**This entry is a departure for me, and I hope my intention will be understood. In coming to terms with my own body of work, I hope to connect more, and have others consider what limits are imposed on us from physical, psychological, and cultural circumstances. I have never been comfortable discussing my limitations, but I hope that others will relate to whatever limits them and engage in how we can expand the possibilities for productivity and living creatively.
UNCLE! I have been wrestling with my physical difficulties for over fifteen years. Of course I must keep wrestling, as autoimmune disease flares can be so difficult to withstand, much less manage. Even in between violent flares, (or even less violent flares) during supposed remissions, I don’t feel well—just less bad– and can medicate to be vibrant for a few hours at a time. If I am very careful, and exclude certain activities and include hours of rest, I can participate in limited activities and celebratory events, and no one would know anything. It is always carefully orchestrated. To complicate matters, I have had (and continue to struggle with) excruciating and debilitating spine problems, that have made normal activities anything but normal. I have preferred chairs, and shoes and bed and pillows, and have tried so many therapies and remedies (and surgeries). I have always done modest exercise and eaten organically. I do all the right things, and every day is such a struggle. I have had to acknowledge my limitations, as they have interfered with home and work and my abilities to participate, especially because I take every effort to not look compromised. I am blessed to have great support, and my spouse’s insurance, and I put myself together every single day. That’s the big accomplishment. I don’t want to look (or sound) like I feel. Often, I can’t even answer the phone, because I don’t have the energy. Usually, I have to get myself together, have some caffeine before conversations, so that I can fully engage. Then I am spent.
My work history has been challenging. I have only been able to work part-time, and often I have had to stop to recalibrate, as daily routines for most people are just too much for me. For well over a decade, I doubted myself. After so many years, I saw that when I have the “normal” ailments that plague people, I am better able to deal with those, than with my default body. The hardest part, though, has been feeling unproductive and having to ask for help. That is a source of shame for me. I confess all of this because I know that there are so many people who struggle with an array of difficulties that may or may not fit our conventional categories of ability or disability. There are so many people with more seriously challenging circumstances than mine, and with more serious conditions than mine, and that has always made me question my own capabilities. We work to live, and many people live to work. I have just been working on living and have tried to maximize my unspectacular life’s work.
Thus far, my life’s work has not been published or patented, and probably not even downloaded. I have sought to share my education and appreciation for the arts with others, especially with adolescents, who even in the best of circumstances, must navigate tumult and difficult terrain . I have taught various subjects and students in a variety of educational settings, all along the spectrum of learning abilities. It’s not sexy work, (nor status work), and has often been fraught with frustration, as adolescents are intuitively gifted at frustrating adults, but I have gotten to learn and improve along the way. There are many, many bodies whose work I have supported and guided, and I hope illuminated, at least from time to time. As for my body of work….even with all the compromises and interruptions, I have worked to expand myself and others. At this point, my body is an awful lot of work. But there are still ways to participate, expand, and contribute; perhaps remotely.
I hope you are reminded that there is much joy and struggle that we often do not see when meeting others. Looks can indeed be deceiving. I am fortunate in so many ways, but I long to contribute more; to continue educating myself and others; to create connections and strengthen my community, and to support creative living and learning, even with this body of work.
2 thoughts on “Body of Work”
Wow, thanks for the moment to pause. Yes, what we see on the surface when we encounter our friends, neighbors or co-workers may have very little to do with what’s going on with them. What you describe with the autoimmune diseases remains hidden from view but is a reality for so many people. It takes courage to stay strong and positive in the face of health issues. Mental health issues are similar; invisible to others but obvious to those who are close to the person who has one. Keep fighting the fight!
Thank you, Sharon. I was thinking of mental health issues as well when I was writing about my own physical issues. We have quite a way to go, but I believe that how we treat and deal with mental health is ripe for transformation. I think we will begin to deal with health as an all inclusive sort of health–body and mind. Meanwhile, I hope to engage as many as possible and have a conversation about creative living and learning and productivity. These are issues for individuals, but also for organizations and places of business.