Originally published as “Not Who They Knew” in the August 1999 issue of “Talkabout” magazine.
“Easygoing”, “Always Smiling”, “A Strong Shoulder to Lean on”, “Outgoing” may all be phrases that you are familiar with, especially if you have been pigeon-holed with them, as I have over the years. This is not to say I am not all these things, just that it puts a set of expectations upon my shoulders of how I will appear to people, irrespective of my true feelings.
Towards the end of 1996, at the end of chronic illness, I had a major emotional and psychological problem on my hands-ME. I had been on the DSP for three years, I was not exactly 100% healthy, but I was certainly no longer ill. My viral load maintained itself at undetectable, my CD 4’s were stable. Combination therapy had moved the word ‘death’ quite a way down my vocabulary list. I had always had a group of peers for support years ago, but HIV had decimated that group. I felt alone, outcast, surviving with nowhere to go. I could not see a future with me in it.
Depression is a hard word to define. Ask twenty people, get twenty different answers. To me, depression was not that dark, down twisting spiral into oblivion that it is for many. Nor was it an ongoing thing that kept re-occurring over time. It was a period of intense self-doubt, a losing of self-worth, and my own values as a functioning member of the community I moved in. I wanted so much to return to life, not the life I had known, but an entirely new one, free of all the dross I had been dragging around with me, the frustration of unfulfilled dreams, and directionless yearnings.
I started (unknown to all, except by those close to me) to have black, brooding moods, periods of long silence where I would not communicate with anyone. I had panic attacks in bed at night, and developed a fear of the dark. I could not stand to travel in the subway, and avoided crowds. I saw a black future of pensions, and struggling to get by, ageing on my own, loneliness, and pills, pills pills. I remember that late one day I really needed to talk to someone desperately. I rang two of our HIV counselling services, to be told that noone was available-would I like to make an appointment for another day! I ended up ringing a friend and frantically dumping on him.
I do not like antidepressants. This is a personal thing, I have nothing against them in general, nor the people who need to take them. I already shovel enough tablets down my throat (at the time of all this happening, around 300 per week), and have no desire to add to the load. I am also, by nature, one who is capable of intense self-analysis. I knew I had severe problems, I knew I needed help. But where to start?
The major problems, ones I have had all my life, were impatience, and wanting to do everything at once. I was aware that I needed counselling. This was not an easy self-admission. I had never believed in them. I rang Albion St, and arranged an appointment. The first meeting almost justified my misgivings about them, being a rushed affair whereby I felt time limitations were more important than my need to talk out issues. Following appointments were not so. I then did three of the beneficial things I have ever done with my life. I started volunteer work at the offices of PLWH/A (NSW) Inc, and started group work through both the ACON HIV Living Unit, and the Coleo Project. The ACON HIV Peer Support Group put me in contact with people going through similar experiences to mine. It gave me an outlet to voice my opinions, and to gain the advice and knowledge of other people to handle these panic situations. The Coleo project taught me the value of self-motivation, and the management of long-term treatment taking. They also encouraged me to take up writing, it being a good outlet for emotions-published or unpublished. This led to me joining the Positive Speakers Bureau, which has been, for me, one of life’s most fulfilling experiences.
In 2012, I had a bad experience after eye surgery at Royal Brisbane Hospital. I had some very serious surgery on my right eye…the left was blind (and is now a prosthetic)…and they fully covered the right eye after the operation. Coming out of vety heavy anesthesia, I thought I was blind, had a massive panic attack and attempted to pull the dressing off. A young Malaysian nurse, seeing this happening, started yelling at me, just making things worse. They eventually xalmed me down, and readjusted the dressing to admit some light, but the situation wasn’t good. At home, I started having attacks of anxiety & further panic attacks. I wasn’t sleeping well, was waking up with a start at around 4-5am, and had to get up as I couldn’t stand staying in bed. In bed, I couldn’t wear jewellery, or tee-shirts with tight necks – I felt they were choking me! This went on for about 6 weeks, and I was getting to the point of dispair. I contacted an Anglican support service (non religious, otherwise I wouldn’t have) on the advice if a HIV service. They, in turn, then kept in regular contact with me, helped via some counseling, and introduced me to Acceptance & Committment Therapy (ACT), and through the meditation sessions, and breathing, I eventually, over a couple of weeks, worked my way through it. I also put an official complaint into the hospital, and just doing something affirmative about the cause of this problem helped with the process of returning to where I had been before the operation.
Then, in early 2015, just after my return to Sydney from Brisbane, I had another period of both anxiety & panic attacks. 2014 had been a year from hell! I had a dreadful 60th birthday, followed by the breakdown of my 16 year relationship. Some financial oroblems followed on from that, then my ex-partners (we were clise friends after the breakup) parents both became serioysly ill; I had a very serious, debilitating dose of Shingles; Ampy, our longest surviving dog at that time, died; then in early 2015 I had my blind eye removed. This had all been bottled up, and on my return to Sydney – a move I really didn’t want to make – everything crashed in! The difficulty sleeping, getting moody, feeling that everything was getting on top of me, a severe drop in my libido, and Restless Leg Syndrome in bed at night all pointed to a return of the black dog. So off to the doctor, a psychological evaluation, and some antidepreeants & a drug to settle my restless legs. I went back to ACT, and within a fortnight we returned to a more normal state.
But I know the capacity for anxiety & panic attacks is there, and that I need to ensure that I deal with issues as they come along. I consider myself lucky in some respects that it never gets worse that this. I don’t get cyclic deep, dark depression, nor do I get pushed to the point of suicide…but it is still a disturbing, disorientating and horrible place to be. Depression in any ofits forms is not a pleasant place to be in.
This is a very different person sitting at this computer today. No longer scared of the future, or what it will hold. Confident that I have both a place, and direction to move in. I cannot give answers to others going through what St. Therese called ‘the Dark Night of the Soul’, except to hang on. There is, and must be, light at the end of the tunnel.
- Black Dog Institute https://www.blackdoginstitute.org.au
- Beyond Blue https://www.beyondblue.org.au
- Lifeline https://www.lifeline.org.au
Tim Alderman ©1999 (Revised 2017