Loneliness

This world's a lonely place to walk around in,

This world's a place where life is hard to spend,

But we can help each-other live, Everyone can give

The simple gift, the words that lift, "Be My Friend"

Some days you wake up feeling nothing but fear,

Some days you wonder why God put you here,

Then all at once there comes a word, what was that you heard?

Why, someone said from Gilead, "Be My Friend"

This life may not bring much of comfort to you,

This world may lose it's touch of kindness too

And who's to blame? Why can't you see? Only you and me,

So if I may, I'd like to say, "Be My Friend"

I make no apology for starting this blog by quoting the lyric of David Ackles’ wonderful song “Be my Friend” as it has been one of my best friends since 1968 when I first heard it, and this blog is about loneliness, the painful, debilitating loneliness that comes with mental illness, either as a carer or sufferer.

I grew up in the fifties and sixties in a broken home, I loved the Beatles and Stones when they came along but was too young, chronologically and emotionally to be a part of the swinging sixties, although I loved the music and trappings. In 1967 however, a second, more exotic revolution overtook youth culture and I embraced it fully. The “Summer of Love”…the music, the art everything, about it. Except in my case, the love part, I found it difficult to form relationships, impossible to form relationships with girls under any circumstances.

The result of this was that I was going to live music events, films, poetry readings and the rest (and indeed football) as often as I could. I got to see many legendary musicians and poets, read to distraction but… always on my own. I rationalised it at the time that I was better off going on my own because I didn’t have to worry about whether someone else would want to go, to stay so late and all the rest… of course I realise that wasn’t true, it was because I couldn’t form relationships, friendships, didn’t know how to. I was lonely, I was also bullied through much of this. This loneliness however was nothing to what I felt as my wife’s mental illness grew in strength in recent times.

I did get out of the ‘loner’ role however, by meeting a couple of people at work who were more, shall we say, outgoing. I started to drink and use other stimulants and soon lost the diffidence, started to become a “leader of the pack”, able to talk to people, started to form relationships… of course this was all heightened by the stimulation I was using, and when I stopped, and cut down my drinking in 1975 I was sort of normal, but I still found it difficult to start new friendships, could always talk to people but could never instigate things, could’t say “how about going out for a pint” or whatever, though I always responded positively when I was asked.

I still fear rejection and still find it difficult to start new friendships unless I am asked… I rarely make friend request on facebook for fear of rejection.

That is all by way of a preamble…or probably a pre-ramble. Let’s get on with the connection to mental illness issues.

My wife suffered from clinical depression in 1984 and 2003, never fully recovering, and the things I want to record here were evident in both of these illnesses, but I will concentrate on the latest illness, which started in 2009.

2009 started quite optimistically, she was feeling ok despite losing her mum the previous years, but a number of incidents started to push her to the edge, the depression so long relatively in check erupted over a few days around our daughters wedding. Through July and August her condition deteriorated, I was working part time and whilst at work had to get my mum in to look after her, I had to be with her around the clock other than whilst at work.

What was the impact of this around the clock care over two months… my wife was unable to function normally, was withdrawn almost fully into herself, conversation was impossible, and she couldn’t concentrate enough to even watch the simplest stuff on tv.

For me, I was unable to really do what I would normally do, couldn’t chat with her, couldn’t read because I was too worried, couldn’t go out because I couldn’t leave her, she was worse in the evening and at night, often having catatonic seizures which I couldn’t ask anyone else to deal with, not that I was qualified. The NHS and Mental Health Service were not interested. So I couldn’t go out, the normal phone calls and emails asking me out for a beer were all greeted by “sorry, can’t make it”.

I was growing tired, the pressure was telling.

Eventually she was admitted to hospital, in the absence of any advice to the contrary I assumed that the admission would be a matter of weeks, or maybe even a couple of months. The hospital is only 10 minutes drive from home, and also on my route to and from work, so I got into the habit of going every day… either on the way home from work or early afternoon if not working.

Now, when you are visiting this often you have little energy or time for a social life, it is wearing and when you are getting home around 9:00, having a take away or ready meal your health is going to start deteriorating and are going to be losing energy and stamina at a rate of knots.

So, the remaining invitations I was getting were now drying up because people knew I was otherwise occupied, was not myself and had started to talk about mental illness as a main theme. I am lucky… I have a couple of very dear friends who I visit once a week, they live locally, and I was able to continue that relationship and keep my grip on reality.

Of course apart from that I was not able to go to the cinema, concerts, go out walking or do anything I would normally have done with my wife. I was becoming robotic… home, work, hospital, home, food, bit of stuff on computer bed, work… I was losing contact with people everywhere.

When I did speak to people my situation, more importantly my wife’s situation, was the only thing I knew about, the only thing I could talk about. People got bored, the last people I was in communication with were slowly disappearing, and I was getting more and more isolated. I have a wonderful supportive family, but you need something outside that as well, or am I being greedy?

I learned at work, or with the family, that you don’t have to be alone to be lonely. I had thought that the period in hospital was likely to be up to a couple of months, I wasn’t to know it was going to be three years and counting, indeed we now know it is for ever… It was necessary to reduce the number of visits, yet at a time that my wife was getting worse. This meant that to my other woes, I was feeling guilty about leaving her in hospital, which is was proving a soul destroying experience, which was in itself wearing.

I now had more time to go out, but by now I was exhausted, the remaining friends I had were slowly filtering away, but I had less inclination to go anywhere… I just need to rest and lick my wounds.

Time went on, I was getting more and more that I would not leave the house other than for work so I was seeing people less and less, I was conscious of the need to stop talking so much about mental health issues, but had no other conversation. Isolation.

This situation just grew and grew over the first two years, when I was getting no professional support from anywhere, didn’t think anyone else was in my situation and simply had no-one outside the immediate family to talk to, and of course those conversations were all about the same subject.

I felt so alone and isolated that my confidence crashed, I was absolutely on the edge, and was starting to have black thoughts, it seemed a good idea to meet the headlights coming the other way head on, it would solve a lot of my problems.

So, having now become totally isolated in my life as a result of my wife’s illness, I was feeling so lonely, so in need of a friend. My best friends had issues of their own and although they were supportive they had too much of their own to deal with.

So, things were at the bottom, I was feeling alone, even though I probably wasn’t. At least there was no-one in the darkest hours, no-one when I suddenly had a down period and desperately needed help.

It looks all bad, but for me, at least, there is some improvement. I became involved with Rethink, their Carer Support worker has been a true goddess and brought me back into the world, I have also met many people in a similar position to me, and I now work with them in a carer support group, I also do a great deal of mental health support on a voluntary basis.

But this is not necessarily the happy ending I would have liked. My wife will never leave hospital, I have started a new life that she is unaware of, a life of caring and supporting mainly in the mental health field, and have made many new acquaintances as a result. Sadly, for me, I am unable to convert these into friendships, because I don’t have the confidence or self esteem even now to say “fancy coming for a coffee and chat”, because I am terrified of rejection. I also feel guilty finding new friends when my wife can’t, I feel guilty having any sort of life away from her because I know that she can’t do that. I know that she would want me to, she would want me to live life properly, but I find it so difficult, feel so selfish and guilty about it.

The feelings have all been amplified by the loneliness and isolation, that has left me feeling so guilty about being able to carry on whilst my wife lives the life that fate has now given to her. She is incapable of getting washed, dressed, eating, communicating, watching tv… cant concentrate and has no memory. I don’t know if she is happy, or if that is a concept she understands now… it is so distressing and leaves me feeling so isolated and despairing.

Now, I sound really self-pitying, I know that things for my wife are bad beyond any recognition, none of us can start to imagine what life is like so locked in over three years, and potentially for another 30 years… it is beyond my worst nightmare, I have had it tough, but for her, so much worse.

What I am trying to say is really that mental illness destroys the sufferer, it destroys the carer. I don’t know if time will ease my feelings, but until it does I cannot have a fully realised future.

I have been called courageous, I don’t think I am, but I am damned if I am going to sit back and accept my condition, I intend to do all I can to rebuild a full life, relationships, self-respect but I will always fully support my wife in her condition.

It is so good these days to have the use of facebook and twitter, where you can find many other people in similar situations, and my experience is that there is a damn site more support among people using these outlets than you can ever get from the Mental Health Service, and I am delighted to be able to contribute to that network in my modest way

Of course loneliness isn’t only the preserve of the mental health sufferer and carer, old folk can suffer indescribable loneliness, they have seen their families and friends die around them, find it harder to get out, it takes all their concentration to do their errands and simply walk that they can shrink into their own world, isolated although in company.

Music has been so important through my life, and I will end with a quote from John Prine:

So if you're walking down the street sometime

And spot some hollow ancient eyes,

Please don't just pass 'em by and stare

As if you didn't care, say, "Hello in there, hello."

Please, lets talk to each other, be open about our feelings, and enjoy the support that is out there for us if we care to seek it. Maybe then we can overcome the stigma in these situations and help the most vulnerable people in our society to be as involved, and supported in life as they deserve to be.