RA body
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Ramblings

When we have a life-threatening disease, like cancer, a chronic and debilitating disease , like rheumatoid arthritis, or a disease that sneaks up and attacks as we get older, like Parkinson’s, we are consumed. Our disease becomes the center of our universe. We frequently need to relearn how to live. We have to live with new fears of our frailty. Our world changes. Our expectations become unclear.

My last cancer  was the most potent and the treatment the most severe. When I was done with it, I felt cured. No need to worry. I was lucky. Two of my best friends died of cancer as did a new friend. But then there are all those people who have a cancer that seems chronic, but just takes longer to kill. For them death is waiting patiently and they know it. It is silent trauma. One not acknowledged by their families.

Cancer patients can be lonely people. They are plodding through something that is foreign to them. They are exhausted. They are doing the best they can. No one is entitled to tell them to fight their cancer. No right to determine if they have the proper attitude. It is what it is. It isn’t a war. It isn’t a contest. Remember it is their own body that is causing the havoc. How do you fight that?

Life with RA is an endurance contest. A death by a thousand cuts. Life span is almost normal unless you get a severe infection as a result of your weakened immune system. People with RA eventually die of heart disease. The inflammation of RA causes atherosclerosis and eventual heart disease. RA is a progressive disease. It is unique to each person. Some progress slowly. Some fast. Mine is faster than I would like.

I no longer have the debilitating fatigue that I had in my first few years. That was tough. My RA has always been hard to control especially since cancer treatment has been peppered in along the way. Now it is about the pain and about managing disability. The destruction of my hands makes it hard to do many things. Ditto for my feet. I was lucky to get RA when I was older. Trying to raise young children or to care for an elderly parent when you have RA would be very hard to do.

I have several friends with Parkinson’s. It is a disease that is progressive with dire consequences. Most people are afraid of Parkinson’s. They have heard the stories from their friends. It can be a tough way to live your final chapter.

When we were born there were no guarantees. But build into each of us was a sense of immortality, resilience, and optimism. They are qualities we needed as young people in order to go out into the world and make our own lives.

As time passes, we gain experience and then we settle into the routine of our lives.  We are busy living those lives. Then out of the blue, something happens. Sometimes something bad. We are diagnosed with cancer, an autoimmune disease, a crippling disorder. We are in shock. We have no idea how we are going to cope.

And then our resilience reemerges. Our optimism, even our sense of immortality, join with our resilience. We carry on. We adapt. Surprisingly, we are happy. The qualities of our youth become the qualities that carry us through the burden of illness. Our lives are changed. But they are good again.

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