I’m lucky to count among my professional friends, Elizabeth Genovese, M.D. (internal and occupational medicine). We met several years ago on a committee charged with creating suggestions for improving the Social Security disability evaluation process.
For the past year, Elizabeth has been living with a rare and difficult to treat cancer. Her belly is terribly swollen – she says she looks 9 months pregnant and she’s no drama queen – and her fatigue, nausea and overall state of health is horrible by any standards.
Our relationship was primarily professional, until recently. She generously included me in group emails that explain the challenges in getting the care she needs, the strain of trying to continue with your life (including seeing patients, speaking engagements, taking care of her children as a single mom and being a good friend) and the emotional roller coaster of it all. She said at the outset that she hopes her experience to shed light on the difficulties that cancer (and any patients with a chronic illness) face.
I’m including parts of a recent email that I think you’ll find worth reading. I’ve cut some detail here for the brevity of this blog post.
Whether you live with life threatening disease or just disease that threatens the fabric of your life, remember Elizabeth’s words when you ask yourself, “How can I go on?”
“The week was kind of a blur. It was about clumsily dragging myself out of bed in the morning, taking whatever meds or supplements I needed, trying to find something to wear that wasn’t uncomfortable or made me feel like a whale, and then trying to adjust to the increase in shortness of breath, overall pain, and LACK of mobility caused by my larger abdomen and get something done.
All of which was worsened, of course, by my leg weakness. I had hoped that I would be able to go on a vacation with my children (as originally planned) late July, but it was clear that I should plan to have them go without me – so I did.
On Thursday I tried to change a light bulb over my bathroom sink and didn’t have enough leg strength to put one foot on a stool and push myself upward to do it. I almost (but didn’t fall) and looked into the mirror at myself standing in my bathroom, breathing heavily, etc …… And I started crying.
And then I went into my closet and looked at some summer dresses I had bought last year when dragged out shopping by a friend (I hate to shop), my suits, the clothes that DID fit three months ago and don’t fit now (which meant more shopping), and all the symbols of what I had planned for my spring, summer and fall thateither didn’t or wasn’t going to happen – maybe ever. At which point I got even more upset as, the way I saw it, being alive, etc the past 6 months had been mostly about dealing with continuing disappointments and losses, and I had just reached an emotional point where I just couldn’t deal with it.
And then – and this is the “moral of the story” and why I told you all this — I went and got the DVD I had been watching, put it in the DVD player, and started doing leg exercises. I think what differentiates those with chronic pain (I obviously think about these people a lot given my line of business) who do well from those who do not is the ability of the former to acknowledge their losses and then find something, ANYTHING, that they can do (and make progress in) that will give them some sense of control over their lives and hopefully also help them make progress in their functional activities as well.
I know this might sound bizarre. But I have been in really good spirits since I made that shift last week. I’m going along with what is happening as part of a “new approach to life” and see what positive things it brings to me. And it already has – especially in terms of new friends – rather than mourn my losses. I don’t have the expectation that I will be “back where I was” in a different situation for a LONG time. I don’t keep doing things and asking – ” Will this allow me to go back to ……?”.” Elizabeth Genovese, M.D. June 28 2009.