Material Witness will focus on extreme textile process. Images will be posted here showing the history of my work, new work, developing projects and inspiration.

Friday, September 12, 2014

Long Term Illness Sucks

i have no enthusiasmI have now been dealing with the same slow growing cancer formally for 12 years. I was in my forties. I have had no success with the series of chemos, radiation and surgeries. Some of those treatments have left me sicker and close to death. I have pulled back from death at least 5 times.

It is normal for me to leap back into a life that works for awhile and diminishes again.
Each time less of me comes back.

The cancer has started a whole new phase. This time fierce. Nausea so bad I can't sit up or walk around easily. A skull bone that aches all the time. Legs and balance that no longer work reliably
Pain. In my chest and under my arm. In old radiation on two places in my spine. Breathing problems. Vomiting that is hard to control.  Sleeplessness and sweating.

I am lucky and  know that. But there comes a point where there is now very little value I offer the world. Where the motivation to get up is leaving and I just have the energy to stare at a wall. I have gone from lookin forward to visits to avoiding many of them because I find social enery the hardest to manufacture.

The cancer clinic experience has changed. I am still in Ambulatory Care. But this is now done with a walker and an assistant. It would be impossible for me to go to an appointment on my own.
 People no longer say how well I look. They are startled. Black and green circles and a palor startle my friends. Their eyes well up all the time. I talk on the phone and I hear them react to my voice weakness and breathlessness.

I was not diagnosed at Stage 1. I was diagnosed at Stage 3. Now diagnosed as palliative Stage 4. For 2 years.

My patience is short. Very little left for fools who push alternate diagnosis and faith healing on me. Positive thinkers who are convinced I somehow created my own genetic malady by feeling and reacting to stress in the wrong way. Who attempt to silence me with stupid mantras and magical thinking. Who abandon me because I am cranky.

My attempt to get up and take part in life takes more than most understand. It is my belief that people suffer silently not only to protect others from pain but because they have given up trying to use their own voices. They are tired of trying to be allowed to express what they need and want. Of having personalities and roles imposed on them. Sick people don't say things like that. You are a saint. I am not a saint. You are so brave. I am terrified. You expect too much. Seriously. I am expected to wait for hours for appointments. Sit in dirty clothes. Wait for food when an empty stomach burns and burns. Stand on buses. Be stood up at the simple drop of a hat.

I am a grouch. I do not have my regular instant smile and trust. My attitude is the best I can do. I am not needing to suffer...

I didn't manufacture a single fucking thing except feigned happiness and excitment at life. The things that make me truly happy are nearly all gone.

I am no longer thankful for another day. Just grateful for the life I was enabled to have after diagnosis. And so glad about the life and love I had before all of this. It was full. It was rich. And I loved it. Right now I don't because long term illness without hope just sucks.

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