We got some news last week that was very confronting and infuriating.
I really should start with the back story, for those who don’t know…
About three or so years ago, my partner quit work after an emergency admission to hospital. He was a spray painter and powdercoater, and had deadly paint poisoning. His lungs were shot, doctors couldn’t ascertain whether or not he’d had a heart attack, and my family and I didn’t know if he was going to survive the whole catastrophe. I’m happy to state that he did, of course. These issues were caused by unsafe work practices due to a tight-fisted boss.
My father at the time, helped me to gather information to sue the boss, but a few months later, my partner’s mum died, and dealing with that saw us deciding to let go of the worker’s comp idea. I really had made peace with all of that. Truly.
Anyway, over time, my partner began hallucinating, lost his sense of taste, smell, and to a lesser extent, hearing. He also became irrationally aggressive. We were living in Sydney at the time, and we begged our doctor to help us with this, and his answer was to ‘stop being angry, then’ and to ‘wait and see’ with regards to the sensory losses.
After a bit under a year, his hallucinations stopped and his senses came back to functioning normally. I put it down to withdrawal from the paint in his system.
Then, he started to do this a lot:
We knew he had a mild allergy to petrol and cockroaches. We couldn’t work out if he now had a compromised immunity due to the poisoning and was therefore developing new allergies. It got pretty close sometimes, with him having breathing difficulties. By the time we’d moved to the country (which doctors encouraged him to do, to escape the smog for his lung’s sake), he was suffering anaphylaxis on a daily basis.We even suspected a peanut allergy at one stage, but thankfully were proven wrong on that.
We later discovered that it wasn’t an allergy causing this. By the time we had his mental illness diagnosed and got his medication right, the anaphylaxis stopped entirely. So, it appears that these were stress hives.
Now, most readers would know that a few months ago, we moved to a new town, still in the country. For my partner, this meant changing mental health providers. Of course, his old mental health team sent his files over to the new staff.
My partner met them for the first time last week. The mental health worker was lovely. She went over his files, and casually stated, ‘so it says here that you have encephalitic syndrome, caused by paint poisoning’. Obviously, she thought we must know. This gem of a statement was made at the very beginning of his treatment with the previous mental health team, two years ago.
Why then, are we only hearing about this two years later? The note was made by his psychiatrist, and one of my partner’s mental health workers used to take notes for him. My partner told this new worker that he knew nothing about this, and asked what it meant. His case worker didn’t have time to go into it, but mentioned that sometimes it can lead to Parkinson’s disease. Oh, goodie. She also told him that the files stated that he was supposed to be referred to a specialist in Sydney to be treated for this.
The blinding anger my partner and I felt that afternoon as we discussed it was overwhelming. Why would no one tell us this vital piece of information? Why was no attempt made to tell my partner about the specialist, much less get him there?
We’re going to go to our new GP today to try to get some answers and insight as to what we’re in for. As his carer, I feel like shit. I’m supposed to be his carer, for Christ’s sake! What if there were things we were meant to do during the last two years to help him, or preventive measures we could’ve taken?
Another reason we let go of his worker’s comp case, is because at the time, we didn’t have a lot of information to support our case. But do you think if we’d known about this, that it might’ve helped? Ya think??
I’ve spoken to my dad about the idea of re-opening the case, but he said it’s too late now. Too much time has passed.
So, although I’d accepted this new life of ours, this new discovery has brought back a lot of anger in me. Let’s look at it, shall we?
Because of dangerous working conditions, my partner has relinquished employment, which has always been something he’s highly valued. He’s lost the social side of seeing the same workmates everyday and being in a routine. He’s lost the ability to role model a good work ethic for our children. He’s lost the pride he had in his ability to provide for his family.
I was also doing some work at home with the same company. When I had work, it was good money. When my partner stopped working there, my work stopped there, too. So there’s two incomes, gone.
I had my own dreams and earning potential at the time, also. I was in the process of starting my own craft business. I was a huge modern cloth nappy user at the time, so I started planning my own cloth nappy and knitted nappy cover business, called ‘Fluffy Mall’ (in the cloth nappy community, a delivery of nappies was known as ‘fluffy mail’, and so this was a play on words).
It took a lot of time and money to get it going. I had difficulty getting stock made for the store, because I kept getting custom orders before I’d even opened the doors! I was incredibly passionate about my at-home business. But, once my partner had the poisoning, it became clear pretty early on that I just was not going to be running a business. I was too busy looking after my school aged daughter, our baby and toddler and my partner. Looking after my partner was the most demanding part.
I looked through my old Fluffy Mall flickr account, and found some of my old work. One bonus was that I accidentally stumbled upon some old baby photos! Who knew anger could acheive something useful?
My overall mood at the moment is that I’m tired. I’m tired of bosses who don’t provide safe work conditions. I’m tired of doctors who fob their patients off. I’m tired of sloppy practices in the mental health arena. I’m tired of our family making all the sacrifices, as these people continue to make a comfortable living.
I’m stressed, because my partner, who I should be providing care to, has been forced to care for me since I’ve been going through my own health issues.
I’m proud, because despite being sick myself, I’ve been helping to prepare my partner logistically and mentally for holding up the fort while my daughter and I go on a trip to Sydney, so she can compete in the Premier’s Spelling Bee at state level.
I’m proud, because despite all this shit my kids have been forced to contend with over the years, it hasn’t stopped them from being amazing people. From acheiving great things. It hasn’t turned them into victims.
I’m proud, because although as my partner’s carer, I have the ‘excuse’ to not work, I have re-enrolled at uni (I’d applied this time last year, but couldn’t study due to the house fire), and am determined to show my kids the importance of hard work, both physically and academically. I’m proud of having done freelance writing during some of the busiest and most stressful stages of my partner’s treatment. I will freely admit though, that since the fire, I haven’t even looked sideways at freelancing, so I’d like to get back into that, just so our kids can see one of us work.
As for my partner? He and I are busting our brains to think of strategies to get him into the workforce sometime in the future. I think that will take a very long time, though, and will depend a lot on how his health pans out.
Sometimes, you just need to get mad, then get on with it. I’ll see you when we get back.