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My Life With Tourette

My life with Tourette’s

written by Bob Eisenberg

I was born in Brooklyn, NY in 1950, the middle child of 5, one girl, the oldest who became assistant Mom and then 4 boys. We were by economic standards low to middle income with middle to upper income values. Our father worked two jobs most of his life to provide for our family of 7 and our mother who was ahead or her time worked as a bookkeeper.

When I was 4 we moved from a very small apartment in Coney Island to Bethpage on Long Island, where our parents found a 4 bedroom home that they could afford using the GI bill.  We were certainly not poor, we always had ample food on our table, clothes on our back, but little frills. If we wanted extras we worked for it. In fact our entire neighborhood was exactly like us. I started working early, paper routes, mowing lawns and in fact I have been working my entire life since I have been 12, which I am not complaining about, I like work, the sense of accomplishment.

Anyway, on to Tourette’s, I attended Island Trees School District in Levittown NY. In my elementary years, I was an A/B student, always studied and liked reading and was always in honor classes. Then entering Junior High School as they called it then, I was placed in the honors class (about the time puberty kicked in) and about the time that my Tourette’s kicked in, but no one knew at the time what it was.  My symptoms were motor tics and vocal tics. Not only was I an oddity in class, and was the object of much ridicule, I lost my ability to concentrate on school work and my grades suffered dramatically. So much so that at the mid-point of my 7th grade they removed me from the honors classes to an “average” class, same course schedule.

In NY, they have something called a Regents diploma; that if you took 4 years of math, science, English, History, etc. and passed the exams you received a Regents diploma that supposedly gave you a leg up for entrance into college, for some reason, I took all of that, had horrible grades, went to summer school almost every year, but as it turned out missed that Regents diploma because I only scored a 64 ( 65 would have been a passing grade) on my 12th grade History exam, which was at least half essays. I was so defeated and could not care less at that point and just accepted a general high school diploma.

Further, My French teacher (who I nicknamed the wicked witch of the west) actually made fun of me, mimicking my symptoms in front of the rest of the class. I just cut that class the rest of the year. I do not believe I was bullied in the true sense of how children are bullied today, I was a relatively tough kid, but I was, as I said an oddity, made fun of and laughed at. My self-esteem was very low and as I look back on my experience as a student I was a product of a failed public school system, no one took any notice or cared to help, I simply slipped between the cracks. And, frankly, many times in my life, I wrestled with depression.

The only college I ever went to was one semester of community school, I had such a bad taste for school, in retrospect, I do not think I could take another 4 years of any school.

As I said previously, the fact was, no one knew at that time, what Tourette’s were, they all thought it was a psychological problem and that I could stop the tics. My parents were frustrated, as I was. They did take me to doctors and therapists, but no one could actually find anything wrong with me.

What I was good at was work. I could learn fast and manage things and even people well. During high school in summers I worked in a swimming pool retail store. I started in the warehouse and quickly transferred to the showroom, at 17 I managed a very large parts department, became an assistant store manager, then after graduating high school, managed two retail stores on Long Island, going on to manage others, managing not only the staff, but purchasing, accounting, advertising, marketing and more. All before I was 21 years old without a college degree.

Plus in 1970, during the Vietnam war, I was about to be drafted, I had a low number in the lottery, (look that up in the history books); so my mother insisted I join the Army Reserves, I heard it took years to get in, so to placate her my friend and I went to Fort Hamilton in Brooklyn and put our name in and for whatever reason, we were accepted within a few months! So, I joined the military, the only one of our family to do so. Now, I was sent to Fort Polk, LA for basic training and I was assigned to be a truck mechanic, also at Fort Polk. I was nervous on several levels, one of them was, of course, being accepted with tics (remember I did not know what my actual condition was at the time). Fortunately in basic, my tics were in remission, but not in mechanic school, again in classes, so that was unpleasant, being again, the odd person out. Fortunately the classes were easy, I finished the 8 week course in 4 weeks and went on to work in a motor pool the balance of the time. Still being frustrated.

Somehow, work continued to be successful, I was managing stores, a successful sales career, but it was always a struggle at work and at home, it was not always easy to be around me. In the early days, my parents lost patience with my tics, thinking I could control them, and then my wife, who did not know what to think. Including me, who at times, again would slip into a deep depression from time to time agonizing over what to do. Having a family and especially children would keep me focused on what is really important in life.

Then a miracle; in 1975, my wife (ex); saw an ad in the Long Island Newspaper (Newsday) looking for individuals who displayed symptoms like mine. It was from NY University and they were doing a study on Tourette’s. I immediately made an appointment and went to Manhattan and was diagnosed with Tourette’s. It was an enormous relief to find out that what I have is not psychological, but actually physical. Further they have medications that can treat this condition. I was put on low doses of Haldol and again, it was like a miracle for me, for the first time in my life, I actually believed that I was “normal” with a condition no different than a broken bone.

Now, Haldol is no prize either, it’s a blessing and a curse; take too much and you cannot function, take too little and it does not work. So, over the years it has been a trial an error of many drugs, many doses, many side effects, considerable frustrations, but worth it. One doctor told me I am an experiment in Pharmacology! I am very fortunate, there are many, many other individuals with Tourette’s with much worse conditions that require much more medicine, or the medicine does not work at all.

In 1978, I joined a company that imported commercial laundry equipment from Europe. I was assigned a territory in the Midwest and was asked if I could speak in front of a group to give presentations. I wanted the job so I said yes, even with my history of Tourette’s being an oddity in a group, so I was very nervous. As it turned out, I was very successful as a regional manager, so successful that I was promoted to National Sales Manager responsible for the North American sales force and, as far as making that presentation, I made hundreds of them, they were not very good in the beginning, but I found my stride and soon I was asked by our national trade association to give many presentations’ on a wide variety of educational topics in front of as many as several hundred attendees. I would say that that overcame my fear of being in front of a group and built up my confidence as a person.

I am now in this industry for 36 years, over the course of that time, I have also managed another national sales force for another European company, owned my own finance company in this industry, owned my own distribution company that was awarded high sales volume by my supplier and in 2010 was awarded the honor of being one of 50 who have made a difference in our industry over the past 50 years. Somehow I did all this without the benefit of having a university degree. (Now, I do not recommend that to anyone today, so if you can stick it out, do your best, it is much harder to be successful today at anything without that degree)

In business, I hate politics in a company, although it typically does exists in every company; I just show up every day to work.  I Take my role as a manager seriously and have always believed that my role has been to support my staff with knowledge, whatever training they need, and ultimately help them to succeed instead of providing rope to hang themselves. With regards to my employers, I also take that role seriously, I have a responsibility to make the company profitable in the most economical manner. I would always spend the company’s money as if it were my own. And as a business owner at times myself, I know what that is.

What I realize today, in refection, therapy, and hindsight is that the Tourette’s does not own me, but it is still a big part of me, in my personality, in my drive to be successful, to be a better person, to help others, etc. I am still flawed because of it and if I had the courage, I would tackle that head on, but maybe for another day. I have big parts of my adolescence that are a blur or a blank.

My experiences with Tourette’s have made me more compassionate towards those who are less fortunate, those who are atypical in society, and those who are bullied. I am much more liberal in my attitude regarding those things than some other business persons and other people in general.

I still struggle with my symptoms, even at my age. It’s very frustrating at times. The obsessive compulsion component piece of the condition had me chain smoking, over eating and some other things, fortunately not compulsive drinking. I stopped smoking in 1986, I struggle with weight and became diabetic, and working through that now. What can I say? Even at 66, I am still a work in progress and I would not have it any other way.

As I said previously, Tourette’s does not own me, it has made things harder for me, but not impossible, I forget what baseball movie this quote was from, but “it’s the hard makes it good” or something like that. I do not mind working hard to achieve what I want in life, I have had great jobs, lousy jobs, made good money, lost money, made good decisions, bad decisions, but I have lived a life and am still living it. I have travelled all over North America, Europe and more, I could never have dreamed that when I was a teenager on Long Island. I have genuine friends all over the globe. I am still far from done. I still have more to give and goals to reach. I cherish my family, children, grandchildren, nieces and nephews. We all came from good stock and good values.

So, there were many  times that  I was depressed because I was cursed with this condition, and the effect it had on my life, but when I look back on my journey and what I still have ahead of me, I do not know what I would want to change. I guess it made me a better person inside.

I wrote this for two reasons, one for me, so I could reflect on myself and my life to date to help myself heal some wounds, but if it can help anyone who is in a place right now, not knowing if he or she can go on and make a life for themselves, you can, it may not be easy, but you can. If I was fortunate enough to get two women to love me enough to marry me and allow me to be a partner and parent, you can.  You can also have a circle of friends that will cherish you, and a business community that respects you. It starts with getting up every day and putting one step in front of the other, and making a commitment to something worthwhile, working hard at it and setting goals. But also remember, be flexible, every time I drew a line in the sand I ended up erasing it!  The only thing constant in life is change, change is to be embraced, and complacency is the enemy.