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Patty Coleman died a week ago Saturday of “cardiac arrest.” As Sandra points out – everyone dies of cardiac arrest – ! When she first came to the University of Maine campus, she worked tirelessly to organize students and faculty around setting up a quality MSW Program. She was diagnosed with MS before she was 30, and determined to achieve all she could in whatever time was given her. She was a charismatic, complex and often difficult person. She left many achievements behind, and she also left me, for one, with many questions and few answers.
The questions have to do with personality, personality changes in the course of a difficult illness or life situation, and bearing witness to a life.
Because of a difficult and complex series of negative experiences between me and Patty, I left our friendship over 10 years ago. Yes, she had showed me photographs of the lesions on her brain, and yes, she had talked about her cognitive and physical deterioration. But the truth was that when she behaved and acted in a way that appeared to me to be the ultimate betrayal of our trust as friends, and even as human beings, I could not understand and I could not forgive.
I have made peace with that rupture in my universe that occurred so many years ago. I was able to attend her funeral and bear witness to her life and her achievements. I was able to see the love her family had for her, especially the young ones. Most importantly, through the medium of words and photographs, I was able to see a common 1950’s childhood.
I am left with great sadness and no regrets. When people behave badly, even when there are extenuating circumstances, this bad behavior harms others, sometimes sending their universes spinning out of control and leaving a legacy of pain and wonder.
My sadness is that through the combination of personality, illness and circumstance, such an isolation and distancing occurred – not with regard to everyone, of course, for there were others whom Patty did not impact in this way.
I lost my friend many years ago; I bear witness, though, to the fact that we were friends and that we loved one another. And that she lived and achieved much and suffered from a devastating disability that had many circles of impact.
I wish only peace and release for you, Patty. We had a common history, common values, common goals. We also possibly had common misunderstandings of friendship and love. But here, now, at the end of it all, I can say that I did love you, and will continue to think of you as I puzzle my way through the rest of my life.
As an educator with a few differences that might be called “disabilities,” I think a lot about continuing my work from this side of the desk as well as from the student side of the desk. I could have gone on disability many years ago, and chose not to. I believed that I would be able to work within my institution and manage my job and life.
Sometimes it has worked, and sometimes it hasn’t. This week, it isn’t working.
I have missed three days teaching, due to a cold, exacerbated by diabetes and weak lungs. I am making the difficult decision about attending AUCD in Washington, DC, a highlight of my year. I am feeling guilty about possibly not going, because the wonderful Lu Zeph has paid my way, and the wonderful Valerie Smith would have to present on Universal Design without me.
But I couldn’t breathe last night, and I just don’t get better the way others do – again. And I am getting older and just don’t have the energy to travel with my C-PAP, my prosthetic knees, and my documentation. To be at the airport by 4:00 AM, by cab, since I don’t drive, which means I will not sleep. To have everything in place for my companion animals and their caregivers. Sometimes these things can be obstacles, no matter how hard I try.
I worry about letting down my students; I am grateful for online teaching because I can do it as I have energy, and am awake.
I know I have a lot to offer, and certainly will continue going forward. This is not about self-pity or about looking for sympathy. It is about a reality that I, as a dedicated and persistent educator face, that sometimes confronts me more intensely than others.
ok, so now that we’ve voted, what’s next for education and access to education? What is new or next for access to Higher Ed, when the financial picture seems to be limiting access and choice? Does universal access imply a change in the way we finance Higher Ed? This has always been a major barrier to inclusion. I have to wonder how the new GI Bill, in concert with the ADA, might be a way of changing the dialogue and practice of inclusion here in the US.
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