One Leg, Eight Years

Eight years ago last Friday I became an amputee.  As Friday progressed I found myself working and on my feet for almost seven hours straight.  By the time the day was over I was exhausted and had barely had anytime to think about what the day meant, let alone what the same day eight years ago meant and means to me now.  Thinking back on it a few days later my first reaction is joy, joy at the fact that I am able to be on my feet and do everything I need to do at work and at home even though I am an amputee.  There was no sadness in me on this day, a friend told me "congratulations" and then quickly stopped and asked if that was the right thing to say, I had to stop and think for a second but quickly I felt yes, that is the best thing to say.  As I've mentioned and made clear in previous posts it was a hard eight years, but what I've been able to accomplish in that time is equally as amazing as whatever hardship I have suffered through.

I lost my leg, my ability to compete in the sports I love, the ability to run, the ability to catch a bus that I would have caught if I had left the house 15 seconds earlier, the ability to slide on wood floors in my socks but I didn't lose myself or my ability to heal and move on.  There was a time when seeing people running, and playing soccer or basketball felt like a dagger to the heart.  Every once in a while I would head back to the basketball court and attempt some form of a comeback, but I just couldn't do it.  I would play in a pickup game and my whole body would react just like it always did but my prosthesis couldn't keep up.  My body couldn't do what my brain wanted and tried to make it do.  I finally gave up, it was just too painful, going to the courts put what I could no longer do square in my line of sight.  I no longer miss the sports, if I was given a chance one way or another to play like I used to I would take it in a heartbeat, but now I find myself missing the smaller things, like I mentioned before wood floor and socks...

That's the loss, but what have I gained and more importantly what have I accomplished in the last eight years.  I completed seven marathons on a hand-cycle with a PR of an hour and about 5o minutes, that's right I've done a marathon in under two hours.  Learned to whitewater kayak and helped and encouraged other survivors to do the same.  Graduated from the University of Wisconsin-Madison with a Bachelors of Arts in Psychology.  Played in a rock and roll band for five years straight.  Spent two years working with people with developmental disabilities.  Moved across the world to S. Korea, and back across the world to Portland, Oregon.  And now here I am in a city, on my own, regaining my confidence and independence and building the life I want to live.  That's a pretty amazing eight years all things considered.  

I'm not shy about my prosthesis, I don't hide it under skin colored foam or hesitate to where shorts.  This has led to some pretty great interactions with kids and adults alike.  One of my favorites is the time I walked out of a restaurant in Chicago.  There was a boy, probably around three years old, he literally fell over and proceeded to shout "mom, mom, there's a robot, a giant robot, mom there's a giant dinosaur".  I've thought about this one often and can't really find the connection between robots and dinosaurs beyond being three years old and the latter being the two awesomest things you know exist, I took it as a compliment.  

On another occasion I was at a Christmas party and I wasn't wearing a sock on my prosthetic foot, just a rubber foot sticking out of the end of my pants.  This little girl came up to me and said "did you have plastic surgery?"  Being the gentleman that I am, I responded by showing her the entire prosthesis and explaining what had happened to me.  She proceeded to follow me around the entire night telling me how cool my robot leg was.  I found myself being forced to make small talk with the only seven year old at the party, we talked about pie and she didn't even like pie, which I didn't get, I mean come on imagine being seven and turning down pie.  She was a sweetheart though.  

I've always loved kids reactions to me and my prosthesis.  They say the first thing that comes to mind and don't worry about offending me, which is really a thing of beauty.  I love the opportunity to show it to them and explain my story.  I consider it an honor to be able to show kids and adults alike that there are people all over the world doing amazing things despite whatever difference in ability exists.  

Adults, on the other hand, are much harder to be nice to when they stick my amputated foot in their mouth.  One of my favorites instances of said foot in mouth and one that I still find genuinely humorous occurred when discussing the price of micro chip prosthesis's a relative said "those must cost an arm and uhhhhhhh really expensive".  Some how I managed not to burst out laughing right then and there, but I get a good smile every time I think of that moment.  

One interaction I've had, that to this day  I am amazed I didn't chew this individual out, was with a dental hygienist.  She was in her early 20's and she was more of a Kraft single than a five year sharp cheddar in the cheese world.  So she comes in to start cleaning my teeth and obviously had read the words cancer and amputation in my files, and probably nothing else.  I quote " so uh you had cancer of the leg?".  I was so taken aback at how ludicrous this sounded, let alone that she would think I would want to talk about this with her, all I could manage was "uh yes".  Again "so did they just keep doing amputations till it was gone?".  My reaction "yes they cut off my leg inch by inch until miraculously they cut out the cancer because we live in the dark ages and actually my surgery was done in a cave by the last living Neanderthals....".  Really all I could manage again was "uh yeah", I didn't want to go through trying to explain what actually happened, after she made her complete lack of medical knowledge known.  I said the second "uh yeah" with an undertone of "if you know what's good for you, you'll close your mouth and clean my teeth".  What I should of said is "actually no, my leg was taken off in a single operation and the following night was the most painful sleepless night of my life", that would have made her think and shut her mouth at the same time.  All offensiveness aside, I know this girl was doing the best she could.  Makes me glad I'm a patient person and that I waited till years later,to put her in her place, in a blog she'll never read.

Another thing that happened on occasion was when I would pull into a disabled parking spot someone would see this young healthy guy in the driver seat and just stare at me.  Usually I would get out, they would see my leg or slight limp and move along.  One time, I was pulling into a spot at the local watering hole, with my window down, and before I had even parked this middle aged man said something along the lines of "who do you think are parking there?"  I put my disabled tag on the rear view mirror, stepped out of the car in shorts and gave him one of the most satisfying glares of my life.  I didn't say a word, hopefully he learned to think before opening his mouth.

The grand champion though, the one that takes the cake, the one that makes everything else look completely normal came while I was waiting in line at an ATM.  A homeless woman approached me and basically berated me for not eating my amputated leg because if I had it would have grown back.  She claimed that doctors don't tell people this because then they wouldn't make any money.  I couldn't respond to this, I just stared at her and thought how was I suppose to do that?  I won't get into any finer details with that one as it makes my own stomach a bit squeamish.  This is another one that always brings a smile to my face for how ridiculous and absurd it was.

In closing, I'm very excited for the next eight years and the rest of my life.  I know I've accomplished many things but there is so much more to do!

Resolution Revolution

We are over halfway through the first month of the year and most of our resolutions have either been broken or aborted.  I've never been one to make grandiose plans to start life a new on January first.  I find there is too much pressure involved in it, and while symbolically January first is the beginning of something new, any other day is an equally ripe opportunity to begin changing your life.  

I'm taking a different approach this year.  I have more goals and plans than at any other point in my life, but I'm putting zero pressure on myself.  My negative habits and behaviors have developed over years so I am not going to set myself up to fail and try and change them all over night.  This approach has already started paying dividends.  

So what are these goals and plans I'm making for myself?

I started on a very basic level and promised myself to listen to my heart and do the things I know make me happy.  When you get down to it, it is as simple as taking a moment to realize what makes your heart beat, what lights you up from the inside, and what makes you excited about life.  On a deep level we know these things about ourselves, but too often we get caught up in the world and forget to listen to our hearts.  You've got to love yourself to be happy, no matter where you are or what you're doing in life, there is no way around it, YOU HAVE TO LOVE YOURSELF!

I started with that, the simple goal of loving myself and taking better care of myself, it is surprisingly easy and addictive once you get started.  I tap myself on the chest before I walk into work, I say it in my head "Peter, I love you, you're flawed like every human being but you've done so many good things and have so many more good deeds to accomplish".  It doesn't always work, doesn't always relieve the nagging anxieties I have about life, but it always helps.  And the more I repeat it the more it is ingrained within me and causes me to consistently act out of kindness.

Once you get in touch with your heart, once you get accustomed to following it, all the other pieces of your life start falling into place.  Once you start breaking your bad habits it becomes harder to fall prey to them because you know how much better you feel when you aren't say...drinking a six pack of beer on your own.  Which brings me to drinking, a habit I plan on breaking or finding a better balance with this year.

 Growing up in Wisconsin I've seen my fair share of lives hanging in the balance due to alcoholism, it's a heartbreaking thing.  In Portland I've noticed people sip on beers and manage to make a single pint last....an hour.  I don't know if that happens in Wisconsin, it seems everyone is chugging 3o PBR's a night.  I don't consider myself a full-on alcoholic, but I know addiction is in my genes and that at points in my life I've drink too much for the wrong reasons.  

I didn't have a drop of alcohol for the first ten days of the year, which was easy once I got passed the first couple days.  Since then there have been birthday parties etc. and when everyone is drinking so am I.  I love the comradery of it.  If you're looking for someone to stay up all night with talking nonsense that's me.  I also genuinely like beer, I like the taste and I like searching out new beers to try, which there are no lack of in Portland.  Oh, and I like whiskey too...

The real problem is that I never cut myself off.  It's an infinite loop, the more I drink the more I want to drink.  Imagine a bowl of chili, it can only hold so much chili, but you keep putting more and more chili in the bowl until eventually it's overflowing all over the place.  Now turn that chili into whatever is coming out of my mouth at two in the morning when I've been drinking.  I'm liable to tell whoever happens to be listening things such as, how much I make an hour, the history of pizza burgers, and oh maybe whatever the story of my latest heartbreak is.  Then I wake up the next day, feeling awful, thinking who was I talking to when I said that and why did I say that.  I don't like myself in these moments and I know I'm not respecting my body when I binge drink.  With all my body has carried me through I think I owe it some respect, so I'm getting back on the wagon.  I want to give myself 30 days and get to a point where I can have a couple beers and leave it at that.  We'll see where it takes me.

Here is a list of other goals I've made for the year.  Pretty basic and generic...

Start a blog...done!

Cook something I've never cooked before once a week

Buy a bicycle 

Play music

Exercise

Write 

Drink Less

Volunteer

The overarching theme is clearly to be happier and healthier.  I feel like I am on the right path and can definitely accomplish these within the next year, which is pretty exciting.  It's going to be a good year for sure!

P.S.  My apologies for the chili analogy, it doesn't really make any sense but sometimes I need to indulge my absurd sense of humor. 

Upside

I want to turn that last post completely upside down, so here goes.

The first thing I mentioned was how spending so much time with death made me feel old and hard.  The flip side of this is that, through knowing death, I have a much deeper appreciation for life.  Maybe it has made me hard, but it has also made me soft.  Simple things, like a bird flying by the window while I'm on the train, give me so much peace and faith in life even while I am surrounded by the chaos and abandon of a busy city.  

Then came cancer and its ability to crush an individual's independence.  This is a hard one, as I am to this day, working towards gaining my independence.  Yet, the positive here is obvious.  Even as I couldn't take care of myself the systems were in place to take care of me.  I carried a heavy burden, but it was lessened by the amazing family and friends I am so lucky to have.  

The lack of reason or cause for me getting cancer is a tricky one to turn into a positive.  If anything it has prepared me for the fact that the unexpected can always happen.  It has also shown me that even when you lose faith in life and your actions; if you are patient and work hard your faith in life will return and be even stronger.

Grief, there is no way around this one, the pain of losing my leg and a part of myself is very real.  On the other hand prosthetic technology is amazing and is advancing at an incredible pace.  The prosthetic I currently have allows me to live fairly unhindered by my disability and I can't wait to get an amazing robot leg in the future.

I don't see my struggles with connecting to people going away anytime soon or probably ever.  The pool maybe smaller, but I've found that anyone who is genuine and or has been through their own ordeal is someone I can form an immediate and significant connection with.  This doesn't happen all the time, but when it does it is incredibly satisfying.

So here I am in Portland, Oregon, a whole city and the rest of my life sitting there in front of me.  This is the first time in my life I've truly been on my own and at first it floored me.  I came here for love and that didn't work out.  I was left going through a breakup in a city I didn't know with no support around me.  It was hard, very hard.  I looked at my options; stay in Portland or move back to Wisconsin.  In some sense moving back to Wisconsin would have been easy, but I would have felt completely defeated and I didn't want to go through trying to live that down.  I stayed, I said to myself "no matter how hard this is, no matter what it takes you are staying here because you have to grow and you have to find yourself".  

Portland is starting to feel like home and I'm making some connections with really good people.  Last night I had the privilege of attending a new friends' birthday dinner.  It was a Georgian Supra.  Basically there was a toastmaster who gave a toast on a specific theme 
and then who ever wanted to could give their own toast on the theme.  The themes were mothers, leaving, community, and cycles of life.  I toasted to every one...

Mothers.  I have an immense amount of respect for my mother.  She raised seven, that's right seven, amazing and unique individuals.  And continues to spread her love of music to children through teaching music at two elementary schools and teaching piano lessons at home.  Mom, you're amazing, I love you.

Leaving.  When I graduated from college in Madison, Wisconsin I knew I had to get out.  I left many people behind and I miss them on a daily basis, but I also left behind a place where I went through a long and painful ordeal.  It was hard to gain perspective on my battle with cancer when I was constantly surrounded by physical reminders of it.  In a sense I not only physically left Wisconsin, but I also left behind a mind that was beaten down and lost.  Leaving has been incredibly cleansing for me.  I'll always love Wisconsin, but right now I need to not be there.

Cycles of life.  28 seems to be the year many people point to as the time you start growing into yourself.  This seems true, as I feel I am at a crossroads and am ready to start whatever is next in life.  I'm coming up on ten years since I was diagnosed with cancer and eight years as an amputee.  I think these are significant milestones in that I am finally able to move from pain and grief to healing and growth.  I'm very excited for this next cycle and whatever it holds.

Community.  This was an easy one.  When I was sick I was forced to go on Medicare, in order to pay my medical bills, as I was about to be booted off my parents' insurance.  When I lost my leg Medicare would only provide me with the most basic and barely functional prosthesis.  They claimed I had to prove I would actually use a prosthesis.  At the time I was 20 years old and a former fierce competitor in whatever sport I happened to be playing.  Luckily I come from an amazing community.  People got together and started talking and wanted to find a way to provide me with the prosthesis I needed.  Within nine months over 90,000 dollars was raised and an organization called "4PeteSake" was born.  They bought me a leg and to this day continue to raise money and help individual's who can't afford their medical bills.  I am forever grateful  to this organization.  There is a big fundraiser once every summer, it is a day I look forward to like no other.   To know that everything I have been through has produced something so good and helpful to others is incredibly humbling and satisfying.  Spring Green, I love you like no other small town in the world!  

That's all for this week.  

Cheers!

Setting the Stage

I want to set the stage for whatever is to come and to do that I need to delve deeper into the cancer psyche.  I've gotten more of a grasp of the psychologically impact over the years, but I know it is something that will evolve throughout the entirety of my life.  This is simply where I am at right now.

First a quick recap.  I was diagnosed at 18 (April 2003) with bone cancer in my left femur.  Initially I went through nine months of chemotherapy and had my left knee replaced with an internal metal knee.  I was told my prognosis was very good and that I would need to have scans for a couple years to make sure my remission was complete.  Summer 2004, first recurrence in knee...surgery.  Fall 2004 moved out of my parents house and attempted collage.  October 2004 cancer spread to my lungs and recurred again in my knee.  Moved back home, had lung surgery, started chemo again and was told the only chance I had for survival was to have my leg amputated.  January 2005 chemotherapy was stopped because it was making me lose my mind.  January 25th amputation surgery.  From here it gets blurry.  I had two more lung surgeries and some lymph nodes taken out of my groin.  The last surgery was sometime in the spring of 2005, at that point I didn't really care.  I was facing the fact that there was a 75% chance I would be dead within a year.  Not much to do  but enjoy time with friends and family.  Yet, here I am almost eight years later, I got lucky.  The cancer stopped growing, my body caught up to it, I don't know what happened.  It doesn't matter.

After this I went through a period of about three years where I had a CT and  a PET Scan every three months.  Talk about nerve racking.  Over time I became more accustomed to the anxiety these scans induced and with each clean scan I felt more alive.  Still, this time felt like something akin to a prolonged near death experience.

That's the physical side, now for the mental side, which is much more complex.

First and foremost, coming so close to death makes me feel old and has hardened a part of me to the point, that on some level, not much fazes me.  This is a good thing in some regards, but I wish I could get a bit more excited at times.  In that sense I think cancer pushes you forward, way beyond your years.

At the same time cancer crushes your independence.  I went from 18 and headed to college, to depending on my parents, siblings and friends for support in every aspect of life.  On top of that I was reliant on the government for health care and doctors to give me any chance at life.  Cancer pushed me forward even as it held me back.  I was left feeling like an old man and an adolescent at the same time.

Then comes the fact that I didn't do anything to get cancer and there is no known cause of bone cancer.  Before cancer I had had zero significant health problems.  This lack of reason and cause left me feeling very apathetic and with little faith that my actions made much difference in life's outcome.  

And then you have grief, with which you are supposed to go through a process and eventually accept and let go of whatever you've lost.  Well, when you lose a limb that isn't exactly possible.  I wake every morning and strap a titanium leg onto what's left of my left leg in an attempt to replace what I've lost; I have to hold on even as I try and let go...I haven't quite wrapped my head around this one.

Stir all this up into a big messy soup inside my head and you are left with a detached, overwhelmed and confused individual.  I feel like an observer as the world goes on around me, I struggle to connect with people because I am more equipped to deal with trauma than everyday living.  At the same time I am dying for connection, for someone to reach out and tell me they know how this feels, and how isolating it is.

I've felt very  lost and overwhelmed at times in the last ten years.  I didn't know how to trust myself after this, after my body turned against me.  I was laying in 

bed last night thinking about this, asking myself if I've regained trust in my body after it spontaneously turned against me?  I was thinking that on some primal level I don't know if I have or if I ever will be able to.  And then it hit me that that is ridiculous.  A part of my body revolted but the majority of me is intact and that is amazing.  That's really what this whole project is about; taking all the negative reactions I have had to cancer and turning them on their head.  Yes, my body turned against me, but my body was and is strong enough to survive and live on.  Quite frankly, that is amazing.

I'm not ashamed about the negative places I've gone, nor will I beat myself up for going to those places.  It makes complete sense to lose faith for a time when, without mercy or reason, your world is turned upside down.  I wish I could break it done to something as simple as "Livestrong", "Stupid Cancer", or "F Cancer, but I can't, that's not who I am and it really isn't that simple.  

I've been thinking about all this stuff for a long time and been wanting to change, but for whatever reason wasn't quite ready to start taking initiative.  I'm realizing that even within everything I've been through there is a normal progression in life.  I've recently turned 28 and understood that I know what I want in life and that I'm as determined as ever to get it.  It seems the older you get the more responsibility and holding yourself accountable comes naturally.  All I know is that I feel more alive and capable now than I have in the last ten years.  I am completely open with myself and accept all the the reactions I have to what I've been through, but I'm done being complacent and letting those reactions determine who I am and how I feel.  I know I have a giant heart and one way or another I will find a way to break grief and loss' grip on it.

A few disclaimers.  

I know there are people worse off and I'm not alone in longing and suffering.  At the same time you can't say to yourself "there are people worse off" and believe that that is enough to get you through whatever you are going through.  It's not.

Second, I promise all my posts won't be this heavy.  But if I've had one consistency through all this, it is that I try and be honest and open to the core, no matter how painful it is.