A Sista With Spondylitis

This is a space for support and information for black women with this rare arthritic condition

Tuesday, December 23, 2008

the end of love
the end of ambition
no more the possibility of tender embrace
no more the possibility of companiable age
no comfort to found in dusty roses
no unalloyed memories of past romance
the muddy stream slogs where tears once ran
tell yourself that some future is possible
find your solace in the smiles of saints
i'll not not go
not here
not now
not here
not now

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Thursday, May 29, 2008

When the first intimations came
You embraced me for the moment
But put blinders on our future.

I could have made a different choice in that moment,
insisting that to keep me
you had to face your fear
of my most fearsome possibilities.

I could have been brave and insisted on love without condition.

Knowing that if you did not come with me,
My own self-regard would lead me to the right companion.

Instead, I let my hurt lead me.
I traded love for blind assurance.
Told myself it would be good for my soul.

He let me shed my tears.
Cheered the changes that he understood.
I trusted him, although I did not understand
that he had not seen me fully
thought our lives could grow in parallel, not intertwined.

Did not realize that he would have to change.
Did not accept my reports from the doctors.
And change was not in him.
And as my body froze, bent and cracked.
He concluded that my tears were artifice.
Wondered why I could not be the way I was
When he was having fun.

So I let hurt lead me.
I traded blind assurance for cold reality
Told myself that self-nurturing would be its own reward.

You went on with your life
Pausing, on occasion, for
a backwards glance,
a polite wave,
a quizzical look.
It was understood between us
that you would be a gentleman, regardless.

I hear warm talk of love around me
I think about how easily my chance was lost
The loyalty of friends is now my solace.
Romance is now a memory
of secret spaces
that echo in my heart

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Thursday, January 03, 2008

When you have reaced a certain age, and your love has not come back to you in quite the way that you expected, you enter what can only be described as a looking-glass world. Having invoked this metaphor I do not know that I can sustain it, but then that is part of the point of this musing. We form our alliances and judge each other based on the degree to which our interactions match the master narratives in our minds, and when someone's performance fails to adhere to the character progression and through line that we have assigned, we feel betrayed. We experience cognitive dissonance, and we have to abandon either the narrative or the relationship to keep our world whole. Either way, there is a price to be paid, both in the weight of broken dreams and the distance between you and the communities of functioning people in which you once felt yourself to be a member.

I should be clear, before I go further, that the love of which I am speaking is not necessarily romantic love, although that, too, can be part of the picture. The failure of a marriage, with or without the actual bill of divorcement,casts you into your own unreality show, even though it happens every other wedding day. No, I am speaking of a deeper disconnect -- the sense of isolation that comes when those closest to you reject your vision and values -- or worse yet -- can't see you past their own pain over what your illness has made of you.

Mothers supposedly go through an identity crisis when their children come of age, because they have to redefine their place in the world beyond that of baby-raising. Men, traditionally, are thought to experience a similar crisis when they retire, because they were taught to measure themselves by their work.

But what is the name for the crisis that ensues when you still have the responsibility of supporting and nurturing a family, and the skills to earn the money to do it, but each day, your body loses the ability to function independently? And let's say you come up with a creative solution, right out of Kate and Allie or Full House, and you co-house with a friend or two who are willing to help you raise your children so that you can maintain some independence and dignity instead of going on disability and putting yourself on welfare, the way the social worker told you you would have to before you could get affordable housing. Well, now, you've stepped outside the narrative for your life, and the world must find a new way to construct you.

Did the writing staff at Kate and Allie ever consider doing a show about the possibility that neighbors, landlords, employers, relatives might think they were lesbians? (The point here not being the nature of their private relationship, but the need that the world's need to categorize and sort, accordingly.) Would their newfound realization of the straitjacket that is heterosexism turn them into activists, or push them inward from the world, lest they find themselves even more directly targeted?

Or perhaps Allie could become partially incapacitated -- you know, a semi-IN-VAL-ID, so that neighbors could decide that Kate was her caretaker, or her mother or, or, what exactly? And what toll would it take on their friendship, and how would it change them?

And what would Allie's children do as they struggled to translate her example on to their able-bodied lives?

And how would Allie age -- what would she look forward to -- she who had read "Goodbye, Mr. Chips," as a child, and who had imagined old age in a quiet cottage on he edge of some campus, filled with the delights of reading, and accented by regular visits from friends and some timorous new student full of awe and shining with possibility? What would happen when crooked spine made people think her decades older than her real age, and the only cottages in her financial reach were in places where even the able-bodied fear to tread? How would she maintain character, hold fast to her connections to life and community?

Perhaps she herself would become the Cheshire Cat, her presence marked only by her cryptic voicings and the shadow of her ephemeral smile.

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Saturday, June 24, 2006

Having lived with AS for 20 years, I've grown fairly accustomed to the precautions I have to make when I travel. When I'm going to an unfamiliar place, I often call the airline or rail line I'm using to arrange for a wheelchair so that I can avoid long and tiring walks to baggage claim or through large terminals. If I think I need it, I arrange for an accessible hotel room. When I used a wheelchair some years back while waiting for my hip replacements, I always checked the accessibility of my routes and destination in advance.

I've generally had very positive experiences as my job has required me to travel all over the country in recent years. Airport, train, hotel and bus personnel have been supportive and helpful, in general. But yesterday I had an experience that made me realize that I was getting just a little complacent.

I had an errand to run that caused me to go Philadelphia's Holmesburg Junction station, a stop on the R7 commuter line that runs between Philadelphia and Trenton, New Jersey. SEPTA, the agency that operates the station acknowledges that Holmesburg Junction is not on its list of accessible stations for that route, and this picture makes part of the reason clear: you have to be able to climb steps to get to the platform, at least on the northbound side.

Yesterday, around high noon on one of the hottest muggiest days so far this summer, I climbed the steps with relative ease and was prepared to board my train. As this image shows, because the platform is low relative to the train, even able-bodied passengers have to use handrails and a wooden step to get on or off. Earlier in the day, I had successfully disembarked from a southbound train at the same station.

However, when I stepped on to the wooden step to get on the northbound train, I found that I could not get my foot up on the bottom step of the train. I asked the conductor whether he had a stepstool. He said, "This step [that we were standing on] is all they give us." I tried again to get my leg up to no avail. I asked the conductor whether he could help me, thinking that if he could brace me, I could use my arm strengh to hoist myself on to the step in some way. He stared at me. Finally he said, "Make a decision; I've got to go." I said, "What can I do? I can't get on the train?" He said, "Call Para-Transit" -- assuming, I suppose, that I knew what that was or how to take advantage of this service. "I'm stranded," I said, backing away from the train. He just looked at me, hopped aboard, and the train left.

There was no ticket office; there was not so much as a telephone posting a number that one could call for help. Fortunately, I have family in Philadelphia and this is the age of cell phones, so I was eventually rescued. I also happened to have a bottle of juice with me so that I could keep myself hydrated as I waited in the heat for help to arrive. But I had plenty of time to wonder what would have happened if I had not had those resources? And is a stepstool such an unreasonable thing to ask for? After all, SEPTA's guidelines for disabled passenger state that people who can stand, "can request to use ramps or lifts for boarding."

Have others run into this problem? What did you do?

Cross-posted at Ankylose This!

Sunday, May 22, 2005

Angela Odom was recently diagnosed with lupus. On her blog, she recently voiced a complaint that I can certainly understand: people with chronic illnesses need a community to help them understand and cope. I was fortunate to learn about the value of community when I worked at the Fox Chase Cancer Center as a young woman. When I was diagnosed with Ankylosing Spondylitis in 1986 at the age of 29, and especially when I became pregnant with my second child five years later, I desperately wanted that kind of community -- not only for myself, but for my husband and children as well. It was not to be. My doctors had never treated a woman with severe AS, much less a pregnant one. The local Arthritis Foundation had nothing to offer, either. The AS websites that have sprung up in recent years have been helpful in showing me that there are other people out there, and many of us are finding ways to go on with our lives.

And in the end, that is what we all have to do. Play the hand we are dealt, and do the best we can with it.

Thursday, April 07, 2005

I was switched from Indocin and Asulfidine to Vioxx a few years back because I had a hint of liver damage. When Vioxx blew up last fall, I was switched to Bextra. Now, the
FDA wants Pfizer to take Bextra off the market. I haven't had serious heart problems, but then most of my other risk factors are low (I am 48 now, so that is not so good.)

Cross-posted at Ankylose This!

Monday, November 22, 2004

I'm not alone in the blogosphere. I've just accepted an invite to join Ankylose This!, a group blog devoted to people living with AS. Check them out.