CAREN stands for Computer Assisted Rehabilitation Environments. I am so privileged to be spending a few weeks at the Ottawa General Hospital in the Rehabilitation wing. I have been working out each morning and each afternoon. CAREN is a walking simulator which was funded by the military to give soldiers injured from the conflicts in the middle east a great tool to enhance their balance and walking abilities. I get hooked up with a cable so that I can’t fall and then various activities are put in front of me on this huge 180 degree video screen. I’m standing on dual tread mill belts. It can measure the weight I placed on each foot and tell the sideways angle that I am on. In one exercise I’m not moving my feet and I have to move a ball through a maze being penalized for any edges I hit. I move the ball by shifting my weight forwards backwards and sideways. I’m timed and its exhausting as I’m not hanging on to anything and supported my entire weight. I play 🙂 other activities such as moving a boat through several pylons which this time I have to step and shift my weight to turn the boat quicker. Then the last one I do is to walk down a simple path with the treadmill on until they throw a stretch of rocks at me trying to throw me off balance. There’s a young lady operating this entire simulator and my physio therapist stands guard watching me and giving me pointers. My stay so far has been amazing and I don’t have any issue falling asleep at night. Stay tuned for next weeks progress. Marijo and I will be traveling to Ottawa on Monday December 10th to give a speech to the Office of the Auditor General. I will be nervous but it will be exciting to be public speaking again.
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Every time I told someone that I was going to be on
the set of Robocop this week they laughed at me and said “no way”, “stop kidding around”. But it’s the truth! I was fortunate to be an extra on the filming of Robocop this Tuesday past in Toronto. It’s a remake of the original Robocop movie that came out in 1987. They were shooting a couple of scenes that required a number of amputees in a rehab gym facility.
So Marijo took the day off work and we scooted to Centennial College in Toronto. It was a very exciting day right from the start and so professional. We had an early morning (5:45 am) shuttle van ride to location, shortly after getting checked-in, I was whisked off for a bit of light make up, then to wardrobe and back to the holding area where there were another 30 or so amputees and extras. We waited together for our big moment on the set.
There were a few big name actors: Michael Keaton, Gary Oldman, Samuel L Jackson. It was neat standing beside Michael Keaton, which I got to do a good part of the day. I was surprised that he wasn’t that big of a guy.
Even though we only shot a couple of scenes, it actually took 12 hours to do, as it took a long time to set up and then we would do several takes. I was in the background with other extras, play acting.
Directors and Assistant Directors were barking orders – if you had a hair out of place or a wardrobe issue people would rush over and make an adjustment.
What an experience.
The movie does not air until August 13th, 2013 (now delayed until Feb 14th 2014). I can’t wait! I’m not even sure I’ll be in the final edit, but it will still be neat to see the scene that I was there for. Just another day-in-the-life of an amputee….autographs anybody? 🙂
I don’t always view myself as a great blogger. Marijo always told me to write my blogs when I feel like it versus feeling I had to, so here goes:
Lately, I’ve been thinking a lot about how I feel my personality is slipping back to pre-flesh-eating. I’m not proud to confess that before I got sick, I could tend to be critical or negative by nature. One of the good things that came out of Flesh Eating Disease was that when I awoke, I was so thankful to be alive that it seemed as though I was able to see life through a more positive lense.
As time passes, I find myself slipping back into my old habits, hearing the echo of my voice as I absent-mindedly complain about a commercial, or a telemarketer.
Competitiveness is also a character trait of mine, and that has not changed. Being competitive is mostly viewed as a positive thing, but it can have a negative side. For me, it can make me a bit of a sore loser. I was never an elite athlete – never excelling at any one sport and only participating at the ones I thought I could do well in. In my new life without limbs, I am growing to love race sailing. With the Paralympics on right now, I wonder “could I be in those games?” After a bit of research, I am finding out it’s no easy task. It’s a big financial commitment and an even bigger time commitment. The main thing is that you have to display talent to get recognized – and lots of it.
So on Sunday this week Marijo and I head to Ottawa for our big regatta of the year. I race for 4 consecutive days against sailors from around the world. We are all in the same model of boat – a Martin 16. The competitive nature in me wants to win but I am trying to focus on doing the best I can and having a good time while I’m at it. But competition changes me a bit and sometimes gives me an edge that I am not proud of. I get nervous and rack my brain to figure out where the advantages are and how to see wind that’s pretty much invisible. As I confront the feelings inside of me, I want to be the guy who woke up two years ago simply happy to be alive.
Hopefully I’ll find that happy blend between being competitive and happy. That said, I do believe it is exactly my competitive nature that allowed me to beat Flesh Eating, but I also believe you go through life learning and appreciating that you are always capable of becoming a better person and what worked yesterday might not work for today.
The weekend following the regatta, Marijo and I head back to Ottawa to participate in the Army Run. Marijo will do the 1/2 marathon (poor thing) and I will do a 5km in the amputee division. My goal is to complete this using only a cane. We have both been hard at training over the past month or so. I couldn’t do any of this with out the support of Marijo who in her own way gently guides me around to all of these activities.
I’ve finally stopped blaming my boats or my prosthetics when I fail. I simply want to smile now and meet many new friends and, of course… I have to win …… right?
Well another bit of travel and more disability experiences. Jo and I along with my sister and brother-in-law winged our way to Vancouver. A first for me as I had never been to British Columbia. We decided to not take my left leg or my wheelchair on this excursion, and instead rented a scooter for the disabled. It worked very well for us. I was able to traverse the streets of Vancouver easily with the scooter and no one had to exert any energy pushing me around.
Within 6 hours of arriving we ended up being interviewed by a small radio station telling our story. What a unique experience and I actually quite enjoyed it as they blended my medical story and our love story together.
If you are interested in listening to the interview click here and use following log in and password to be able to download the MP3.
login: bryan_radio, password: bryan. It’s about 30 minutes in length and starts with a song by Royal Wood.
My sister and Marijo each had daughters to visit in Vancouver. It was nice to see them and catch up on their lives and grow relationships.
From my observation, Vancouver is incredibly beautiful – a city full of glass. I found the people very friendly with many smiles from complete strangers. We didn’t see the sun much as there seemed to be a constant cover of cloud on the city.
For me the surprise of the trip was Mj prearranging a private sailboat charter around the out the outlying waters of the city. Jeremy (the captain) allowed me to navigate for a good distance. It was fun to sail a larger boat then our tiny racers that we are used to. Jo also put together a photo book of our first 365 days together as man and wife. As a treat we also got to all go see Russell Peters a Canadian comedian from Brampton who performed at the Rogers Arena (where the Vancouver Canucks play).
It was sad to say goodbye to the daughters and we hope to see Marijo’s daughter, Adina, next at Christmas.
It was nice to return to pick up our little puppy who I think was disappointed to be leaving all of her playmates.
Sailing starts for me in earnest now as I prepare for our first regatta in Nepean on July 7th. See you on the waters!
On May 6th, Marijo and I attended a fund-raiser for our good friend, Cyndi Desjardins. Her event was held had Fairy Lake Park in Newmarket. I’m not sure how many folks were there but it was well attended by lots of smiling, happy people and the weather was perfect.
Cyndi had told me that there would be many of her friends there that also were amputees as well as other survivors of Flesh Eating Disease, like myself and I was very excited to meet them.
It didn’t take long for us all to find each other in the crowd and we became fast friends. They shared that at West Park, which was the Rehabilitation facility many of them came through, they referred to below knee amputees as ‘paper cuts’. To get them back, the below knee amputee’s started to refer to the above knee amputees as ‘drama queens’. A little amputee humour – but it got me thinking – what does that make me? I asked Marijo what she thought, and she said “oh, that’s easy. You’re a drama queen with a papercut”. Hmmmm… Not sure I like that! One of the guys there, who had above knee amputations and was learning to walk, told me that wheelchairs are only made to sell on ebay. 🙂
It was nice to see Cyndi and Marc and I hope they achieve their goal of getting Cyndi some myoelectric arms.
There was a lovely woman named Heather who shared her story with me but only when I asked….It’s hard to miss Giuseppe who is very flamboyant, with a strong personality, and very inspiring. He was able to show us great walking and running skills. ‘Joey’ as they call him is an above knee double amputee….Stefan who has similar amputations, was also an inspiration to me. He had an accident with a train 15 years ago. Joey inspired Stephan to get out of his wheelchair and learn to walk. He has discarded his wheel chair and is learning to walking again…. There was story after story – burns, flesh-eating, motorcycle accidents, industrial accidents, etc.
The common thread in all of my new friends – they all have drive…no one’s taking ‘no’ for an answer, they all have huge smiles, they all have amazing support provided by friends or family. Each person was in a different stage in their journey. We’re all still getting new stuff…tweaking , adjusting and learning.
My new friends are all so very supportive and you can’t help but feel good after leaving them.
Sometimes I think I won’t ever walk again without gait aides….my friends made me rethink this. I went walking as soon as I could when we got home. Several times I lifted my crutches and I walked lamp post to lamp post (not pretty but….) and I’m going to keep trying. Thank you my friends and I hope to see you again soon in my travels.
One of the challenges I am finding lately as I adjust to being disabled is that I am not sure what my identity is. It’s like I have to find who I am now that I am not what I was before. I look for boundaries that I can butt up against to to tell me where I am at – whether I can go further or whether I have reached a plateau in whatever task I am working on.
However I think what I am actually learning is that my identity is not made up of my achievements – that I don’t have to stop when I hit a wall and accept that that is now as far as I can go. I am discovering that life, whether disabled or able-bodied, should be about setting quiet personal goals and making a plan to go after them rather then hoping or wishing that you might have what is at that goal mark.
The key with goal-setting is this: the goal needs to be something you think you are capable of achieving, but that can be adjusted if necessary. There is no losing this way. If you don’t reach your goal, re-adjust and make another one. If you do make the goal you set for yourself, then set another one, further out.
Ok enough of my philosophy. This past weekend, Marijo and I just partook in a local fun run called Pitter Patter (link will have race results in a few weeks). It has been an annual event that we have participated in almost every year since we met. This year we both met and exceeded our goals. The local community 5 & 10k run is held each year at Loyalist College with funds going towards Belleville Community Policing.
It has turned into a real friends and family event for us. My mom, sister, daughter, son-in-law, grandson, mother-in-law, brother-in-law and our personal trainer at One-to-One Fitness and some good friends were all there. Also 6 of the Nursing staff and some of their family members from Kingston Hospital joined the run to support me. Marijo ran the 5k and beat her personal best time from 4 years ago. I was able to drop my walker this year and just use my custom-made crutches, dropping several minutes off of my time from last year – and… I beat Marijo’s mom, who is 84, by about a minute this year! Thanks for letting me win Nan!
As tradition demands, we all went out to a local restaurant afterwards for some good food and socializing and watched as our two families bantered back and forth. What a day! Some great photos were taken and lots of smiles all around. I’m not sure what lies ahead for next years personal goals for this event but I’ve got a little bit of time to figure that out. I want to thank everyone for all their support.
Note: The Kingston Operating Nurses raised, through a bake sale, $741.00 for my dear friend Cyndi Desjardin who is having a fund raising event on Sunday May 6th. Her event is called a ‘What ever-a-thon’ and funds raised will go to buying her two mio-electric hands. Price tag is $100,000….wow!. Marijo and I will be partaking in this worthy cause being held in Newmarket. If you should wish to donate to her event you can easily do by….clicking here.