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.