Christina Patterson 'Outside the sky is blue'
Photo credit - Unsplash, Annie Spratt
This is a family memoir, a very touching and memorable one at that.
It encompasses so much, that I think it's fair to say; it has everything that being human can be; health and illness, success and disappointment, love and jealousy. This memoir reveals the difficulty that can often exist in sibling dynamics. It also highlights the 'eggshells' and the loss of 'hopes, dreams and expectations' that a serious mental health diagnosis can bring.
The author is Christina Patterson and she writes of the isolation that a chronic illness (Lupus) can bring. In fact health, or loss of health to be more accurate, features heavily in this book. Add to that heady mix; anxiety, bereavement and religion and you know it packs a punch. But towards the end of her book she also gives us; forgiveness, compassion, consideration and hope. Yes it's an emotional roller coaster this one - it's such an addictive read and her honesty makes this book seem like a friend - a close friend, one you really care about.
There can be many challenges when a sibling has a mental health condition; when one particular child, for whatever reason, receives more attention than another it unbalances everything, resulting sometimes in the other brother/s or sister/s feeling invisible & less worthy. "At church I started singing more loudly..hoping someone would notice my zeal. No one did and I got bored with it. Really, I just wanted to be seen." Christina
" I'm wearing a blue t-shirt with the word 'CHRISTINA' on it. I'm here, too. Don't look at her. Please don't look at her.
Yes, I'm fine. Honestly, I'm fine.
No, that's not my sister."
Christina refers to her personal experience of her sister Caroline's schizophrenia and the impact it had on her family as walking on 'eggshells': "This house had warmth and love and laughter, but this house could suddenly freeze. It wasn't the heating...It was the eggshells. You never knew who would tread on one, or what would happen when they did. It could be something my mother said, or something my father said, or something no-one said. It could be anything. Brush against a hairspring trigger and everything changed."
So often when we live in 'fight, flight & freeze' response mode we 'go somewhere else' - we disconnect in order to 'protect ' ourselves. Walking on eggshells brings on a state of anxiety; a state no-one wants to go to, a state that massively affects our wellbeing.
"I want to remember individual incidents, but I can't, because for so many years I have blocked them out." Christina
We can feel so alone, isolated & misunderstood around chronic illness: (Lupus diagnosis)
" I tried to keep smiling. My mother had taught me that it was important to keep smiling. But every night after I'd waved goodbye to him, I hauled myself up the stairs and howled as I collapsed on my bed."
"When my parents found me crying on the bench, they looked embarrassed. My father patted me on the shoulder and stared own at my suitcase. My mother handed me a carton of apple juice. When I said I didn't want it she started humming." Christina
Cristina kept the Lupus prognosis from her parents "I thought it was too much for my parents to have two daughters with an incurable disease." So many people 'withhold' information inorder to 'protect' others, this will be at the detriment to their own wellbeing and compound the isolation.
" There was no cure......The doctor told me I definitely had Lupus and I had it for life. He said I should read up on the disease, because it was important to know what to expect.."
" I wanted to move forward
and I wanted to walk away from the pain at home.
I wanted to walk away from the shame and the guilt,
but the pain that wracked my joints and made me feel as if my knees were being twisted,
wouldn't let me go."
On a personal level, I remember the day, like it was only yesterday, when a rheumatologist told me " You have Sjogren's Syndrome. There is nothing I can do for you. It may progress to rheumatoid arthritis, ME, Lupus etc. I suggest you go away and join a support group and get back in touch when you need help with the pain." Wow, I felt like a thunder bolt had hit me. I couldn't believe what he was saying, I couldn't believe the nonchalant tone he used, the sense of hopelessness and lack of support or encouragement. I was 32years old and he had given me an auto-immune diagnosis - one that felt like there was no hope.
Living with an invisible chronic illness: " If you're not using walking sticks or crutches, people don't understand why you sometimes have to sit on the floor in the queue in Safeways, because if you don't, you're going to scream." Christina
This resonates strongly with me, with my early experience of living with Fibromyalgia/CFS - an invisible debilitating health condition that is so very misunderstood. So many times I was so utterly exhausted all I wanted to do was sit or lie down.
On a professional level I believe there is a substantial link between pain and repressed anger, resentment, shame, jealousy and guilt too. Christina discovered first- hand how a row or a disagreement, would cause immense regret or embarrassment or shame and how those feelings would manifest in pain once again.
" Sorry, sorry, sorry, sorry. I wanted to prostrate myself on the ground. I phoned her later at home and said I was sorry again. She was gracious, but it was too late. Within three hours, I had pain in my left hand, my left ankle and my left knee and back." Christina
When we carry many years of unresolved grief, trauma or stress they layer and layer and layer until there is nowhere to go but overspill. The body, as in Cristina's case, said NO when her mouth couldn't or wouldn't;"My doctor and Mrs Jones (therapist) both agreed it was clear that the pain had been triggered by the row. My mother said that was ridiculous. "
Psychoanalyst Darian Leader: Yes, yes, yes!
" It has been established, 'that between 25 and 50 per cent of GP visits are for medically inexplicable complaints.'
"I had a lot of people with auto-immune disorders... it wasn't just the correlation between the emergence of the illness and an episode in their life that seemed charged. It was also the fact that talking about different things would generate improvements in their symptomology which were completely real..l thought if words and thought processes can actually have such a real effect on the tissues of the body, couldn't they have an effect on the illness in the first place?"
" Physical symptoms, he says, are 'are frequently a sign that something is being communicated, and this is perhaps clearest in skin and gastrointestinal disorders.... The 'famously enigmatic cycles of exacerbation and remission in autoimmune disorders' have been 'linked to psychological factors in countless studies' and particularly in lupus and other disease 'in which the immune system reacts against the body's own tissue'."
There are a myriad of treatments available that may help: Since my 30s I have been diagnosed with several auto-immune conditions and everyone of those followed challenging times; trauma, grief, stress. I know, for me, my body kept the score. I also know that talking to someone helped me get my health back. Iniitially I tried CBT (Cognitive Behaviour Therapy) which worked for a short while, but after 6 months I was back to square one. I also tried EDMR (Eye Movement Desensitization and Reprocessing) a form of psychotherapy, but that didn't work. For me it was the Grief Recovery Method, an educational loss-supporting programme - it was talk 'therapy' if you like. The change in my physical health was staggering - the change brought about by the awareness gained and the emotional release of years of unresolved grief/trauma was profound. This is why I work as an Advanced Grief Recovery Specialist delivering this life-changing programme, locally and thanks to online platforms, nationally and internationally too.
Christina found Reiki & accupuncture helped and later on talk therapy with counsellors and therapist brought about the lasting recovery. After seeing a counsellor a few times Christina had written down: "I am not allowed to be healthy, I am not allowed to be successful, I am not allowed to have a successful relationship, I am not allowed to find love." Wow, that is some list ; a list of forbidden positive experiences.
After acknowledging these things Christina felt something had changed, she felt stronger -emotionally more resilient? I love the way that she later acknowledges that it's time to tear up that paper and not be held to those learnt beliefs for a second longer.
We are all unique and individual so our experience of Mental Health will differ, for those with the diagnosis and also for friends and family.
"You have to learn how to manage this illness'... and this is not easy. It is like walking a tightrope all the time and you are under almost constant emotional pressure. There are so many emotions involved and the whole process is very much like bereavement, at least in its early stages. There is a great feeling of loss. Obviously the person suffering from schizophrenia has lost most, but for us ( the family) there was the loss of our daughter as she would have been, had she not been struck by this terrible illness. You gradually have to give up any thoughts of a normal life for her with independence, marriage, children, a career or even a job of any kind and just be grateful if she stays on an even keel." Taken from the diary of Christina's mum.
"It isn't fair, but....
It isn't fair to come back from a holiday when you're fourteen and believe that you have planted bombs... or when people on the TV start talking to you but you're not sure what they're saying....or you're not sure your mother is your real mother.. or you have to be careful because the people in the beds around you are planning to cut you up and turn you into sausage meat,. It isn't fair to be stuffed full of drugs that make you fat and spotty and dry-mouthed and slow, and which make your hands shake and your speech slurred, and discover that you have to take them for the rest of your life. It isn't fair."
"It wasn't her fault. It was not her fault that she felt envy. It was not my fault that I inspired it, but it took me long, long, long time to feel this in my bone." Christina
The connections between the body & the mind: Christina began therapy at the age of twenty-six.. " I didn't know anything about Freud or the connections between the body and mind. .. Freud wrote in 1905 ' all mental states, including those we usually regard as 'processes of thought' are to some degree 'affective' and not one of them is without its physical manifestation or is capable of modifying somatic process."
Whether you believe this to be true in part or in whole, I do believe, along with Christina, that the body often 'says' things that we can't say. I believe my fibromyalgia/CFS was my body's way of saying STOP, enough is enough. My body said No More - when my mind and mouth wouldn't. I believe Christina's Lupus diagnosis was too.
As I bring this review to an end I have a mix of feelings; a sense of sadness for everyone - for Caroline, Christina, Tom and their parents too. But I am also amazed, at everything this family did & tried to do. They strived for calmer days, relentlessly seeking the best treatments, earnestly seeking for a less stressful more 'normal' life for Caroline. There were times of struggle but also times of pure delight.
I love the place where Christina is now, the acceptance, the gratitude, the embracing of the here and now and the joy in what's to come. It's as if Christina has 'come home'. I am incredibly pleased, delighted actually, that with the help of Reiki, accupuncture and especially talk therapy, Christina's pain lifted; the physical and the emotional.
There is no doubt that Christina had to deal with so many challenges as a child, some were as a direct result of Caroline's schizophrenia but not all. Her pain, her anguish, her Lupus diagnosis, her cancer, her mastectomy, and so many funerals....... I close this book for the last time with a smile on my face. A heartbreaking and heart-warming memoir, which will leave a lasting impression on me, which right now has given me goose-bumps.
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