Tuesday, August 30, 2016

Existential Questions About the Miracle of the Internet

Dear Friends,

As you know, I have been ill for a very long time without a diagnosis. This has necessitated a universal paring down of my life to its most basic elements. I have continued to do such things as breathe, love my children, and consider the meaning of life. I have put on hold other aspects of my old lifestyle, waiting for a time when I have a clear head to consider whether such things should be part of my new life with a chronic illness of my own, complex children with many typical and unusual needs, and a husband and other family, friends, and a home-- none of which bears well months of neglect and delay. I am still waiting for a sense of clarity. I am beginning to suspect that such a sense will not easily and spontaneously arrive.

When the internet first appeared in my life, I embraced it as a miracle of the Communication Age. Suddenly, I was able to engage in a personal exchange of ideas with a vast number of people from all over the world. As it became clear that Duchenne was a part of my life, I was thrilled to be able to use my resources and abilities to join the conversation via this blog, social media, and the world of publicly available written information. In the internet age, you see, self-publishing, I thought, would lose both its cost and its stigma-- I could pour out my story at such a low cost (both financial and life-cost), that I never hesitated to do it. I told you nearly everything and what I didn't tell here, I planned to tell in a more traditional way through books and magazine articles. I believe in the healing power of true stories and I have long felt that the more of our stories we have access to, the better for each of us and for our community.

Then I became ill and I started to learn about the world from a totally different perspective. My ambition had been totally replaced by vulnerability. My sense of self became more tenuous, my need for privacy more intense, my emotional and cognitive filters nearly non-existent.

As I was lying in bed, casually surfing the internet that I had once seen as populated almost entirely by nice, well-meaning neighbors (albeit some of them from far away), the awareness began to creep up on me that even online I was protected by a vast cushion of privilege stuffed with relative anonymity (despite my oversharing nature) and sympathetic (or perhaps boring) subject matter, just as my nationality, economic status, skin tone, and hair texture allowed other people to see me in a (partly-true) manner in "real life" that provided to me a great deal of biased insulation.

Then I expressed a feminist opinion on a current event via social media. And I got trolled for the first time. Threats of personal violence are a powerful wake-up call to a sense of neighborliness and security. I had never been threatened verbally in this way, being a relatively shy person living mostly away from crowds. The street harassment that I had (of course) experienced was creepy and unpleasant rather than violent, and I took the daily perils to my personal safety the way that almost all women do: I tried to ignore them because I had things to do and places to go.

As a nonfiction writer, I also took notice of the howling mob attacking respected journalists and commentators as they went about their daily work of educating, informing, and explaining the complex world around us. Being an election season, one would expect many of the angry comments to be ideological. Normally, I just ignore those or I casually survey them from a detached perspective; either way, I pay them no mind. But this is not a normal American election season in which both sides are tainted by the typical political ugliness. This is a months-long extravaganza of unwarranted and unprecedented lies and threats and trauma.

Being sick, and having neither diagnosis nor treatment, nor medical support of any kind, my social calculus has changed. The pervasive, inescapable, undisguised hatred and violence presently afflicting our broader online community is a thing that I have found intolerable.

I have taken a leave of absence from my healthcare job (providing in-home services to Rain through Colorado's very generous children's programs). I have taken a leave of absence from the university where my illness flattened me just one semester shy of my master's degree. I have also taken time away from Facebook (through November). And as you have noticed, I have taken time away from here.

Despite my overwhelming sense that this is not an opportune time to be a personal essayist in any format, I am still considering my options. I believe that you have a right to know that among those options are the abandonment of any sort of public life or writing, including the deletion and removal of this blog and my remaining social media presence.

As I said, I am thinking about my options, hoping for greater clarity of mind and body in which to come to a decision. For now, please consider me to be on an extended leave of absence.

Friday, May 27, 2016

Friday Photo Special Edition: Mind of Rain, Wildlife Artist

Just in case you haven't been following me on Facebook (where I spend an inordinate amount of time), here is a "reprint" from over there.
As you may already know, Rain is a wildlife artist.

Here are the close ups with Rain-approved captions:

An ocelot swipes a bird right out of the air while, below a fishing cat fishes.
Note the clever use of vines and foliage.

A giant squid ferociously fishes while simultaneoulsy releasing large ink clouds. 

A shark, a dolphin, and a giant squid approach a distant ball of fish
which has been herded toward the surface by other predators.
Notice the above-surface splashes as well as the below-surface blood.
Also pictured: some seaweed.

A crocodile, underwater, disturbs the river bottom, raising sand while gnashing its teeth.
In the distance, tornadoes strike the dry landscape beyond the river's edge.

Friday, May 20, 2016

Human Doings or Human Beings

I really loved the way I was living my life. I felt that I was thriving in my high-stress, high-intensity way. It was fun and I liked who I was most of the time. I thought I was a good parent, a good worker, a good student; I tried to be a good wife. I believed that I was acting as a tiny force for good in the universe, and I was proud of my small contribution. I like striving, and I felt that I was becoming bigger, better, smarter, and of greater worth. I felt that I was a living to capacity, making the most of what I could be. I thought that was setting a good example, that a "doing-more equals being-more" attitude was a good way to approach Duchenne. We're not going to let a little muscular dystrophy slow us down!

I got up each morning and got myself ready. We ate breakfast together as a family every day. I worked with Rain as his IHSS-HMA home healthcare provider and we stretched together. I went to the university and I worked at either the literary magazine or the Writing Center. The lit mag was an interesting and unusual challenge with a steep learning curve for me, both in terms of taste/discretion and skills. The Writing Center was fun, fast-paced, and engaging; I spent my time helping students and community members make their written work clearer and more vibrant. Then I studied. Then I went to classes. Then I wrote and studied and read and thought some more. I was posting here several times a week. I was eating on the run more often than not, and my exercise was limited to walking briskly around campus from class to class and those morning stretches with Rain. I rarely looked out the window, and I was going to bed after 11pm every night. Weekends were much the same but without the trips to and from campus.

As I sickened over the course of the autumn, one by one I saw all of these things go. First I lost my joy. Then I lost my motivation. Then my will. Then my ability. I left the university; my status there is now indeterminate. I took a leave of absence from the IHSS agency. For the darkest months of the winter I did little more than lie in bed and watch videos on my computer and birds out the window. I couldn't even read. I didn't die, but there can be no denying that I lost my life.

Yet, there were always bright spots and life around me just went on:

Doctors gave up on me but my family never did.

Scott took over every part of the housekeeping, kid caring, and daily maintenance of our lives like the hero that he is. He was so good at it that at the times of my deepest confusion, it was hard to tell whether I was really still alive or not.

Hazel and Rain continued to do all of the normal things that kids do--

Reading the New Yorker is completely normal kid behavior.

Every kid finishes a science project late at night ...
in carefully chosen, theme-matched pajamas.

Hazel and Rain teach their auntie how to fly a kite. In February.
(That's when it's windy around here. And Aunt Susie has always lived in the woods,
where there isn't room to fly a kite and the snow is too deep and there are moose.)

Elementary school "Sock Hop" dance.
Costuming from the regular clothes closet = close enough to 1950s for me.

Birthday party in the park with homemade piƱata.
Yes, it is in the shape of a roadrunner. Thanks to Aunt Susie!

And Hazel's present to both her auntie and her brother for a shared birthday celebration:
a Lego museum in her room, which she kept secret as she worked on it for months.
Rain's wildlife art features a lot of action!

You know, looking back, it seems that I needn't have worried about losing my identity as a casualty of falling ill in such a big way. Identity comes (at least in part) from community. I'm beginning to realize that who you are is not as much about what you do as it is about where you find yourself to be at home. I still fit with the people who matter to me the most. Maybe I can shift my focus away from human doing and toward human being.

I can see some positive parenting by example for a family with Duchenne in that.

Thursday, April 7, 2016

The Long Haul

This is my life these days, more or less.

I admire those chronic health-condition bloggers who manage to keep up their work despite the debilitating fatigue, pain, cognitive impairment, and other symptoms of their various conditions. I appreciate that they somehow find time to go to all of those doctor appointments and perform all of those tests and still have the where-with-all to encourage the rest of us. I am impressed that they can break through the frustration and despair in order to write. No matter what happens to a person, there is always someone who is an elder, someone further along the path to the wisdom you need, someone who has been there and done that, setting an example for you to either emulate or modify. I make no claims to do such noble work. Neither do they.

I still do not have a diagnosis after over 6 months of declining health. But I've seen a lot of doctors and I've done a lot of testing.

I'll spare you any photos of the blood draws and urinalysis-- suffice it to say that half a dozen lab workers and phlebotomists on the other side of town know me pretty well. I see them more often than I see my closest friends. I've got the bruises and scarring to prove it.

I did an MRI and a pair of CT scans. I had IVs with contrast dyes. I drank two huge bottles of radioactive goo so that my doctors could get a better view of my guts.

I drank nearly all of that poison.
Yes, it made me sick, but I made it through the CT, the results of which were ambiguous.

I did a sleep study to see if I stop breathing when I'm unconscious.

An At-Home Study was no big deal.

Results have been inconclusive. I've got a slew of data showing that I'm really sick, showing that I'm getting worse without treatment, that my body isn't likely to just mysteriously and magically heal itself without really trying. The doctors have ruled some things out. This is not cancer. It is not an immune deficiency. It is not neurological or endocrine or pulmonary. It is not a tumor or a malformation in any of my hardware. It is not related to my Duchenne carrier status.

The rheumatologist doesn't know what to do for me. The infectious disease specialist wants to put me on high-dose antibiotics for a few months to kill everything, just in case. The hematologist wants to "reboot" my immune system with drugs. First we'll try a week of intensive steroids, then, he says, if that doesn't work, we'll move on to an IV-infusion that is designed to disable the specific immune cells that are most likely to be closest to the root of the problem.

What the heck-- I chose the steroids.
Potentially useless treatment is better than no treatment at all, right?
Thank you, Duchenne for teaching me that one.

There is serious talk about a trip to Mayo or the Cleveland Clinic. I wasn't kidding when I said I should call a veterinarian about one weird and unlikely test result. I'm doing acupuncture and massage. I see a psychotherapist. I take a lot of baths with Epsom salts and essential oils. I drink herbal teas. I take vitamins. I've put in calls to a couple of "integrative" and "functional medicine" doctors whom I suspect of being quacks. I've got a chiropractor to call whenever I'm ready. I'd be happy to work with any traditional healer, shaman, witch doctor, Reiki master, or spiritualist anyone might care to introduce me to.

I seem to have reached an impasse.

Further updates as events warrant.

Thanks for sticking with me, dear readers. I guess that part of living with Duchenne in the family also means that sometimes good ol' well-understood, not-much-you-can-do-about-it Duchenne can sometimes be the least of our worries. We see the inexorable progression of the weakness in our dear Rain. It's getting harder for him to get off the floor, to pick up a dropped toy, to maneuver on and off the toilet or the bed. I see his Gower's almost every time and I notice the way he heaves his shoulder with every step he takes. He's going to be nine years old in a week or two. Hard to believe, that. But what is easy to believe and oh-so truer than true is that he's a good kid with a loving heart. He comes to my room to check on me often, giving me a hug and some kisses before running along to enjoy his own interests. To him, this is all part of normal life.

Tuesday, February 23, 2016

Being (the) Patient

I think we have a fantasy in the disability world-- I certainly see it in myself and in the broader Duchenne community-- that through some type of magical reasoning if one member of the family has a severe illness/disability/condition then all of the other family members must be well. It just isn't fair for the universe to work in any other way. So it always comes as a shock when "someone else" is sick.

I have been more or less coping with some kind of mystery illness for months. I have been more or less continuously in bed since November. I have seen a wide array of doctors and specialists, and I am scheduled to see even more. I have done a lot of testing, and more testing is planned. As the months drag on it becomes ever clearer that the months will continue to drag on in much the same way. Don't get me wrong-- I know how lucky I am to not be even sicker and I am aware that while I have my bad/bed days, I also have some good ones, but I am sick of being sick and there is no end in sight until we can locate some kind of answers to the questions on everyone's minds: What is this thing? Why do I have it now? Can we treat it? Will the treatment be tolerable? Will I ever get well?

In the meantime, I'm doing what I can.

I can keep a list of symptoms in my computer and update it every now and then. In fact, I have a long version with my symptoms over time and some test results in a color-coded chart, as well as a single-page document with my most recent symptoms listed in bullet point form. (Organizing and reorganizing my data is one of the ways I manage anxiety.) I can keep a folder containing my medical records and test results. I can print these out and bring them to each new doctor, hoping that he or she will see some angle that the others haven't.

I can ask for help from my friends and family. One of my close friends helped us out during the second half of January and my sister has been staying with us during the month of February. Not only have they both been a great help--driving me to appointments and taking notes about what the doctors tell me, taking care of the kids, cooking and cleaning up, but they've also spent a lot of time cheering me up. My sister likes to sit on the end of my bed and do the crossword puzzle with me every morning. Mostly, since she is really smart and very good at crossword puzzles, she reads the clues aloud and tells me the answers she is writing in while I rest on a pile of pillows and look out the window. Every now and then I blurt out an answer and sometimes they make sense.

I can take some care of myself. I can take a bath every day (even if I need to ask for some help on some days). I can change into what Hazel has taken to calling my "daytime pajamas," as in, at three o'clock in the afternoon on a tough day: "Mom, I'm so proud of you! You're wearing your daytime pajamas."

On some days I can read. On others I can watch internet videos. Sometimes I just listen to music or I watch the light changing in my bedroom or the birds outside my window.

I can breathe in and I can breathe out. I can say "thank you" a lot. And I can hold on until we figure out what is ailing me. There is still so much to enjoy and to live for. And even when life doesn't seem to make any sense, I'm grateful that there is still so much that I can do.

Friday, January 15, 2016