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by Farrah Tate
Who would I be without this illness?
I certainly would not be the Farrah who I am.I had a conversation with someone the other day that lead me to further reflect upon my teenage years with a chronic illness. Although I am a lot healthier now, I do remember those very difficult years well, as one remembers any event that delivers anger, despair and necessitates the Grieving Process. I certainly did once feel sorry for myself. Even the people closest to me felt terribly sorry when considering my lost or stolen years. However, I no longer consider those years with contempt for my physiological misfortune. Instead, I reflect on those years with wonder. I now know that those years were not actually lost. I was undergoing a process of invisible growth - an internal metamorphosis of the soul. I was maturing like a fine wine, and I now realize that for my vintage, I am considered to be reasonable indeed.
I have never surrendered to just existing as - or being identified by - my illness, but undeniably, my illness has added to my character. It has made me more resourceful, more skillful and - contrary to what others may perceive - it has left me with more ambition and more determination to succeed with my goals. Instead of detracting from my life, it has made me a whole person. It has taught me early about realism, about loss, courage and the all-important fighting spirit.
I ponder over the many things that I learnt when I was homebound for periods during my teenage years. I learnt about what it is like to suffer in silence, and I still feel true empathy for others who feel alone in their plight. I learnt to listen to others, and more importantly to gain an insight into their needs and comfort them accordingly. I learnt about pain - physiological as a primary outcome of my illness and psychological as a secondary outcome of my illness. I learnt to be resourceful, replacing my previous love for physical activities with ones that I could do lying in bed or on the couch. I indulged in macramé, crochet, and all sorts of other crafts that were considered "uncool" at the time. Now, such crafts set me aside from others; now such skills are regarded with respect – if only my illness was too! I painted and drew. I pursued creative writing and tried my hand at poetry. I read and learnt when my ability to concentrate permitted me to make sense of the content and encode it efficiently into my memory. I had ample opportunity to learn about myself; something that many people postpone until later in life. For this opportunity for endless self-exploration, I am particularly grateful.
During periods of better health, I appeared to others as almost your average teenager. I kept up with my schooling - mostly! Like other students I was passionate about some subjects and hated others. When I was healthy I grasped concepts too easily and readily became bored. I learnt the oboe and the piano at a specialist, music high school that I attended from years eight through ten. I played sport between relapses. I was in fact a very promising netballer. I was dedicated to my training and disciplined to maintaining a strong, sporty physique. My love for sport detracted from academic pursuits until I was too sick to undertake the former. I had previously engaged in a sturdy and sometimes undesirable social life. Until I became very ill, I was one of the "cool" kids. When I became very ill, I was given a unique opportunity to realize how superficial the cool kids actually were.
Clearly I very much did all the typical things that other teenagers did … albeit over brief periods. Yet, despite this there were always comments made - which were forever repeated and reiterated by others – that I was not cut from the same mould as the other children. I was unique. I was more perceptive and intuitive. Unlike many other young teenagers I was neither self-centered, nor naive or ignorant to other people's suffering, problems and needs. During my sickest period – and the correspondingly most challenging period of family disruption - I went through a phase of having psychic episodes that were witnessed by others, and several clairvoyant (and often shocking) dreams. Although my brain was malfunctioning in just about every cognitive process required for every day life, I had somehow gained other temporary abilities. I was not - and still do not regard myself as being - anywhere near normal or typical. Why, you ask? Undoubtedly, my difference is a direct result of my experiences with chronic illness.
When you are desperately ill - that is bedridden for lengthy periods, semi-paralyzed, in chronic pain with a diverse array of extreme symptoms - you do ultimately become despondent. You are well aware – if not of any thing else - that all of your skills are going to waste and you wonder if you will ever be able to use them effectively again. During this time, you learn to appreciate your previous "healthy" state abilities. More aptly, you learn to treasure them, and love them passionately, and want to use them every second of the day when finally recuperating from beyond the Twilight Zone state. Hence, the utmost need to adopt a realistic approach and pace oneself when again exploring these skills, in order to avoid a relapse. Your newfound ability to think with clarity is magic … as luminous fairy dust is to the pitch dark. You hope with every inch of your heart that the dreaded cognitive complaints cease their afflictions altogether. Therefore, from losing your abilities and your opportunity to use your skills, you gain a unique, renewed or further authenticated passion for such abilities. You also gain a renewed vigour and purpose for living. You cannot go through such an experience without emerging as a wholly passionate, creative, and innovative person, who loves beyond any thing else to experience all the pleasures of a healthy existence.
Through all of this, I have learnt one important lesson: not to over look my abilities, even if other people constantly do so because of my illness. For those who are healthy, I have some special words of advice for you; for how you perceive others with a chronic illness and secondly, for how you perceive your healthy self:
A clam with a cracked shell may still hold a pearl but it takes a careful, wise observer to acknowledge this possibility. In doing so, the observer is genuinely rewarded and indeed, I do believe that those who have taken the time to know the person beyond the illness have truly been subsequently rewarded with a very special friendship. In your haste to judge yourself critically, do not miss what it is that you are able to do well because when you can no longer do it, you will miss it more than you could imagine. Believe me. Believe the rest of us who suffer from a chronic illness.
August 27, 2000
If you liked this story and want to read more .... then I recommend you read Farrah's compelling and vivid account of her childhood and teenage years as a CFS sufferer, Come Lie in MY Bed :
"Every time that I lay my head to rest in bed at night, and prepare myself for eventual sleep, I am reminded of how grateful I am that I will again be rising from my place of sleep in the morning. This is a stark contrast to my past where I would spend my every morning, my every afternoon, my every night, (my eternity), bound to my bed by this devastating illness."
(This was on the Themestream website ... no longer operational - webmaster Dec 2001).
Farrah also has her own web site at: http://www.geocities.com/farrah_j_tate/ which includes Information for Students with CFS and a message board. She is the Tertiary Student Contact for the ME/CFS Society of South Australia and is on the committee of SAYME (South Australian Youth with ME).
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