Today marks 3 years since I elected to have my left leg amputated below the knee. I can remember that moment being wheeled to surgery. I was looking down at both feet, knowing that one would be gone by the time I came back. I felt massive grief, there in that moment in pre-op. It is indescribable.
If you were to ask me to sum up those 3 years in 3 sentences it would go something like this:
- I roared into this year – boxing on to prove everything could still be like it was before.
- I came crashing down. I realized that last years perception was ridiculous. Of course everything was different. I had to begin figuring out what my new normal actually looked like.
- Initial feelings are I have gotten nowhere at all this year. Reality is (after some close self analysation) That I have begun to find a regular achievable pattern for exercise and work. I am better at controlling boom bust and I have made a little bit of progress mentally.
The fact is, the world does not make everything fair and equitable for people who are disabled. We are marginalised and discriminated against very very frequently and it flies under the radar more than it should.
My battles just to exist in the world like every other able bodied person continue, my limitations are still there, as is the PTSD.
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I follow a fair few people on social media who have a range of disabilities. One person who inspires me to carry on fighting the good fight is someone on Instagram called Leausogeante who has a spinal cord injury. After 5 years of being a full time wheelchair user she has finally cracked the ability to stand upright and walk again.
5 years. Well hell. Perhaps I’m expecting just a bit too much too soon. 🤔🤷🏼♀️
What progress have I made? Well I don’t rely on the wheelchair quite as regularly as I did 12 months ago, but it clearly does have a place and always will. I am still persistently working hard on walking. I’m able to walk 2000m on a treadmill now. I haven’t yet tried it outside. I think I’m finally coming out the other side of what’s been a tough time with an ankle injury. This has been as a result of the extra load it takes on behalf of the missing left foot. From what I read this is a very common problem. It’s meant having a new orthotic made, and another long fight with ACC over paying for it and recognising it is related to having the amputation. It does make life hard though, when your only foot is causing you pain.
I have a an AmpFin now, which I’m using when I swim. The aim of this is to strengthen my left quad to help support walking (and maybe one day, running). This seems to be working well, because I can now feel my left quad working hard when I walk in the treadmill which I never had before.
Cycling is keeping on keeping on. I still have no idea why sometimes I get claudication pain and other times I don’t. It’s the same with walking. But, I’m still chipping away at this.
I hope to keep making gains with this left quad through swimming with the fin / kick drills.
I’m also collecting a new foot next week with carbon fibre ankle. I have really struggled with running and I am wondering if it’s just the fact that the gap between simply trying to walk and running on a running blade is just too big.
The plan therefore is to use this new ankle as a transitional tool. It allows me to walk as normal, but the spring in the ankle will also allow a bit more cushioning for jumping / jogging which I just can’t do with a hydraulic ankle. Watch this space.
Dealing with PTSD and dysthymia continues to be incredibly hard. I do talk about it to keep awareness out there but there’s no real way of getting across how very challenging this aspect of my rehab has been and continues to be.
I am able, to a degree, to close down some negativity that comes in and file to deal with at a time I feel is appropriate. I am able to – at times – deal with challenging circumstances regards my disability without completely losing it like I might have done a year or two ago. Fact is, it’s hard, very very hard. It takes a lot of my energy to just deal with that and keep on a level. I manage this more of the time than I did, but it’s by no way perfect. I have still got a long long way to go.
I still see a psychologist regularly and I can’t see this changing any time soon. I am also now with an incredibly loving and supportive partner who supports me 110%, unconditionally. He is making a huge effort to understand the psychological damage I have and this has all caused me as well as understanding the complex physical limitations I have. He is now a very very important part of every aspect of my life. We talk about anything and everything. I don’t feel judged or inferior or broken or inadequate. I feel loved.
It’s sad how much discrimination is still in the world. Discrimination that most people don’t even notice.
I posted recently about my 55% disability and how despite this assessment I have been categorised as 4 in para sport (5 being the top category – those that are least disabled). I found it really interesting that a reader contacted me who is an above knee amputee and I know they are from a place in the world that uses the same % disability calculator. They have been assessed as 32% disabled and also categorised as a 4 in para sport. It makes absolutely no sense to me at all. None of it does.
For that reason I have decided to disengage from para sport. I don’t need that type of additional discrimination and negativity in my life. Life is already hard enough as it is.
But, I am still at the mercy of society’s warped and narrow minded vision of disability. I’m not free to book any hotel I like online and be assured I will get what I need, because I more often than not won’t. I’m not free to enter races I want to do and be assured I will have a fair chance at competing, because 99% of the time I won’t. Any type of travel (train, plane… etc) is challenging.
And… even THREE YEARS after my amputation I am still waiting for ACC to modify my house to make it wheelchair accessible (ACC is that govt organisation I now am forced to deal with as a result of the fact it’s a medical misadventure and NZ law prevents me from filing a law suit).
So while I can continue to work on physical and mental progress, the fact remains that until the world gets rid of their discriminatory approach to disability inclusion, there are a number of fights I will continue to fight for many years to come yet. This makes me feel very sad. I didn’t expect this part of the battle at all.