alan's picture
Losing Hope & Gaining Hope

The Challenge: 

The Question: 

How can we hold hope for others and ourselves?

The Problem: 

How can we keep mentally well and recover from mental health difficulties

The Solution: 

A mixture of support from our families, our friends and our peers can help us recover.

Channels: 

Mary Ellen Copeland says about hope that – People who experience mental health difficulties can get well, stay well and go on to meet their life dreams and goals.

I had a very happy childhood. I went to a rural all boys National School and was in a small class of 8 boys. My memories of that time are mostly of playing lots of sports and having the craic (Irish word for fun) with my fellow students. There was no bullying whatsoever, indeed bullying was something I didn’t know existed until I went to secondary school. This period in my life was the classic definition of Childhood Innocence.

From my first year in secondary school I was quite successful academically. Even though I was quite happy at school I found the weekends and holidays from school difficult. I would never see my classmates at the weekends or at Christmas, Easter or summer holidays. This was the start of the first time I ever felt feelings of depression. It was before the time of email, or mobile phones or social media. These times were times of complete and utter isolation from my friends. In these dismal days I used to study hard, write melancholic poetry and just postpone my happiness to when I would be finished my Leaving Cert (Irish exams) and be able to escape to a distant University. I did feel the presence of Hope. I felt I could suffer and suffer during those teenage years and that things would be better when I moved on to University. Where did my hope stem from? I was very academic and had dreams of becoming a mathematician or a poet or a political activist. I fantasised about being as prolific and brilliant as Yeats or Da Vinci.

When I was awarded a place in Engineering in Trinity I moved to Dublin. I was unhappy with my Engineering course and after a few weeks stopped attending and instead just led a party life, drinking for the first time. I started to feel very isolated and depressed but I didn’t tell my family or friends the true extent of my feelings.

I recall writing very black poetry at this time and feeling a strong sense of failure.  At that end of term I formally withdrew from the Engineering course and returned to home in Galway.

While I was in Dublin I met Deirdre who was studying the same course as me. From the first meeting we hit it off and developed a very strong platonic relationship. Even though we both would end up being diagnosed with the same bipolar label Deirdre and I never discussed mental health issues. We would go to pubs and gigs together and discuss music, poetry, philosophy and other topics. When I moved back to Galway we corresponded by snail mail, sending each other long handwritten letters and photocopies of poems and inspiring song lyrics. While we didn’t discuss depression or medication Deirdre and I both were able to express to each other how black our lives could feel. I guess you could say we held Hope for each other.

That Christmas my health deteriorated and I acquired glandular fever. After a short hospital stay I returned home to suffer months of crippling fatigue. I have battled with severe fatigue ever since.  I was ill for most of that year and was idle until I won a place in Information Technology in the University in Galway. Even though I was living at home I was very happy to attend this course. I found this University more relaxed and got on very well with my classmates. For some reason I suffered a breakdown during my final term of my degree. I didn’t tell friends or family but had meetings with some of the lecturers to see could I postpone my final exams.

I found my mind was racing and I felt I needed very little sleep. I also used alcohol to help me relax and unwind from the racing thoughts. Since my father was Bipolar my parents recognised these symptoms and persuaded me to see a G.P. to deal with them. After a short meeting with my family G.P. he recognised the classic symptoms of mania and set up an appointment to see a psychiatrist. That psychiatrist whom I saw for 13 years admitted me to hospital.

I suffer from Bipolar 1, meaning I suffer very high highs or mania, and very suicidal lows. When I get my highs medication seems to have very little effect on me. Instead it is a case of spending months in the safe confines of a hospital until the mania subsides. When I have my lows I get very suicidal and on two separate admissions for depression I have had to resort to Electroconvulsive Therapy (ECT) to treat my severe depression. There is quite a lot of controversy over ECT. I believe that it is a useful treatment of last resort. When a patient is in hospital and has been suicidal and catatonic with depression for many weeks with various medications being tried to no avail then I think ECT should be considered.

In the past 14 years since my first hospital admission I have had perhaps 4 or 5 admissions for mania and 2 or 3 for depression. Thankfully I have managed to avoid admission to hospital for the past 6 years except for six nights in summer last year.

Many of us have lost loved ones to suicide. The loss is devastating. I lost my father and my friend Deirdre to suicide. My father had been diagnosed with Bipolar and suffered from the condition from middle-age. Looking back I can see the times he was manic or high, singing loudly on the half hour drive to school where he taught every day. I vividly remember during my teenage years his first admission to psychiatric hospital my Dad weeping with happiness when he was released home on leave for a few days at Christmas.

Dad snapped one day in school and that was the end of his teaching career. From that point on he had two overdose attempts. He had gone undiagnosed for the physical illness Haemochromatosis for many years and this aggravated his severe arthritis. My father was in severe pain. Unfortunately his Consultant gave him the news that his arthritis was so severe that he wouldn’t be able to have necessary hip or knee replacements. From that point on my father lost all hope and was just biding his time, waiting for an opportunity to carry out his plans. The last time my father left psychiatric hospital for leave before his suicide he had a conversation with his physiatrist with our family present. The psychiatrist was trying to ascertain the risk of self-harm for my father when on home leave. My father said he wouldn’t try an overdose again, not saying he wouldn’t try another method. The psychiatrist said “Maybe it will be third time lucky Liam!” That statement for me sums up how detached some medical professionals can be, maybe it is how they protect themselves. After my father’s suicide things are a blur. It was as if all the happy memories were pulverized. Childhood milestones, holidays, special occasions all faded away. My only remaining image of my father is him with a pained ashen face, his eyes saying I can’t go on. You try to recall happy memories but all you can focus on is the finality of what happened.

When you are feeling bad it is not too difficult to let someone else know this, however when you have lost all hope and a torrent of negative thoughts is leading you to actively plan your demise then the real insidious nature of suicide rears its head and the last thing you will consider doing is letting someone know just how lost you feel.

My friend Deirdre was very successful academically but struggled feeling the engineering course she was doing was cold and soulless. In correspondence back and over we discussed how banal many of the subjects were and did she really want to end up as an engineer instead of something with more soul like a musician or writer. Deirdre took a year out in 3rd year and worked with IBM. She did well with IBM and returned to Trinity to finish her engineering course and did very well graduating with a first class honours degree. After graduating Deirdre and I didn’t stay in contact as much. A bit like my father I remember seeing her visit me when I was in the intensive unit in a psychiatric hospital in Dublin. I could tell she found it very hard to see me so unwell and I felt she must have wondered was there a risk of her becoming so unwell. Even though Deirdre had seen me in hospital she still never would discuss with me her own mental health or her hopes or fears. After many months of being out of contact with Deirdre I tried to get in touch with her. There was no reply to her phone or email address. Thinking she might have changed jobs I did an internet search for her name. To my horror I came across a Memorial website to Deirdre. Phoning her parents they confirmed the tragic news. Her father told me the story of Deirdre’s last days. Deirdre has been suffering low mood and nothing anybody could do seemed to help. Worried for her safely her parents asked her to come home to Wexford to visit them, otherwise they would have to insist on visiting her in Dublin. That weekend they did everything to try to lift her mood, visiting family and friends and going to shops and restaurants. However Deirdre went back to Dublin. That Monday her mother phoned her at lunch time. Deirdre said she was going to lunch with work colleagues. However the truth was Deirdre had taken a huge overdose of medication that morning, months’ worth of medication she has stopped taking. When her boyfriend returned home that evening Deirdre was dead. You can’t do an autopsy into someone’s state of mind. Deidre had a great job, a steady boyfriend and had just bought a new apartment.

Since my teenage years I have had swings from wildly optimistic grandiose hopes to rock bottom loss of all vestiges of hope. Suicidal ideation can prosper in the absence of hope. Luckily during many of the extreme lows I just try and go into hibernation mode, having a strong belief that if I just get through the oncoming weeks and months then things will have to improve.

On one occasion for some reason I lost this faith in the future. This wasn’t any kind of impulsive plan or drunken depression. Instead I gradually began to see the future without me as a part of it. I got rid of all my books, got rid of all my CDs and records. I closed bank accounts, I cancelled mailing lists. I booked an appointment with Free Legal Aid with the intention of creating a will.

I didn’t want to cause trouble so my plans revolved around how I could plan my demise with the minimum of pain or distress for my family and friends. I didn’t want my family to have to discover me or call emergency services. So, as I thought, logically, I should get into a body-bag beside the morgue in the hospital. I would be discovered by somebody used to dealing with corpses and it would be a short move into the morgue.

I find it hard to think back and know how I escaped from these suicidal plans. There is somehow Hope to be found at rock bottom depths of depression. From that lowest point I resolved to get well and stay well and to throw everything at the problem. I took personal responsibility for my mental health difficulties. Instead of just relying on medication to work on its own I added other tools to the mix. I did a long course of Cognitive Behavioral Therapy. This helped with the crippling anxiety and negative thoughts I suffered from. I began to get a lot more exercise into my life. I walk my dog every day and go to the gym regularly. I did the Wellness Recovery Action Plan (WRAP) course a few times until it became a regular part of my life and a great tool to help me every day. Supports are very important. I have always had great support from my family and friends. However it can sometimes be very difficult to discuss some of these topics with family and friends and I worry about burning them out by talking about the same old issues over and over. This is why I joined a mutual support mental health group called GROW.

I joined GROW in April 2013. My Cognitive Behavior Therapy nurse had recommended it and felt the structured approach to problem-solving would suit me. I have been a very regular attendee at meetings and have led the meetings a number of times. I also enjoyed attending the weekly coffee meetings and the regional conference. In GROW we believe in providing leadership by taking on even small responsibilities. I have a strong interest in Cinema so I took up the responsibility of organising a weekly cinema outing for GROW members. This was a great success and GROW members from all around the country were able to meet up to enjoy a regular night out. I was thrilled to be asked to present a leadership paper at the National Conference during my first year with GROW. My confidence in my abilities has increased and I gladly took on the role of Group Recorder when the position arose. Because of GROW I gained enough confidence to apply for a volunteering position with Age Action to teach IT to the over 55s.

I was the facilitator of my weekly GROW group for over two years and we hold Hope for each other. Last year I took up the opportunity of attending a creative writing class freely given by Galway writer Rita Ann Higgins primarily for GROW members. Our members got the chance to have their poems and short stories published in a booklet and I enjoyed reciting two of my poems at the GROW National Conference in Galway. During the past few years I have also been involved with Advancing Recovery in Ireland (ARI). Service users like myself have been working with HSE staff, and we have been planning the introduction of Recovery Colleges, Peer Support worker positions and Consumer Panels.

Soon after my initial diagnosis my psychiatrist encouraged me to get involved in mental health advocacy work. It would be 15 years later before I did this and found the benefits of it. Last year I completed 12 weeks of training with 4 hours per week work with the Irish Advocacy Network. I am now in the early stages of serving on one of these Consumer Panels as secretary, representing the views of service users in the Galway mental health area.

I am a co-founder of Cosáin. A wellness centre based in the city. Cosáin supports people with mental health challenges in identifying and pursuing their own pathways to recovery. Cosáin is peer led by people with their own experience of mental health challenges and recovery. We work in groups offering:

- Recovery education

- Recovery through creativity

- Peer support

This month I completed 7 days of training to be a WRAP facilitator. WRAP is a symptom monitoring, crisis planning and self-help mental health recovery programme. It was first developed by Mary Ellen Copeland in the States and was further developed by a group of people who experience mental health difficulties.

I would like to close by reflecting on an element of Recovery we define in GROW. The road to recovery is not always a smooth journey, even lately I have had very anxious thoughts which threaten to cause me to avoid or abandon enjoyable events I had planned to attend. However in GROW we say although “old irrational feelings may return from time to time” in Recovery “they do not change your thinking or behavior”.

To paraphrase Mary Ellen Copeland I feel that I have gotten well, I can stay well and I have confidence that I can go on to meet my life dreams and goals. I have Hope.

Thank you.

Comments

Hi alan,

Alex Levene's picture

Hi alan,

Thank you so much for sharing your experience and your story with us. I found your words enlightening and moving. It's great to see that you feel comfortable and confident sharing with us, and that what you are doing with Cosain, GROW and these other areas are not only helping you with the day-to-day steps that are required, but are also helping to improve the lives of others around you in your community.

Mental health has been an interesting topic on Edgeryders during OpenCare. We had/are having an discussion around MH and creativity here: https://edgeryders.eu/en/under-pressure-on-the-relationship-between-creativity-and-emotional this has also led to an interesting project: https://edgeryders.eu/en/the-shit-show-a-mental-health-awareness-campaign

It seems to me that many people are experiencing some of the stresses and strains of MH issues (to varying degrees and levels) and that many of us are missing the knowledge or practice to be able to work through these problems. Perhaps your training and experience can help guide the community towards some practical steps to help with improving MH for all of us.

My question to you

Noemi's picture

@alan, I'm very happy to meet you. I needed a few good hours to read and re-read your post. It's one of those things about life you can't pretend to understand unless you lived them out yourself. I will say that I am grateful for your openness and honesty. 

What would your advice be for people who witness their acquaintances struggling with a mental disease? Or seeing instability with/ without a medical diagnosis and not knowing what to do to be somehow useful? Because mental illness manifested in everyday lives,  outside hospital premises goes unacknowledged to a too great extent by our communities (maybe Ireland is more sensitive to this..), I imagine and even witnessed it once that the tendency is avoidance or not dealing  with it. If you're not a close friend or relative of someone fighting this, the simplest may be to walk away.. Which is a pity because you are part of the same community, and the more support is made available the better all our lives. At least this is on my mind right now. There must be some room between being  a patient and being an advocate or activist.. 

 

Helping others to heal ourselves

Alberto's picture

Hello @alan , and welcome. Thanks for your candor. Question:

Soon after my initial diagnosis my psychiatrist encouraged me to get involved in mental health advocacy work.

is this normal? I mean, is this recommended to many people that are diagnosed with mental health conditions?

Because if it is, this would make a fantastic pattern of what we call open care. What "open" is about, is that the separation between producers and consumers becomes blurred. In open source software, you help improving the software that you use instead of buying a commercial project. In mental health, you improve your own condition as a patient by becoming a healer yourself. This makes plenty of intuitive sense, and has the additional advantage that it has a very sustainable economic model. 

hi @alan

ybe's picture

thank you so much for sharing your inspiring story and ideas

I think your story reflect what I am trying to say with my traumatour: that to be really helpful we should break down the walls between professionals  patients/clients. Instead we should sit together and share what we know and feel and can do to get better and stay well - as fellow human beings. Holding on to hope together is so much easier dan trying to do that on your own...

I hope to meet you someday to practice the talking done here :-)

Stay safe,

Ybe

True Advocacy and Leadership

Sharon Kinnane's picture

Hi @alan ,thank you for sharing the most honest, stigma shattering and inspirational stories that I have ever heard.
The Cosáin Community Wellness that you have co- founded has a brilliant vision too and I imagine it will be  extremely successful.
I wish you every success with it and hope to cross paths again with you along the way.





 

thanks

alan's picture

Thanks Sharon for your encouraging words.

 

Hope to meet soon.

 

Alan.

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