The Saga Continues, or Can I Have My Leg Back?

It’s been a few months since I hit my breaking point and spilled my emotional guts all over the internet.  Many things have happened since then.  The family and I went to Thailand for two weeks.  I had a moderately heated conversation with someone from Otto Bock, the manufacturer of my defunct cyborg leg.  I hit 14 years as an amputee on January 25th.  And Zeke got the croup.  I’m probably missing a few things, but that’s what’s jumping out right now.  I’m going to focus on the prosthetics for this post, but have plans for a short and sweet one page blog series starting in the near future, so if you want to know more about Zeke vs. The Croup stay tuned.

Let’s rewind a couple months.  In the two days between getting the news that Otto Bock wanted more money to “fix” my leg, and the time it took me to write and post my letter to the prosthetics industry, I was consumed with fear, rage, anxiety, sadness and feelings of inadequacy.  Millissa, being Millissa, kept saying “you need to write, you need to get this out of you and release it”.  Then a magical thing happened, Mill and Zeke both went to bed at eight o’clock one night and I was left with the computer staring at me asking “are you going to do this or not?”  I sat down and didn’t look up for the next few hours.  When I stopped, the letter was done, that was it, it had written itself.  I can’t think of writing with such fervour at any other point in my life.

Friday morning I put the letter out into the world and I continued struggling to focus on anything else for the next few weeks.  As much as I had released it, I had also opened a can of worms, a can of worms that I like to keep to myself.  After all I can’t let my insecurities about being an amputee leak into the world, then people might think I’m weak (that’s a joke, just to be clear).  Honestly that’s where I often live though, doing my best to act like the fact that I am an amputee has no effect on me, even as I know hiding everything is a much bigger weakness than sharing my vulnerabilities.  Maybe it’s hitting 14 years as an amputee that’s leading me to be more honest with myself about what it means to live with a physical disability.  This topic is a book on it’s own, so back to the matter at hand.

The hardest part, was that not much changed after I posted my letter, I was still ridden with anxiety, frustration and anger about the whole situation.  Slowly I began to go into self preservation mode, I couldn’t talk about what was happening without my heart beginning to pound through my chest in a matter of seconds.  So I stopped talking about it, I did everything I could not to think about it.  I needed to let things work their way through my subconscious, so I could consciously be with them without my blood pressure going through the roof. 

One thing I did do in that time was have a conversation with a customer service representative from Otto Bock.  After all I did post the letter on their social media channels, so they were aware of it.  I went into this conversation with every intention of keeping my cool and hearing what the rep had to say.  I managed to do this until this person referred to amputees as a, and I quote “niche market” and tried to tell me Otto Bock makes products not replacement body parts.  I couldn’t really keep it together at that point.  I am not part of a niche market, I am not a number, and I am not ok being referred to as one.  I am a person, I am a cancer survivor, I am an amputee, I am someone who uses a prosthetic to replace as much functionality from the loss of my leg as possible, I am a husband, I am a father, I am a friend, I am a son, I am a brother, I am a dedicated and passionate employee, I am a musician, I am creative, I am an athlete.  Those are all things that I am, but if there is one thing I am not, it is a member of a  “Niche Market” as a consequence of having cancer and losing my leg.  To say I find that offensive and disrespectful is a massive understatement.  Needless to say the Otto Bock rep didn’t really have anything to say to this, to his credit though he did hear me out and acknowledged Otto Bock needs to do better in engaging with the amputees who use their prosthetics, notice I didn’t say products!!!!!!

To be honest, I left that conversation as much or more frustrated than I was prior to having it.  During our conversation I repeatedly pointed out that I didn’t think it was right, or fair in any way for Otto Bock to charge me for any further repairs, considering that none of the prior repairs had held up for more than a couple months, if not a couple days.  Again, to the reps credit, he agreed.  Things were left with the rep agreeing to talk to his techs and see what Otto Bock could do to reduce the cost of the repairs.

I wasn’t very optimistic at that point, but my prosthetist continued to communicate with Otto Bock and eventually they came back saying they would cover all the repairs except the specialized pylon that runs from the end of the knee to the ankle/foot.  Due to the advanced nature of this knee joint, it also has a highly advanced pylon that costs around six thousand dollars.  This part made up the vast majority of my bill, but my prosthetist was able to source a spare one of these for free.  I don’t have the leg back yet, and honestly whatever further use I get out of it will be a bonus as far as I’m concerned, but the whole thing should be back to me and up and running in the next couple of weeks.     

So hopefully ends this part of the saga.  The other piece that is still there and will be an ongoing battle is the lack of coverage for amputees in BC and really across many parts of Canada.  Every prosthetist, and amputee I’ve met seems completely unhappy with the amount of coverage in BC, as well as the way that coverage is distributed.  As I mentioned in my last blog, I work in Community Living/Social Services for people with diverse abilities.  I love what I do, I am passionate about it, but nobody is in Social Services for the money, myself included.  Yet, I am still faced with an almost $2,000 a year copay for my prosthetic coverage in BC, affording that is a stretch to say the least.  That is also essentially a $2,000 bill for no other reason than the fact that I have a physical disability.  I don’t know how to experience this as anything other than discrimination based on having a disability.  On top of that BC doesn’t provide any coverage for computerized prosthetics or prosthetics purchased in another province.  I wonder if BC provides coverage for living limbs that were born in a different province?  Or if you need surgery on your actual leg, but you already had surgery on it when you lived in a different province, are you banned from having it operated on in BC?  Ok, you can see the hypocrisy here. 

I believe things are pretty cut and dry at this point in history, as far as I know any form of discrimination is illegal, let alone discrimination based on any type of disability.  Yet, here we have that exact thing existing in BC and not only that, it exists as part of an official government program?  Can someone remind me what year it is?  Can someone tell me how not to be outraged by this, not just for myself, but for all sane and caring citizens of BC?  I’m not a complete fool though, I recognize that discrimination, racism, and all kinds of horrible things have and are currently running rampant in the world.  We need to do better for so many people, PERIOD.

I hope to see the prosthetics coverage in BC broadened and improved, I hope to be a part of that change, but I’m not sure how to go about it, or where to start.  There’s also the question of energy and time; on top of work, supporting my family and trying to take care of myself, do I have the time and energy to build a movement to advocate for better prosthetic coverage in BC?  I believe I do, but I also know I’m going to need a lot of help and a lot of time.  And like I mentioned earlier, I can’t do this at the cost of my sanity, I can’t do that to myself or my family.  So I’m taking my time, doing what feels right, and telling my story to anyone that will listen.  The fact is most people don’t know how lacking the coverage is here, and when they find out they are appalled.  I recently heard a quote from Al Etmanski, a community organizer and social entrepreneur here in BC, he said “cultural receptivity precedes political receptivity”.  Meaning cultures and societies are ready for change before governments and politicians ever do their part in creating said change.  I believe we are cultural ready to do so much better for people living with all types of disabilities, and it is time for us to start ramping up the pressure on governments to do their part in creating a truly equal world.

From Support Work to Research and Development: An Unexpected Career

Way back in the distant past of 2009, in the far away land of Madison, Wisconsin I took my first job in a group home in.  I had completed my bachelors in psychology and as is the case with many bachelor's degrees, there wasn’t a job waiting for me when I graduated, so I took the plunge into Community Living (this is the overarching term for all services for people with diverse abilities).  I thought it would be a stop-gap between grad school or another career. It’s been ten years and I’m still here.

That first group home gave me a crash course in some of the realities of working frontline in Community Living.  I observed other support workers sleeping on the job, doing their laundry at the house, making large batches of fried chicken in the middle of the night and exhibiting a general disregard for the fact that, though this was their workplace, it was also someone’s home.  I quickly gained the trust of the individuals who lived there, as I did my best to treat them with dignity and respect. I’m not going to lie, I was happy with myself and felt like I was doing good. At the same time I had the creeping feeling that, while I was undoubtedly providing some form of quality support, things out of my control didn’t allow for much in the way of meaningful experiences for these individuals.  

I carried on in the field and this feeling followed me everywhere I went.  From a day program in Portland, Oregon, to another group home in Saskatoon, Saskatchewan and beyond.  Prior to my time at posAbilities (where I currently work in Vancouver) I remember facilitating exercises in “folding and sorting” and spending more time than I imagined possible hanging out in food courts, one of only a few places you can be for free, that also happens to have tables and chairs.  I’ve been told things like, “this person goes to McDonalds every Friday evening, it’s their favourite restaurant, they’ve been going every Friday for 20 years”. Now, I’m sure this individual enjoyed going to McDonalds, but I’m also certain there are countless other restaurants and times to go to eat besides Friday evening.  I would hazard to guess that this individual would have enjoyed a meal at, somewhere other than McDonalds, on say a Wednesday at noon? These experiences do not appear to be the exception though, they appear to be the norm. I’ve observed and been a part of many meaningless/repeat activities with little to no forethought into simple questions like “does the individual want to actually do this, or do they derive any joy and meaning from doing this?”  

I tried answering these questions and coming up with ways to address these issues on my own.  I managed group homes and day programs and I think, more so than create new meaningful experiences, I did my best to use humor to bring a little more joy and hopefully meaning into whatever I was required to do. This worked to an extent, but again, I was left with that nagging question?  Is this really changing anything, is this really making anything better?

I grew to believe there are many good people working in Community Living, but like myself we are all absorbed in a system that cares much more about safety and following procedures than providing avenues for individuals to lead dignified and meaningful lives.  I’ve been ready to jump ship multiple times, ready to say “I can’t do this anymore, I can’t push someone through another meaningless day!” but one way or another I couldn’t bring myself to do it. The people I’ve worked with over the years have kept me coming back, there really are so many amazing people, both workers and individuals, in Community Living that I just couldn’t stay away.  Well at least not for any prolonged amount of time.

So after nine years of working in Community Living, when I received an invite to a “Lunch & Learn” about a research and development project taking place within posAbilities, I about jumped out of my seat.  Well, actually it barely made a blip on my radar, I went to the next email and carried on. In my ten years of working in Community Living, I have been Mandt certified on a yearly basis and completed Person Centred Planning trainings multiple times, among many other things, but never have the words “research and development” been even spoken in my presence.  It was so out of the ordinary, it barely even caught my attention.  Still, one way or another the contents of that email lodged themselves in the back of my brain, seeped to the forefront of my thoughts and boom, it clicked.  “Research and Development in Community Living” I thought, “never heard of that, better check it out”.

I went to the lunch and learn, joined the project and eagerly dove in.  A team of Embedded Researchers, myself included, completed numerous hours of interviews and observation at four different programs throughout posAbilities.  We attempted to do some research with our Persons Served and had limited success (how to properly and rigorously do this I’m convinced is a project in and of itself).  We shared our findings with the programs we completed research in and did our best to keep the agency as a whole informed of what we were upto. We had many ups and downs and many more moments of confusion than clarity.  We didn’t always get it right and caused a bit of a ruckus here and there, but even as we stumbled, we carried forward. We’ll be the first to acknowledge change isn’t easy and while we strive to be champions of it, we are not in favour of running over what currently exists in a race to get to what is next.    

When the research was completed we used our findings to inform our development process.  We spent days upon days coming up with ideas, tweaking them, throwing them out and coming up with new ones again and again.  All the time doing our best to keep in mind what we had learned from our research. After all, what is the point of research if you don’t learn from it and apply it to future endeavours?

Personally, I went from being completely impassioned about the project, to wanting to bow out, back to being an adamant supporter of research and development within Social Services.   In my opinion, what has and currently exists in the world of Community Living, is just a small sample of what is possible and if we are going to create new possibilities within Community Living we need new methods.  I believe in the potential of Social R and D as one of those methods. As a means to push boundaries and create space for Persons Served to bring more meaning and agency into their lives, however they see fit. And yet, this isn’t a question unique to our Persons Served, this a question for everyone; what do you do to give meaning to your life?  For me, participating in Social R and D increases the meaning I feel in my life. The funny thing is, one of the main reasons it does so is because of the potential it has to hopefully enable others to bring meaning into their own lives. It seems that is why many of us stick to Community Living though, now we just have to spread the meaning around a little further.  

An Open Letter to the Prosthetics Industry

I had a much more positive post written to reboot this blog and then I made the mistake of going to the prosthetics office on my birthday…

Let me tell you the story of my prosthetic care, or more aptly, the lack thereof since moving to British Columbia (BC).  

I moved to BC with a Genium computerized prosthetic knee, manufactured by Otto Bock, the largest prosthetic company in the world.  I was lucky enough while living in Saskatchewan, to not only have good coverage from the province itself, but also from my employer.  In some sense I was spoiled, although in my opinion spoiling someone when it comes to replacing lost limbs is nonsense. We should be providing the best possible prosthesis to every amputee in the world, regardless of cost.

Back to my story.  When I moved to BC I did not think coverage for my prosthesis would be anywhere near the issue it has been.  When I got here my knee was already malfunctioning, well actually it was working fine, but it was giving me an error message.  I visited a prosthetics office to see about getting my knee sent in for service. I was informed that I did not have coverage for the prosthetic work required to send my knee in for service and set me up with a loaner knee.  I would need to pay the prosthetics office a fee of $300-$500 just to send my knee in for service. I was not impressed, essentially I was being asked to pay out of my own pocket to access the free warranty on my knee. I had also just moved to BC and was strapped for cash.  Since the knee was still functioning fine, outside of the error message, I let things be and figured I would re-approach the problem once I had my BC provincial health insurance in place.

Fast forward approximately six months, I had my BC health insurance and went to another prosthetics office to try getting my knee serviced again.  This office asked no questions and quickly got everything sorted to get my knee to the manufacturer (Otto Bock) for service, with no cost to me. I was relieved and thought that was that, my knee would get serviced and I would be good to go, if only it was that simple.  Otto Bock came back and said my warranty was actually void because I hadn’t gotten the knee to them within their service timeline. This wouldn’t have been a huge issue, but BC health will not cover any costs related to computerized prosthetics or prosthetics purchased in another province.  Lucky for me, my prosthetic fits both of those conditions.

After some back and forth between my prosthetics office and Otto Bock they eventually reinstated my warranty and repaired the knee.  Within days of getting the knee back I it began to make a clicking sound, but it was still functioning properly.  I knew I needed to get it back in for service, but considering what transpired with my last attempts at service, I was in no hurry.  I finally took it in after a few months and Otto Bock came back and said the repair was going to cost around $6,000 and none of it was covered.  I think that is correct, but honestly this has been such a difficult and frustrating journey, I’m having a hard time remembering the specifics of the beginning.  My heart is pounding in frustration as I write this.

Again, my prosthetist went back and forth with Otto Bock and they eventually agreed to make the repairs free of charge, as they at the least seemed related to whatever repairs had been done prior.  So, I got my knee back and thought, “ok, this has to be good to go now”. I had my knee for two days, I went to a yoga class the first day and on the second day the knee completely stopped working. It began vibrating constantly and offering zero resistance; if I walked on it, I would fall, I was in the bank when this happened, and barely made it back to the car.  I turned around and took it back to the prosthetist, who then shipped it back to Otto Bock, who then came back saying it needed another $6,000 in repairs. I could not believe this, I had had the knee for two days and had done nothing more than walk and stretch. I cannot understand how the cost of these repairs would even partially be considered my responsibility.  Again, back and forth, back and forth and finally Otto Bock agreed to do the repairs.

So a couple months later and I get the knee back… guess what happens!  Five days after getting the knee back I’m bouncing around playing with Zeke, doing nothing anywhere near the edges of what the prosthesis is designed to withstand and boom, it starts vibrating incessantly.  Five long vibrations once a minute, and there is nothing I can do to stop it. Imagine your cell phone ringing in your pocket once a minute, but you are not aloud to answer it. Not once a minute for an hour, or two hours, but all day, day after day.  I was camping at the time, and man do I love the sensation of a never ending cell phone vibration, while enjoying the piece and wonder of the wilderness. On top of that the knee was not functioning well, it was offering very limited resistance. I could get around without falling, but it wasn’t pretty.

So I returned from my camping trip and had my prosthetist send the knee back to Otto Bock again.  I naively assumed at this point they would just fix it. I mean the knee was functioning completely fine, beyond giving me a minor error message when this joke of a service journey started.  And ever since the first repairs have been done, the knee hasn’t held up for more than a couple months, and generally has only held up for a few days at most. But no, Otto Bock came back and said it needs another $9,000 in repairs and they don’t seem too willing to bend on any of that this time.  

My prosthetist has kindly asked another amputee if he would be willing to give me a spare part of his that happens to be a large portion of the $9,000 cost.  This is all good with me, but it still leaves me with a significant out of pocket cost. And I don’t know how to justify spending money on this knee when the only thing it has proven capable of in the last year is breaking down, repeatedly.  I don’t know how in good conscious Otto Bock can ask this of one of their customers. Clearly my value to them as a customer is low.

I am now faced with the very likely possibility of significantly downgrading my prosthesis.  This is hard to swallow, hard to fathom and something I will not accept. It may and likely will happen, but I will not accept it as something that is ok.  I will not accept that prosthetics is a for profit industry. I will not accept that I am being denied access to the prosthetic that will allow to me to live my life without worrying about falling, or keeping up with my toddler to say the least.  I will not accept that the most disabling element of my life as an amputee is the very industry setup to replace the leg I lost to cancer. The leg I did not choose to lose. The leg that almost killed me. I will not accept that after facing death and beating the odds, something as trivial as a prosthetics manufacturer can take away my power.  

My Genium knee, which is now facing a likely early retirement, cost in the ballpark of $50,000.  I was able to use it for approximately three years, that’s a cost of $16,666 a year. Name me one thing you would be comfortable spending $50,000 on while knowing it would only last you three years?  At the least, it wouldn’t be a part of your body.

So what am I going to do?  I don’t know. I have a loaner Genium from Otto Bock, I’m tempted to just keep it and see how they propose to get it back.  I do know what I feel needs to happen.

1)British Columbia: your coverage for prosthetics is far below what it needs to be for amputees to live in this beautiful province without stressing about access to satisfactory prosthetics and service.  Fix it, fix it now.

2)Otto Bock: your state-of-the-art prosthetics are prohibitively expensive for countless amputees who would benefit from using them.  I know a lot of work goes into these prosthetics and I am all for you getting paid, but what is more valuable, your profits or an amputee’s quality of life?  Lower your prices, lower them now.

3)My employer: I won’t name you, you’ve been good to me in many ways, but the extended medical you provide for prosthetics amounts to essentially nothing.  Fix it, fix it now.

If you are reading this and thinking “dang, this guy is entitled”, remember I’m talking about a leg here.  What would you do, what length would you go to if you or someone you loved lost a limb and was denied access to the prosthetic that best suited their needs?

I know I could find a way to cover the costs of the repairs on my knee, but that doesn’t remotely address the bigger problem.  Heck, my hometown has already raised tens of thousands of dollars and purchased me a prosthesis when I first became an amputee 13 years ago.  I’m not interested in going that route, I’m interested in changing the system. In not only fighting for my own access to prosthetics, but access for all amputees.

If you are an amputee reading this, or someone who cares, or someone who might have some advice or ideas on how to mobilize for this cause please reach contact me. I cannot do this alone and I know I'm not the only one with a story like this. We need people power, we need critical mass and we need many voices if we are going to get the prosthetics industry to listen.

Prosthetists, you've generally been a lovely bunch to work with, I've worked with a few of you that I would venture to say are special people, thank you all for your hard work and dedication.

After 13 years as an amputee I’m beginning to realize how much energy the prosthetics industry takes from me.  I showed up at my prosthetics office yesterday in a good mood, it was my birthday, and I left with tears running down my face and rage boiling in my heart. The next day I struggled to focus at work and maintain my patience and composure with my son, which is the tip of the iceberg when you consider I've been an amputee for 13 years. This not only affects my physical wellbeing, but it also significantly impacts my self-confidence and  mental wellbeing. I am done being ok with this, I am done accepting this. I don’t care how long it takes, but starting now I am going to be loud about this, I am going to be peacefully disruptive, and I am going to hold the prosthetics industry accountable for the negative impact they are having on mine and countless other amputees lives.  This is just the beginning.

2015 In The Rearview Mirror, 2016 Coming At You

As 2016 rolls forward, I’m here again, trying to figure out how to reboot this blog and where to start.  I guess I’ll start with the obvious, last year.  It was a pretty good year, and as of now, I think more of a preparatory year for things to come, than anything else.  Still, some big and good things happened. 

Let’s start with some boring stuff!  Millissa and I finally decided it was time to get our own place.  Having roommates was a blast, but it has been super satisfying to make our own home.  We also got a dog, Gaston, he’s french, eats a lot of brie, drinks wine and won’t stop smoking in the house, other than that he’s great.  We didn’t name him Gaston, but it is cute... until you are yelling it at the dog park and he’s completely ignoring you.  Really though he’s great, except when he won’t get out of my side of the bed. 

We did some traveling as well, Costa Rica in February, Toronto, Chicago, Wisconsin/Michigan in August and Montreal in November.  Had a blast on every trip visiting family and new and old friends alike.  Millissa and I would be happy to get a bit more traveling in, but we’ll take what we can get. 

And the big, BIG news, which is already out in the world, but I’ll go on at length a bit here.  We found out in early June Millissa is pregnant.  This is definitely welcome and exciting news for us.  Those first months feel years away now, the only real change was Mill taking frequent naps.  While on vacation in Chicago our friends tooks us on a boat tour, thanks to the rocking of the boat Millissa was asleep within minutes.  That is my strongest memory of trimester one. 

Then came trimester two.  Mill got her energy back, taught and did tons of AcroYoga and we debated on a daily basis whether she was showing or not.  Or more accurately, I said she was every time she asked me.  Again, this seems like ages ago. 

And then magically here we are, January 3rd going on 34 weeks and baby due next month.  There are no more debates about showing and a vast number of items have been purged from our apartment and replaced with things like a stroller, a crib, a rocking chair and so on.  The other day Mill said something along the lines of “let’s get this baby out, I want to see what this is going to be like!”.  My response, “hold on, baby could still use a few weeks in the womb”.  I thought about this more, I mean of course we don’t want the baby to come till it’s healthy and ready, but it is a strange limbo we are living in this last month.  Our reality is about to experience a beautiful shift, which makes the one we are still living in seem a bit opaque.  We are enjoying it, sleeping in when possible, but ready for what's next.  I imagine this is a common feeling for soon to be, first time parents; as the time draws near and all the waiting is almost over, you really just want it to be over, now! 

The baby has got me thinking, of course, about many things.  The past, the future, what kind of father will I be, how many toes will it have, will it be ok with being named Sylvester?  Like a number of events in life, having a child and being a father, is something I didn’t think was much of a possibility for me, for a long time.  For one, I was told after all the chemotherapy I received I was sterile and even after regaining my physical health, fatherhood was the last thing on my mind for years.

Yet, after years of seeking contentment and a renewed belief in life and myself, here I am on the verge of another great milestone; fatherhood and creating a family.  I’ve been healthy for years, but the eminent arrival of new life leads me back to the time when I was fighting to keep my own life from slipping away.  In a different way than in the in the past though.  To go from the verge of death, to now, to being a part of creating a new life, it is a thought I can’t quite wrap my head around yet, I don’t have the words for it.  It seems like life is coming a bit more full circle… in the best way imaginable. 

Beyond comparing the past and the present, bringing a new life into the world leads me to think about fatherhood.  Leads me to think about who I am, what kind of father I will be and the things I still struggle to let go of.  Which brings me to another event from last year.

I had a minor surgery, to remove a small cyst from my stump.  Don’t worry, pathology was run on the cyst, no cancer at all.  While this really was a minor surgery I was still nervous, I hadn’t been to the doc for anything beyond a regular checkup in years.  I kept putting the surgery off, but I knew it had to be done.  When I met the surgeon for a pre-op appointment, I thought she said two to three days off my prosthesis, when I went in for the surgery she said, “oh no, minimum of 2-4 weeks”, which turned into six weeks. 

Those six weeks and the couple after readjusting to my prosthesis were many things.  For one, it was the first time I had been without my prosthesis for more than a day or two, since I started wearing it regularly almost ten years ago.  Which is really where everything started.  I’m fine on crutches, I still went to work, took the dog out and all that stuff, but you know me, this time without my leg triggered a whole range of mental experiences. 

The first week on crutches I was a wreck, it was like losing a leg all over again.  I didn’t want to do anything or go anywhere.  I was getting angry about random little things continuously.  Then I began to realize what was going on, I wasn’t mad about the surgery, wasn’t mad about being on crutches and not being able to use my prosthesis.  I was mad because I was realizing how much bogus meaning I had been putting on using my prosthesis and how without it, I felt reduced to nothing.  Which is nonsense, if anything my prosthesis is nothing without me, not the other way around.  

Once again I caught myself trying to mask over the things I’ve lost rather than actually let them go.  It only makes sense, using my prosthesis and physical activity as yet another thing to replace exactly what I lost, a leg.  On top of my own desire to replace what I’ve lost people like to see others overcome adversity, it gives them faith that they can do it to.  It also feels good to be seen pushing yourself and “overcoming” what may be perceived as a disability.  All these things lead right into the “tough guy” syndrome.  But this is only the half of it, and if I only focus on the physical side of things, I fall right into our cultural trap of being tough and “walking it off”.  Which denies me a chance to be vulnerable, because when I’m “walking it off”, what I’m really doing is trying to live life as if I haven’t lost what I’ve lost and lived through what I’ve lived through.  The only way to live like this is to be tough on the surface and tore up inside, which is where I found myself post surgery.

I think I’m coming to terms with the fact healing never really ends, and as I peel away one layer another may form.  While the time off my prosthesis definitely threw me for a loop and led to some intense moments, I quickly found myself saying, “ok, that’s no way to live”.  The bottom line for me is to stop trying to live as if I haven’t lost the things I’ve lost; I’ll never let go if I keep doing that.  I have to live as if everything that has happened to me has happened to me, which it has, duh!  I had cancer, I lost a leg and I’m never going to be happy about those two facts.  That’s ok though, I’m ok, more than ok. 

Back to fatherhood.  This time post surgery left me wondering, how do I raise a child and show them how to let go if I can’t do it myself?  How do I show a child how to be vulnerable and let them know they don’t always have to appear strong, if I can’t do that myself?  Well, you can’t teach someone how to do something you don’t know how to do yourself, that’s for certain.  But do I really not know how to do these things?  No, I’m just like everyone else; sometimes I struggle, it’s only human. 

Realistically, I’m more excited than anything for fatherhood.  I expect it to be an incredible experience full of challenge and joy, much like I’m expecting the coming year to be. 

  P.S.  I said I lost things many times in this post, but I’m not sure how much I’ve really lost anymore, I hear it's all about perspective, and in reality I have quite a bit, whether I’ve lost things or not.  The key may be in letting the past go; no matter how difficult it was, it’s still the past and the present is pretty good. 

Running for the First Time in 10 Years...

A couple of weeks ago, Ottobock (the biggest prosthetics company in the world), flew three guys to Saskatoon to set me up on a trial of both their running leg and Genium knee.  

The first thing I notice when I put on the running leg, is it is noticeably lighter than anything I’ve worn in the past.  It feels great!  The foot is 100% carbon fiber and there isn’t much to the knee, so no weight there.  First I get used to it in some parallel bars and then we head to a bigger room where I’ll relearn to run.  The “we” is myself and only about 10 other people who want to see me run.  I’m not one to buckle under pressure, I usually ignore it, but it seems to get to me when I return to former physical activities, audience or not.  I could walk fast with no problems, but getting myself to take that initial running step wasn’t happening.  Lunch time rolled around, the crowd dissipated and I thought “maybe today’s not the day.”   

After lunch, the OttoBock reps were going to go over some powerpoint of different knee options and so on.  I resisted my strong attraction to Powerpoint and told them I was going to give the running leg another try.   This time it was just me, on my own.  I started with the fast walking again, then started taking a few more running like steps, got excited, looked up, saw the wall right in front of me, forgot how to stop and crash, hit the ground.  I sat there on the floor for a second with complete satisfaction and then got up and got back to it.  I ran back and forth across the room, as many times as I could, before completely tiring myself out.  

With running there is a point when both feet are actually off the ground, which is pretty natural... when you have both legs.  As an amputee it is hard for me to trust the prosthesis when both feet are off the ground and I am landing on it.  At that point it is more mental than anything, but already after a few days I feel fairly comfortable with the running leg.  Not to say there isn’t a physical side to it.

At first my arms didn’t move at all, then I consciously moved them, but in the completely wrong way.  It brought me back to being 13 and 6’ tall, coordination was barely existent.  The arm rhythm did come back quickly and naturally so that is a step in the right direction.  There is still much to work on with gaining trust in the running leg, but it will come.  

After the first day with the running leg I went back a couple days later and ran more at my prosthetics clinic.  I started to up my speed just a bit here and there.  I got a little nauseous and almost got a side-ache, which was awesome.  That’s not a joke.  Next I took the leg to an indoor 200m track and ran four laps, taking a break between each one.  An above knee amputee expends somewhere between 50-70% more energy walking than a non-amputee.  I’m not sure what that number is for running, but it is close to double what it is for walking.  Needless to say, I was Exhausted after four laps/half a mile.

Next stop, a quick meeting with a physical therapist in town who trains athletes, Paralympians included.  Within in minutes, he had me doing subtle movements with my left hip that had me smiling with excitement and exasperation.  It's astounding how much the body can adapt and compensate without the mind being aware.  For an amputee I have a pretty decent gate, but I still make compensatory movements to avoid fully putting my weight on my prosthesis all the time; to run I have to stop doing this.  But man, it is much more work to fully step over my left side and bare all my weight on the prosthesis, than it is to not think about it and just walk.  

At one point I said to the physical therapist, "I don't know why it took me ten years to learn to run again", his response, "you're ten years old".  As usual it is moments with strangers making spontaneous statements that something actually gets through my head.  I'm ten years old!  This makes sense to me, as much as it is scary and daunting.  I don't want to be ten years old when I'm 30 years old.  I'm also excited by all the possibilities that are out there, and by the fact that I'm physically and mentally getting to the point where I will take advantage of these opportunities.

I know most of the games I play in my head anymore have everything to do with being an amputee, not much to do with being a survivor and a little bit to do with facing my own mortality at 20.  I know why I didn't push for trying out a running leg sooner.  I've tried to say it here on this blog, I've tried to live it in my life, tried to show the world and myself that I am healed.  Made proclamations from the top of the mountain.  We all do this, we all want to be done with the hard things in our lives.  And even as I've tried to say I'm done with this, and I'm done with that, and I won't proclaim anything ever again, and now I'm just going to live and it will be good; I always knew/know and even wrote this isn't how it works.  Acceptance. Acceptance.  Acceptance.  Over and over again.  Accepting, acceptance.  Accepting that sometimes you're going to be sitting there staring at yourself in the mirror saying "why isn't this over?, I just want this to be done, I don't want to accept it anymore."  And that is why I haven't run for ten years.  It is so much easier to accept something when you don't confront it.

Life is finicky, it's short, it's long, it's everything and nothing, but it is the most valuable thing we have, so we have to make it worth it.   We have to live it the best we can, in every way that we can, one step at a time.  Running is a big step forward for me accompanied by a few small and scary steps back.  It doesn't matter though, you can't go forward without knowing what's behind you.  I will not stop, ever.

Dreams, Is this the real life? Is this just fantasy?

So it's been a bit over a week of 30 and all my questions and doubts about life have either been answered or disappeared.  Thanks for reading my blog, that's the end.

Well, ok, not at all but in some form life feels different.  I've realized,p with each passing year, there is a natural progression to life and growing up, if you will.  When we are young it is so easy and natural to think everyone older than us doesn't know a thing.  And maybe we don't have a clue as we grow older, we just get more comfortable with the reality of most things being out of our control and that even as we learn and gain knowledge there is so much we don't know and never will.  Age is just a number sure, but growing older is a reality all integers aside.  

It's not that I've ever really cared what anyone else thought, or that I've been consumed with what to do with my life.  If anything I've been consumed with self-doubt, which is probably the crux of mine and many others' existence.  But that is what you start to lose overtime, the self-doubt.  I found myself the first few days after my bday, thinking "ok, what am I going to do with the next 30 years of my life?"  But not in my usual anxiety filled and downtrodden way, in a much more "holy sh$t it is pretty amazing to have lived this long, have all kinds of crazy experiences and have so much more life to live".  I've always believed I could do whatever I want, but in the past the focus there was much more on how challenging it would be to do the things I dream of.  Now I find myself feeling more light and excited about building a dream.  If only I knew what that dream was.  

My first hero as a child was John Deere.  I had multiple little green tractors, and even invented an imaginary friend/side-kick to Mr. Deere named Steering Wheel.  The first song I ever wrote was "riding the bike with the tractor song" and I believe those were the only words.  When my brother accidentally hit me in the head with a croquet mallet, the only time I cried was when I dropped my John Deere tractor while getting stitches.  And the one my siblings loved most was the day my dad asked me, at the age of about 4, where we should go for the Sunday family trip... I said John Deere's House, because why not?  We drove for a few hours to a small museum/farmstead in Northern Illinois, Dixon I believe, and got there shortly before it closed, everyone was thrilled.  For the first six years of my life all I wanted was to be a farmer.

From there I became fascinated with Davey Crockett and in some ways, at least I would like to think, more so with First Nations' culture.  I was amazed by all the things they made and found their clothing to be way awesomer than mine.  Granted my corduroy overalls with trains and tractors all over them were pretty cool.  I did my best to make and wear as many of these items as possible.  I beaded, made pouches and drums and slept in my miniature teepee whenever I could.  This lasted for quite some time.  I was homeschooled till 8th grade; I remember the last couple years I was a bit weary of being seen roaming the neighborhood in my various outfits when the public schools got out for the day.

Intermixed with all this was an intense obsession with Legos.  At any given moment I had about 80 sets put together taking up every space in my room.  I loved building them and using my hands to put things together.  I still have them all and will hold onto them and one day pass them onto my young ones as the current Legos don't come close in awesomeness to the older ones.

And then came Michael Jordan.  I was too young and focused on Davey Crockett for the first 3-Peat, but I watched every single playoff game of the second one.  I spent hours at the basketball court reenacting  Jordan's numerous game-winners over and over again.  I wasn't destined for basketball stardom though.  I grew to my current 6'1'' with a size 13 shoe by age 13 and did not receive the gift of coordination until five years later.  In not the greatest ways I embodied some of Jordan's overzealous competiveness in my soccer playing days.  Sometimes I think I've grown out of that, but I'm realizing that isn't the case, I just don't play competitive sports anymore so it doesn't come out.

Intermixed with all that were numerous other obsessions from Whales, Medieval Times and Star Wars to the Civil War.  There are also many many more embarrassing stories, but I'll leave that to my siblings to start their own Peter's Growing Up Story Blogs.  I was definitely busted on more than one occasion having epic sword fights all by my lonesome in the backyard.  Anyway, put all that together and my ideal job is something like a farmer, marine biologist, historian, carpenter.  Although my 8th grade career quiz said I should be a Cake Decorator, that may have been the beginning of my lack of faith in public school and standardized tests.  Is there a masters degree that covers all those?  Maybe it is just living and learning?

So what is the dream?  After all the childhood fascinations I've grown up to study psychology, become a musician, a fledgling Yoga teacher and a pseudo writer among many other things.  I got into grad school for counseling before I moved to Canada and was slightly conflicted about not going, but now I am glad I didn't.  I like to help people I know that, who doesn't, but I'm not sure how much my motivation for going into counseling is pure.  I know it comes from experiencing trauma, chronic illness, loss and disability firsthand, but does it come from my heart?  I thought for a long time I would be a carpenter, Legos showed me how much I love to build things, but after losing my leg I decided carpentry would be too physically strenuous so I never pondered it again.  I am realizing more and more how much this competitive/physical energy still exists within me.  How my brain thinks, great do counseling help your fellow survivors because that makes sense, and keeps drowning out my heart, which is saying go and physically give all the energy you can into something whatever it is because that is what is going to help you.  I know it is not unique to me, but it rears it's head in different ways, the energy of life, the anxiety of it and right now I honestly think I would be miserable as a Counselor as I wouldn't actually be doing it for myself.  

So again, what to do?  Internet?  Are you there?  Do you have the answers?  I've thought about going to school for prosthetics on and off for years and for whatever reason said no I don't think so, but now I am thinking that may be the answer, or more likely one of many.  I know I don't necessarily need to go back to school as there are so many ways to learn and get to a place you like.  But a prosthetics degree would give me some amazing knowledge, allow me to build myself amazing legs as well as help other people maintain mobility and or regain the ability to go be a competive jerk just like Mike.  I would also get to work with my hands to build something. 

If life has taught me anything it is that you can't heal the mind without healing the body, and that that goes both ways.  As much as I know about the mind, as much as my mind never stops, I think I want to do something more tangible.  And besides, whether I ever get a degree in counseling or not, if I can help people with their bodies', I can help people with their minds'.  

It seems this blog has turned into my proclamation platform; going so far as to proclaim I will not proclaim anything ever again.  So, I am proclaiming that I am not proclaiming someday I will attend a Masters in Prosthetics program, is that a proclamation?

What I do know is Millissa and I moved to Saskatoon with the idea of living here a year and then moving somewhere for me to go to school.  It's been a year and a half and we are here for at least another year at the minimum.  It is a great place, full of good people, doing good things so nothing wrong with that.  Sometimes I think we've held ourselves back knowing we were potentially taking off sooner than later, afraid to really commit to friendships and what not, which is not a position either of us wants to be in.  We are making our comitment to saskatoon for the time being.  

I'm making my comitment to continue checking my focus, keeping it from falling strictly on the things I've lost and can no longer do and moving it to the fact that I cannot deny; I've been lucky enough to live a pretty incredible life upto this point and there is so much left to live.  Prosthetics is on my radar and will continue to be for one reason, when I think about doing that I can feel it in my heart, if that stops, I won't do it.  

Becareful with your dreams friends, make sure that they are really yours, that you feel them in your heart and in your body, that they are not exclusively backed up by reason and logic and then go for them with everything you've got!

P.S. The proof is in the pudding, that's me on the far right, homemade bow and arrow and all.

The Big 3-O!

I always thought I wouldn't be one of those people going "oh lord, I'm turning 30!".  But now I find myself in that boat, maybe it is just so culturally perverse that I can't avoid it.  Either way it feels significant now, but I'm fairly certain that a week or even a few days after it passes I won't be thinking about it at all.  

On the other hand, as I continue to hit these regular life "milestones", I am continuously struck by the new and different perspectives I gain on the life I've lived.  It is only natural to have perspectives shift over time, to know the things that have shaped your character and still come to a point where you think "did these events really happen to me?".  

Which brings me to this, 10 years ago I was 20 years old, ten years ago I was still battling cancer and living at my parents house, tens years ago I was a child facing things far beyond me, ten years ago I was facing the fact that I would soon be an amputee for however long my life lasted and ten years ago, on some level, whether I wanted to admit it or not, I was facing the stark reality that I would be lucky to live to see 21 or 22 let alone 30.  So here I am, now.

Still struggling with the same issues I've had for years, understanding them better and deeper and striving to move beyond them, sometimes vigorously and other times reluctantly.  I find my heart lights up when I can help people, and more importantly help people achieve things that they don't believe they can.  I often wonder should I be pushing harder with this, should I be a world renowned motivational speaker by now?  And while I do enjoy public speaking, I don't know if that is exactly who I am.  For me, you can't be going around preaching that you can always make the best out of everything; the fact is life is going to kick your ass at some point.  And honestly, I am of the opinion the sooner it does the better off you are; the sooner it does the sooner you know no matter what you have to live though you will be ok.  Maybe I should be a reality speaker known as Doctor Peter!?

The fact is I do more or less believe anything is possible, but I also know trauma and difficult situations stay with people and take time, courage, perseverance, creativity and countless other things to move beyond.  Even so you never really move beyond these things because as they break you, they make you stronger and that is what makes you who you are. 

So some days I go out and teach Yoga to youth who have been through things I can't even begin to process.  Other days I teach the young ones so they can see someone who has adapted and have something to draw from when they have to adapt as they grow up.  Other times I am in line at a coffee shop with a woman who is recovering from a stroke, who notices my slight limp and strikes up a conversation with me.  Next thing you know we're sharing abbreviated versions of our life story's and even though it is a short conversation, the connection there is so much deeper because in a matter of seconds the understanding of what we each have been through is significantly more profound than any of the words we have spoken.  And then I head to work and do what ever I can for the individuals with disabilities I support to get in touch with the abilities they inherently possess and allow them to live lives full of joy.

Don't take this to be me tooting my own horn, this is how all good people live life.  Whether you are a writer, a programmer, a teacher, a nurse, a cook, or anything inbetween (that's a shout out to you family!!!), we do it to make others live's better which makes our own lives better.  So please, whoever you are, wherever you are and whatever you're doing keep putting you're heart in it, the world needs you.   

On another level I know I help people because then I don't have to worry as much about myself,  but if you go too far in that direction that isn't healthy either.  I'm noticing I'm always willing to atleast attempt to take another commitment on, sometimes to the detriment of my own well-being.  Which brings me to the present moment, turning 30 eve (is that a thing?), Tom Petty and The Heartbreakers' "Damn the Torpedos" blaring from my record player (this is definitely my turning 30 album, and it sounds so good on vinyl..) and all I can think about is change.  More specifically the lifelong, fundamentally human experiential question of "do people change?"  Which seems to creep up more and more the older we get, the more we get to know ourselves and the more we see others get to know us.  

I do believe people change, I know I've changed, but I also know it takes a massive amount of discipline and heart to move beyond what are sometimes naturally inconvenient bad habits.  I've wondered why I haven't continued to write atleast monthly and then I think "how many times can I write and rewrite the fact that my life has been hard".  I know that the thing I know better than anything else in life is suffering.  There is a flipside to that, namely triumph, perserverence and joy, so that is a part of my reality as well.  But now as I grow older, and as mine and Millissa's relationship progresses, I am realizing how much my focus has been on the fact that I know what it means and feels like to suffer and lose things very near and dear to one's heart.  Being so close to another, I am begining to see how this focus on suffering has shaped me and how it can shape my interactions with others.  I swore off proclamations to the internet a few blog posts ago (that is ridiculous I'm even saying that).  That beings said all I can think about right now is how do I bring more joy back into my life?  How do I shift my focus, how do I move from sad inspirational figure, to joyful whatever the hell I want to be?  Millissa has brought a ton of joy back into my life but I absolutely cannot rely on her to do that, so how do I do it myself?  So how do I change!  Not fundamentally change who I am, because I don't know if that is possible, but change my focus on what makes me who I am.  I mean who wants to be made of suffering when there is real and palpable joy to be had?  So maybe that is what this next chapter of my life has instore, I'm going to do my best to make sure it is.  

I was chatting with a close/lifelong friend shortly before I got married, he said to me "it's like the old Peter is back".  This struck a chord in so many ways, I had just taken a massive leap of faith and was full of nervous joyful energy so I understand it.  Still, this idea that there was a new me and an old me, a happy me and a sad me and so on, it stung a bit to realize this wasn't so much an idea as a reality.  Of course there is no going back and that isn't what I want.  Again, shifting my focus, changing thought patterns moving from rubbing the sleep out of my eyes and grumbling while strapping on my prosthesis in the morning, to realizing how amazing it is that I am still alive and have access to the prosthetics I do.  Stopping judging people who have not, in my eyes, lived through much and thinking "well you haven't lost so it is still easy to be inspired by life", how unfair is that?  Not only to others but to myself for cutting off chances to interact and relate to people.  I have things to share, perspectives, insight, experience and so on but so much to learn from others, and I have to start making more space for that to happen.

Alright I'm rambling now and this is getting too heavy for a birthday post.  Listening to a song I wrote probably almost ten years ago now,

"I had no idea it would take this much to get here, I'm still heart broke about nothing, you're too good to be good, if it's worth it it's you know not always gonna be perfect, don't wait it's too late!"

Those lines pretty much sum it up, how much I didn't know then and still don't now, how heartbreak is just a part of life and even as it hurts it is a necessity, how striving for perfection is a waste of time and the things that are most important will never be perfect or ...nothing will, and how you can wait forever of you're trying to wait for the right moment or inspiration to change or take action.  The bottom line, it's always too late to wait, but never too late to take action.  

As always thanks for reading, thanks for the birthday wishes and thanks for all the support in the last decade!

   Onward and Upward to a New Decade of Joy!