08 September 2009

Changing Attitudes

This post is more than anything a personal reflection as I take stock of yet another change in me. Putting emotions and reactions into words and sentences helps me make sense of things, and this is one of those instances. I need to be brutally honest, and look at “me” in all its non-glory to understand what has happened here. So if anyone reading this is into much lighter stuff, or does not feel like delving into Nan P’s self psycho-analysis (or what you may care to call it), I’ll understand if you skip to another blog right now.

And if my choice of words seems insensitive and offends anyone, please bear in mind that it is not intentional, as I am only trying to express very deep and complex feelings here.

I like being in control. In fact, I am a “little bit” of a control freak (and that is putting it mildly!). Just ask Cathal’s Mammy, or Cathal’s Uncle. Over the years I have learnt to let go of both my children, but it has not been easy, and sometimes it is very much still only on-the-surface behaviour. Hopefully, slowly but surely, I get there. I don’t know if it comes from growing up for the first 12 years of my life as an only child, and thus being at the controlling centre of my parents’ circle. I just know I hate not being in control. In any sense. For example, I have never taken drugs, simply because I am terrified of not being in the driving seat of my behaviour, my words, my thoughts. As I was growing up, and until my early teens, I used to suffer from fainting spells on a regular basis (I was finally diagnosed as being hypoglycaemic, e.g. low blood glucose levels, which I thankfully have learn to control very well; the last time I fainted was about 27 years ago, but I was pregnant at the time, so that does not count!). I vividly remember the feeling of loss of control of my body, my mind telling me “here we go again!” and not being able to do anything about it, to tell anyone. I had not learnt to recognise the tell-tale signs then, and being semi-conscious as I could feel my dad or my mum carrying me to the nearest couch or bed before the total darkness took over was truly frightening.

It turns out that as a result I have never been able to get drunk: one glass is fine, two and I am nicely tipsy, the third sends me straight to sleep thanks to the sudden overload of sugar in my body. I sound boring, don’t I? But because of this, I find it very hard to be in the presence of people who might be (even mildly) stoned or drunk. I am still in control, and they are not, and that frightens me.

Also I think I operate on two very strong levels: an emotional one (anyone who has met me face-to-face will probably attest that I easily wear my feelings on my sleeve) and a logical one. I like things to “make sense”. As a result, I find it hard dealing with people whose behaviour may be described as erratic, simply because I can’t make sense of it. I then get very uncomfortable, my frame of reference having vanished, and I become at a total loss as to what I should do next.

Now for the brutal honesty: I think I have looked upon “intellectual disability” in the same vein. Again in my teenage years, I used to help my dad every Sunday morning with a group of old people, some of them whose mind was not “all there”. I found myself very awkward around them. I have not had much experience of contact with people with learning difficulties until now, and I must say, deep down, it kind of scared me. The not understanding the other person, why they would behave in the illogical way they do, if they would understand what I’d say to them, what I can say to them, if they are “in control” and can’t show it, or are actually and truly not in control and what I am supposed to do with that. A raft of stupid questions, but they all crossed my mind at one stage or the other over the years. So, yes, “intellectual disability” unnerved me, even scared me.

Strangely, these thoughts did not in anyway cross my mind following Cathal’s diagnosis. It’s as if Cathal has never been in any way part of this picture. Cathal is Cathal, that’s it. I do worry about the future for him, of course, but that’s it. These feelings of awkwardness and discomfort, all these questions, never came in. And as I think of it now, neither when I met any of his little friends – and I have posted before how much I enjoy meeting them! Is it simply because they are so young, and we never expect any special type of behaviour from young children? It is that, with babies and toddlers, all behaviours are “normal”, are expected? I am not sure. The fact is, my issue with “intellectual disability behaviour” – I can’t find another, better, label to put on it – is non-existent as far as Cathal is concerned.

Yet – Brutal Honesty, step forward again please – going to the World DS Congress, I had some apprehensions, especially about my own reactions toward the people I was going to meet there. Actually, a lot of apprehension, which brought me to practice the Ostrich Strategy for the few weeks leading up to it. You know, stick your head in, ignore what is bothering you, and hope for the best.

Well, the best happened, as soon as I stepped inside the entrance to collect my badge and bits and pieces: these apprehensions totally disappeared. Gone! The rest, as they say, is history, as per a previous post.

So much happened over those few days of the Congress, and then I went off on a week’s holiday, so much so that I did not realise the extent of my journey and of my changed attitudes until last Friday. I have hinted a few times on this blog that my work takes me around various hospitals on a regular basis. Last Friday, I happened to be part of a group visiting Peamount Hospital, near Dublin. One of the areas that Peamount is known for is the number of long term patients (they call them “clients” which I think is nice) with intellectual disability. Some of them have lived there most of their lives. Thankfully it is an aging population, showing how things have improved and are improving over generations so that more and more people have a chance towards a community-integrated life. And these are not empty words, I do mean “thankfully” because I do believe this is the way forward.

I have been in Peamount several times before, but this was the first time I was taken around almost every nook and cranny of the place, and visited all the wards and supervised living bungalows. As a group, we were “warned” that some clients might be over friendly, but not to worry, the staff is always close by. I do not know if it is because I was so focussed on the purpose of the visit, but I just did not “think” ahead, no fear, no apprehension. In the first and second place we visited, some clients approached us, said hello, we all said hello back. All very natural. Then we entered the third ward.

At the door was this gentle looking little old lady who nodded as we went in, and then joined our group, taking her place next to me as we walked around. She followed us in various rooms without making a sound. And when we stopped to examine some equipment, I felt my left hand being gently taken in a silky soft and warm little hand. I looked at her. She was looking at me and smiling. Then she turned her attention to the person who was then speaking and ignored me totally for the rest of the visit, yet still holding my hand all along, as we continued moving through the building. The strange thing, what totally floored me, was how natural this felt, how utterly normal. So human to seek, to give and to receive this physical contact. I was also acutely aware at that time of a sense of peace and well-being which is hard to describe.

I am not too sure of the conversation exchanged during the visit of this particular ward, but it is so irrelevant. What this lovely lady gave me is far more valuable. When we made our way back toward the exit, she started to pull on my hand as if to take me in the other direction. One nurse who had been in the background all along (and had thankfully and tactfully not intervened before this) started to move towards me. But I told her it was ok. You see, this lady and myself were in control, together. I turned to her, told her I was sorry but I could not stay, I had to go away, but it was lovely having met her, and I hoped that she would have a very nice day. She looked at my face, released my hand, and took a step back. And as I moved towards the front door saying goodbye to her, she smiled.

Now! How is that for not being in control? How is that for illogical behaviour? How is that for unfounded apprehensions, fears, and stupid thinking based on ignorance? Unfortunately I do not know this lady’s name, but she has made a great impression on me, because she has enabled me to see the road I have travelled lately. And she has given my mind a sense of peace I still feel. I would even dare call this a spiritual encounter.

Loss or absence of “control” is so relative!


Jeffrey Goble said...

I suspect that your heart has always been in the right place; your head has just gotten some new information that has permitted you to realize a greater world. I've always considered myself a spiritual person - the scope and direction has certainly changed since Emma showed up.

Mel said...

Reading this through tears Nan P. I look back at my life before Luke sometimes, and it seems to me that I was destined to be his mother. I helped out at the Special Olympics as a teenager, which chrystalised my decision to become a teacher. I studied, among other things incl French, rehabilitation at University, and taught a number of children with both physical and intellectual disabilities. We chose not to have the 12 week scan, and I vividly remember Neil saying to me that 'some times these babies come to those who can love them', never thinking of course that it would be our path. Which is not to say that I did not, or have stopped, grieve. But that I love my boy with all my heart and soul and couldn't give him up for the world :)

Clive said...

Nan, a beautifully worded piece! Could relate to so much of it.

Cheri said...

Nan, I am with Mel...I got a little choked up reading this....GREAT post!! I have had similar feelings as you described...when teaching I would always admire the special education teachers but secretly knew that was not the path for me. Reid's birth has shattered those old feelings of awkwardness and uncomfortableness I once felt around those with disabilities, and I am grateful for that...it is a very freeing feeling. Reid has helped me to see things in this world with new eyes...and I now find myself drawn to the families who have a child with special needs, almost feeling a bond with them, and now see beauty where I didn't always recognize it.

You encounter with this woman is very sweet and touching. :)

jazzygal said...

Brilliant post Nan and so fabulously written.

I understand how you're relating your feelings about loss of control with Intellectual Disability behaviour. I believe though that once it happened to your family, and in such a darling little prince, that changed things for you. You, naturally accept Cathal as Cathal and you understand what makes him tick. You also now know the things that you can do to help this child progress. It has all been "personalised" to you.

That may mean that you're now more "open" when meeting others with Intellectual Disabilities. That's why I'm not surprised at your reactions at the conference.

Fabulous story about the lady in Peamount. I get snippets of this in my mam's Nursing Home, although not as profound. In tegration into Community living definitly the way forward. As long as it's properly supported! xx Jazzy