6. There is relief in letting go of a dream. Once the door to motherhood closed a couple of years ago, I intensely grieved it. Earlier this year, I began to feel relief that the question had been answered for me. I no longer had motherhood as a choice (in a biological sense), and it opened up space to create new dreams. It's not always a negative to let go of a dream, or to redefine your dreams.
17. I'm still trying to make my life fit into that of a body that doesn't work properly. I find saying no, even to lunch with a friend, agonizing. I still push myself past my limits because I struggle to limit myself when life is so full of beautiful things. Every choice I make to say no feels like a loss. Life is full of missed opportunities for all of us. Every time we choose one thing over another or say no to something, we do miss out. This isn't something unique to chronic illness, but it is absolutely amplified by chronic illness. If you could choose one thing to do in a day or a week or even a month, how would you choose? What would you choose? What price would you pay physically to do that one thing?
18. Grief and gratitude co-exist on a daily basis. I believe that these two feelings will co-exist in my life for the rest of my life. I recently made peace with this when I read Toni Bernhard's thoughts on 17 years sick. We can absolutely feel two emotions at the same time.
Example: I am SO happy to be able to go to the park for a little walk and not be in the wheelchair. I am SO happy I can leave the house at all now. I am SO sad that I can't take mile long walks anymore and just escape into nature for hours. I am so sad that I cannot enjoy the physical highs of exercise and the self-confidence that being in shape brings. Rinse and repeat. Apply to every daily activity.
When we become sick at a young age, we lose a lot. No one told me that grief would be the most challenging part of my journey. It's constant, gut-wrenching and devastating. Honor it.
I know I talk a lot about grief, so much so that I hit people over the head with my discussions of it. This is because I had no idea that it was such a part of the chronic illness experience, and it is in many ways, an unrecognized type of grief. For those who are newly diagnosed or those living with grief, I want to acknowledge its role in chronic illness.
For me, giving up the dream of motherhood was the hardest thing I ever did. The physical suffering of chronic illness is grueling. But for so many of us--the emotional toll, the losses and the griefs--are as hard or harder than what we deal with on a daily basis physically. To the children I loved who never came into this world I say: "I would have named you Isaac because I wanted you to know joy." Or "I would have named you Esther because you would have been my star." I have cried out to G-d in deep heaving sobs asking him why He did not want me to be a mother.
19. Living in the present is the only way I can survive. No matter how you slice and dice it, I will live with a chronic illness for the rest of my life. I have no idea how we will all survive this physically, emotionally and financially. All I know is that we have done the best we can to plan for the future, and we are okay right now. While I do try to problem solve for the future, it's too uncertain to have any firm plans or decisions in place. This can invoke total panic. I try very hard not to let the good that is now be clouded over by fears of the future. I don't succeed every day. I am human.
20. Every day I still wake up surprised that I am so sick. This illness is just as confusing to me as it is to you. The symptoms of this illness are invisible to me and to you. Symptoms change over time, come and go without warning, are difficult to explain, and vary greatly from person to person. If I wake up feeling 'well', I feel ready to conquer the world. I am quickly reminded that my body is not suddenly going to be ready to head out for an invigorating run.
I often wonder how we can feel this awful without really understanding what is going on or how to do much to fix it. How do we really explain fatigue? I remember when I couldn't buy shoes that tied because by the time I got them on to leave the house, I would be too tired to leave. Or when I was too tired and weak to eat dinner sitting up or to eat out on our patio. Eating out on the patio, enjoying Mom's incredible garden and locally sourced food is now one of my very favorite things.
When you ask me what my symptoms are, I often find myself tongue-tied because of how they change from day to day and how each individual symptom may not sound very debilitating, but in combination they can and do amount to a great deal of suffering.
I've now woken up 'still sick' for two decades of my life.
Photos: More photos from Musser Gap.