Today’s post is written by guest blogger Alec. He shares his recent journey with Tourettes, and describes the key things that’ve helped him cope since the onset of his tics ten months ago. Over to Alec…
To start with, I’m honoured to write an entry for a blog from which I draw so much personal help. Whenever I have a low moment, I can find strength from Touretteshero’s experiences, and pick myself up without fail.
I’ve been thinking a lot about coping of late, and developing coping mechanisms. My name is Alec Stott, and my Tourettes only properly surfaced in February this year. After ten months of living with an increasingly severe condition, I’m now in a state where I tic, at the very least, once a minute, and usually more like every few seconds. At times, with this huge change in my life, I find it extremely hard to cope. Usually I get along fine, with the enormous support I have from friends and family, but there are three key mechanisms I use all the time to make sure I can cope properly.
I make my tics a part of me, and a part of my social life. My family and friends are all frequently reminded that I don’t mind, and actually prefer it, if they laugh at my tics. The syndrome itself isn’t particularly fun or funny, but it cannot be denied that when I tell an elderly stranger that it’s ‘Bath-time with the Boogie Monster’ it’s very funny, and a moment in my life that should be cherished. I treat these better moments like the silver lining of the condition. Sometimes it’s hard to cope with, and can be a burden, but what the syndrome itself comes up with is golden, and could almost be considered a bonus in my personality. People revel in hearing my one-off tics, such as ‘All aboard the Tapas donkey’, and ‘Fingering a lion in the winter is ill-advised.’ Tics like these spark new conversations and topics which, without Tourettes in the room, would never even exist, and so the blessing of this humorous side of life is something for which I’ll always feel grateful.
I try always to acknowledge when I need help. I’ve realised, but only recently and after stubbornly refusing to acknowledge it previously, that there are certain things I can’t do any more. I can’t carry things in my left hand because I motor-tic and throw them around the room – I can’t eat without a pillow or towel covering my chest because I stab myself with forks – I can’t do the sort of job I’ve done in the past because of the health and safety risk to me and to the people I worked with, caused by my drop tics (where I fall to the floor uncontrollably) and my ‘ticcing fits’. And for similar reasons I can’t stand up safely in the shower. Being stubborn only causes bad things to happen, and being proud isn’t worthwhile. As an example, pride led me to smash a bowl on my head simply because I wanted to prove I could carry several things at once using both hands. My pride led to me doing something I’m not proud of – perfect irony I believe. This event shed a light on the damage pride can do, when I’m really thinking only of myself. That’s very selfish when the people around me do so much for me.
I challenge myself to adapt my way of living to accommodate my tics, and enjoy it when I manage to. If I stab myself in the chest when I eat and smash bowls on my head when I carry things in my left hand, why not beat the tics with creative forward planning? I’ve learnt always to protect my chest when I need to – I’ll make sure I only carry what I can carry safely, to avoid embarrassment. My drop tics usually leave me flat on my back, so I’m learning to improve my balance. Each time I drop-tic I try to stay on my feet, and each time I do stay on my feet I feel as though I’ve achieved something wonderful, and I can hop back up with a smile on my face.
Essentially I think this all boils down to having a positive outlook. So I have this syndrome, which can be debilitating, and it can be a pain in the arse. But who benefits from my moaning and groaning about it? I’d sooner make people laugh with funny stories of humorous antics than sit about complaining. It’s worth remembering that there is always someone worse off, and in moaning about your own problems, you’re almost disrespecting those people who are worse off. I don’t want to be disrespectful, and I do want to enjoy life.
Utilizing these three helpful tips has made coping a possibility. They cover the condition no matter how severe it becomes, and I know that however bad my tics get, if I focus on the three of them I can still have a smile etched permanently on my face, happy in the knowledge that my friends and family are around to support me. It might be a very big change in my life from 10 months ago, but really I should, and do, consider myself blessed…
If like Alec you have strategies that have helped you cope with tics or with other challenges you’ve faced please share them by commenting below.