21 October 2015
From my newly acquired height, I am much closer to eye level with a lot of people and objects that I might not have paid much attention to before. One group of these freshly perceived people is children and the other is homeless people sitting on the pavement – these two groups have a growing place in my heart and in my mind. Don’t get me wrong, I’m not feeling ‘clucky’ and I’m not likely to share a flagon with a stranger, but I’m noticing two interesting things.
One is that street people who are sitting on the pavement make eye contact, usually smile at me and even occasionally give me the thumbs up. I never had this response from a street person before, not if I hadn’t already done or said something to get their attention. The first thing I thought was “shit, do I look homeless? I know my hair’s a bit messy but jeez.” But it keeps happening, so I respond in kind. A bit of hey how’s it going. I smile, and do the quick tilt back of my head in that ‘what’s up’ kind of way. People walking beside me don’t even notice the exchange. I had been living in a 5’6″ world and I’m suddenly in the 3’6″ world and there are completely different inhabitants. I mentioned it to Steve (way up there in his 6′ world) – what is going on? And in his insightful way, he suggested that perhaps it is shared suffering. An acknowledgment that not everyone gets a comfortable ride in this life and we of the 3’6″ world know this better than anyone. Plausible and certainly a good enough answer for now.
The second notable is that children have no shame in checking me out (I’m talking about children under the age of about 7 who aren’t yet worldly enough to have had a wheelchair and its contents explained to them). They look at me, into my face, then they look at the wheels and how they work. Then they look at me again. I think what I like most about this little non-verbal exchange is that I can imagine what they imagine encountering this for maybe the first time. There is no trace of pity nor is there shock or surprise. It’s very matter of fact – hey there’s a lady who has chosen to get around in a chair instead of standing and walking. I like the idea that they are grappling with the nature of it – is it voluntary or involuntary? Is the chair kind of like a bicycle that she can get off of whenever she wants to? If it’s involuntary … how does that work? Aren’t adults all seeing and all fixing? Why not this one?
A couple of weeks ago, I wondered what I would do if a child asked me about this situation – what would I say? – and if I were the child’s parent, what would I want them to hear? It is tempting to have a bit of fun with it – Santa took my real legs because I was bad? I was run over by 12 clowns in a tiny car? But the truth is gruesome enough. Now, twice this week, I’ve had children ask. One asked why I was in a trolley. When I got past the image of a drunk backpacker being wheeled back to a dorm in a shopping cart, I replied that my legs don’t work. He was on his way somewhere with his dad, so he just considered that as he walked away. The second was a young girl who asked why I was staying in this chair. Again, I replied that my legs don’t work but this one had time on her hands. Why not? I told her that I’d had a bad accident (left out the bicycle part and just let her imagine the rest) and that seemed like enough.
So I ask those of you with children or those of you who have had to explain something a little too real to a child – what would you want them to know? if you were their parents, what would you want them to hear from a stranger? What would you not want them to hear? I know the answer is probably “depends on the child”, but I want more than that from you. I don’t want to scare them off riding a bicycle, but I don’t think a lie is fair to them. They have the courage to ask, so I want the courage to give a good response.
Hey, Claudes, as you know, I don’t have children – but I did have a father who only had one hand after losing his left hand in a hay-baling accident. It happened at the same time as my mother was in hospital having me, hence, from that time on, I was known as his ‘left-hand man’ (might explain my politics). The only people who would overtly notice and ask him about it were little children. He’d always explain it calmly and honestly to them, sometimes in too much detail for their squirmish parents, and, pretty much without exception, they’d nod, maybe ask a follow-on question and calmly go on with their lives. So my vote is ‘tell it how it is – children cope pretty well with the truth and don’t yet have the fears and prejudices that us adults suffer’ … but I don’t have kids, so no repercussions!
Great article, by the way. And my father went on to become one of the most successful farmers in our area, possibly because of a desire to prove he was at least as capable as others.
The things you find out about your friends when you put yourself out there. I think the way forward is as you say – tell it how it is.
The mother of 2 and the grandmother of 2(my granddaughter has type 1 diabetes since age 2 now 12) children prefer the simple truth. Other kids still ask when Madeson has to leave the classroom to go to the nurses office several times a day and about her pump. Each school year there is always some child or parent that questions her safety issues for playing, her dance lessons, and believe it or not girl scouts( she never got to join). Children just want the simple truth, and not always heavy with details just the simple facts. Leslie has kept me posted as to how you are doing on a daily basis. I am so glad you are handling things so well. Keep up the good work and attitude. You are a very tough, strong and determined person.
I do not have children but as a “stepmother” to Chris’s two boys, (hate that word – if anyone can come up with a better term for my role in their lives, you can – please?), I’ve found myself being as truthful as possible with them about risky things (sex, drugs, riding public transportation, etc), sometimes to their father’s dismay. Perhaps, like Wayne, because they aren’t my own. They’ve always seemed to appreciate it.
Interesting to read this now as just two nights ago, we were having dinner with an adult friend who’s interested in trying mountain biking. I immediately thought of you and wavered on whether or not I should tell him about your accident. I decided to share your story but also the many times I enjoyed riding with you on the Munson Hills Trail.
When Steve and I first started seeing each other in a way that went beyond our initial friendship, we made an agreement not to give it a name – not boyfriend, not dating, not partners, not ‘seeing each other’ etc. Mainly because words that describe relationships come fully loaded. We just wanted to be nice to each other, honest, and have a good time without putting a whole lot of assumptions and analysis around every word and gesture. It worked a treat, but I can tell you I had to argue with a couple of my girlfriends about it. One in particular was adamant that we call it something. My response? as soon as I give it a name, you’ll start laying a trip on me about how I should behave and how Steve should behave in any given situation. No. Same “step-mother”. I say make up a word and define it yourself (or yourselves).
Re mountain biking and risk – it might be helpful to know that each person in the spinal unit (with me, before me and after me) has a story about how they were injured and only a tiny percent would have been doing something extreme or foolish. One guy who was in before me had been at a picnic sitting at a table with benches that were attached to the table. His friends on the other side of the table stood up, he and the table tipped over backward, he broke his neck and is now a tetraplegic. He is a young doctor who just wanted to eat outside with his mates. One patient fell out of a tree after picking apples, one person slipped on a dock that he was about to jump off into the water, etc. I think people out there would like to think each disabled person was either doing something foolish or something extreme to end up this way. If that were true, then all anyone would ever have to do is be reasonable and they would get through life without worrying about a disability. Unfortunately, we are all far more vulnerable (and far stronger) than we think. Time and chance happen to us all.The solution is either do everything (and hope) or do nothing (and wish). I know what I would choose.
I very much appreciate you sharing the stories of your fellow patients. Time and chance indeed. Screw wishing. I’m thinking of Yoda here – do or do not, there is no try.
Hey Claudia,
As a mother of two I’ve found be as truthful as possible always works a treat. If my children were to ask you about your chair I would be happy for you to tell them about your accident (gruesome bits aside). I don’t think it would scare them off riding their bikes, it would help them appreciate that accidents happen sometimes, and we don’t know when they will happen that is why they are called an accidents.
Claudia,
This is a tough one for me to get my head around for many reasons. I have wanted to check in with you for a long time. Still not knowing what to say, I am glad you posed a question that is somewhat pertinent to my own life. My son Braydon turned 7 on November 7, his golden birthday he tells me, which I somehow missed as a child!
Anyway, having had a child later in life, our active connection is dominated by cycling, a shared love and about the only place I can keep up with him!!
I have taken so many chances in life and “gotten away” with so much. Sometimes I see that spirit times ten in Braydon and it scares me. Knowing more than most that we are all, at any time moments away from a life changing event, I am almost frozen at how to address his bravado without instilling fear, consequences of which could be even worse, and for now have decided to be truthful when he asks, give input and firm guidelines when I can and pray he figures his limitations without too much hurt falling his way.
Your blog in its early stages shows a strength that I always found inspiring when I knew you in my young life.
I can’t think of anything else that’s not cliche but am thankful to talk to you and know that you are coping and Steve is by your side.
Best, Damian
Every time I see a picture of Braydon on FB, I think with joy how full and happy your life is. Flying AND having a family (and a boat :-)). I don’t really believe this is a merit based life, but I can’t tell you how pleased I am that you’ve come out on top. I think you are right in your approach with Braydon – being honest, giving good advice and hoping.
Regards what to say about my accident and its results – really, anything honest is okay with me. Awkward silence is okay, but it doesn’t get us very far. I’d rather a blurted honest but bordering on insensitive icebreaker myself. Other people have trod this ground well before me – http://emilymcdowell.com/collections/cards/products/everything-happens-for-a-reason-card – and now make a series of greeting cards that are honest and lovely at the same time. I’m not suggesting you send me a greeting card, I’m just suggesting that you aren’t the only one who struggles with what to say. But you and I are mates – with maybe a couple of years between sightings, but mates nonetheless. We can be honest and awkward and occasionally insensitive without doing too much damage along the way.