My name is Allan Neilson-Welch. I am a member of the Board of Directors of FIDS, but I am not writing this article in any official Board capacity. Rather, I am writing as an individual who has been living for some time with invisible disabilities. This article tells my story and is written in the hope that it might help, in some small way, others who are in similar situations.
I must say at the outset that I am an extremely fortunate person. On an invisible disabilities spectrum, I would definitely fall somewhere near the "less severe" end. At the risk of sounding immodest, I have been blessed with qualities that have enabled me to excel at various pursuits in spite of my disability. I have a wonderful wife and two fantastic kids, I am well-educated, I run marathons and I have a fulfilling career as a consultant in a large, established firm. In short, I have a pretty good life.
Life has not, to be sure, been without its share of challenges. Last April I was diagnosed with Tourette's Syndrome (TS). TS is a neurological condition that is characterized by recurring, compelling impulses to make movements and sounds (motor and verbal "tics"). The best known symptom of TS is coprolalia, or swearing aloud uncontrollably. The prevalence of this symptom is, however, greatly exaggerated in the media ¾ only a small percentage of people with TS actually exhibit coprolalia.
Although I was diagnosed with TS only last April, I have had the condition since childhood. Thinking back, I can remember as kid being rebuked for my "grunting", incessant blinking and various other weird tics. TS, though, has never in itself been a major concern to me. I have always been able to control my tics for long periods of time under almost all circumstances, including high-stress events such as presentations and important meetings. My TS has not grown progressively worse (a benefit shared by all people with TS), and I have never required medication.
TS, itself, isn't such a big deal in my case. The companion behavioral and emotional challenges to which people with TS are particularly susceptible are, however, a different story altogether. OCD, ADD, ADHD and depression tend to go hand-in-hand with TS. In my case, depression has been the most prevalent challenge and, at times, the bane of my existence.
My first serious bout of depression occurred at the age of 20 in my fourth year of university. In spite of a demonstrated ability to succeed academically, I developed an extreme lack of self-confidence coupled with passive suicidal tendencies. A professor in whom I had confided convinced me to seek help from the counsellors and psychologists available to students. Unfortunately, none of the three specialists I saw seemed terribly interested in identifying or even assessing my condition. Therapy consisted of a few quick chats, a couple of "hang in there" speeches and a kick out the door.
Two years later in graduate school the depression re-surfaced. One of the counsellors I visited suggested, believe it or not, that my best course of action was to simply quit school. Again, a sympathetic professor intervened and helped to get me back on my feet. For the next eight years, life seemed to proceed without incident. I should emphasize the word seemed here, because in retrospect I see that my constant jumping around from job to job was the strategy I had instinctively developed (the fight or flight response) to deal with feelings of despondency.
Then it hit. The big one. January, 2000, exactly twelve months ago. In that month I hit rock bottom. What began as a curious decline of self-confidence deteriorated into unshakeable feelings of intense self-loathing. Passive suicidal tendencies that had been dormant for years re-awakened with incredible fury. Perspective, which at the best of times was fragile, was completely lost. My familiar fight-or-flight instinct kicked in and very nearly caused me, the principal bread-winner in the family, to quit my job.
Enter my support network. This group, which consists of my wife, my immediate family members and a few close colleagues at work, saw that something was seriously wrong and came to my aid. My wife took me on long walks and soothed my troubled mind. My family remained in constant contact. My colleagues helped to lighten my work load. They also provided me the funds that I needed to get professional help. A tip from my family physician put me in contact with a wonderful clinical psychologist who started me on the road to self-awareness and recovery. It was three months into the therapy, incidentally, that I was diagnosed with Tourette's.
Today I'm feeling pretty damn good. I take a mild antidepressant every day, but I no longer need counselling. My high level of self-awareness, achieved through the invaluable assistance of my psychologist, remains strong. My self confidence is also strong, and my feelings of self-loathing have subsided. For the first time in recent memory, I can truthfully say that I like myself. The tics, of course, continue as before, and will probably be part of my personality forever. But in the face of my new-found contentment, they're nothing but a pesky annoyance ¾ certainly nothing to lose sleep over.
What lessons can others learn from my story? First, having an invisible disability does not necessarily mean that you won't succeed in life. I'm doing pretty well as a father and a professional. Tourette's and its associated depression may have tripped me up a few times, but they haven't stopped me from making a difference. Second, exercise caution when choosing a counsellor or psychologist. Counselling and psychology are no different from any other profession: they attract both very good and very bad practitioners. I went through several mediocre and uninterested specialists before I found my true healer. Finally, a good support network is essential. The love of my wife and family throughout my three episodes was unconditional ¾ no mean feat given that depressed people can be quite nasty to those around them. My colleagues at work, once they understood that there was a problem, bent over backwards to accommodate me. Everyone who suffers from depression needs these types of support. No one should have to face it alone.
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