A Piece of the Puzzle
If life was simple then we would all be high achievers and functioning adults living life to the full and happy. But life isn’t structured that way. It has obstacles and there’s always something round the corner waiting to trip us up. I guess for me the biggest hurdle I have faced is becoming mentally well.
It was a massive shock finding myself in a mental hospital at sixteen. I was frightened, anxious and confused to why I was there in first place. I couldn’t associate with the people in there. I thought I was different, but I wasn’t; we were just decent people struck down with unfortunate illnesses fighting our demons. But it was a starting point to unravel the years of mixed up feelings and emotions going round in my head.
I wanted to be liked; I wanted to be loved; I wanted to be myself! But how could I be this way? I’d been stripped of my liberty, my life, I was now considered different. I had become an illness! But I knew there was a person behind that illness trapped and fighting to come to the fore. I had to adjust my goals, take small steps, pick myself up and when it went wrong, found little support from the community I was once apart off. In fact I had become a harmless joke. I felt stigmatized and on the periphery; how do I accept my illness when society sees you as someone always in a state of psychosis?
I was introduced to the mental health system and was to become lost in it for years to come. I was going to day centres and support groups, surrounded by my peers who were getting as little out of this as myself, I felt. Although, it was a safe place and somewhere to be involved during the day, I wasn’t, as a teenager, interested in gardening. I needed more. I think I needed someone outside mental health or having walked towards recovery to take me under their wing and look past my illness and guide me through it. But at that time that wasn’t available on the NHS or an option in my life!
I think my saving graces have been my insight into myself. Trying to solve the puzzle that is my illness, maintaining HOPE without which you are lost and the fact I am an open book and would talk to anyone who would listen! You cannot run from yourself after all! I was like a jigsaw. I discovered pieces here and there through my experiences as I journeyed through my life. The more experiences I dare to face the more foundations you have to build on. I guess it’s what you do with the experiences that matters, you use them to rebuild yourself or you let them beat you up.
I am a house with each room decorated with different colours, but that house needed to change. Decorated differently, reinforced, so it could survive what the world had to throw at it. I don’t think there was any special key to open up the house to let the work begin, I just knew I could do more with my life (house) and most of all I wanted that life to improve. I stumbled through life for many years to come, saying to care co-ordinators I was fine, when clearly I wasn’t, but they didn’t see past the out layer and take the time to look inside.
I’m not saying all my care was bad by professional, because it wasn’t. I guess just none gained my trust or made me feel they could make a difference to my life at that time. My abiding memory of that period of my care was when I came out of hospital and a nurse gave me a cuddle and wished me well and said I’d be alright in the future. It’s the little things that you remember the selfless acts that can make a massive difference to a person’s care. It humanised me and shocked me when I was at an all-time low that someone could take the time to care. The world wasn’t all against me and it made me feel some worth and I believe that’s what real care should be about; a philosophy on how you in life and as professionals should practise care with sensitivity, awareness and compassionate understanding! When I look back I can still visualise the nurse’s actions and the feeling that gave me, something that will remain forever!
I came to live in Teesdale in the early nineties; unable to maintain eye contact, withdrawn, lost in my inadequate coping mechanisms (basically avoidance), depressed and led by my paranoid and intrusive thoughts or voices. My life wasn’t a life. It was about surviving, but things started to slowly change. I was given CBT which helped with my low level depression and my medication changed to something that suited my life, not something that just suppressed my illness. It became a tool to develop myself without the horrendous side effects. I’d been like a zombie; sleeping, putting on weight and basically unable to function through the never-ending bombardment of voices. I'd described it as being like a chemical lobotomy. It was the biggest catch 22 ever. The medication controlled my illness to an extent, but left me obese, slow-thinking, tired, impotent and cabbage-like. It brought an added complication to an already potent cocktail of dysfunction. How are you supposed to get a foothold on life when the odds are stacked against you?
But with the changes I was finally given choices, actively listened to, and informed at every stage given more than the half truths about my treatment. After all it’s my life and my body the medication was being administered too and I have that right! I was put in touch with Stonham, a charitable organization doing amazing work like so many charitable organizations. They got me a flat, which gave me independence and a little confidence. I could manage my own life, I was assigned a great support worker and from there I started to volunteer. I don’t think I’d be the person I am now without their initial caring, supportive and sensitive approach, giving a safe foundation to work from.
Volunteering with Stonham gave me structure, a place to make inevitable mistakes, direction and a feeling I can contribute, but it also gave me a chance to support my peers and discover myself finding answers through talking. Stonham value their volunteers, which in turn is repaid by the work we do to support the organisation. There is no tokenism. We are encouraged to challenge our coping mechanisms, given relevant education to develop ourselves as people and open doors to employment, if that’s the path we choose. They recognise the complexities of mental ill health and help you overcome the hurdles you are undoubtedly going to face without closing the door. They also recognise your strengths and gently enable you to develop them in order to regain ownership. This personal approach builds a sustainable connection of trust and mutual respect in order to move a person forwards, which isn’t lost like in many corporate organisations. People are valued. People come first!
I began to internet date, which has its own pitfalls for vulnerable people. I got married and was given a family life I craved. I met new people I'd have never have met normally, pushing me out of my comfort zone. The more boundaries I broke down, the better my mental state became and a stronger, more resilient person emerged.
I regained my physical fitness through cycling and my belief grew. I had setbacks during this time, like bankruptcy, followed by divorce and suicide attempts. But I got through them, which made me realise I wasn’t fragile and the events knocked me, but didn’t destroy me. I became an optimist!
My present care coordinators never-failing resolve to be there was a credit to him and the NHS. I was introduced by Stonham to Intentional Peer Support. I was a sceptic at first, but this innovative idea gave me a life skill and a structured approach on how to help, or counsel, my peers through my experiences making sense of my life (an outlet for my insight on my illness). I feel it’s not all text-book and lived experience is as valid an education as going to college or university and can make a massive impact on a sufferer’s journey because you have walked in their shoes. I’d love to see trained IPS workers working alongside care co-ordinators in the community. I think this would improve the care delivered by the health service and inspire recovery having lived experience working alongside professionals. You cannot stand still today and get lost in the health service, recovery has to be an option and people with mental illness can relate in a personal way, in my opinion, to those who can paint a picture through their insight as to how they may be feeling, because we both have lived a similar experience.
My efforts to be accepted and live a normal life beyond mental illness has come at a cost. I don’t see myself as mentally ill; I see myself as a person, a human being that needs to socialize with all sectors of the community, not just my peers. Finding that anchor in society has exposed my vulnerability, and left me wondering is being yourself enough, does my difference need to change to fit into society or does society need to change to recognise a person?
I strive to do the right thing, but it’s sometimes never enough to shake a label. It made me feel like a punch bag that once hit, swings back for yet another blow. I spent six years in a mostly dysfunctional relationship and became a victim of her abuse. I often question, “Why I stayed?” I think the reason was, however alone I felt in her company, I needed an identity. I needed to feel loved and have a tentative grip on so-called 'normality', but I was just a tool to be screwed over at her hands! I still don’t understand fully why she seemed to have had such a grip over me, knowing it was not a healthy situation to be around! I now struggle to believe sometimes, that I have something to offer, but I have to remain true to myself and if my identity is seen as “Peter the schizophrenic!” by people who don’t understand, then I will proudly wear their hat! To be ill is not to be humiliated or belittled!
Life experiences has have made me the person I am today and every negative experience I have negotiated in order to protect myself from hurt, has added another insight or perspective on myself and my world view. To extract positives from negative experiences is very tiring, but gives me another tool in my tool-bag to maintain a certain wellness. We are adults, but we suffer from mental ill health, but however difficult it is to not live the label, some things people need to see the complexities of living in that world before passing judgement on what they see. If our reactions or behaviour to situations were deemed to be always the correct, expected reaction as a person would perceive without mental ill health, then we probably wouldn’t have experienced mental illness. A qualification is not fixed in caring for someone, but a guide to creatively adapt, to develop a unique life.
I look for belief from the NHS to protect my wellbeing, but also to be a safe haven to be understood and guided through the minefield of letting go and becoming an independent adult. There is no blueprint for recovery in mental ill health, but each crisis needs the same depth of care as the inevitable one to follow. The same imagination, dedication, adaptability and creativity in getting the best possible outcome for an individual’s prognosis, because that person suffering could quite easily of been substituted by you or your loved one. Apathy cannot be a substitute or an excuse to undervalue the pain or difference of mental instability and trust is built on being there when the odds look stacked against you and others walk away, you remain pushing to open doors seized by life’s experiences. To try to make a difference is an act of understanding and to be there for someone regardless is an act of faith.
Strength comes from a positive perspective and hope, not reacting and becoming your negative experience. Life’s knowledge is your power, use it to shine a light on life! We need, I believe, as service users to recognise the person we would like to become and work on our strengths, painting a picture of our recovery and making it come alive and speak!