Jordan and I spent the weekend in Boston at the scleroderma conference. It was not an easy weekend. For either of us. Four years after being diagnosed, I find myself still struggling to come to terms with this disease. Struggling to come to terms with the fact that I have this disease and that it is a part of my life. I think I had convinced myself that if I ignored my symptoms and made little if any reference to it, it would be as though it didn't exist. This conference made it impossible for me to continue to live inside my little bubble of denial anymore. And that is just plain hard. I feel exposed. I feel incredibly self-conscious. I have seen what I look like to others. I have glimpsed the prospects of the future with this disease. And I am afraid.
I hated walking into this conference, receiving our name tags and looking for workshops that identified me with a group that I never had any interest in being identified with. "Hi, I'm Lori and I am here for the ...photography, cooking, art, mothering, young women, running, nutrition..........conference," is what I wanted to be able to say. Instead- part of who I am now includes this disease that I have come to resent. "Hi, I'm Lori and I have scleroderma," just doesn't have the same ring to it.
After the first day of workshops and my sometimes successful attempt at holding back tears, I took my 800 mg of motrin (that I learned in one of the workshops was not a good idea for patients like me who have GI issues) and fell into a fitful sleep. But then this: I dreamed the most amazing dream. It was dusk and I was walking with a friend down a cobblestone path (which does not really jive with the context of the dream). I was excited to get wherever it was we were going (probably a restaurant) and I suggested we race. My friend took off running and surprised, I quickly took off after her. I felt my feet hitting the pavement the way they would when I would run every morning, the pressure making me feel so alive. I felt the coolness of the air on my face and heard my breath, even and controlled. There was no knee pain or hip pain or cold fingers or shortness of breath. I wanted to run like that forever. But like all dreams, morning shattered the illusion. The exhilaration of sheer health stayed with me for a couple of minutes after I awoke. Then slowly the realization of what I have lost settled in and left me with a deep ache for the remainder of the day.
I attended workshops on nutrition and Raynauds, gastrointestinal issues, biofeedback, holistic pain management, and a panel discussion on alternative methods of treatment. Jordan attended the workshops that I mentally could not bring myself to attend. Surgical options for hand involvement, and stem cell transplant clinical trials. In each class I would take inventory of the attendees. Basically they ended up in three categories. Those with no skin involvement but internal issues (so those better off than me), those with skin issues as well as the internal crap and joint issues (those like me) and those in wheelchairs and/or on oxygen (those worse off than me). I would have to say that the majority of people at the conference were in the first group and admittedly I was feeling a little bitter about it. My constant prayer became "please let me be receptive to those people and information that will benefit me." Finally, after sitting next to the same girl in almost every class, I spoke up and introduced myself. Kelly was an African American woman about my age with what we discovered were almost identical symptoms and progression of the disease. But something about her kept nagging at me. As I tried to covertly examine her, I noticed with a bit of disgust her skin discoloration along her wrists and arms and even on her face. I noticed how turned under her fingers had become and the ulcers on the tops of almost every knuckle. I noticed her thinning lips and tight mouth and suddenly I realized what it was that was making me so uncomfortable. I realized that I looked like her.
Unlike me she is taking a myriad of drugs. I asked her hopefully if she had found anything to be really helpful. Prayer. Prayer was her answer.
Right now I need support in trying to navigate all of the information and feelings of the past weekend. I am struggling to make sense of what I am responsible for and what I need to let go of.
I am struggling with the realization that my life the way I knew it may very well have changed forever. The truth is that I had an expectation. Subconsciously maybe, but an expectation, that if I lived my life a certain way and made good, healthy choices, I would always be healthy. I would always be able to do the things I wanted to do. That I would always feel "normal." I want to live life the way I was living it four years ago. I want to be able to run and to ski and to stay up late and hold hands, and, and, and. The reality is that this is my new normal. That although I may not be able to do some of the things I could do before there are still many ways to include in my life things I love. People I love. And that is what I am trying to remember right now. This is my new prayer.
Yes, folks that's botox. On which I dropped a wad of cash and endured some great discomfort seeking no cosmetic benefits. Just the hope of paralyzing the capillaries in my hands so as to keep them open so that the blood could more easily circulate and allow my hands to stay warmer longer. It didn't work. It's back to gloves, and handwamers, and tucking them under my pits.