Mar 18, 2022
25 mins read
Peter is horribly upset. I slept at his place last night and instead of leaving early as usual, I was around when he woke up. When he did he gave me a horrible look and stated, " You still here?"
I agreed. Then he started speaking about how isolated he felt.
"I have to go talk to my voices for consolation. Things are that bad. Good thing they are being nice to me."
So we started talking and it became apparent that although the parents have given him the house he is living in at a subsidized rent for the next ten years, he disliked our Father. I don't like my Father very much either. The money for Peter's house came about because of my Mother. As far as our Father is concerned all the money he and Mum had was to be spent on him going farming. He has an abrasive tongue, which he considers wit, but is mainly pointless blabber that has caused people quite some harm.
In Peter's case it was very disconcerting. As I pointed out before he likened Peter's intellect to that of a dogs and made some pointless comment about Peter being better off as an abortion. And this was in a period when Peter's voices were going off and on, his period of awakening from ten years of continual noise and confusion.
Now Peter feels more confused, saying I was also uncaring towards his predicament. He accused me of not being a schizophrenic, saying my voices only lasted six months. I asked him how long do you have to have voices to be classed as a schizophrenic, ten years? He said ten years. I suppose that after ten years of voices you have a right to be a little accusative towards others who have not suffered like you. But that is past the point. Of course none of my siblings were prepared to protect Peter and so the change in his life so that now he at least has a bed, a decent place to live and drugs that allow him to at least have some time away from the voices. Do I take responsibility for what has happened to Peter since I came back? To an extent I suppose. I am a firm believer that the squeaky wheel gets the most grease and I made a lot of noise concerning my family's treatment of Peter.
You die of Hodgkinsons disease usually by starving yourself to death. It's not a pleasant end. But after the first round of chemotherapy the oncologist was adamant that the chances of me still having cancer were extremely small. But to be on the safe side there were five more rounds of chemo to go through.
And to make life less pleasant, halfway through the chemo they took me off the mustard gas and put me on steroids. The steroids made me very sick, worse than mustard gas. Apart from the injections I also had to take pills every morning, which made me feel very sick. It was like taking poison.
It was during this period that I started getting hot flushes and feeling quite strange. I rang my oncologist to talk about it, and was told I was going through an artificial menopause due to the steroids.
I have not a lot of experience of the many pains and problems that women are subjected to, and having had the artificial menopause I am quite happy that I have not. Oddly enough, when I was going psychotic and had female voices in my head I also found that I had some sort of understanding of female love. It was very strange.
All during the experience of the chemo we had lots of friends visiting Peter and I. This was very important. Tony and Nev where constant and the best of companions. Isolation would have been horrible for the period of the chemotherapy.
The other thing I found very useful during the chemo was the offer from the asylum for me to do relaxation classes. This was a deceptively simple exercise, where you lay in a dark room listening to music as the coordinator of the group read out a relaxation text. This was very good.
Staff at the asylum tried to get me on other various programs, but I would turn up too sick to participate. So I sort of fell out of the system that normally goes on with the recent psychotic sufferer.
My brother, Matthew, and my sister Samantha finally paid me a visit, about a week after the chemo was over, and I was still feeling pretty ill. It was my birthday, however, and I made them welcome.
Matthew had a few drinks and told me I was a parasite. This was a bit hard to stomach after many months of chemo, none of which he had visited me for, but I let it slide. With two brothers who are schizophrenic, I have to forgive him a fair amount.
Peter and I went to a party at my brother's place recently. Peter hated it. He dislikes most of the family gatherings as he finds them too hypocritical. I think they are a cheap method to get food and drink. Which annoys my family no end.
As for the company, unlike Peter I have not lost ten years of my life to heavy medication. Although I have my own losses they are not that great in comparison. Our real friends now are a group of people much older than Peter and I, people who have been through a lot of life, unlike my parents or other siblings.
It must be one of the most monumental things I have ever known a person to go through. To wake up after ten years of heavy sedation and psychosis then try to be your identity. I am talking of Peter, of course, and his awakening.
I am fascinated by it. He is frustrated and taunted. Why doesn't he have a good job like his brother and sisters? What reason does there have to be that he has not had a sustained relationship with a partner? These questions revolve around Peter's mind consistently.
Peter has a number of talents. He restores furniture, a trade he learnt at an antique store before he went schizophrenic and they fired him. He can take the ugliest bits of furniture and turn them into wonderful pieces. He is also good at drawing, and hopes to become an artist.
I am impressed by Peters' paintings. They try and show the inner life that he cannot share with other people. He is, in fact, highly talented and when he did a course of industrial design, his lecturers were very proud of him, saying that he would at least be able to take over their jobs, if not become a well known designer in his own right.
Unfortunately the schizophrenia came in, and he found himself at the back of the classes listening to his own voices, and ended up barely scraping through the course.
So he is a very talented man who spends his life sitting on the sofa, apart from three hours a day when he goes cleaning at a local school.
As far as the designing of furniture, the painting and the antique restoration goes, he finds it very hard to become motivated.
But he is trying. Now he is on the aripiprazole he wants to get back and do all these things, and get himself out of this terrible rut he is in.
It was very strange at a family outing the other day. He came over to me, I was sitting away from the group, and said to me "These people are hypocrites", or words to that effect. As far as I could see they were a normal family talking about holidays and children. But for Peter this normality was difficult to handle. Was he jealous? I don't know, it is a very complex situation.
This book could be seen as a handbook on how to handle love, schizophrenia and cancer. Could it be seen as a book dealing with familiar relationships and especially relationships between brothers? Last night Peter got drunk as a lord, and since he didn't think anybody else was around he let the voices speak through his mouth. So I was lying in bed to be awakened by strange guttural cries from him. I think its quite funny, but for him, that is his life. All alone, drinking, and trying to come to terms with his voices.
So I cannot with any certainty tell you what Peter is thinking. I cannot tell you what schizophrenics are really going through because the experience is so bloody strange.
Sometimes Peter cracks me up. We have a mutual friend, Ian, who is a strong Buddhist, alternative freak. He reads books on compassion and spirituality constantly. He believes he can help Peter and initiates discussion with Peter on compassion and spirituality. Peter, on the other hand, truly believes the spirits are talking to him.
Therefore discussions occur. And in those discussions Ian will set up a hypothesis on how beauty and spirituality works. Ian has worked at this. Many hours spent in meditation and study of spiritual works. Peter just agrees or disagrees depending on what he thinks the spirits have told him.
But it is not so simple. Peter believes that the world has a spiritual element, which has a technology all to itself. This resides in coexistence with our world. There is no heaven and hell, just different houses run by different spirits. It sounds like a pantheon of Gods surround Peter in their own universes.
So all these other houses provide the spirits and suchlike for Peter's present reality. Though he is getting a bit more sceptical, I think there is still of lot of work to be done. But then again, who am I to pretend my hold on reality is so great? If Peter hears these spirits, and they seem real to him, then Peter has every right to believe in them.
Chemotherapy came and went. The final three months I would lay down a brew of beer the day before the chemo, spend the next two weeks as sick as a dog, then drink the beer for the next two weeks after that. The sound of the beer brewing a constant and fitful companion.
We did, however, have some beds instead of sleeping on the floor. This came about as my mother asked me if I wanted anything at the beginning of the chemo, and I said I really didn't want to die on the floor. The idea of that really pissed me off.
So Dad made two beds with our help. Probably the cheapest type of bed you can get, but at least it was a bed.
But most of my time was spent on the couch, always feeling sick, but working hard to hold the team together. Peter was a great companion during this terrible time, and if I ever needed to hear about something really weird I only had to ask him about the voices and what they where doing at the present time.
I was constantly visited by a variety of nurses from the asylum to keep an eye on me. This was successful in one way. With my parents and siblings, apart from Peter, ignoring my schizophrenia, it was at least a time I could talk to someone about what happened.
These discussions were a way for me to come to terms with very confusing and painful memories of loss and disorientation. I would rave on about my time in Kings Cross. This was important to me, trying to keep hold of a reality that had exploded in my face.
For the nurses it was pretty easy, just keeping someone on suicide watch, making sure I was not making plans to permanently leave the earth, or that I was not going psychotic.
The pain of the chemo was various. In my case because there were two distinct lots of drugs. The first lot, based on a mixture containing mustard gas, had an instantaneous hit. You had to sit on the couch for three hours as it dripped through you. After that I would come home and lay there with my joints aching. If that is how you die of chemical agents, it is pretty painful.
I don't really know how you get through pain. I had it with my bad back and chemo. I just sort of muddle my way through it.
As for the second round of chemo, which was based on steroids; it was worse.
The steroid round required me to take pills every morning that made me very sick. For fourteen days at a stretch, it was waking up to a poison that was self-administered. I didn't writhe in agony, but I felt sicker physically then any other period of my life.
But that seems in a way as not important when compared to the effect of full on psychosis. Pain is bad, but madness is worse. Pain has its purpose; the body is trying to heal itself. With psychosis, it was trying to destroy itself.
Pain, pain, pain. It has been a bit of a companion in my life, especially through depression. I am talking to people about writing about pain, how difficult it is to try and get some relative comparisons. You can say sick and lost and lonely, but that is all in the readers head. I try to keep my comparisons to with in the limited range that I know, rather than try and dream up some pretty words.
All through the chemotherapy I had only one comparison to the misery I suffered and that time was in my only year at a catholic school. That miserable place, run by a bunch of social-climbing drunken priests who appeared to positively enjoy the amount of persecution that went on. Went on till the year after I left, when a suicide was committed by some poor kid left to his own devices and the parents started asking questions.
So that is about the closest comparison I can give to how I felt.
And for the record, I did not at any time during my crisis decide to become Christian. In fact, I can remember the first day I was to have Chemo I stood at the door to the ward and decided that I was going through this alone.
Not that I have been very Christian, but to a lot of people this seems to be an important thing. I think they are fooling themselves, if there is a God it would be a lot weirder than we could possibly imagine, so prostrating yourself and asking for help seems to be a pretty dicey thing. Especially considering what had happened to me.
No, I went the way of the enlightenment and blamed the vagaries of nature. Blaming fate seems a little far-fetched as well. Like the concept of God, fate just seems a little too large an idea.
Quite frankly I wanted a helmet with the words," Although I walk through the valley of death, I fear no evil, as I am the meanest motherfucker there." Just like the helmets they had in Vietnam.
And why not? Life had bloody well crucified me. I felt like an animal caught between two spotlights.
So far I have barely introduced the reader to Jean, the schizophrenic woman I took pity on and allowed to stay at my flat. Who I threw out when I found she had wasted all her pension money.
She came back late one night about five days after I got her to leave, so I let her in to sleep. Actually I welcomed her, being a bit worried about her welfare, told her to have a shower and gave her a feed.
Some months after the chemo a trip to the oncologist did not go down well. I have some spots on my lungs, unlikely to be Hodgkinsons lymphoma, but possibly lung cancer, or some secondary cancer from the original.
It was a bad sign for the specialist was not his usually domineering self. He is, after all, God, as far as most of his clients are concerned. Usually we fight, as I am more worried about the schizophrenia than the cancer. Cancer can kill you, but schizophrenia makes your life a disaster.
Many things, of course, go through your mind when faced with this sort of news. First of all, it was not the first time I had been told I may have had cancer and in this case it had not even been confirmed. What may have been cancer was a small shadow on the x-ray, not more than six centimeters across. He pointed this out to me after I told him I was feeling very positive about this check-up and that I was sure I have not had a remission with the Hodgkinsons lymphoma.
With a flick of his pen he pointed out the shadow and said I would need to have a CAT scan. After this, the oncologist was pretty nonchalant, explaining it may be damage done by smoking and it was not showing the classic shape of a Hodgkinsons cancer. So I had to wait for the results.
I felt a bit put-off by the news. Not a real kick in the guts but certainly my life suddenly took on a slightly higher sense of reality.
Anyway, the results came through negative on both counts, the Hodgkinsons and the lung cancer. I thought they would; physically I felt fine.
So far I have no end point for this chronological story, but there is one. When I was in the asylum I asked," How long will this take?" The reply to which was about five years. Since it is my fortieth birthday next year, and that makes it five years since I had been incarcerated, this means that if I do not go psychotic by the end of next year I will have probably passed the danger point.
Maybe they tell everybody five years. I don't know, and probably will need to ask at the next appointment.
My appointments with the psychiatrist are three monthly now. I go in, say I am fine, and get given a script. I see a different psychiatrist every time. I think that seeing different psychiatrists means I am not considered a real problem.
I do not know that the five-year period ending means that the quantity of anti-psychotic medication I am taking will be reduced. With the experience of my brother as a guide nothing will happen unless I initiate it.
Maybe I will, maybe I won't. I see the oncologist again in two days, and that also has a five-year period where there are continual checks. So both problems seem to have an end point, which is the end of next year. By which time I hope to have finished this book.
But I am getting ahead of myself. After the chemo comes the recovery, then I will fill in the other years.
The first hesitant steps towards recovery involved contacting friends I had not talked to for one and half years. That was roughly the period between going psychotic and finishing the chemo, plus a couple of months on the end to get my chemo head sorted out.
Here is the first letter I sent.
Sorry I have not written to you earlier to apologise for my behaviour a couple of years ago, but things happens. When we last communicated I was raving, in fact I raved so much I ended up in the asylum back in Fremantle and it turned out I have a version of schizophrenia called schizoaffective. I am presently living with my schizophrenic brother, Peter.
My other surprising news came when I had left the asylum last year and they said 'check the bump on your neck'. I did. I ended up having chemotherapy for Hodgkinsons cancer. I managed to survive that too. The walk from the asylum to the cancer ward was not one of the best in my life. Interesting to note that the treatment for Hodgkinsons requires dosages of mustard gas. Being half psychotic and then injected with mustard gas for three months. Hmm. All I can say is that in my past life I hope I was truly very evil and had a great time.
Do you know how hard it is to compose a letter with that sort of news? But too more important things. Fremantle is pretty middle class these days. I blame silicon. All the interesting inner city areas that had draughty houses full of vermin have been siliconed up. Where does the bohemian go to live? I have to find out.
Otherwise this is four-wheel drive land. But the rents are so cheap. I am living in a flat for the same rent I paid for a hole in Sydney eight years ago.
Which is interesting. Here I am back where we started, living on the pension trying to write books. The whole Sydney saga is beginning to seem a bit like a dream. Here is far easier to live, as boring as it is. However I think I managed to live a pretty full life in Kings Cross. Berlin and I do not communicate anymore.
I tried to ring her after I was diagnosed with schizophrenia and received a message back telling me to go away. I have tried to contact her again for years. She never replies.
Living with Peter is all right. He has had a change of medication lately and a lot of his voices have subsided. He was on stuff that made him sleep 12 hours a day and kept him pretty doped up.
So at the age of thirty-two he has finally woken up, after ten years of psychosis. His first feeling was that he wanted the voices back. After that he became concerned that the rest of the family are financially doing quite well and he has nothing. Finally he decided that he was going to join the middle classes as fast as possible.
Personally I don't think the middle class is the answer for him. He has still a lot of problems, but he is painting and drawing well. A quiet life on the pension is probably what is going to happen.
I am working on two books, one about living up north, the other an autobiography of madness, which features living with Peter and living in Kings Cross. At least in that I can deal with the madness on my own terms, which is a lot easier than trying to deal with life. The other nice thing about writing is that it's about the only thing that has not been taken away from me. Also, I am good at it, which is emotionally very nourishing. Between the cancer, the side effects of chemo and the continuing mental instability, I don't even bother about thinking of getting back into society. I get up late, write, then drink till late at night. The weather's nice.
I think about going to live in Asia on the pension. It would be fun, however the need to have continual check ups at the hospital makes that a bit difficult. Maybe next year, if everything's all right I will go and live in China, somewhere in the hills where I can compose poetry and drink rice wine. Maybe get married and have many children or something.
Speaking of Chinese matters, when I was psychotic I got into my mind the saying that the Mandarin goes fishing when political events make his life intolerable. On the basis of that I would wander up to the top of Monument Hill (park next to my parents place) with a fishing rod and wave it around. Quite mad.
The only positive side of the whole thing is that I now know why I could never hold jobs or relationships together.
The problem with schizoaffective disease is that it can't be diagnosed until you finally have totally gone around the twist; otherwise you spend your life having ups and downs without any apparent meaning.
Life seems so unreal, I finally have depression and anxiety attacks. I mean, I used to have them but thought nothing of it. Basically if you drink or take enough drugs you can sort of ride it through. The other choice they have given me is the use of a drug that is used by epileptics and car crash victims, which seems a little over the top. I think I prefer to drink.
I hope you are doing well, we may not have achieved our youthful dreams, but what the heck, a lot of it was a lot of fun.
It took me about three days to write that letter. And it is to me one of the most, if not the most, important documents I have ever written. This was the beginning, the point of reaching out to friends and ex-lovers. Berlin refused to answer any of my notes or calls. I wrote her a letter as below;
Yet again I try to get in contact with you. Look at it from my point of view. I lost my wife to a mental illness and I would rather like her back. Especially now that I know what the illness is.
I am sorry I was so awful to you on the phone and in other ways. I just did not know what was happening. Interestingly enough, if I knew I was schizophrenic I would have had a lot more reason to stay with you.
I kept on having these niggling desires to be normal, not have a partner in the sex industry, return to Perth and settle with a family. Now I know its not really appropriate and I was better off with you for all the problems.
Which is a shame, I can see you being one of those single elder women in the Cross and I suppose I am projecting as you may well have another life partner, but I would like to have shared your life with you.
Life here is confrontational. You can't go back to being normal after so many years on the edge in the inner city.
My family thinks I reject them, I just don't really have anything to share with them. They are also finding it difficult to deal with another schizophrenic in the family. When there was only Peter it was rather seen as an aberration, but now there are two the genetic problems are to be faced. And there are grandchildren now, so there are problems with that. So I've been a bearer of bad news, unfortunately.
Anyway, I hope you are well and that one day you will contact me. I believe we had a pretty good time together, you certainly didn't suffer financially or otherwise. Hope to hear from you
You can't have everything. The shocking realisation that you have lost a wonderful partner has filled me with unhappiness since then.
In the times between the cancer and the schizophrenia I was visiting the hospital up to eight times a week. In fact medical appointments sometimes occurred that many times a week to well after a year from the end of the chemotherapy.
Humour is important. Humour; that is the way to get through it. For example the last two weeks were full of medical tests. It's been a while since it was so full on, and this little episode reminded me of what it was like.
For the tests I had my six-monthly CAT scan to see whether I had Hodgkinsons again, and I had a barium enema to do with some unexplained bleeding. I have had a tiring two weeks. Okay, I don't have Hodgkinsons, which is good to know, but the evasiveness of the CAT scan was no fun, and as for the barium enema, well, suffice to say I stood outside of the hospital in the pouring winter rain waiting for a lift from my father, when the enema decided to come out. That was the end of the two weeks of being poked, prodded and explored. Me standing in the rain with white shit pouring down my legs.
So, humour. And maybe a method of working out what's happening to you, as I do writing this book.
After the chemo I found that, luckily, I had an icebreaker for conversations, as a well-known singer, actress, and aspiring cultural icon by the name of Delta Goodrem had also been blessed with Hodgkinsons Lymphoma and so I was able to tell people I had a fashionable disease.
This done, I would try to introduce the subject of schizophrenia and cancer. I found it very difficult, at first, for I felt like some sort of freak. And I had a position on schizophrenia and cancer, which I felt needed to be discussed.
It was difficult to try and relate to people whose lives had not been through traumatic experience. And interestingly enough, I found people who had been through hard times often seemed to think they had a monopoly on unhappiness.
And other people would dismiss the difficulties of my life in preference for some other disaster. No, I haven't been through a concentration camp or lived through a horrible war, but I think psychosis over a long period is as bad as many of those experiences. It is an end point, the last refuge of the abused.
There has been research on the effects of war on soldiers, in fact they tend to go psychotic in the front line. It is very difficult to kill another person in cold blood, so soldiers come to terms with it through psychosis. So I went through the equivalent of a war in my head, and that's what it feels like.
This annoys my father who is a war history buff, mainly in the area of the First World War. Like my mother with her worship of the migrant experience he also argues that there are harder times. Not that I want to knock the hardship suffered by many fine people, but I should, somewhere, the right to say I have suffered.
Which is interesting, to be able to look at yourself objectively and consider that. So I write my book about it and try and come to terms with it that way.
To Be Continued......
Should you could share as well it would be appreciated. A coffee is always desired if you can afford.
Copyright Christopher Kennedy 2022