It would be wrong to say that last week was particularly hard for my husband – because in reality it was no different to most weeks. No different to most weeks dealing with a family member who is really sick and has no chance of being cured yet being no closer to death. Just sick. Stuck with paranoid schizophrenia.
I could see him at times buckling under the pressure. Feeling the weight of his brother on his shoulders, in his veins – coursing through everything he does. Feeling equal parts angered and repulsed by the illness at the same time as feeling huge love, compassion and sympathy.
This week his brother has called him or texted him at least 3 times a day. Like he always does. Some days it’s many more. That doesn’t sound too bad – hell there are thousands of people who would love so much contact with their family. But, the messages his brother leaves are often confused, always pleading and mostly heartbreaking.
Uncle Pencil (which is what I will call him for now) has no friends. Not even acquaintances. His days are empty and alone. He has very little reason to get out of bed in the morning. Bar phoning his brother (and sometimes his mother and father), Uncle Pencil has no real contact with the outside world. He comes over for dinner to our place or my sister once a week (my sister’s family treat him like one of their own) – that takes care of 4 hours, the other 164 hours of the week he’s alone. With the voices in his head.
These voices don’t make for very good company. They aren’t nurturing, they convince him things are wrong when they aren’t. They’re louder than we are – they’ve made him believe that he can’t communicate outside of his immediate family when all he wants to do is “fit in”.
He’s as sad as he is sick.
Last week I read an article about employing people with mental illness. All it took was the Twitter link to pique my interest. All Uncle Pencil wants is a job. He just wants to fit in – he wants to have people to talk to, to go to, he wants to feel a sense of worth. He wants a job. The article says:
“Mitchell, 38, suffers from bipolar disorder. He is also author of Bipolar: a path to acceptance, about his diagnosis of bipolar disorder, and how he learned to manage his illness. As a father of four, Mitchell wanted to show it’s possible to balance running a business with raising a family, all while managing his condition.
He says he would hire someone with a mental illness “as long as it is managed responsibly”. Mitchell believes: “It’s important for everyone to know that you can get there in the end and triumph over your mental illness.
When he has previously hired someone with a mental illness, he was proactive in supporting them. “On becoming aware of their illness I mentored them so that they could empower themselves to take the necessary action and ownership of their recovery plan,” he says.
I can almost guarantee you Mitchell would not hire my brother-in-law. Or he might. For a day. Uncle Pencil’s illness does not look pretty. It’s not something you “become aware of” over time. It’s there, it’s so much a part of him that it’s a part of his physicality. Last week he shaved his own head – just some parts of it, random spots on the top of his head. Even without the haircut he looks scary – but that’s mostly just because you can see his own fear coming through in his eyes.
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And his behaviour is well, it’s mad. He’s not dangerous and in fact he’s not scary (even though he looks it) he’s just not in touch with reality and following his train of thought is hard.
He manages his illness as responsibly as he can. He takes his medication, he tries to continue going to occupational therapy and support groups but often he gets there and runs away because he is so frightened.
Hiring someone with a mental illness like schizophrenia is not like hiring someone with depression or anxiety. Oh Uncle Pencil has those in spades – but he’s “mad”. Properly, distressingly, socially inappropriate and deluded
The article goes on to say
“Susan Bower, 41, owns Dressed for Success, a Brisbane-based property styling business. Like Mitchell, she would hire someone with a mental illness. “As a business owner that suffers from depression myself, I know that with treatment, people with mental illnesses can function just as well as anybody else.
“Mental illness is now emerging as a more common illness, so the likelihood of employing someone with a mental illness is much higher whether they disclose it or not.”
Uncle Pencil has no choice about disclosing his illness. It’s written on his face with the pain and fear he carries around Every. Single. Day. However forward thinking and benevolent and depressed and anxious Australian employers are, they are running a mile from people like Uncle Pencil.
I’m not having a go at employers, I’m certainly not having a go at Valerie Khoo who wrote the article because I applaud anyone who starts the conversation. I do want to applaud organisations like Each, Nova Employment , even the ridiculously under resourced Job Access but I know that Uncle Pencil is too sick to work and worse than that he’s too sick to stay at home alone all day.
For everyone who says they would not hesitate in employing someone with a mental illness, nothing would make me happier than introducing you to Uncle Pencil. Give me a call
I think that you can’t make a blanket statement about hiring people with mental illnesses. There are so many shades of gray covered by the heading “mental illness”. I wish Uncle Pencil only the best – he is lucky to have the support of you and the family.
I know that the last thing you probably want is unsolicited advice but this isn’t the kind that tells you to just buck up and deal with it. I’ve got a mental illness, and have been around a lot of people with mental illness (schizophrenia included) and one of the best things when I had no friends and ample time to myself was a community program. The one I was in was a cafe atmosphere, clients were encouraged to make friends, help cook, plan activities for the week and much more. Each Friday we had a BBQ where all of the clients helped out with preparation and cooking. I’m still in touch with some of the people I met through the one I attended and one of them is now my best friend. I’m not sure where you live but this is similar to the one I attended: http://www.fsg.org.au/
Thank you Tegan, happy for any advice I can get. I will check that out for sure
xxxxx
I had a beautiful uncle with schizophrenia. We were fortunate that we could (sort of) manage the illness with medication but I know how very very difficult that can be. There were trips to psych wards, most of us had the late calls, etc and it was hard to conceive of employment without taking into consideration what any future colleagues might have to deal with, let alone he himself. He was lucky to find a great companion in life, I think that made him happy so I’ll always be thankful for that. Much love to you and Uncle Pencil x
Thanks Carli. Wonderful that your uncle was able to find happiness xxx We live in hope!
One of my best friends has schizophrenia and it is a debilitating disease that get worse over time. As long as he is heavily medicated it is ok but he can’t go out in public places with too many people even with his medication. He is a good person but he has threatened myself and my family on a few occasions. It is such a scary disease because they can get so removed from reality and people can’t deal with it and turn the other way. I hope that Uncle Pencil and others like him may one day benefit from a cure for this extremely serious condition and that people like you continue to have the strength to love and support them.
This post makes me so sad Lana. Uncle Pencil sounds like he lives every day distressed and all that varies is the amount. He absolutely deserves to have a fulfilled life, it is just so heartbreaking he is too unwell to do so.
I really thought these days they had enough medication options to make a difference to schizophrenia sufferers. In saying that, I have been disappointed to find out that although I now take medication for Bipolar Disorder 2, I still suffer with symptoms. It affects my ability to sustain employment and although I don’t have the same degree of disability as Uncle Pencil, it is frustrating.
I did see patients with schizophrenia when I was in hospital and it is a whole different level of illness to what many of us suffer. I think although some employers are open to hiring people with a mental illness, it is a sad reality that practical considerations mean they don’t….or that some are just too unwell to try 🙁 Those who do tend to not disclose if they can and it doesn’t come to light until they suffer from a bad episode.
What a powerful piece Lana! Living with a family member with debilitating mental illness is like a heavy chain of responsibility, constantly around the necks of the extended family.
Thank you for sharing your story.