January 26, 2013

Here I am again after another long absence. I tell people sometimes that I feel like the author Fran Lebowitz, who has spent more of her career talking about not writing than actually writing anything for publication. And of course, I am neither published nor anywhere near as skilled as she.

For me this is a time of transition, but I don’t know the destination. I have two jobs, one as a full-time caregiver for my partner Freddie, the other as caretaker and editor for my late friend Keith’s web sites. The future of both positions is unclear. I wait for Freddie to get better or get worse, pondering our future lives. I wait for Keith’s estate to be settled, pondering my future career options while also managing a tight budget and financial uncertainty. Each day is lived more and more in the moment as I try not to worry about things I cannot control.

Freddie had six short to medium-term hospitalizations in 2011, and a somewhat lengthier stay in 2012. His problems are – to use my new favorite term – “muti-factorial.” A Type 1 diabetic since childhood and a long-term HIV survivor, he has been officially disabled since the early 1990s. When we met in 2000 he was doing relatively well but then fell off a ladder just days before we moved in together. Our life as a couple has revolved around his health, increasingly so in the last few years. There’s been a stroke. A pulmonary embolism. A heart attack and then quadruple bypass. Surgery on his cervical spine. And over all of this, increasing fatigue and mild cognitive impairment.

As this has progressed I am now the one in charge of everything, from medical matters to walking the dogs to cooking the dinners to cleaning the commodes. It all comes down to me.

There are times when I feel resentment or anger, or more often, a simple desire to escape. I have come to recognize, however, that my feelings are simply that, feelings. They do not define me or control me. My feelings come and go. They are not the essence of myself. Once I recognize them and express them in some appropriate way, my decisions and actions are what truly matter.

Beyond that, I choose to cultivate gratitude. I know that I am lucky to have the opportunity to work from home and set my own hours. I am lucky that Freddie is still alive. I am lucky that, in spite of financial challenges, we are still in our home, can pay our bills, keep our dogs and cat happy, and keep food on the table. And the dogs and cat love us so. For all these things I am grateful.

And thus I choose to carry on.


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