A Wonderful Letter on CFS - Prince to Pauper

Discussion in 'Fibromyalgia Main Forum' started by PVLady, Jan 31, 2006.

  1. PVLady

    PVLady New Member

    I found this letter on the CFS Association website and thought I would share it with everyone.

    From Prince to Pauper: Acceptance Was the Key to My Recovery
    By Gerry de Gruiter


    The sudden onset of greatly misdiagnosed and misunderstood illnesses like chronic fatigue syndrome and fibromyalgia can have a profound impact on your daily life, relationships, financial challenges and overall mental and physical well-being. I know this firsthand.

    Like many CFIDS/FM patients I had a successful career prior to becoming ill in 2002. I started working full-time at the age of 16, a high school dropout, and worked hard to overcome that status. I not only succeeded, but excelled in my personal and professional lives. I was a sales manager/mentor and coach employed by a Fortune 100 corporation and was considered one of the best in my industry. I was at the pinnacle of my career, with a six-figure income.

    My job demanded that I travel a great deal, and New Orleans was my home base. I loved traveling for business. The constant change of cities, people, hotels, meals and cultures soon became a way of life. I developed a rhythm for accepting change and embracing this as an opportunity to better myself.

    During the week I lived and worked out of a suitcase, normally scheduling my return home on Friday evenings to spend time with my wife, four children and two dogs. At times my wife, Faye, would travel with me. Her romantic picture of my professional life—stays in nice hotels and wonderful dinners with associates—changed as she realized that what I did was hard work that placed great mental and physical demands on me.

    After September 11, 2001, it was often easier and more efficient to drive for business rather than to fly and rent a car. On a trip from New Orleans to Texas , Faye and I were singing along to the radio and enjoying one another’s company. Three hours into the drive I felt my right hand tingle and go numb; my chest ached and my left leg began to feel numb; sweat formed on my forehead. Faye noticed my discomfort and asked if I was alright. I felt really light-headed and volunteered to let her drive. I thought I was having a stroke. I had never experienced being so out of control.

    We didn’t know it then, but that was the beginning of a new era for us—not by choice but because of a sudden illness. After months of being misdiagnosed, an infectious disease specialist and a rheumatologist finally told me I had CFS and FM. Attempting to maintain a positive attitude, I continued to seek medical treatment and counseling, went through the gamut of prescription drugs, tried alternative treatments such as herbs, supplements, chiropractic adjustments and massage—anything to get me better.

    There were days and sometimes weeks when I felt better. I was far from being myself, but I felt much better than during the prior six months. I thought I was on the road to recovery and free of this debilitating illness. I even sought employment during the days when I felt good. But most weeks everything seemed so out of control. My former physical ability to do things was gone, and my mental and emotional state deteriorated beyond my wildest imagination.

    My circle of true friends declined to just a few. Even our seemingly picture-perfect, close-knit and supportive extended family was reduced to the immediate family—my wife and our children. They witnessed my personal trials and tribulations daily, and provided love and support during the most difficult and challenging times. It was their understanding and acceptance that was most valuable on my road to emotional recovery.

    Family members and those I thought of as friends challenged and judged me. Some of these attacks were direct insults, but most were silent, indirect. I’d lost everything I worked for my entire life as our home was sold, our car was repossessed and I was forced into personal bankruptcy. They found fault in our lifestyle and financial planning, and my integrity as a person was attacked and open to criticism. Some people even pointed out my mistakes, saying I should have saved more money, spent less, been more financially responsible. Yet it’s a fact that the majority of Americans are two to three paychecks away from being homeless and bankrupt. We were somewhat more fortunate since we had three years’ worth of cash, investments, 401k plans and home equity to sustain us. It has taken three years to collect Social Security benefits, and I’m still legally battling Prudential Insurance for long-term disability benefits.

    After almost three years and an array of doctors, specialists and physical therapists, and one year of psychological counseling, I’m finally learning not only to accept my long-term illness, but also to let others know and respect my limitations. With my acceptance comes a different healing process. I realized there were no magic pills or radiation treatments or therapeutic cures that would magically return me to good health. It’s the healing power of acceptance (versus denial) that has brought me a kind of recovery.

    Today I function at 20 percent of my old self, just a small semblance of the person I used to be. I no longer pretend to be my old high-energy self around my friends, family, associates/peers and loved ones. I’ve stopped fearing that others will no longer love, admire and respect me if they know I’m sick. Like other PWCs I quickly weed out those people who care for me as a person from those who treat me as if I’m just being lazy.

    Unless we learn to accept our own illness and its physical, mental and emotional limitations and begin the road to an emotional recovery, I believe others will have little time for us. Learning to love the new you is difficult but achievable. I try to remember and use the foundation my personality, integrity and achievements are built on. That’s still who I am today, regardless of my current inabilities and limitations.

    I believe those who are ill with CFIDS/FM are not seeking sympathy, but are in need of empathy, understanding and respect as individuals who have been inflicted with major limitations not by choice but by circumstances. I sometimes wonder how Christopher Reeve not only endured but overcame his physical restrictions. He inspired me to seek acceptance of my limitations and to become constructive within a new framework. I think the key was his acceptance of the new person he became as a result of his injury. He was free of self-pity and built on the parts of him that were still his foundation as a person. Regardless of being bound to a wheelchair and tied to life support, he built on the strength of his personality, his character, his integrity as a contributing member of society.

    Before you judge someone who has been stricken by a life-altering experience such as an illness, an accident or the loss of a career, remember there are circumstances in this world that are well beyond our control regardless of the best planning. All we can do is provide love, hope and understanding to those who are suffering from one of life’s many potential setbacks. It could happen to you or a loved one at any time.

    Keep safe and enjoy the moment, enjoy the breath of air that we take for granted, hug your loved ones and learn forgiveness.