By Gerry de Gruiter
I like to begin by sharing a life altering experience caused by a sudden illness known as Chronic Fatigue Syndrome(CFS) and Fibromyalgia (FMS). How this sudden onset disease like many other diseases can have a profound impact on ones daily lives, relationships, financial challenges and overall mental and physical well being. If you are or you know of someone afflicted by a debilitating disease than you should read further as hopefully this article will help you cope through acceptance, understanding and offer empathy.
Like many CFS/FMS patients or others stricken by disease or a life altering experience, prior to my illness in 2001, I had a successful career. My career started at the tender age of 16 when I began full time employment and was driven to succeed and overcome being a high school drop out. My high energy, zest for life, motivation and personal goals enabled me to not only succeed but excel within my personal and professional life as I embraced being a contributing member of society. I was a sales manager/mentor and coach employed by a Fortune 100 corporation offering highly complex technologically advanced business solutions to large corporations. I was considered one of the best within the industry ranked within the top 5 in sales for the past 4 years amongst 5000 peers. If you compared my business status to the current sports world I was equal to a Lance Armstrong for consistently overachieving. I was at the pinnacle of my career earning well into the mid 6 figures and recognized and respected by my peers as well as my competitors.
My national reputation demanded travel from coast to coast using New Orleans as my home base. As many might realize New Orleans is not known for being the hub of technology considering we still use horse and buggies and street cars for transportation. Consequently, it was always a challenge to stay ahead of technology and surround myself with stimulating technology savvy individuals. But I strived for challenges as I found competition and change a stimulant to always further enrich my life. During the week I lived and worked out of a suitcase and normally scheduled my return home on Friday evenings to spend time with my wife, four children and two dogs. I loved traveling for business as my destinations took me to all major US cities and across rural America. The constant change of cities, people, hotels, meals and cultures soon became a way of life.
Although there are many inherent differences from city to city I found comfort in the similarities constant change has to offer. I developed a rhythm for accepting change and embracing this as an opportunity to better myself. At times, my wife Faye, who was retired from XEROX, would travel with me and share in my day to day way of life on the road. Faye always envied me for being able to travel daily, stay in nice hotels, dine with associates and make new friends. She had a romantic picture of the lifestyle. Yet she soon realized that what I did was hard work and placed great mental and physical demands. Maybe this way of life was not such a glorious experience after all.
One day we were driving from New Orleans to Houston with our final business destination Austin, Texas. After 9/11 it was easier and more efficient to drive many times than fly and rent a car. So we drove our 2000 Lexus GS400 leaving behind our 5,550 sq foot waterfront home, listening to the soft rock on our stereo and singing along part of the way with familiar songs coming across the sound system. Life was and seemed really good! We were both festive, enjoying each others company in the comfort of conversation as well as during our silence. Three hours into our drive I felt my right hand tingle and go numb, my chest had an ache close to the center and my left leg began to feel numb. Sweat was forming on my forehead and my wife noticed my discomfort as she asked if I was alright. My answer was no I felt really light headed and I volunteered to let her drive. Being the typical Type A personality I must have really been ill to let her drive the rest of the way to Houston.
This was the beginning of a new era for us not by choice but brought about by a sudden illness. This altering illness could be any illness but unfortunately for CFS/FMS sufferers it is one not easily diagnosed and worst of all not readily accepted by society as a real disease. I thought I was having a stroke and knew so little of my condition as I have never experienced being so out of control. After months of being misdiagnosed, I was finally diagnosed by an infectious disease specialists and a rheumatologist with CFS and FMS. Attempting to maintain a positive attitude I continued to seek medical treatment, counseling, alternative treatments to include herbs, supplements, chiropractic adjustments, massage, the gamut of prescription drugs anything to get me better. There were days and at times an entire week or so when I felt better. I was far from being myself but much better than the prior 6 months. I felt I was on the road to recovery and free of this debilitating disease. I was in denial and even sought employment during the days when I felt good. WRONG!
Today I function at 20% of my old self. Just a small resemblance of the person I used to be. Almost four years later, an array of doctors, specialists, physical therapy and 1 year of psychological counseling, I find myself finally learning to not only accept my long term illness but equally important is the ability to let others know and respect my limitations. With my acceptance comes a different healing process. No, it is not one that offers physical healing. As most CFS/FMS patients quickly realize there are no magic pills, or radiation treatments, therapy cures which offers ones health back. It is the healing power of acceptance versus denial and learning to live with this or any other illness.
I no longer pretend to be my old high energetic self around my friends, family, associates/peers and my loved ones. I no longer have the fear that others will no longer love, admire and respect me if they know I am sick. Those that are worthy of my limited time and energy are the ones who truly accept you now for who you are today…not that person from days gone by. Like many others in my situation we will quickly weed out those that care for you as a person from those who look at you and treat you as if you are just being lazy and should and could do more. Or judge your previous success and point out mistakes. Should have could have saved more money, spend less, be more financially responsible. Yet, it is a known fact that majority of America is two to three paychecks away from being homeless and bankrupt. In other words most of Americans could not survive missing 2-3 pay checks. We were somewhat fortunate as we had 3 years of cash, investments, 401k plans, collection of rare cars and home equity that sustained us.
It has taken 3 years to collect Social Security and currently we are still legally battling Prudential Insurance for Long Term Disability benefits. My circle of true friends has been reduced greatly to a few. Even our family, who appeared at one time as a picture perfect small and close knit supportive and loving family has been further reduced to my immediate family, my wife and our four children. They witness my personal trials and tribulations daily and have become an integral part of my mental/emotional recovery as they provide love and support during the most difficult and challenging times. It is their understanding and acceptance that becomes valuable to your road of emotional recovery.
Family members and those you thought of as friends will challenge you and judge you to the degree of direct insults. They will find fault in your chosen lifestyle, planning, ideas, your entire integrity as a person will be attacked and open to criticism. Some of these attacks will be direct but most are silent, indirect and hidden as they withdraw from personal interaction, lack of invites to family gatherings and parties are all symbolic of sensing where you stand as a disease stricken individual. At times feeling very much alone, yes very alone as your own doctors treat you with frustration as their inability to offer a cure becomes evident. How do you expect your friends, relatives to embrace/accept your limitations caused by your illness when society as a whole has little tolerance for the ill and the elderly? The answer is, unless we learn to accept our own illness and its physical, mental and emotional limitations and begin the road to an emotional recovery others will have little time for you.
Even upon acceptance of your own limitations you are not assured of anything except the ability to convey these and develop a mental emotional framework to discover the new you. Learning to love the new you is at best difficult but achievable. I try to remember and use the foundation of which my personality, integrity, achievements are built on. That is still who I am today regardless of my current inabilities and limitations. At times everything seems so out of control as your physical ability to do things as usual are no longer an option, your mental and emotional state deteriorates beyond your wildest imagination. You feel and think you have lost everything you worked for all your life as your home is sold, your car is repossessed, you are forced into personal bankruptcy, your social life consists of dinner at home with friends and family or on a really good day you might even attend a wedding or a friend’s funeral.
Your passion for life is challenged daily and sucked out of you as you endure yet another trying day beginning with pain and nausea as you try to get out of bed. I believe those who are ill are not seeking sympathy but mostly in need of empathy, understanding, respect as a person who has been inflicted with major limitations not by choice but by circumstances. There are no bad choices in the past that would have prepared anyone for what we face. Hindsight is 20/20. We have to work with what we have today, who we are now.
I sometimes wonder and admire how others such as Christopher Reeves, Superman, who died today after fighting his disability for 10 years, not only endured but overcame physical restrictions as he was bound in a wheel chair breathing with assistance from a machine. He inspired me to seek self acceptance of my limitations and to become constructive within a new framework. I think the key is first and foremost his acceptance of the new person he became as a result of his injury, free of self pity, and always building on the parts of him that are still his foundation as a person who he was, is and always will be. Regardless of being tied to life support and in a wheel chair he built on the strength of his personality, his character, his integrity as a contributing member of society striving towards acceptance within the new world. For the readers who know someone stricken by a life altering experience such as an illness, death of a close one, loss of job, home, career, accident before you judge those stricken individuals remember there are circumstances in this world that are well beyond our control regardless of the best planning. Can anyone predict an accident? Can you predict who, when and what will happen? All we can do is provide, love, hope, and understanding to those we know that are suffering from a set back in life. It could happen to you or a loved one at any time. Keep safe and enjoy the moment, the breath of air that we take for granted, hug your loved ones and learn forgiveness.
Gerry de Gruiter