Pounding the Pavement and other Life Lessons

Yesterday I went for a run -- I run, but I don't love it; there are other things I'm much better at and would prefer to spend a sunny afternoon doing, but yesterday was different.  As I ran, I enjoyed the feeling of my legs moving beneath me as they moved me around Narrabeen Lake and appreciated being able to run.

I remembered back to the first fun run I ever did, a 5km run fundraising for the Achilles Running  Club, a Toronto based running club supporting runners with disabilities.  Though only 5km, this run was a real struggle for me, and at some point during that run -- perhaps when a runner with a prosthetic leg or a blind person being led by a running guide or somebody pushing a wheelchair ran past me as I puffed and panted along -- I decided to get better at running.  I remembered back to my half marathon - I still remember the 'of the moment' contempt I had for the person wearing a shirt that said "the pain is temporary, the glory is forever".  I remembered to look around at the beautiful place where I was running, to notice the ducks and geese and kayakers on the lake, to run and smell the roses so to speak because yesterday's run wasn't about my running or my fitness, but about KH getting out and about in his scooter, something he hadn't done in years.

KH had done half of his hard work already - it is a very difficult for him to transfer onto his scooter and then back into his chair that he uses at home hence it being years since he had been able to go scooting, but we had agreed that an outing would be awesome for our last session.  I have to tell you I've never seen a scooter quite like this - probably 20 years old with a little light switch to flick for forward or reverse, big crazy handles for steering like an old Harley Davidson.  When I took the cover off of it I actually doubted that it would go at all.  KH had asked (via his AAC) me how my running was, but I was more worried that I wouldn't be strong enough to push it if it choked en route.

Off we went -- and yes I had to jog, run, and sometimes even sprint to keep up with him, especially on the wide flat path around the lake, and even on the bush trails that were barely wide enough for the scooter.  Kids stared at us, not the usual curiosity filled way that kids often stare at someone with a disability, but in the 'that's so cool' way adults look at a cherry red convertible mustang  -- KH's wheels were by far the biggest and coolest anywhere around.



As I said, I enjoyed my run, spurred on by KH's sounds of glee when I couldn't keep up or started getting puffed, wanting to keep up with him to witness his enjoyment of the day, to be close enough that if he wanted to say something I could get his communication aid out for him.  I was grateful that I had worked on my running enough over the years since my first fun run that on KH's day out he didn't have to be held back by my limited running ability - and also grateful that KH wanted to stop and look at things so I had a few seconds here and there to catch my breath.

As I ran, I remembered SE learning to drive his very fast chair with his very limited right hand so that he could learn to play wheel chair tennis; he needed to hold the racket with his left hand which was normally his driving hand.  SE -- the mischievous show pony that he is -- ran me hard that day too, in a little park where the session could be watched by my colleagues, clients, and acquaintances.

As I ran, my mind drifted to other random fun moments I've had with people in wheelchairs.  Not CE moments, but just random slices of life moments.  I thought about getting trackside at the Indy 500 with MG; I though about SP after a few drinks taking her wheelchair down a small set of stairs where a portable ramp had been a few hours earlier; I though about the fun CW and I had while she was learning to cross busy roads in her new foot driven wheelchair; I thought about KW bringing a batch of his very special brownies in on his birthday to enjoy with the rest of  his MS group (yes I'm serious - all 5 of them were off chops and giggling through the whole session); I thought about getting around the wild markets of Hong Kong with M&LD; I thought about KD getting her wheelchair stuck in a pile of woodchips while geocaching in a cemetery; I thought about training FG for her Antartica adventure that included climbing down a ladder into a zodiac to get to the icebergs; I thought about YG coming out to cheer my dragonboat team on wearing her team shirt and hat; I thought about SP in the back of an ambulance on the way to hospital with breathing difficulties suddenly coming good when she realized how sexy the doctor treating her was.  As I ran I remembered my grandmother in her wheelchair, friends with several teenagers in her neighbourhood.  The kids came to shovel her driveway or help with the garden knowing that she loved rock concerts could take a carer with her - Ricky Martin, the Spice Girls, Savage Garden were amongst her favourites.  This is the same grandmother who concluded that people in wheelchairs don't get hugged as much as other people so decided to change that, throwing her arms up and insisting that everyone (the mailman, the bus driver, everyone) hugged her.

As I ran, spurred on by KH's vocalizations, laughing as KH waved at admiring kids we passed by, I thought about when I first met KH (detailed in my previous blog posting); that first day I got caught up in his disability and circumstances but yesterday I was hanging out, having fun, celebrating being alive with an amazing person.  I'm forever grateful for the amazing people I encounter in work and in life, and for the free attitude adjustments they offer.    And, I'm grateful for clients who become friends, who let me into their lives, and who share their moments of adventure and misadventure with me.

Conducting when it's Confronting

I try not to roll my eyes when talking to some well meaning person about 'what I do for a living' and 'whom I do it with', when with their hand on their heart and their eyes welling up with tears, they tell me what an angel I am, express marvel at my patience, or assert that they themselves could never do it though they know it must be incredibly rewarding.  It angers, frustrates, and outright amazes me that when people see the people whom I work with, they see my humanity and not my client's, as if my client's humanity is shrouded by their disability.  But I try not to roll my eyes.  I try to respond in a way that is not pedantic or condescending because for whatever reason it is human nature for people to be frightened by those who are different, to prefer not to deal with the reality of their own mortality, to be generally uncomfortable in their own skins, and to feel confronted by the very physical world of disability.  I understand that for the most part people mean well but feel confronted.  And yes, disability can be very confrontational - even for people with disabilities, caring for people with disabilities, or working with people with disabilities.

Today I sat in my car sobbing after my initial consultation with KH because his story and his circumstances were confronting; because I already cared and wanted to help him but didn't know if I could, or where I would start.  I'm telling you this because though I love what I do, sometimes it is hard and sometimes it is confronting because life and disability and disability services can be unfair, awful, and heart breaking.  I've never really been good at the whole 'professional objectivity keep people at arms length thing' - and I accept that sometimes that means having very human, emotional gut responses to people that I meet, or things that happen in the lives of people I work with and genuinely care about.

On days like this I miss working with my very good friend and conductive mentor AB because we talked about this stuff; she validated my feelings of confrontation and was not afraid to show me hers - such a precious rarity in a senior professional and so important to my professional development.  On days like these I think about how AB mentored me - no actually, how she conducted me - from these moments of professional despair back into our classroom refocussed and ready to confront what had confronted me.

I often try to imagine what AB would tell me in moments like those after I met KH today.  AB would say "we have to try" no matter how impossible something seemed. If something we tried didn't work she would say "we have to keep trying until we find a way".  Today when I told KH that I didn't know how far we would get but that I wanted to try, he typed out that he was expecting me to tell him that there was nothing that I could do, like everybody else told him and that he was happy to try.

If I told AB I wasn't sure if I could help someone, she would say "of course you don't know, you have't tried.  But you are a conductor", she would say with pride, "we try, this is what we do".  She is so right - though there may be similarities from one person to another, each person, each body, each disability is different.  We improvise, we think on the fly, we make it up as we go along, and over time and with experience start to refine this 'trying'.

If I told AB I didn't know where to start, she would ask me about what KH could do, and would remind me to start there.  Though I'm still not sure exactly how or where I will start with KH, I am amazed that in his 50 plus years of living with his brain injury he has found ways to manage as much as he has, and trust that he will show me where to start.  AB would say "conductors don't have every answer, but that's ok if we keep looking -- this is what we have to teach the participants".  Thinking about KH again, I remind myself that sometimes this is also what they teach us.

Today after I met KH, I sat in the car and sobbed -- it was confrontational and I was upset and I wanted to help but was scared.  I think that we need to talk to each other about these feelings -- I believe that they are a very real part of being a conductor.  I hope to be able to write something motivational and exciting about what conductive education has helped KH achieve sometime soon.  But today I'm writing to tell you that though meeting KH was confrontational, upsetting, and caused me to doubt what I had to offer through conductive education, after my imaginary debrief with AB this afternoon I am ready, willing, and excited about the opportunity to try.