It’s not easy living with a disability that is as a result of someone’s fuck up. It’s not easy living with the knowledge that no one will ever be held accountable. And its very difficult indeed living in the knowledge that the organisation who’s responsibility ot is to make life better for you actually places very little value on the limb you lost or the trauma caused, either by the original fuck up, or their ongoing poor decision making.
As you may recall from a previous blog, I was assessed and deemed to be 55% disabled. In fact that % is going to increase, because lately I won two more appeals meaning two additional medical issues are also going to be attributed to this original fuck up.
Think about that for a moment. That places me way above the 50% mark meaning I can now do way less than half of what I used to be able to do.
The original ‘treatment injury’
Due to the fact that multiple medical professionals failed to listen to what I was saying and failed to recognize obvious symptoms, my left leg had to be amputated below the knee. This is not an ordinary outcome and could 100% have been prevented. Therefore I am left permanently disabled. I say this like it should be obvious, but there are so many stupid hoops in have to still jump through, as if someone thinks it might grow back or something. Yes, seriously.
My other medical issues connected to my left lower leg amputation
- PTSD (severe trauma related to what happened and what is continuing to happen post surgery. This is managed rather than cured. It is a lifelong condition)
- Dysthymia (persistent depressive disorder – this is separate to the PTSD) According to Harvard health, Recovery from dysthymia often takes a very long time, and the symptoms often return. One study found that 70% recovered in an average of about four years, and 50% had a recurrence. Another study found an average time to recurrence of nearly six years.
- Claudication (severe pain associated with lack of sufficient blood flow to the muscles in my left leg because of the permanent loss of the main femoral artery.)
- Lymphedema in right leg (permanent damage caused by the multiple invasive surgeries on the right side while trying to save the left leg.)
When you look at that list, that is a significant amount of emotional trauma and significantly more physical trauma than just having my left lower leg chopped off.
Dealing with the decision makers – ACC
To be perfectly blunt, it is pretty fucking hard living with the fact I will have to deal with a bunch of decision makers that quite honestly only see me as a statistic and make me argue the point for every single thing that I am entitled to receive.
More than 55% disabled. That means realistically, that I will never be able to work full time again, words directly quoted from my GP.
That also means that I will have to deal with these delightful decision makers until I reach retirement age.
Constant arguments about access, equipment, weekly compensation, psychological trauma and more, are a multiple times a week occurrence. Although being self employed is much easier for me from a mental health point of view, I am made to feel like making any effort at all is fruitless. The second that I make a cent of profit, it is taken off me at the other end. So why the heck should I bother, I ask myself.
Common misconceptions
You are on ACC, they will pay you anyway.
Not true. On more than once occasion they have stopped my payments without reason or warning, leaving me in financial hardship. One of these occasions I was forced to go to WINZ and ask for a food grant. Last Friday it happened again. On this occasion it was some administration mistake. I got the payment 3 days later, thanks to my fast acting case manager. Meanwhile, I had nothing. No one ever is held accountable, made to apologise to me, compensate me. Nothing. All that happens is I start another fight, eventually I get what was owed (sometimes it has taken up to 6 months to rectify meanwhile I am penniless). As you can imagine this in itself is incredibly stressful indeed. Specially as it is a regular occurrence and never anything I did wrong, or can do anything about. Can you imagine if an employer treated you this way?
You’re ok, ACC will cover it
wrong. I have in the last 3 years filed 8 appeals against decisions ACC have made regards cover of my ‘injury’. I won 7 of those. Fact is I shouldn’t have to go through all this.
Apparently I already had an artery issue that led to this. (BULLSHIT) is my favourite absolutely ludicrous ACC decision.
Remember the significant mental health issues I have already as a result of this.. well yes, all of this is adding more to that.
Every limb I have been provided, I had to fight about it. The default is ‘oh great, you can walk from here to there, well off you go then, we’re done’. No consideration is made for the life I used to have, what I used to be able to do. I have done my own research and fought my own battles, all the way.
You will be better off on ACC
Not always. For example, WINZ pays 4 x more per km towards costs of traveling to medical appointments, and twice as much towards hotels if needed for medical appointments.
I also need to add here that I am stuck on 80% of what I earned in 2020. This doesn’t and will not change any time in the future till I am 65 despite the increase of the cost of living bla bla bla.
You can swim across lake Wakatipu, so of course you can work full time
(What the actual fuck?!)
NO one sees the fall out of all this. The days in bed with no energy, the apathy, the disassociation, fighting to force myself out the front door. Struggling to engage and stay in contact with friends.
Or the utter and compete exhaustion, the nights with no sleep or severely disturbed sleep. What about the physical responses to the trauma, severe asthma attacks, phantom pain (which ordinarily I never ever get) and the many many times my partner has too pick up my pieces and put me back together again over and over and over.
And when I can get out and do some exercise, the pain that actually causes me (mentally as well as physically), the price I pay later by way of fatigue, the massive amounts of time I need every day just to rest.
Some days I can walk, some days I can’t. Some days I can ride my bike, others I can’t. My shoulders are seriously overworked, so is my right foot (which is now injured as a result). The back ache, because my two legs are physically completely different.
And the severe PTSD I get every time I deal with these people and every time I have to go to the hospital to visit the limb centre.
Remember, this was all COMPLETELY PREVENTABLE.
Now tell me how lucky I am? I dare you.
