So it has been very jarring indeed that I have recently started reading books, modern living magazines, and listening to music and watching movies that I once ignored when my IC held me in its vise-like grip. Although the subtle pain of IC still lingers I am able to to live a very full life and it is with sadness tinged with awe that I am now able to enjoy the pleasures of life that I once ignored and shoved into the recesses of memory in the hopes of if not stopping completely, but keeping at bay the pain of living without the music, visual stimuli, foods and movies that celebrate life and all of its passions. My heart still cries out silently remembering the days that I could not be sexually active and songs and movies filled with romantic portrayals both mocked and stung me in ways that are almost impossible to write about. The same is true for books and colors and knowing the difference between a Knoll and an Eames chair. Life with extreme IC was measured on a scale of daily pain, sexless nights, bland food, and doctor's visits. There was little room for romance, literature or learning about key visionaries of the mid-century modern movement.
Friendships and relationships are that much more dear to me now that my IC is in remission because I remember when I plunged myself into an isolation so severe that most people thought that I had gone a little mad, but mainly they did not understand my severe eating habits and excruciating level of pain that warranted a hermitage of my own making. And I will never be the same person again after losing a dear friend who suffered from IC, Lyme disease, and eventually succumbed to breast and bone cancer. I feel her loss more keenly as I remember our many conversations and the advice that she gave me when we were newly diagnosed IC patients. IC blurs the lines between a fully lived life and living day to day without enjoyment. The phantom loss of a dear friend, and of 5 years shrouded in pain and isolation, follows me around like a Siamese twin, connected and forced to forever walk the earth together. Remember, the twin seems to whisper, all of that pain and loss make up who you have become. Never forget that. Forget that and you will be unable to help yourself, let alone others suffering from pain.