insistent
onset of spring.
~ Octavio Paz ~

Please, Whatever, make it come soon.

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