Thursday, April 03, 2008

on being 'a square peg'

I have been thinking a lot lately about cancer as a chronic illness. This is how my oncologist defines my cancer. My illness will be with me for the rest of my life and I will likely always be in treatment. But my cancer is being managed and I am thinking about sticking around for a long time, and living really well while I'm doing it.

And the truth is, that, much of the time, I feel very well indeed.

Dr. G. often refers to the various tools at his disposal. Some day (hopefully a long time from now), this particular treatment regimen will stop working. When that happens, Dr. G. will use another combination of drugs to keep the cancer at bay. And the longer we can keep one regimen working, the greater the possibility for medical breakthroughs.

More of us are developing cancer at younger ages. And more of us are living longer and well, despite fighting metastases. I have written before about the feeling of ennui that tends to beset me after chemo.

My life looks quite different then it once did and I am still struggling to figure out where I fit in, as a productive member of society. I have been doing a lot of work on this and will continue to do so but it's not always easy.

Nor is it easy to stand by and watch while friends who are overcoming breast cancer are treated callously by an employer who refuses to acknowledge the need for accommodation. To see these very talented women, who have always worked very hard on behalf of their employer being treated so shabbily is depressing in the extreme.

I came upon this article today, written by Jennifer Jaff, a lawyer who runs a non-profit called Advocacy for Patients with Chronic Illness (based out of Connecticut) and who herself lives with Crohn's Disease. It's called Square Pegs in Round Holes and it really resonated with me:

"Despite all the talk in the press about the cost to our society of the health care costs associated with chronic illness, nobody really looks at us and tries to fashion solutions that work not only for those in wheelchairs, the blind, the deaf, but for those of us with illnesses that come and go. They talk about preventive medicine, but that does nothing for those of us who are too sick to leave the house, but otherwise willing and able to contribute whatever we can to society.

Thus, we are left trying to fit ourselves into a definition of disability that doesn't fit us. We are society's square pegs trying to squeeze into round holes. It doesn't have to be this way."

At the moment, I am not contemplating a return to my workplace (and for the record, my employer is very open to accommodation. I had negotiated a very gradual return to work before I was diagnosed with the mets). But I do feel strongly that for those who are willing an able to do so, coming up with a workeable plan for accommodation should become as common place as any other basic workplace right.


Mom2Amara said...

Hi my dear square peg friend. I wish you peace this chemo week.

Enjoy the book!

Rebe said...

I was conveniently fired for some other fabricated reason. To be fired for having cancer is outright discrimination so I doubt many people are told "hit the road you sick person". On the flip side, I wish there was a legit home based business that would reach out to those of us that could work flex hours around treatments.

I start radiation next week and I'm still not sure how I'm going to schedule work, school, sleep and a life around the daily trips. Uck!