Sunday, 1 February 2015

Living Dangerously

I like to take risks.  I have three identical containers each holding either dishwasher detergent, sugar or salt, side by side on the counter, right at the spot where I make tea and coffee.  Given that I frequently catch myself about to put the cream away in the cupboard, this arrangement of white powders is quite dangerous.  I am quite worried that I may have given my cleaning woman a coffee with salt in it last week, but keep telling myself she would have said something.  Living with a neurological illness which I have had most of my life, I do not always know where my personality ends and damage begins.  I can be very graceful if I think about it and took years of ballet and other dance lessons as a child, but since I am usually not thinking about it I tend to be more accident prone.  I fall.  I bump into things.  I am the one who hits the table leg with her own leg as she sits down and makes the table shake and spills everyone's drinks.  I cannot navigate my way through a doorway properly.  I believe this is because my head is elsewhere, my thoughts are miles away and not on what my body is doing.  Sometimes my thoughts are not on what my hands are doing and this could lead to salt in the tea.

There are many ways of being, ways which are technically considered syndromes or disorders and which are difficult to sort out from personality.  Some people balk at labels, insisting that we are all our own unique selves and should be loved and accepted, which I would certainly agree with.  Others say oh just be you and get on with things, which is a perspective that has its merits also.  But both miss the point a little bit.  When behaviours interfere with daily living so as to make an individual struggle, when they stand out and cause some sorts of discrimination or teasing, the result is pain, and if they put the person at risk of harm whether emotional or physical, then they need addressing.  This is when it helps to label things.  To identify and give a name to something allows ownership of it and ownership is power.  We so often associate labels with a negative perspective but that only comes about if we view the behaviour as negative.  I have no objection at all to attaching many labels to myself.  In fact, I would argue that I am a complex person and am covered in labels.  I add new ones and some fall off.  Some, like the label 'wife' are ripped off quickly so as to cause less hurt, just the way a parent quickly removes a bandage from her child's knee.

For some people, some labels bring them shame and they do not wish to associate with them.  It is their choice, though it may be medically necessary for a doctor or family members to recognise a label,  so they can offer appropriate support, yet it is needing this very support that can lead to people rejecting labels.  If we live in a western culture we are encouraged to be individuals, to be unique, to be ourselves, to take pride in that.  We want to be unlabelable.   We do not want to ask for help; that is a sign of weakness. To need support, the support that may come more easily if one has a label, is to be the weak member of the herd and the lion is going to get you.  I think this is all a bunch of bullshit but it's a pervasive attitude.  Empires are built on it.  Empires all eventually fall though.

Among my many labels, particularly the ones that could be classed as a disorder or syndrome is a mild version of Tourette's Syndrome.  My son was diagnosed with it when he was a child and it is a hereditary condition.  The psychiatrist asked me, "Which parent does he inherit it from?"  I answered that I did not know and she replied "I think it's you.  I have been watching you."  I was not offended but fascinated.  Suddenly so many things made sense.  Tourette's is on a spectrum as so many things are.  We all have a tic or two but it is a particular type of collection of them that makes Tourette's Sydnrome.  Popular media likes to portray the shocking version of it with an individual who cannot control swearing, potty language or otherwise inappropriate comments.  This is the extreme end of the Tourette's scale and neither my son norf I do that, which does indeed make us more socially acceptable.  Some people with Tourette's have tics which cause them physical harm or pain.  It is only for these extreme cases that people are likely to use medication to stop the tics.  The rest of us with a mild to moderate collection of them just get on with things but having the label helps enormously with self acceptance.

Both my son and I have tics centred on our mouths.  An overwhelming need to move lips in a certain way.  I will mention here that tics are not a habit that can be broken but are often treated that way by people who do not understand and children often suffer the nagging and lack of acceptance from parents who cannot understand why their child persists in muttering under his breath, making certain noises, or flicking the tip of his nose.  Before his father understood the tics, my son was always being told to stop doing this or that as it was a bad habit or it looked weird.  He said the same sorts of things to me.  I was told that I looked like a crazy person because I was out in the garden moving my lips.  When I get a song stuck in my head I move my lips silently, mouthing the lyrics.  I also silently mouth imaginary conversations, but the silence was my own adaptation to being outside where a neighbour might hear.  When I am alone and believe myself unheard, I speak these conversations out loud.  I am not crazy.  This is what a tic is.  The words and thoughts fully formed in a conversation exist in my head and must come out and my lips need to feel the movement of speaking.  This is akin to needing to sneeze or scratch an itch.  Often I press my lips together very firmly.  There is a need to press despite my knowing it looks a bit odd.  My son had pressing needs too.  For years he had the sensation that his toes were falling off and he had to push them back on constantly as he walked.  Tics can change, come and go and alter over the years.  Thankfully he no longer has the toe falling off tic.  The sensations are so strong a small child believes they are real.  Before he was diagnosed and I understood more about Tourette's, my son would tell me that he had to rearrange his mouth and put his lips back in the right spot on a regular basis.  For my son and I, most of our tics go unnoticed by people.  They are small and private enough that maybe only one or two are visible and as I stated earlier, most people do have a tic of some sort.  We look 'normal' even if we secretly are performing little motions and sounds our brains are compelling us to do.  A label was enormously helpful in guiding my ex husband to better understand and accept our son's tic behaviours and to stop shaming him by trying to correct his behaviour.  It didn't seem to prevent him from being embarrassed by me though.

Understanding tic disorders and Tourette's through personal experience allowed me to better support a few students who turned out to have it, and in particular to help their parents understand it.  One mother was more inclined to be like my husband was and really struggled with grasping the idea of her son not having control over the tics without great cost.  An individual can suppress some tics but it is enormously draining of physical, mental and cognitive energy.  My son tended to suppress many of his tics while at school and would then come home and explode with them.  He had a wonderful group of friends who were completely accepting and I remember them sitting around the table together eating a snack and chatting lively, goofing around and being silly and Duncan's tics were all just part of it.  He was not ashamed of them and sometimes the boys even tried them out for themselves, almost making them cool.

While the tics involved in Tourette's can be mistaken for bad habits, Attention Deficit Disorder can look even more like a defective personality.  It too tends to be inherited and it is not uncommon for children diagnosed with it to have a parent who struggled with not being diagnosed at all and blamed or punished for  bad behaviour.  There is probably an epidemic of over-diagnosing in the United States, and children medicated for hyper-activity when other issues are actually involved, but I am not addressing that here.  This is a personal story and in this case it is the non-hyper variant of attention deficit that is the issue.  It is less readily diagnosed and my son struggled with it and remained undiagnosed during his school years.  I have wondered if I have it myself, though I am not pursuing a diagnosis as it doesn't matter much in my case.  Given that I have a neurological illness, it could be symptoms of that I am experiencing which could easily look similar.  In my son's case it has been present his whole life and forehead-slappingly obvious now that I have the benefits of hindsight and knowledge.  Diagnosing children with anything can be difficult.  They are growing, changing, forming, and we don't know what is their natural personality, what is caused by environment and what they will outgrow.  The danger of overlooking disorders that disguise themselves as personality traits is strongly evident in my son's story, of which I have only just scratched the surface here. 

On a daily basis I am clumsy, forgetful, absent minded, dreamy, fixated on thoughts and struggling to concentrate.  How much of this is my 'natural' personality?  How much is the CFS/ME?  What other issues are involved here?  I don't know exactly and for me it doesn't matter much.  My life has evolved into a pattern that allows me to function happily and also to not function well still with relative happiness, to work with my limits and to not worry about labels.  Not everyone is this lucky but I have also worked very hard to get here and this is a label I will  proudly wear:  Hard Worker.

Here is something else I will proudly wear.  This is my St Andrew's Day  Burns Day (oops I said the wrong one-oh well) outfit and it included a tartan skirt and a brooch that once belonged to my Scottish Great Grandmother and which I believe was also made in Scotland with local stones.  They don't all show up in the picture.

Skirt and Sweater-thrifted
Boots-new bought with Christmas money

This might look minimalist, but in a cafe filled with people wearing jeans and tee shirts or athleisure clothing, I still stand out.  It is not my goal, but neither does it bother me.  I have always stood out and learned to live with it.  You won't miss me.  I will probably be the tallest woman in the room and unless it is a party, the only one wearing a skirt.  I will also be pressing my lips together like I've just put on lipstick.



  1. first - i like your st.andrew´s outfit - all the things that i love for a good ensemble: tartan skirt, heavy knitted sweater, heritage jewels, sensible boots.
    this is a very wise post. i´m too for labeling and addressing things right - only if we have knowledge of them we can handle the things in a right way. what brings me to your containers - in the names of all gods - LABEL THEM!!!!
    hugs! xxxxx

  2. A few years ago my son was diagnosed with Asberger's Syndrome, a form of autism. I discovered that it was inherited through me and so much of my personality suddenly made sense. Thank you for sharing your experience! Parenthood sometimes teaches us more than we expected.

    1. Hi Bobbi, thanks for leaving a comment and sharing a bit about your experience too. I think that making sense of it all is empowering. I wish you and your son all the best!

  3. What a lovely outfit. I do love the shape of your skirt!
    The stones of your brooch are so gorgeous, as is the story. I also love the jumper and the boots! I'm saving for boots at the moment, so getting ideas at the mo.
    You and I are about the same height...we should get together!(not to steal your boots, just to be the tallest in the room together!)
    How lovely to hear all your thoughts about labels. As you know I have some too!
    It is interesting to wonder where one starts and the other ends, especially with children. I have found my diagnosis to be extremely helpful, although I'm still trying to accept all my little ways. A work in progress in acceptance and learning to live victoriously within your own limits. I constantly try to fly, and then realise I've had my wings clipped. But living in a backyard, can also have its pleasures. I just need to remember them. You help me with this. Phew, that was a long response! xo JJ

  4. PS. You look very teachery standing next to your blackboard! :-D

  5. Shawna, you look so lovely in this wonderful skirt and fisherman sweater. The booties are very cool too. I was also thinking when I looked at these photos that your home suits you so well - bringing together the artist and the teacher in you!

    I did not know about St Andrew's Day and looked it up. They say it's celebrated on November 30 in Wiki article. Any particular meaning it has to you?

    I think I understand your point. For intellectuals, I agree, what you are talking about is helpful. I don't like labels, sorry. There is a great potential in all people to really get each other and be truly compassionate, and it's beyond intellect - from the spirit. Spirit knows it all without judging, labeling, sorting out. That's where the true acceptance comes from, always from the spirit.

    Much love to you and your dear son xxxxxx

  6. Very cute dress and sweaer combo! I think that it is really cool that you were able to learn something major about yourself, while you were getting help for your son. It is awesome that you will always have that bond.

  7. Wow, that skirt is amaaazing and I love your word athleisure. I've never heard it before. When everyone is in athleisure wear you must turn heads, in the best possible way. Outstanding! We need more people like you. Thanks for explaining these conditions. The more we all know, the more the walls fall down. Hurrah!

  8. Here's another label for you - BRAVE.

  9. I really like the tartan skirt and sweater with your Great Grandma's brooch and those cool boots. Like Natalia, I understood St Andrew's Day to be on November 30th, though we have just had Burns' Night on Jan 25th!
    Labelling... yeah, it gets a bad press, and I can understand that if someone feels reduced, defined or confined by a label, then that's not helpful. But if you see it as naming rather than defining, then I think it's OK. I'd want to know, I'd want information and a discussion about anything which affected me or my loved ones, and having a name for the issue is a place to start. And as you say, it can be the gateway to support, if that's what is needed. Seeking knowledge and understanding in order to make progress seems to me the opposite of weakness.
    Very interesting and thought-provoking, Shawna - and as ever, Beate made me laugh with her urgent request that you label those containers! xxx

  10. What a co-incidence, I was having a meandering thought process about something very similar today. I worked 5 years in a school with a high percentage of kids with varying needs, my students were autistic. The children I worked with asked questions about their assessment, often their own parents hindered progress 'they can't, they have...' which impacted the children 'I can't, I have....', of course it wasn't everyone, but like Curtise pointed out, the label defined some family members , these children were smart and funny and were hindered from the outset, but I agree you need to have a diagnosis/label in order to move forward. When one of my family received a pretty heavy MH diagnosis it meant we knew what was going on, they couldn't get on with it, medication and psychiatric help was the way forward. Getting help saved their life, like you I don't view getting help as weakness either, it's a bloody courageous thing to do! Now, will you put labels on your containers! ps I adore your outfit x x x

  11. It was very interesting to read it both from the perspective of a parent and somebody who struggles with tics herself. I'm quite familiar with this subject as I researched it a lot while I was a student but it is always good to know more.

    I think there is both a fear of diagnosis/label in this world and a strong desire for it. My personal opinion is that the unhealthy attitudes come from the fact that people are afraid that a certain thing, if acknowledged, will take over their life. People are always afraid of things they can't control.

    I think there are two extremes in the western society. One in which the person is made to feel uncomfortable if having any medical problem and the other in which the medical problem is present as the crucial thing defining the person...both these extremes are unfortunate ways of dealing with life. I don't know why it is so hard for society to accept that we all have some health problems (at least minor ones) and are all unique in our personalities and methods of dealing with this world.

    Wonderful look...I really like the tartan skirt...and the brooch seems lovely...I wish I could see it up close.

  12. nice!!
    follow to follow?

  13. Hi Shawna, this post is and interesting yet compelling and educative read. I have heard of Tourette's Syndrome but don't know much about it. Now I have a little bit of understanding of it. You are one brave and inspiring woman. Keep up the good work!! xo

  14. Shawna that's a lovely outfit and a great post. love and hugs xx


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