Appreciating the Dark and Light Sides of My Life

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by Kim Tocker |

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Scleroderma and the Ordinary Girl

Living with scleroderma means I need to make many important decisions to function, from treatment options to whether I’m well enough to get out of bed. Choices, choices, so many choices. It’s a miracle I get through so many on any given day.

I got to thinking about all the alternatives I’ve had to select from over the past few years, such as when I took my teenage son shopping for shoes a few weeks ago — which was a miracle in itself. Not only is it uncommon for me to have enough energy for shopping, but also he’s way too cool to be seen out with his mother, especially when shopping for clothes.

He tried on shoes, deliberating among the styles and colors until he eventually settled on two pairs. Then came the agonizing choice about which of the two to buy — he weighed the pros and cons. In the end, he chose to compromise on the color he wanted in favor of the style. He was happy with his choice.

As I watched, it occurred to me that it has been a very long time since I had such a pleasing group of options to choose from for many of the decisions I’ve had to make. In fact, living with scleroderma means that the choices I am generally forced to grapple with are most often between undesirable and unreasonable options. 

This is particularly true when it comes to medications. I’ve had to select between taking a heavy immunosuppressant — which means a compromised immune system that cannot cope with illness — as opposed to not taking it and risking rapid disease progression, plus the possibility of life-threatening pulmonary arterial hypertension. Excellent, yes. I’ll choose constantly being unwell as opposed to increased risk of getting a life-threatening complication.

Then there is the pain relief dilemma. I decided to take opiates, which make me constipated. But, hey, better to be in less pain and put up with all the delightful issues chronic constipation brings. Of course, I could take yet another medication for constipation and risk the side effects of that as well.

Shall I go for a walk today? I’ve been unwell, and it might make my weakened immune system worse, so no. I’ll rest, be bored, and won’t stretch my poor old body, so I can keep getting out of bed until I’m fully healed. Whenever that may be.

The choices and compromises seem unfair and without reprise, and there are many of these double-negative decisions to be made most days. But there is a silver lining that prevails. There is a growing experience that comes with the constant negative options, one of pure and simple appreciation. 

Being grateful for feeling better after being unwell with a cold, and taking a walk after two weeks of isolation and rest — the feeling is euphoric! In fact, all the very small, simple positive things in life become amplified in beauty. And so, my feelings of thankfulness and delight are actually more available to me and also more intense. How marvelous!

In a strange screwy kind of way, the negativity of scleroderma together with all the unfavorable choices — although often very dark — certainly provides a contrast that illuminates the wonderfulness of the simple things in life.


Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.


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