Having a rare genetic disorder puts you into a whole different world. You meet people you wouldn't have met, if the illness had not been a part of your life. For that, I feel like Neurofibromatosis has been a blessing. So many lives, so many families, touched by NF. I am thankful for each of the friendships I have made, on my journey.Changes contain powers that transform how we live. After 44 years, I have learned this valuable lesson and now accept the shifts in the paradigms of my life. Yet, I didn’t consciously acknowledge the growth changes bring until June, 2002 during a doctor’s appointment. I hid in the addiction of nicotine.
At times, the throbbing the pain in my leg was so excruciating that I wobbled while walking. I was discussing with my specialist a proper course of treatment for the plexiform, having finished a years worth of MRI’s, CT Scans, and other assorted tests. The results all negative followed a typical pattern. Tumors bother me for a period of time, I get a battery of tests, and the pain magically stops.
After the exam, I stood behind a curtain getting dressed. Her voice hovered over the white tatted top. “Have you dealt with the psychological aspects of having Neurofibromatosis?” I told her no, yet knew most of my issues related to NF and life were emotional.
I left her office at University of Chicago Hospitals and lit a Marlboro inhaling the disappointment. I walked around the campus, stopping at 57th Street Books and an Asian Noodle restaurant. The immediate point I had to deal with was a constant pattern. Another NF complexity without an answer. The psychological question altered my life when August arrived.
Sure one doctor said he could remove the tumor and was gangbusters to anesthetize me and perform his Jekyll style of medicine. I thought his ego was over inflated and said no. I feared losing my leg, which a second surgeon suggested. On top of that, I had to consider my out of pocket expenses since my health insurance declined more then they paid.
As a child, I remember endless doctor visits, exploring treatment options. I started walking at age 2 and talking at 4. Even this young I felt different. After corrective hip surgery, doctors advised me to stop bicycle riding and playing soccer, because contact sports could cause permanent damage. They also confirmed my previous mind-set.
Given the changes and additional rejection (even the school district declined requests to test me for learning disabilities,) thrust upon me in 13 years, I disappeared into the addiction of nicotine when a friend and I decided to buy a pack of cigarettes at a local pizza restaurant. Neurofibromatosis sucked and adults told me to just breathe through the pain, be normal, and fearless.
Cigarettes provided solace. Their comfort intensified as I entered puberty. My body changed more compared to others, when mosquito bite sized tumors formed along with my facial and pubic hair. Peers teased me about my large head and instead of defending myself, I hid in the hazy fog of cigarette smoke. Even my sin sticks were hidden under the eaves of a local church rarely entering my house.
The other aspects growing up were typical. I became friends with other king sized squares, worked, and dated. I valued this transformation. NF remained the harder one to accept. I believed facial disfigurement would strike me at any time and was scared, rarely discussing it, since I had to be fearless according to adults.
My late teens and early 20’s were easier. In college, I explored various majors earning a degree in Behavioral Science. I worked as a case manager serving the disabled. My identity remained hidden helping others. Peacefulness continued to be found in packs of twenty. Each working day I’d be outside at 10:30, 12:30, and 3:00, feeling blissful for seven whole minutes, while I toked my 100mm friend.
Cigarettes stood by my side as I consumed Barium for CT scans. Cigarettes were there after I spent two hours in a claustrophobic MRI machine. Cigarettes were there for the happy negative results I received. Cigarettes were there when my health plan denied payments. All I had to say was, “God I need a cigarette,” and my savior appeared with the flick of a bic. I desired to quit and accept Neurofibromatosis once and for all.
The warm sunny days of August 2002 finally arrived and a singles camp in Saugatuck, Michigan. From the moment, I pulled up to the sandy – tree lined grounds, magic was in the air. Several morning groups were offered, and since my specialist felt I could benefit from the therapy, I chose massage. This involved exposing my tumors, which made me uncomfortable, especially in front of strangers. Yet, I risked ridicule and enrolled.
A dimly lit cinder block hallway led to the massage rooms. Whiffs of lemony pine aromatherapy scents filled the air and I entered the men’s locker room. The time had arrived to either show off my tumor-ridden body or continue hiding. I put on my blue/gray swimming trunks and slid across the sandy tiled floor into the massage room.
As I entered, quiet new age instrumental music echoed from a cassette player. Several sheet covered tables stood in the center with chairs around the edges. My inner child came out upon seeing a light green sheet with turtles imprinted on the percale. I had these sheets when I was young and keep a souvenir pillowcase from the set in a box of childhood memories. I choose this table as my own and ran my hand across the sheet releasing the memories of being six.
One the first day, the group leader handed out several papers, asked us what we desired, and took questions. I discussed NF referencing the tumors inside my body. After a demonstration on face and neck techniques, it was the participant’s turn. Two gentle kneading hands flowed over my face and neck that morning as my partner touched me sending me into a hypnotic trance. The turtles provided comfortable safety that week of learning a full body massage. No one ran and people wanted more information about Neurofibromatosis. The highlight of getting a massage arrived though by Paige, a woman separate from the massage group.
I was the only person in my coed cabin taking massage. On the evening of August 6 the women talked me into massaging them. After an hour it was my turn. Three women took turns massaging me. Paige went last and with a rhythmic pattern caressed my neck to deeper levels. After a couple hours of sleep, I awoke. Consumed by overwhelming sadness, the pivotal June question my specialist asked surfaced. Had I ever dealt with the Psychological aspects of having Neurofibromatosis?
In the early morning moonlit hours, I sat in an outdoor sanctuary crying. I watched deer feeding on vegetation, felt the light–dew filled breeze on my skin, and heard the crackling waves of Lake Michigan meeting the shore. I started a transition by questioning myself about my life, feeling a new connection in body, mind, and spirit. The compassion of this Unitarian camp, its community, and land catapulted me to a new level of consciousness. Four days later, I left a new man, seeing Neurofibromatosis in a new light, grateful to Paige’s massage, and to God. I was ready to confront my addiction. On November 4, after taking a smoking cessation class and joining a support group, I drew in my last smoke while walking my dogs. After 27 years smoking finally stopped stunting my growth.
Today, my life has become a wonderful and amusing journey. New choices always appear and I have a spiritual connection to the universe. God has always watched over me, including those early years when my cigarettes were buried on church property. Now I am blessed to be me, liberating the scared child, accepting the powers of change, connecting with others, and looking for my soul mate. Neurofibromatosis is finally part of who I am. Only its symptoms need treatment.
© Michael Forbes 2009
Thanks Kristi. :)
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