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Moving Forward

I have experienced schizophrenia in those close to me, over two generations.

From 1980 to 1984 as a girlfriend of a young partner who developed schizophrenia and later committed suicide, and fifteen years following that, as a mother of a child who developed psychosis.

First, let me explain Andy (whose birth name is Terry coincidently) was born on a First Nation reserve in Ontario, Canada. He was later adopted by a family who loved him when he was two years old.

This is a complicated story with political and cultural dimensions, so I will not tell it here. However, to fast-forward we met in high school, and I liked Andy immediately. He was sweet, funny, and considerate, but developed unusual and violent behaviours soon after we started dating. I had to stop seeing him—despite learning I was pregnant.

When our daughter was three Andy ended his life.

He really had a quite a painful experience with schizophrenia, which led to unimaginable crisis. I did too as a pregnant teen who went on to raise our baby alone, along with our families. In the 1980’s there was little assistance for families to learn about major psychoses, and cope with it. We all did the best we could though, and got through Andy’s suicide. Some of us better than others and each in our own way. Of course, memories are not easily erasable and sneak up on you when you least expect it. Trauma is like that, and I accept this because it is a reminder that tragedy does not direct my life anymore. I have healed by confronting the past in hindsight, and have happily moved on.

I am sure you can imagine when my daughter developed schizophrenia, I was afraid. Anxiety propelled me into action, and I sought help right away when she told me she was hearing voices. Luckily, I stumbled on a specialized program for youth experiencing first-episode psychosis. And I was able to do research on the internet. My daughter taught me to use the computer, thankfully. I remember clearly her patience helping me to turn the computer on and find information.

There were few resources on recovery from psychosis like in the past, so I studied basic building blocks of health.

Despite very little income, I then made sure my child had access to nutrition, vitamins, hobbies, and social activities that supported her health. I encouraged her to talk in her journals, to friends and to me. And I made sure to listen and learn about psychosis. Not about symptoms, but how the person who I loved most was experiencing schizophrenia.

It was this ‘figure-it-out-as-you-go’ learning where there were no rule books, which got us both through in the end. Together we worked out a multi-dimensional approach to coping with neuropsychiatric illness with success. This represented a break from the past and involved a huge sense of relief from fear and worry.

To be honest, my family journey was not easy for me. Clearly complicating matters, I was sick too. I do not talk about it much, but my daughter and I became ill around the same time with separate conditions. I developed seizures and was undergoing investigation into my health by neurologists and other physicians, while navigating care (and lack of it) in mental health care at the same time.

Without going into detail, I have a cluster of health related issues some major, but well under control (or cured) and others quite minor. It is vital for people to know, this compounded social problems in my family. We overcame these relatively well all things considered. Still, families need help for complex problems – is my take home message. If not, we are at risk for economic marginalization and social isolation.

I would like to say to families, I managed to cope with psychotic illness and related complications, since I am strong – as I mentioned in the film. You are too. It is important to know that even if you do not believe it sometimes. As a caveat, my strength came from turning to others for support. When I was ready at any given moment in my journey I reached out to health professionals, other families, and friends when my daughter was recovering from schizophrenia. I broke through stigma and found comfort and wisdom in families, particularly. I understood social connectivity was essential for my health and well-being from my experience with Andy. I knew I could not go through psychosis alone again without emotional and social support and care.

In the documentary it is not captured, but I addressed issues in faith communities in my interview. I would like to say I grew up in a closed Scandinavian religious sect.

There is a whole history there, but here I would just like to say it was necessary for me to connect with people in the community. Over the years, this meant reaching out to various people for support. I mention this, since some people are faced with opposing families and traditions to get the support they need. I want to pass along reaching out worked well for me, and I value all help. I learned family support comes from many places, one of which is this on-line resource.

I engaged in projects that empowered me as well.

A couple of years ago that entailed going back to school part-time to get my honours diploma. It was important for me not to let illness dominate my whole life.

As a way of fighting social dimensions of schizophrenia, I gave it no more space than was necessary. Sometimes health issues took up a lot of physical and emotional room, but when they did not it was essential to nurture myself. For women especially this is important, because we can easily get left behind taking care of families. I learned we have to be active and take care of ourselves. Request others to help with that, however. I did, and many people are responsible for my success.

As final words, university has been a place of healing for me. I love learning and applied that passion to help my daughter and myself. We all have our own way to cope with life challenges. Education is mine and you will find yours.

In the end community support turned around a past tragedy in my family.

Social connectivity paved the way for renewal and change for both my daughter and me. I wanted to share that, and I wish for it to offer hope to families dealing with major psychoses.

For clinicians, academics, students, and others if I can ask do what you can to support people dealing with psychotic illness in ways that are possible for you. And thank you in advance.

Together, silence and inertia surrounding mental disorders can be overcome and we can explore new solutions to problems for people who have been medically, socially, and/or culturally marginalized. I look forward to doing that with you.

By Terry-Lee Marttinen

** Personal note –

As an update and to give you some background information about me, since my interview for The Family Guide to Mental Health Recovery I started MA studies at Oxford Brookes University in the UK.

I hope to do PhD research at Oxford Brookes based on human endogenous retrovirus (HERV-W family). I will look at the role of the flu and socio-economic factors in the perinatal period in pregnancy, and later development of schizophrenia in adolescents. This is part of general work on schizophrenia I am doing from a cross-cultural perspective.

It is all quite exciting for me, and you can learn more about my research on my blog. For an earlier project visit www.gethelpearly.com. The website was a labour of love developed in collaboration with youth with psychosis.

I am sharing this new phase in my life, since it represents change in my family advocacy and success at overcoming difficult challenges. I would like to talk a bit about that with families coping with major psychoses (and anyone else reading).

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