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!

    

      

   

Two Steps Forward, One Step Back, Two More Steps Forward

Way back in February or beyond that, I'm not sure anymore, I wrote and made some bold declarations of where I was going with my writing, the new year etc. and then I quit writing.  I've made many declarations over the years mostly about things I would do or become and in most cases they have not happened.  Understandably so I've become wary of making bold claims; most of us know words are much easier to speak than actions are to take.  So what happend?  I'm not exactly sure, two steps forward, one step back?

It is only human nature to relapse or regress at some point, it happens to all of us throughout life multiple times.  One moment we are on top of the world thinking, "I've really made progress in the last few months" and in the next moment we are right back where we started, wondering how we got to a place we thought we had finally left far behind.  Don't get me wrong, this isn't a sob story, this is just my usual attempt to be honest.

For a couple of months I found myself back in the place I set out to leave behind when I started this writing project.  The place I had occupied for years, that in its purest essence is simply a lack of faith in myself and the world around me.  A place I never occupied in my younger years and a place, that overtime, I grew all to familiar with as I tried to muscle my way over the hump of Cancer, Amputation, Post-Traumatic Stress and Depression.  Alright enough, you all know that already. 

Maybe it was the eight months of winter with more than 30 days of temps in the -20's (I'm not exaggerating people, I always said Portland wasn't cold enough but get it together Saskatoon!).  Or maybe it was the 10 month wait for immigration, that didn't seem like much for the first few, but the weight of not working and simultaneously building a new relationship definitely grew heavier as the months carried on.  It really doesn't matter though, the only thing to do is say "alright, I made it through that, I'm ready to get up and face whatever is next" while knowing I am a bit stronger thanks to what I am now moving beyond. 

Onto the good.  As of April 6th I am officially a permanent resident of Canada!  What does this mean, I can now legally work in Canada and I have a health card.  Yes, I do have this whole free health insurance thing.  

I'm not sure the system here is the solution, well... I'm sure it's not.  In most cases it is good but with access to all comes long long long waits, which can mean getting your final diagnosis of various diseases a couple months after the fact, which may also be a matter of life and death (don't take that the wrong way, as far as I'm concerned health care is a right everyone should have).  This is a topic for another time though, hopefully someday health care will get sorted.  The biggest thing I've noticed is how much I am used to the American system and getting whatever tests, prosthetic maintenance etc. I need ASAP, that is not the case here.  Again, with access to all most docs want to make sure you really need what you are asking for so that everyone gets the care they need.  My prosthesis is covered, but I'm still navigating the waters and figuring out how to get the service it requires, appointments have been made though.  

Something I haven't mentioned, is that for the last six months I have been teaching Yoga to kids and youth of all ages, from kindergarteners all the way up to youth in their early 20's.  For the young ones I have to give a full story of my leg before we can do anything Yoga related.  This has been fun as kids will ask me anything and their innocence can bring me to laughter just as well as tears.  One question where I had to swallow a few back was, "how sad did losing your leg make you?" This from a sixth grader, my answer, "it made me sad for years".  And then I show them pictures of me surfing, climbing and completing marathons and tell them that whatever happens in life they are strong enough to continue on and live amazing lives.  And then we do Yoga, and they see with their own eyes how I can still move, stand on my head, crack jokes and share the things I've learned.  Not many things bring me more joy than this, it seems to be an amazing use of my life experience.  

I've learned many things from this experience; one of them being the age at which it is too young to give kids the chance to ask questions.  While teaching a quick 20 minute session with a group of kindergarteners, I gave time for questions and one child mumbled something, I asked her to repeat it and very loudly she said "there must have been a lot of blood" in reference to me losing my leg.  I stifled a laugh and quickly closed the floor for questions.  

I did mention that I can now legally work, which means I'm back in human services.  I'll be the first to admit it is not my dream job, but luckily it is a job I do find joy in doing.  I'm currently working in a house where I support two individuals with mental disabilities and even though I have a couple years experience they are teaching me many things.  Millissa sure appreciates the fact that I'm making some bread now too.

Which brings me to the other thing that has been progressing, Millissa and I have now been married over a year.  I can't really believe the first year of marriage has already come and gone.  Many things have happened and in all honesty it feels like the last year took place in about five minutes.  

What have I learned? Well first to state the obvious to anyone that has been in a longterm committed relationship; one of the best ways to get to know yourself is to be dedicated to someone, spend time with them on a daily basis and see them get to know you.  As much as I am getting to know Millissa, I am getting to know myself.  Seeing Millissa try and decipher the 15 different meanings of my 15 different inflections of "mmm hmm" has been as informative to me as it is frustrating to her.

The biggest challenge over the first year has been establishing the foundation of our relationship.  I assume that is the first and often most challenging step of all intimate relationships, it has been tedious for us at times but I know we are making progress.  What we do have and what is constant, is a deep seeded love for each other.  This doesn't mean we haven't come to the trivial place of wondering if we have either taken the greatest leap of faith, or made a large mistake by getting together so rapidly.  That's just it though, the love we feel is an unavoidable pull towards each other, it doesn't mean once the pull brings us close we know how to fit together.  This is any relationship's challenge in its purest form; how two people fit together.  

Dealing with finances, new jobs, lack of jobs and on and on, are all things that make it that much harder to meld our lives into one.  So we're married but we're dating.  Dealing with the hard stuff after doing the easy part and tying the knot.  With each day it gets easier and we still make each other laugh uncontrollably often so I'm pretty sure we got this.  Love you Millissa, looking forward to what the rest of year two has in store.

One thing it does have in store is a trip to Wisconsin in the coming days.  Millissa and I will be making the 18 hour drive from Saskatoon to Spring Green next week.  I haven't been home for the last two summers and Millissa has never seen the beauty of the Driftless Region in summer so I'm really excited for this coming trip.  As usual we'll be around for about a week, which won't seem near long enough but we'll take what we can get.  

One of many highlights of this trip will be attending the 10th year of 4PeteSake's Day in the Park.  For those of you who don't know, 4PeteSake is an organization started by some amazing individuals in the Spring Green community that supports people facing medical emergencies in their life.  It was originally founded in 2004 to provide the funds needed to purchase myself a state of the art prosthesis.  Needless to say I am humbled and honored to see how 4PeteSake has grown and continues to serve people in need.  I never could have imagined anything so incredibly positive coming out of the battles I faced.  If you are in Wisconsin get yourself to Spring Green on August 17th for a fundraiser like no other.  I'll be playing some songs and giving a brief speech around 5 in the evening.  For more info checkout 4petesake.com.  

Enjoy the rest of your summer!

Freedom is an Oxymoron

Freedom as defined in the dictionary is "being unrestrained, or the power to determine action without restraint".  This is not freedom.  If you forgo all restraint and take whatever actions you like, say eat ten pounds of ice cream a day and start running red lights because you don't feel like waiting, where will that take you?  Will you be free?  No!  You'll be dead.  If you verbalized every random obscene thought that entered your head, you would end up with no friends and a slew of people who found you completely offensive, unless of course you are perfect.  That is not freedom.  Freedom is not impatience.  Freedom is not turning every hopeful compulsion into action, with the desire of finding pleasure.  

How do I know freedom is not all of the above?  Well, there was a time when I was searching for meaning and I wanted it fast and easy.  I thought maybe I could find it in ice cream and beer, or other things that temporarily took the angst of life out of my vains.  You can guess how that worked out.  I had some fun, but I didn't find any meaning.  The ice cream melts, the beer runs out and you wake up with a headache and an even stronger longing for meaning.  Freedom is meaning.  Freedom is waking up in the morning and being excited for what you're going to accomplish in the day.  

And how do you find meaning in life?  You don't just say, "hey, I want more meaning," and the sky opens up and says "here is your path to meaning, it's is bright and clear, just keep walking, piece of cake."  If only it was that simple, well actually no, nothing worth it comes easy.  Many of us are frantically searching for that thing we are going to do to make the world better and make our hearts swell with joy.  You won't find meaning if you don't stop searching for it.  You inherently know what gives you meaning, but if you don't stop trying to figure it out, you'll never get quiet enough to hear what you're telling yourself.  The world is chaotic, your mind is chaotic, your heart is full of things you need to know, and to hear those things you must have discipline.  Discipline will give you meaning, meaning will give you freedom; freedom is discipline, discipline is freedom.

Does your brain hurt now?  Why am I going off on this tangent?  Well over the last 40 days I have been partaking in a 40 Days of Yoga habit forming practice.  This means yoga and five minutes of meditation everyday.  It also means taking something out of my life and adding something in, i.e. discpline.  I toke out alcohol and added in an attempt to talk to people more.  I haven't had a drop of alcohol in 40 days, the longest span in close to ten years for me.  Alcohol is something I have used in excess at moments in my life, I have gotten a better handle on that over the last few years, but it still seemed and feels like a good idea to give it a rest.  I don't think the day will ever come that I don't like beer, just being honest.  Regardless, this has been a really good exercise in discipline.  

The first ten days were easy.  That isn't an incredibly unusual time for me to go without having a drink.  As I hit the halfway point I could feel the challenge getting to me.  While having discipline in part of my life I don't normally have, I found myself lacking discipline in places where I normally have it.  Suddenly, I found my diet going off the rails.  Every time I was out I wanted to buy a candy bar and a bag of chips.  Or steak, summer sausage and ribs.  I wanted salt, sugar and meat, that's it.  While my diet is random, I try to eat healthy and balanced, but am not hyper aware of everything I eat.  Still, this was not normal.  

It is kind of like the Whack-a-Mole game.  I smashed the alcohol mole, but the gorging, salty, sweet, meat-tooth mole came up.  At first it caught me off guard and I just went with it, twix, kitkats, sausage, pork, chips, ice cream, put it in a blender and pour some beer on top.  Mmmm heaven!  That didn't happen.  I've begun to push this mole back in his hole and am doing my best to keep him there.  This time has taught me much about discipline and how much balance and focus it takes to live a healthy yet enjoyable life.  If you ask me, the answer is not in disciplining yourself constantly in regards to everything.  You can't eat only the über healthiest foods, workout four hours a day etc. and be happy.  Likewise you can't do the reverse.

As far as talking to people more, it is another step in getting back to life.  I remember around my junior or sophomore year of high school talking to pretty much everyone, not really having a care and then something switched and I don't think I have communicated as openly ever since.  That something switching was the beginnings of worldview that was not very optimistic and left me prone to depression, among other things, for a long period of time.  This lack of communication was exacerbated by cancer and losing my leg.  I am open with what I have been through, but I know at times, more so in the past, I shied away from casual conversation because I got tired of telling my life story.  Which can be hard for me to avoid, you don't get far in knowing anything about me without hearing about cancer and the loss of my leg.  It permeates every part of my being, every belief I have, and most actions I take.  

Making communication a goal wasn't a thought that would have entered my head until recently.  I am realizing how much I packed all the intensity of cancer and losing my leg into a solid rock and put it on my back.  No wonder my communication was stunted, it is hard to have casual conversation carrying that weight around.  I'm still not much for casual conversation, facing your own end will do that.  As I've finally bowed enough to this weight for it to roll off my back things have shifted.  Notice I said bow, not throw, push, stand or anything that connoted fighting.  It took a long time to realize I couldn't push this away with aggression, I could only bring it close, let it in and let it break me.  So bowing, bending and throwing myself wide open was the only option I had to move the weight off my back.  And even as I did that, I first imagined that this rock was now underneath my feet and I could stomp and jump and it would break.  Nope.  Again, aggression serves no purpose.  

I've wondered for a time now, if I make my life heavier than it needs to be with what I've lived through.  Wondered if the weight is really as heavy and daunting to carry as I've made it out to be, or if that is my own mind.  I've wondered if the way I've lived in response to cancer and losing my leg is right, or if I really should just be happy to be alive.  In the past I've shied away from answering this question, but the other day without meaning to, I answered the question.  I've coped and done my best to live well during some difficult times.  Am I proud of everything I've done? No.  Are there things I wish I could do over?  Yes.  But I refuse to live in the past.  So the answer to this question is of course, yes and no.  But the real point is that it is all on me.  This weight, what I've lived through, no one but me can determine if I fall or stand.  I determine how heavy or light the burden is.  I determine if I say "look at how hard my life has been" and then give up.  Or if I say "wow, what a lot to live through in less than 30 years" and then get up and run with the opportunity I have to demonstrate the strength of the human spirit.  I feel more lightness than I've felt in years, now that I have admitted to myself that no matter what happens to me, it is 100 percent my responsibility to make my life awesome!

So freedom isn't Ford trucks, something someone can take from you, or French fries.  Freedom is the ability to choose the way you discipline yourself, it is the ability to have a dream and then hunker down and do the hardwork to achieve it.  It is having balance, holding yourself accountable and also saying forget it, doing something completely contrary to your dream, being ok with that, and regrouping and getting back to it in the morning.  More than anything it is taking FULL responsibility for YOUR life.  That is where it all starts.