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  • Self-indulgence

    Hi, all,
    I've spent my first few hours on this forum compulsively reading all the adult TS posts and replies, and then figuring out how I can post. So here I am.

    I'm male, 43, self-diagnosed with TS when I was about 20, gradually realized that I and the rest of my family probably have OCD (really awsome family dynamics...NOT), and that ADD is somewhere in among these way too sparky synapses. I've been lucky to be mildly afflicted in all of those.

    My motor tics have spanned the gamut from wiggling my toes (sometimes triggered by too-tight shoes), to tossing my head back or sideways, through shoulder rolls, wrist rolls, ankle rolls, pevic thrusts, butt clenching, torso clenching, and various facial contortions (mouth, eyes, probably bruxism)...and likely more. I forget.

    My phonic tics have included sniffing, vocal closed-mouthed inhalations (make any sense?), etc. I forget even more.

    My tics were the worst during the hormonal, social, familial, and educational mayhem of puberty. Headaches from head tossing were frequent. Joint pain from jaw and shoulder rolling made me hate myself and wish to die (an apparently idle wish, seen from today). Support from my mother consisted in ignorant acceptance and accomodation. Support from my father consisted in ignorant intolerance.

    My tics have subsided since then. There are no phonic tics, except the odd sniff. Motor tics have mostly stabilized to torso and butt clenching, and head tossing. Stress still gets me going. I still mostly suppress in public, release in private.

    I have not been on meds with any significance. Half a year on haldol back in about 1988, in vain. I don't like the idea of meds, and I live so as not to need them.

    I grew up with a bad temper, losing it if my bed didn't let me do it up right, if things didn't go my way. I still have fits, and have learned to repair drywall, but now I live alone, and am better at avoiding situations that trigger me.

    I have had a few "couple" relationships, but invariably after a year or two, when my obsession of running my own life starts acting up, and my temper starts building, and I haven't told her off but I sense that I will, I back off emotionally, then officially, and politely. My parents wasted my young life with endless bickering, shouting; I refuse to follow that path; better to leave it. Obsessively saying no to crap can be handy.

    Solitude helps me be myself, with no one trying to shape me to their needs. Maybe the hazy, movement-smeared sense of self I have formed over all these years makes it hard for me to define clear, consistent boundaries with others. One day, I'm OK with something they do; the other, I just can't stand it; then later, I'm OK again...???

    I still resent anyone who takes my life in hand and starts saying "You should..."; I belong nowhere around such people, be they family, acquaintances, friends in the "OUT" pile.

    I self-diagnosed when I saw a TV show in the early 80's: Quincy, with Jack Klugman, about a coroner spending an episode defending orphan drugs, such as those needed for Tourette Syndrome. The ticcer was much worse than I'd ever been, but the tics were me. It had a name. I was dumbfounded. The neurologist my mother took me to said I had nothing; I was suppressing my tics. I tried Transcendental Meditation, which worked for a while, till people's noises outside my bedroom door started triggering my "Will you be quiet!" tantrums. My father thought my sniffing was because of a deviated septum (accident) and paid for plastic surgery. Even 10 years after he knew my condition had a name, he believed that I could control it. I've never tried to educate him; I'm still too miffed.

    Through all this I've managed to get an awesome education, and I was a top student, despite the fact that almost every assignment with a deadline was sheer torture to plan, initiate, execute, and finish. Thinking I could fix myself, I got a degree in neurobiology, only to let my ADD distract me into studying jellyfish nerve cells, rather than human. It WAS interesting, fun, exciting, and I learned a lot about making an experiment work, about fiddling with things (compulsively) till they pay off, and about the survival uses of strange features of marine invertebrates. Writing my thesis, believe it or not, was the downfall of my scientific career. Struggling to push out a thesis DOUBLED the duration of my program; the stress of deadlines just paralyzed me with distraction.

    A very wise professor called Norm told me that a scientist's job is to write. Financially speaking, the experiments are irrelevant if you don't write about them to granting agencies, to journals. When I realized that I would be torturing myself for a living, I decided to finish the degree, then leave that track.

    I've since spent lots of time learning and thinking about our environment, physical and mental, and gradually changing my immediate surroundings till I felt saner. I'm now living a much less stressful life. I think of TS as a signal for me to ease out of the craziness of the so-called civilized world I live in. I think of OCD as an opportunity to linger on a part of the world till I know it through and through, and a handy way of keeping my apartment tidy. I think of ADD as a fun way to not get stuck on any one thing and to surf the world for interesting stuff to know.

    I don't need a car to drive around crazy-making roads, so I don't work to own one, and have more free time living near work, food, and play. I don't need a TV to tell me what I should get that others have, so I spend my time making things that are useful and sellable (and they sell). My only career is to live a good life not trashing the world I live in, so my main job is selling eco-friendly products. I don't need to fill my schedule with tons of activities that set my head spinning, so I say no thanks a lot, and happily. Maybe it's rude, or TS-ey, but I give our silly world one great big F-off and live at my own ticcy beat.

    Thanks for reading.
    Cheers.
    Jan

    P.S. This novellette was written under no deadline, or expectation, or threats to my immune system.
    P.P.S. I'll be briefer, next time, OK?

  • #2
    Re: Self-indulgence

    Welcome to the TSFC Forum, Jan!

    I'm a night owl in BC so I think I'm probably privileged to have been the first one to read it and reply! I thoroughly enjoyed your exquisitely self-aware and literate posting. Without the rigours of scientific imperatives hanging over you, you really do have a gift for encapsulating your experiences with a wry humour. Please keep writing, if only to inform and entertain us Forum types! Science's loss is definitely our gain on this one!

    As the mother of a 15 yr. old son with what we term TS+++ (because it acts as a catch-all for a number of different challenges he faces), I really appreciate your view from "the inside" because he (and we) can see the positives and not so positive sides of TS. I heard some echoes of things my son has tried to convey to me in your posting.

    Going to TSFC annual conferences, I've met many amazing people with extraordinary minds who are, almost by definition, "out of the box thinkers". I take great encouragement from reading about how you've put the puzzle together in a way that works for you. It sounds like you're in the vanguard of the "simplicity" movement (big out here on Vancouver Island in the small town I live in!) It's something I'm trying to learn and apply in my own life because I do think we've adapted as a society to being on a hamster wheel of busyness. I'm also learning to be grateful that it is my ever-brutally-honest TS son who pulls me back from the brink of disaster when I start overdoing it. We're all trying to find a way to balance and I commend you on yours.

    I do hope that your parents can come to a better understanding of what TS actually is. It's not the unmitigated affliction it's made out to be by the media! Please don't give up on them. My life (as a parent who does not have TS) has been enriched and broadened by learning all I can about TS, as has yours, and I hope that they will try a taste of it as well. It gets addictive once you start getting more involved. As one speaker I heard (S. Pruitt) says, "TS helped me get rid of all my surface relationships." I hope that your parents will be open to a deeper relationship with you as they are able. Hey, and don't give up on the females out there either! You sound much more in tune with your "life rhythms" than most people.

    I hope that you'll be a frequent contributor to the Forum, Jan! I'm glad you've already checked out the Adults with TS section of the forum as well.

    What kind of inventions do you make and sell? Now you've got us curious! Seriously, have you thought about writing about some of your experiences in more depth, especially about how you sorted out how your brain is wired and functions at its best? I, for one, could use some help in that area! The TS Green Sheet (newsletter) that comes out periodically for members is a fount of information. The scientist in you is still alive and well! Hey, and thank God for "Quincy"--I'm old enough to remember Jack Klugman too! Nice to know they got the word out there even then! Wow!

    Comment


    • #3
      Re: Self-indulgence

      Welcome to the forum Jan!

      I too greatly enjoyed your posting. Hurray for you to have been able to understand yourself so clearly and "modify" your life and surroundings to suit your needs.

      I am envious of your ability to simplify your life. It sounds wonderful!

      You have offered a new and fresh perspective on all of this. I very much look forward to reading your future postings!

      Patti

      Comment


      • #4
        Re: Self-indulgence

        Hi, Valmac, Mom2TSguy,

        Thanks for your feedback.
        It felt good to have written, but I keep remembering things I could have added, mostly about my less dreary present, rather than past life. I'll write a short one.

        Valmac, about my crafts:
        I make recycled notebooks, from used paper (folded with the blank sides out), coat hanger wire for coils, LPs and LP sleeves for covers. I've taught myself stitched bookbinding as well. I've made some not-too-fancy jewellery from bicycle parts (spokes and spoke nipples). I occasionally handmake paper from old paper, using a pedal-powered blender I built. I've made the odd chair from corrugated cardboard... It goes on. I'm not short of ideas, and OCD helps me focus to the end of the project, even if it may sit for a few days, weeks, months, years. My compulsion to refuse hoarding has helped me keep my apartment from becoming a junkyard. I limit my scavenging to things that I know I will use, according to S.T.I.M.; Space to store and make, Time to make, Idea for immediate use, Motivation to do it.
        Anyway, I've gotta go now.
        S'later.
        Jan

        Comment


        • #5
          Re: Self-indulgence

          Hi Jan
          I enjoyed your post. I often wonder how my boys see things. I would like to ask you what your parents could have done to make your life a bit easier as a child. I'm not sure sometimes if we're making things better or worse for our boys.

          I really admire your ability to do everything you have done without medication. Our oldest son is really against trying meds, even when we sometimes think he should try. What are some things you did to make life tolerable?

          Looking foreward to hearing more from y0u
          Lynn

          Comment


          • #6
            Re: Self-indulgence

            Jan

            Welcome to the TSFC forum and I am glad you took the time to offer a great over view of your life. No post is ever to long on this forum and it is a great place to vent and share ideas.

            I personally understand the simplification of your life and can relate. I was once told I was too simple in the way I live and at the time I think it was suppose to be an insult. I thanked them anyway that they had noticed what I had accomplished.

            My son has TS+ and with it can come the rage attacks on occasion still though he has learned to sift through the issues and triggers and move on without as much damage to the walls. He is on the high end for TS but manages it very well now that he better understands it and why he responds the way he does.

            Your professor was right and I am glad you found something that you enjoy out of life instead of finding yourself trapped in a career that would suffocate you and drive up the stress levels in your life.
            I think everyone should follow that path no matter who they are and often some of us just don't realize it until we are much older and life is spent.

            I look forward to your continued posts and I hope you open some topics of your own.

            If you need some assistance navigating around the tools just let us know via (pm) message and we will be glad to help.

            If you would ever like to edit your post the option is available after posting or during the preview option.

            Take care and glad to have you as a new member.
            PJK

            Comment


            • #7
              Re: Self-indulgence

              Hi all,

              Thanks for your replies, compliments, encouragements. I'm glad I can be of some use to you.

              I wrote about 4 hours of replies only to lose them all through my clumsiness with the system. I was angry, but it was surprisingly controllable, because writing helped me figure out some stuff for myself and put me on enough of a happy buzz to keep from going ballistic. Plus, I wasn't at home, in a safe place to blow off steam.

              So, this time, I'll reply a little at a time.

              Valmac:

              "vanguard of the 'simplicity' movement"
              I get overwhelmed easily, so striving for simplicity is a way to reduce the excess stimulation of the world around me. Irritation and frustration are important motivators for my going that way.

              It's funny you should mention Vancouver Island, because I think I really decided to tune out when I was doing research in Bamfield. Walking in the rainforest, or along the beaches, spending time in this remote village was certainly a balm to my easily overloaded senses.

              "my ever-brutally-honest TS son"
              My mother has called me brutal in our conversations. She didn't like that part of me. It's good to see such traits appreciated (after some adaptation, I suppose?).

              "I do hope that your parents... Please don't give up on them."
              I haven't been around them for years. They live apart (divorced since 1984) in Montreal, I'm in Edmonton. About 2001/2002, I decided to shut them out of my life. I felt like most of our interactions involved them trying to run my life. In their presence, I felt stifled, shut down, disconnected. I have not written to them or read their mail to me. I have not phoned them and have only gotten a few calls from them. About a year after I closed the channels, I stopped biting my fingernails. Since childhood I've chewed my nails till it hurt, sometimes till it bled; now, suddenly, that's over. I think family life, and life in proximity of other, meddlesome, people is another source of overstimulation. I think I'm rid of it, for now. When we can talk as people, not parents and offspring, I will try again. The few recent contacts have not been promising.

              I think I'll let off now.
              Thanks for the chat, Valmac.
              Jan

              Comment


              • #8
                Re: Self-indulgence

                Welcome to the Forum, Jan. Glad you have taken the time for a thoughtful and informative introduction.

                Feel free to join in any ongoing discussion or start as many as you would like.

                Looking forward to your participation in theTSFC Forum!
                Steve
                TouretteLinks Forum

                Comment


                • #9
                  Re: Self-indulgence

                  Hi again, Jan:
                  I'm the same when it comes to writing: even if it never gets sent, it helps me to work out stuff! Often I write emails and then don't send them or go back and shorten them down to just the basics once I can see more clearly!
                  It sounds like you've gotten to the place where your life works, despite your parents' worries, which were non-productive. I'll take it as a caution too, that as a parent I learn when to let go! My son's pretty good at not letting me take control, I must say! Some children do end up surpassing their parents in emotional maturity, it's true! I hope the break helps your parents to ease up on expectations and realize what they've "lost" before it's too late! Please try to keep your heart open should they have a change of heart. I think we all have regrets as parents but only some of us get to set things straight. I hope they choose that path.

                  Meanwhile, keep well and keep on writing!

                  Val

                  Comment


                  • #10
                    Re: Self-indulgence

                    Hi Lynn,

                    Here's my reply to your points.

                    "I would like to ask you what your parents could have done to make your life a bit easier as a child."

                    This may be too much to expect, but if my parents had got along better together, it would have created a family culture of peacemaking, understanding, tolerance, and much less overstimulation. Two parents with obsessive traits, however, are more likely to pursue their points doggedly in an escalation of conflict, which in our case reached screaming and sometimes hitting levels. Dad was the louder and more physically violent of the two. Mom exerted a more psychological violence. It was a war zone. In my own life, I often find myself seeking conflict, rather than solving it. I read a book entitled "ADHD and Romance" which painted a very familiar picture.

                    They did give me my own room, which was a good way to allow me my own safe space, to tic, to stare at the walls, to write, etc.

                    A father at the Edmonton TS support meetings gives his son some responsibility for calling his time outs, asking him rather than ordering him to his room. I think that's a very good idea. It breeds respect.

                    ACCEPTANCE is really, really, really important. Despite not knowing about TS till much later, my mother learned to accept my tics and helped figure out some ways of reducing stress. My father was irritated by my tics, kept insisting I could control them, remained blind to their repetition and robustness, denied that he, the engineer, could not control this part of reality. That gave me no end of stress and frustration, and to this day I resent him for that.

                    Despite the negatives, my parents gave me a great education, all the material necessities, a lot of support in developing my talents. They signed us (me, older brother, younger sister) up to swim team, tennis classes, piano lessons, etc. Overall, I'm OK. I have food every day, a home, friends, work that inspires me and pays the bills. I'm doing better than most people on the planet.


                    "What are some things you did to make life tolerable"

                    Doing things that absorb my attention reduces or eliminates the need to tic. That feels so good. I try to do as much of that as possible, some of which pays money. Getting involved in the busyness of running a store (helping customers, unpacking and stocking product, etc.) is absorbing, involves physical movement, makes me less ticcy, and pays the bills. Cycling, feeling the shifting effort, shifting balance, is soothing. Playing music, making crafts, working with my hands, focussing on a small building project and carrying it to term. And so on.

                    Routine movements become a dance that flows and bypasses tics. Maybe like when stutterers sing they don't stutter. Prepping supper in the kitchen, I know where everything is, and I bend, stand, turn, spin, chop, fry, pour with flowing familiarity and pleasure. As a teenager, I did a fair bit of lawnmowing; pushing and pulling the machine around was quite like a dance. I tried tai chi and enjoyed it but it became too much stuff on my schedule.

                    Keeping my schedule light greatly helps reduce my stress levels. Planning for no more than 2-3 important tasks in one day is plenty enough. I'm not very rich, but I don't need to be.

                    Routine is good.

                    Most of all, being alone at the helm of my life is probably the single best source of sanity for me.

                    I hope this all helps.

                    Cheers.
                    Jan

                    Comment


                    • #11
                      Re: Self-indulgence

                      Hi Lynn,

                      A few more points I forgot in my last reply.

                      I have an overactive internal taskmaster. Everything I see at home generates a "To Do". Learning to dismiss that when necessary was useful to me. I have used my anger to shut down the task generator or keep it at bay. Sometimes I imagine a cartoon gnome hassling me, and I thrash him, toss him in the ditch. Often, I make myself aware of how unpleasant it is to be confused, without one thing to focus on. Then I sit and stare at the wall, waving off all tasks/intentions like so many falling leaves, until I've calmed down. Then I'll let only one task through, get up, do it. Then I'll let another through, etc.

                      My most recent version of this is to say out loud "One", as in "Focus on one task now", then do that one task. If that doesn't get me fully on track, I say "Two", etc.

                      I have one day of inaction per week. All the tasks I feel I need to do around the house or for work, I dismiss them. It's hard, and seldom perfect, but it helps me rest.

                      I avoid eating sweets, dairy, 3 hours before bedtime. They keep me awake, unsurprisingly, and make me ticcier and crabbier the next day.

                      I occasionally will try to avoid my tics by controlling my breathing. Tics usually cause me to hold my breath. If I can keep the breaths going (lightly, like pushing a swing, not pumping water) when I start to feel the urge to tic, the tics can be avoided. Alternately, holding my breath for 2-5 seconds helps stop a bout of tics when I'm trying to sleep.

                      Bye for now.
                      Jan

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