We had been married for just four and a half years when this started. Carl was just 31 years old. When I look back on all that happened and how it left me not able to fully participate in a young couple's life together, I am filled with amazement and gratitude that he stayed with me and cared for me throughout. Now that we've been married 19 years, spending much of that traveling and collaborating together, I'm proud of who we are.

Of course, it has not been easy. 2008 brought a whole new set of challenges. Much like my own descent into the hell of chronic illness, Carl came home one evening from a networking event not feeling well. Just like me, what seemed like a passing thing started dragging on into months of pain and fatigue. Just like me, after suffering an acute onset, the realization that many symptoms and not feeling well pre-dated the so-called onset. Just like me, diagnoses has been fraught with difficulties, setbacks and challenges.

But in 2008 I came to realize that my caregiver and hero was now going down a path I wouldn't wish on my worst enemy. In some ways, his illness was harder for me than my own. Because I knew what was coming and I feared it.

 

Carl: 

Pattie has been ill since 1997, while we were still in school, and I have been her caretaker throughout.  I have not worked solely in this capacity, but I have been on call 24 hours a day.  However, looking back, my own adventures in chronic illness could be said to date from this time as well. These symptoms have grown worse over the years.  I have been misdiagnosed several different and insulting ways (I get insulted easily when I am told that I just don't concentrate as well as the good children; I know full well that I do). In 2008, I moved from the vague phase of "something seems wrong" to the so-called "onset" where something was definitely wrong. I went from an active, athletic and energetic person to someone who was in extreme, daily pain, experiencing frequent fatigue. Still no one seemed to be able to figure out why. Not knowing "ended" when I was finally diagnosed correctly in 2009. While a diagnosis cleared the confusion over the issues at hand, a long and unproductive treatment period lay ahead.

That the illness is "not my fault" is not sufficient consolation, if only because Pattie deserves a coherent partner in our pursuits. But a Catch-22 is set up: to apologize for my illness is beneath me, but for matters to be set right, to my satisfaction, I still think getting back on the career track and building a significant portfolio with Pattie and on my own, is essential.  I don't want to prove I was sick.  I want to prove I am capable. 

Perhaps "legacy" is a better word than "career" for what we hope to initiate and maintain.  The lines dividing "text," "art," and "culture" are blurred into unrecognizability in this post-postmodern era.  The reflexive element of human existence is immediate and has implications of some interest to me: say what you like about people, what they produce is impressive.  Baudrillard has suggested that the "hyperreal" supersedes the real and argues well on the point, but I am less ambitious: I suggest only that what you think of me is perhaps noteworthy, but what you think of my work is, and I think there is little need to "argue" the point among literate people, personal. That my health has taken a significant beating early in life is not as troublesome to me as the possibility that my, and our, body of work might not become what it could have become.

 

WHY DO THIS BLOG?

If you are the sort who thinks arguing with a person with disabilities defies etiquette, you are going to get little out of our work. Since finishing school, we have built a career around cultural production.  We find it difficult to answer concisely when asked what we do, as the term "public intellectual" is stuffy, inaccurate, and presumptuous.  Nonetheless, we have been on a career course for over a decade now, and rigor demands that we engage in a more spirited level of discourse than is considered consistent with polite society. The fact that we are both disabled has brought more than a little inconvenience into our lives, but the real suffering has been in terms of how we have been handicapped in pursuing our craft, in the same way that to die is not a dreadful thing to have happen in comparison with never to have lived.

The underlying assumption in almost everything we've read on the Net is that one member of the dyad is well and gives care to the sick member of the dyad. Even Googling about couples and disability brings up websites on how a marriage can survive when one member is sick or on dating sites for disabled persons. We find it hard to believe that we are the only couple on earth that has two people dealing with chronic illness. There is an obvious space that needs to be filled, an obvious experience that needs a voice.

If all the usual couples' issues are amplified by illness, dealing with dual illnesses makes them grow exponentially. Money, housework,  sex, intimacy, and care are complicated by feelings of being a burden, being inadequate, wanting to care, but being unable to do so. The background to all this is the chronic nature of the situation. It doesn't get better. No matter how virtuous we are, how much we take care of ourselves, the illnesses are in the background, always waiting for another chance to flare up, always lying underneath the surface.

The social contexts to these issues generally exacerbate them.  Healthcare charges and lack of insurance may be foremost among these issues. The way "making a living" is constructed in our society is not compatible with the nature of chronic illness. Gender role expectations can make things complicated, especially for a chronically ill man. Stigmatization of chronic illness, disabilities and aging shape social relationships and limit our lives.

So, the field is rich with much to explore. We plan to be sometimes practical, sometimes theoretical, sometimes microscopic, sometimes grandiose. We plan to be specific, honest and open. We bring to the table a lot of knowledge about how organizations work and how dyads work. We bring to the table skills and talents.  You may find that our disabilities are the least interesting things about us.

We also plan to celebrate our survival and the full and rich life we are creating in spite, and maybe because of, all of the above.  We hope by doing so, we can encourage other couples to find the same.