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With a Master of Fine Arts in Creative Nonfiction degree (Goucher College, August 2014), I am looking at a new phase in my life. From 1992 to 2009, I served as Founding Executive Director of Miriam's House, a residence for homeless women living with AIDS. I left this position when Chronic Migraine Disease overtook my ability to do my job. Now I hope that a writing career will both accommodate the migraines and give me a creative, productive outlet. And soon, September 4, I will launch my Inkshares author page in a bid to hit the 1,000 pre-order goal in 90  days. The book I want to publish is "Nowhere Else I Want to Be," a memoir of ten of my years at Miriam's House.

05 June 2011

Wounds, Stigma and Compassion: 30 Years of AIDS

The 30-year / 30-million dead AIDS anniversary has me in a gut reaction that I cannot name.  It's so complicated: there is the deep, deep sorrow over the many women I knew and loved at Miriam's House, now passed away; the horrifying numbers (30 million world-wide); my anger about the ravages of the disease itself and the ravages of the stigma, judgment and shame attached to it.  But what I want to write about today is a view of AIDS from the perspective of living with a chronic, painful condition.

No, I am not equating living with migraines to living with AIDS.  But today, as I mourn 30 years of this epidemic, I am very aware of how much more difficult stigma and shame make living with a chronic illness.  There is - as with anything that others cannot or will not understand - some stigma attached to living with migraines ("You are just letting the pain have too much power over you."), and the consequent unemployment ("Why don't you at least work part time?"), but it's really not that bothersome to me - I am able to note it and move on.

However, having lived and worked with women living with AIDS at Miriam's House, I have experienced as close to first-hand as is possible - short of actually having AIDS myself - the stigma, judgment and shame that go along with the disease.  And I can tell you this: it makes so very problematic the living with pain, the chronic reality and the endless doctors/hospitals/ERs/medications.  As if living with AIDS weren't problematic enough in and of itself.

I experience anger all over again as I remember (names are changed):
* Alexa, invited to a family reunion in North Carolina as long as she would agree to stay in a motel rather than with family, as everyone else was doing;
* Viola, allowed to live with her mother but forced to eat with plastic utensils and paper plates and cups so as not to contaminate her family or their dinnerware;
* Victoria, who moved to the States as a 12-year-old when her mother realized that the health care in her native Africa could not keep her alive, but whose aunt and uncle kept in a small room just larger than a closet, isolating her from themselves and from even a semblance of normal teenage life;
* Terri, who was terrified that her family would learn that she'd contracted AIDS because she'd seen how they treated a cousin;
* The women with whom I sat for long hours in hospital emergency departments, and who - had I not been there to advocate and agitate for them - would have been shunted aside while care was given to others.  (This, I came to believe, had more to do with their status as poor African Americans on Medicaid than with their disease, but it was hard to distinguish and just as hurtful whatever the reason.)

There's a lot more to tell, but this post cannot hold it all.

I imagine how miserable I would feel if I had to hide my illness from friends and family; how devastating it would be to live in shame imposed from without yet intensified within; how I would struggle with judgment even as I tried to accept the limitations of the migraines. 

And I remember, as I do so often, the incredible grace with which these women lived with their illness:
* Alexa, who never failed to ask me if I had a headache and who, with genuine love and concern, prescribed rest and stress-reduction;
* Viola, who eventually moved out and into her own apartment, proceeding to care through her final illness and death for the mother who had handed her those plastic utensils.
* Victoria, ill and nauseated and half-conscious in her hospital bed, asking her visitors how they were and making sure they all had a place to sit;
* Terri, with whom I spent long evenings watching gospel music shows and comic movies while being entertained by her running commentary;
* And the women in the ERs, watching me tire and telling me to go home despite their fear of being left alone in so vulnerable a state.

What am I trying to say here?

I do thank God that the stigma of AIDS is - at least in this country - not as bad as it was 20 or 30 years ago. Yet still it exists here, and is virulent in other countries. 

We all, to one extent or another, experience heightened awareness and even fear in the face of what appears to be other than normal to us.  I suppose this could be some sort of ancient survival mechanism left over from when most of the "others" we encountered might kill us.  Yet our evolution as a species has brought us to a place in which we can simply note the immediate and unbidden reaction, allow it to pass, and take a second look into our own hearts and into the heart of the different other.

What am I trying to say?

There is no different other.  There is only we.  There is only the human state, with its fears and isolation and wounds.  Perhaps my wounds are more visible than yours; perhaps your wounds are more socially acceptable than mine.  No matter: we are all wounded, we all hurt.  In that, we are no different.

We are no different in our need for compassionate understanding and forgiveness.  We are no different in that, given compassion, we blossom, we become more able and eager to extend compassion to others.  We allow that within us which we have hidden through shame and fear to become forgiven and thus transformed.  We become less inclined to stigmatize differences, and more ready to celebrate similarities.

We discover that our wounds and shame become transformed into loving compassion for self and others: still wounds, perhaps, yet also widely opened doorways.  But do not take my word for it: go make a friend of the one you consider the other.  Allow her to teach you.  Give your heart permission to let him in, to show you his humanity and how similar you really are.  Extend your hand just a small distance toward her and experience how generously she - however long it takes - reaches out to grasp you. 

Allow her to teach you that we are all the same.


I would love to hear from you.  Please use the Comment link below, or email me at carold.marsh@gmail.com.  Thank you.

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