Polio Over Coffee

Coffee -at -BarrioThis morning I spent 45 minutes or so in our local bakery. That, of course, generated a journal post.

The other day I was speaking with the Polio Psychologist at Spaulding Rehab. As we were chatting she asked how it was to find myself aging more rapidly than my friends, and for this to have been of rather sudden onset. I considered this question as I sat in the bakery, surrounded by people much younger than myself, one of whom was clearly temporarily disabled. (The psychologist insists, rightly enough, that everyone who is not disabled is “temporarily able.” Continue reading

Sofa Journeys

Winter-EveningThis winter’s ice and cold, along with some Post-Polio and other health issues, have kept me pretty much at home except for work. The majority of my journeys have been through books read on the sofa, where I’ve been curled up in an electric blanket.

Recently the psychologist at the Polio clinic suggested I read Breath, by Martha Mason. This is a memoir written by a woman who at age twelve contracted Bulbar Polio; she spent the rest of her life in the iron lung, dying in 2009. She is believed to hold the record for most years spent in the iron lung, 61. Her story puts my own Polio experience into perspective; although I spent a week or so in the iron lung, I am unlikely to have to return to it (a fear I share with many of those who used the iron lung). Continue reading

The Olympics, Polio, and the Medicine Wheel

Snowy-Morning

This is a reblog from my Dreaming the World blog.

I am an elder, and as such I am given the task of teaching and supporting the young. On the Medicine Wheel of this lifetime I am in the Northwest, the place of honoring the challenges of my life, understanding them as best as I am able, and sharing what I have learned with others. Perhaps you will share your thoughts about the thoughts I offer below; I would greatly value that. Continue reading

Life At the Interstices

Museum of Science, BostonLast week’s post now seems lifetimes ago. The past week has been occupied by an outpatient surgery, and as my surgeon predicted, I have been slow to recover. The surgery lasted about an hour and the effects of the anesthesia and trauma will likely last a couple of weeks. This is day five and the fog remains thick, although it lifts periodically. I have a couple of more surgeries coming up as both wrists need carpel tunnel repair due to overuse, the classic Polio challenge. Luckily they require only regional anesthetic so the recovery should be considerably easier. Continue reading

Cold

Icy-WoodsIt has been a while since I last posted. I’ve been focused on managing (and as much as possible, enjoying)  the Holidays and winter. The Panic is much reduced, although the underlying anxiety remains a problem. The pressures on my Bi-Pap are now about twice what they were three weeks ago, so I seldom wake up gasping for air.

As I write the temperature has risen to 50 F and rain is falling. Last night the rain froze on contact so the world was briefly once again encased in ice. (We have had a week of frigid weather so the ground temperatures were well below freezing.)

For the past two winters I have been progressively more cold intolerant. Once I become cold I struggle to warm. (Oddly, the effect is to have cold linger at my core so that I warm from the outside in.) One of the strategies suggested to me is the use of an electric blanket. I’ve taken to sitting on the sofa before the wood stove and wrapping myself in an electric blanket, set at 4. The result is I slowly, over the course of an hour or so, begin to feel normal. Continue reading

Breath

Ice-StormI’ve had a lesson in breathing this week.

For a couple of months now I have been struggling with Panic. Lately, I’ve been waking up in the early morning, gasping for breath and filled with terror. A few days ago I found myself with an unthinkable longing for the comfort and safety iron lung! Finally this week Jennie and I got in to the sleep clinic. I also called the Pulmonologist. By the time we arrived at the clinic the doctors had conferred. (One of life’s great challenges is getting providers to speak with one, and coordinate, my care.)

The upshot of all this is recognition that the muscles that move my lungs have weakened. Cold weather greatly exacerbates the problem. We are now in the midst of incrementally increasing the flow of Bi-Pap. After the first night I felt much better, although I still awaken short of breath early in the morning. I imagine we will adjust the flow upward. Continue reading

Fatigue, Accessibility, and Inclusion

Sunset, Lake ChamplainI’ve just returned from a meeting of our city’s Accessibility Committee. The committee was reformed several months ago, after a lengthy hiatus. The committee has been active, even through the summer. Wondrously, the city and its various departments have been fully engaged with us, making our volunteering rewarding, and offering us opportunities to create meaningful change in the community. The committee’s meetings are engaging and citizen input is welcome and crucial to the process.

Now as the evening gathers, I am at home. Yesterday was a splendid day as Jennie and I accomplished the large task of organizing much of the garage. I awoke energy filled, and the day unfurled with little effort. What a joy! Continue reading

The Meanings of Disability In the Arts

Snowy DayI grew up in an Abelist era. This was particularly true for the culture’s position in relationship to Polio survivors. We were taught from the moment the disease began to ease its grip on us that we were to recover completely, and anything less than a full recovery was a failure. We were required to pass for able if we could. We Polios were subject to an endless parade of those who had overcome disabling experiences. We were told both implicitly and explicitly that anything short of the superhuman and miraculous was unacceptable.  If disabled bodies were too damaged to pass, we were pitied and often, isolated. We were both public spectacle and hidden away, invisible. If the survivor was male and crippled, his life trajectory was seriously threatened; employment and sexuality were conundrums, and marriage questionable. Not surprisingly Polio males attempted, and committed, suicide at high rates. Competent mental health services for disabled women and men were virtually nonexistent. Continue reading