A Regular?

I'm putting together clothes to wear to a doctor's appointment, trying to decide which sweater and jacket I'll need: checking the weather online and thinking about how October feels here.

It's a few months shy of ten years since I came back to my hometown, cloaked in the shame of failure and an illness that didn't have a name.

Diagnosis came soon after. But there was little help involved and before the year was out, I was shuttered away like a summer cabin.

Rarely do I make it out. I spent more time interacting with this town when I lived in another state than I do now. Stuck in the house, it's years since I've been a regular anywhere but my room.

And yet as I think about October, The Replacements' "Here Comes a Regular" gets stuck in my head.

Despite being the end of a string of generations in this small town, I never fit in here. I still associate it with the melancholy, stifling familiarity I was running from when I left at 17. Seasonal jobs and a rotation of hangouts with shag carpets, faux wood paneling and hard alcohol clutched at my ankles. 

But now everything is inverted, and I yearn for that feeling. It's out there waiting along the highway and tattered back roads. The town, faded and weathered versions of my memory increasingly interspersed with the unrecognizable, though it has forgotten me, is mine.

AHRQ Draft Comments for P2P

Edit: I actually didn't mean to publish this as I feel pretty iffy about the whole thing. "Put it in with the drafts for the blog. Easy to find later," I thought. Yes, well, good job brain fog.

As the goal of the P2P program is to "identify research gaps in a selected scientific area, identify methodological and scientific weaknesses in that scientific area," it is essential that the P2P program be aware of the existing research. However, the AHRQ Report's strident and narrow criteria excluded an estimated 90% of the literature on ME/CFS. Among this excluded research are groundbreaking biological findings (ME/CFS patients' inability to replicate work levels on 2-day CPET, low NK cell function and more) that could be evaluated for diagnostic criteria. Some of this research was done with NIH grants (Fletcher).

Inclusion of the highly controversial PACE trial and focus on CBT and GET as treatments is disconcerting. As is the lack of distinction in the report between CBT as an intervention to assist patients in coping with an organic chronic illness and CBT as an intervention to correct "aberrant illness beliefs."

Noting the "negative effects of being given a ME/CFS diagnosis" while failing to discuss the benefits is highly problematic. The implication would seem to be a concern that diagnosis fuels something akin to hypochondriasis, rather than an organic illness that exists regardless of diagnosis, in which case a diagnosis may be helpful. For instance, staying within one's "energy envelope," pacing and not overexerting oneself are crucial to the patient's prognosis. Once a patient is diagnosed they can begin to implement these lifestyle changers, whereas without a diagnosis they have no way to know that pushing themselves beyond their limits may cause lasting damage (as was my experience).

Although I support the report's claims that current research is insufficient and studies need more participants, I am concerned about the way existing research was represented. Specifically, I am concerned that the authors may have erred on the side of popular bias in misunderstanding the severity, seriousness and organic nature of this illness.

My Progressive Dilema

*Trigger warning:* If your trajectory is progressive, especially if severe you really shouldn't read this.(Writing it messed me up)

The thing about becoming progressively worse over 12 years: it's terrifying. I can feel a pretty horrible end bearing down on me. So I try to prepare and be careful and judicious with my resources. Experimenting with treatment, visiting with people, expending mental and physical energy: it all needs to have a good chance of being beneficial, successful or enjoyable. 

Every once in a while, in a moment of feeling semi-relatively okay and doing something I don't often do in my post-illness world (Tonight it was walking across my room in my underware.) I catch myself feeling like me again. For a fleeting instant. In these moments I try not to think about the fact that every time I do something I might be doing it for the last time. When I was well enough to drive occasionally, I'd feel this way behind the wheel. But it's been three years. Things have gone downhill significantly.

I work really hard at holding the line, trying not to slip to a lower level of functioning. But one has to live. And sometimes the desire to feel alive overwhelms all good sense. And I falter. And I crash. And sometimes I don't get better. Maybe this is the key to my worsening over time. I try not to go down that road of blame and doubt. I think I'm fairly conservative about my limits, as PwMEs go. I try to grab what I can and do it as long as I can. Maybe I don't give things up soon enough.

But then, as I'm getting worse anyway, it becomes a question of how much I'm willing to let this illness take from me in the hopes that I may bargain with my behavior. I'm up against the pressure of "if not now, never." But, on the flip side, I can't sleep without medication and I need to keep myself well enough to go to the doctor for as long as I can. (What happens after that I don't even want to think about.) So I try to strike a balance between not doing things that make me sicker and doing them before I lose chance to do them at all.

Maybe some night soon I'll sneak out and drive around the block.

Trying Hard but Wearing an Unexpected Costume

August 8 is Severe M.E. and Remembrance Day.  A couple of PwMEs cooked up this plan to raise awareness:

*See everyone's selfies here*

All set to take a selfie for this dress thing, I reached into the back of my closet.  I was surprised to discover that I no longer own any little black dresses.

Thinking back, I sold them years ago and have since been too ill to attend the kind of events that require black dresses, so have not replaced them. Also, it's so far from my reality at this point I had completely forgotten. The reason the black dress was chosen for this project is that it's considered a staple item of every woman's wardrobe. (And some men too. C'mon, guys, wear a black dress for the cause!)

My little adventure of reaching for the essential and ubiquitous black dress and finding I do not have one is a perfect illustration of the way this illness bends our experience and reality. My illness is getting in the way of my taking  part in the awareness-raising activities for my illness! Which is also  entirely emblematic and true to form of M.E.

I did find the Gothic costume dress I irreverently wore to prom in 1998. Benefits of moving back into one's childhood room. This dress is old enough to apply for a driver license in California and the seams are not happy about it being pressed back into service. Today is not an occasion on which I want to be irreverent. But here it is,  the only black dress I own:

The necklace is too long and they eyeliner uneven. I'm rusty at these basic outside-the-house skills like accessorizing and make-up. Again, a perfect display for an M.E.

May 12th for M.E. Awareness

A call went out for blog posts about what Myalgic Encephalomyelitis means to us in honor of May 12th Awareness Day. It has been a particularly rough year and the prompt catches me feeling raw, dramatic and afraid, in a state of hoping to hope. 

***

I grew up in summers at my grandparents' magical home that has been in our family for over a century. It sits at a deep canyon's edge, where the river feeds a glacial lake. The house is an old cabin winterized by a mining engineer with little capacity for aesthetics or safety and decorated with a bohemian hodgepodge of mismatched heirlooms, World War II (and I) surplus, art and oriental rugs. Every wall is lined with makeshift bookshelves. English gardens nestled between tall pines slope toward the lake where my cousins and I swam every day. Between gardening, splitting wood for winter and Grandpa's maintenance projects, we kayaked, hiked, waterskied. Some mornings, very early, the lake would be glass-calm and when the sun rose, the surface reflected the mountains so perfectly that it was nearly impossible to tell where reality ended and reflection began. It was infinite. Sky and mountains and sky. Skiing on that soft, calm water, I am convinced, is the closest any human will ever feel to flying.  

This place is beautiful and breathtaking and for much of my life it was my heart. When I got sick, the grandparents who had always been my rock did not believe me. They nagged incessantly about why I wasn't doing normal things. They scolded me for being irresponsible, lazy and "making my parents old." My grandmother and I shared a doctor; she told the doctor that I was malingering. The doctor believed her. And I became unable to leave my parents' house. 

I haven't been back to the lake in nearly a decade. The grandparents are feeble now and, like me, the place has fallen into chaos and disrepair. This is what I am told, anyway. We will lose it soon. As Silicon Valley barons came looking for mountain hideaways, the land became too valuable and property taxes unaffordable. Part of me thinks that even if I could return I should leave my happy memories untainted. And part of me can't imagine the idea that I would never visit this place again.

Sometimes I picture myself as an old woman wheeled out by a younger generation to see the lake one last time; they've begged the new owners to do me a favor. Then I realize that there will be no younger generation. Aside from having no children, I have been too ill to bond with anyone else's. I am "Mom's weird sick friend," of whom they are slightly afraid. And I see my future stretching out before me... a chain of square, white bedrooms, uninterrupted by the comfort of a wild and free outdoors.  

But I can still smell the earthy air on a summer evening: aspen, alder and thimbleberry... and the scent of wet rocks as the river's water rushes over them. 

***

This post was written for the May 12th Blog Bomb, an effort to get as many peoples' stories out as possible on M.E. Awareness Day.

Use #May12BlogBomb on Twitter, Facebook, Google+, etc. to find participating blogs or visit this list of participating blogs. 

Thanks to Sally Burch at http://sallyjustme.blogspot.co.uk/ for organizing it!

Hiking Boots

We like to say that life is uncertain. But the moments when we tangibly know that we have absolutely no idea what will occur next are rare.  And in these moments, I wore hiking boots. Not soft, light day-hikers. Hard leather, with a steel shank in the footbed, a sole that wraps over the toe and parachute cord laces. 

I bought these boots and a three-season down sleeping bag with my high school graduation money in 1999.  In my 18-year-old mind this was an investment in the foundation of an adult life. I'd always have a place to sleep and dry feet to get me there. 

They made me feel grounded and strong and ready. Rain, wind, snow, heat, sand, rocks, cobble stones, mud, trail, sneaking though woods in the dark, standing for hours on end, running, climbing, schlepping, building. I never stubbed my toes. Lacing them up was my ritual of embracing the unpredictable, loving the idea that anything could happen. 

I was wearing them when a road trip ended in a dubious San Francisco apartment with blood on the walls and no bathroom door.

They were on my feet when I boarded a plane to South American alone, having no idea where my host family lived or who (if someone) would collect me from the airport when I arrived at an hour when, by all accounts, gringas should be tucked safely indoors.

I didn't have as many adventures as I thought I would. I fell into school and work but my boots fell with me. I can still feel the tread's vibration against the college's anti-slip stone-in-concrete paths as I walked in fine, misty Oregonian rain. Smell of soaked brick and foliage.  I feel the clunky movements I made waiting tables on the bistro's kill-your-back painted concrete slab floor. And then the illness came...

My boots are dusty now. My feet do not have the strength to lift them. The uncertainty is now always palpable, pressing like humid air. And yet... it is the uncertainty of confinement rather than that of freedom. There are no shoes for this. My challenges are not kind a person can walk/run/climb away from. Supposing a person could do these activities, they would simply carry the problem with them.

I don't know if I save these boots as a trophy or a memory or an embodiment of a hope that I will one day, again, live a life of problems solved by actions of rugged footwear.

February

The years roll by, mounting into decades. And still winter reminds me of you. 

Southwest gusts rip through the woods and in the crack of my barely-open window. Sharp, crisp February air before a storm. The clean, frozen smell of nights when snow crunches underfoot and the sky is obsidian black, thick with stars. 

It snaps me back to the old condemned pier, long since rebuilt. Standing against you in the dark on unevenly frozen snow. The lake wind whips at us, howling through the pines. I can feel your rag-wool gloves laced around my hand, still taste classic Chapstick. 

There are memories of us curled up under blankets with incense and Jimi Hendrix, but it's the sub-freezing, spontaneous late-night strolls that stay with me. Dark beaches of frozen sand and snow. Unlit streets icy and deserted, snowbanks piled high either side. Feigning lack of cold, getting snow in our socks, walking on the ice with an unconscious but deliberate gait that everyone who grew up here has. 

We never took a flashlight. Neither of us wore a parka. We were kids and thought we were tough, daring each other to blink. It felt real and true in a way that is only possible for teenagers. Everything as clear as the night sky. 

You finally admitted to being cold. My footing slipped a little on the ice as we walked back to your car. We couldn't decide where to go next. 

We lost touch long ago. I'm sure I don't know you now. But every winter the wind knocks me back to who we were all those years ago. 

Artifacts

Although I had several times stripped childhood bedroom of no-longer-needed possessions, when I desperately moved back to my parents' house I found old stuff everywhere. Wedged in the backs of drawers, notebooks with a few pages of writing, playbills, ticket stubs, a box of toys, old things of mine that mother had found elsewhere in the house and shoved in the closet. The debris of my adolescent life was the foundation for boxes of the adult life I'd just lost. I felt as though I were living in an archeological site. These were no longer my possessions but the artifacts a life and that life no longer belonged to me. Rather, I was sharing space with artifacts of me.

This blog is, in many ways, about the past. And about how the present becomes the past, the past lives on in the present and the threads that run through them, connecting them.  

It is also about how physical objects reflect one's relationship to the world. In many ways possessions are the physical evidence of a life, and they mark and measure the stages of a life and its changes.  

Perhaps I am stuck in the past and weighted by physicality. Perhaps I need to move on. Perhaps this is my way of doing that, albeit many years too late.   

As time passes I become more ill, finding year to year, that more of my possessions become artifacts. I set something down and realize months later I have been too ill to use it. Dust measures the distance between me and a time I was well enough. I try to be hopeful. Things go into boxes, archived, awaiting a remission. They yield space to ever-growing medical devices and medications. And I am living in the museum of my past selves.