Saturday 25 February 2023

Call for Submissions: Hope for Troubled Minds: Letters Between Those With Brain Illnesses and Our Loved Ones

I had the pleasure to be contacted recently by Tony Roberts, Chief Shepherd of Delight in Disorder Ministries and author of When Despair Meets Delight. He invited me to contribute to an upcoming book, Hope for Troubled Minds: Letters Between Those With Brain Illnesses and Our Loved Ones. This interested me because the topic and message fit so well with what Fran and I share in our books and here on our blog. I also love the open letter format, and posted a selection of open letters here last year.

At Tony’s request, I’m delighted to share the details of the book and extend the invitation to contribute. If you’re interested or would like to know more about the project, get in touch with Tony at the details shown below. Closing date for submissions is June 1, 2023.


Hope for Troubled Minds: Letters Between Those With Brain Illnesses and Our Loved Ones

At 8 you started hearing voices. We took you to a doctor who put you on medicine, but your depression plunged. In Middle School, you started drugs to self-medicate and later alcohol. At 15 you were diagnosed with Schizoaffective Disorder. The voices, paranoia, seeing things and violence has been too much to endure, but my love for you has not stopped. You hit the walls causing holes and break my dishes, but then you apologize and my heart melts. You can dance and tell jokes that draw me in. I love to hear you tell me the latest thing you heard in a movie or documentary. I love you more than you will ever know.

— Angie C.

Dear Fellow Advocate,

You are invited to submit a letter for inclusion in Hope for Troubled Minds: Letters Between Those With Brain Illnesses and Our Loved Ones. This anthology of letters and photos will serve to celebrate our humanity and contribute to advocating for those often counted as “the least of the least,” those with brain illnesses such as schizophrenia, bipolar, schizoaffective disorder, and major depression.

Your letter expressing love for care and gratitude for life in spite of what can be debilitating brain illnesses should be directly addressed to your loved one. Speak from the heart. The letter can be up to 1,000 words in length, and names may be kept anonymous or under a pen name if you prefer.

Some example letters can be found here and here.

The book will be published by Delight in Disorder Ministries, with all proceeds above cost being equally distributed to the National Alliance on Mental Illness (NAMI), the Treatment Advocacy Center (TAC), and Delight in Disorder Ministries.

Letters will be accepted until June 1, 2023.

Use this Letter Submission Form, or e-mail Tony Roberts directly at tony[at]delightindisorder.org with your contact information and letter.

 

Wednesday 22 February 2023

Where There's Hope There's Life

But where there’s hope, there’s life. It fills us with fresh courage and makes us strong again. (Anne Frank)

I wanted to write something that might inspire hope, but things kept getting in the way.

I wanted to write about how it feels as a “well one” — carer to my best friend who lives with bipolar disorder — to be accepted in the mental health community, but then some people rejected me cos I don’t have a diagnosis and only people with a diagnosis can understand.

I wanted to write about how much I learn from my friends about the realities of living with mental illness, but then sometimes it feels like I’m learning at their expense.

I took the letters of the word HOPE, and came up with loads of great words to write about. But it ended up sounding trite and contrived. No good at all. Not remotely hope inspiring.

I put it aside for a few days, waiting for inspiration. Another couple of false starts, a few hundred words written, changed, scrapped. I decided to let it go. I gave up. It was only a dumb writing prompt. Whatever I wrote wouldn’t be good enough. What was the point anyway?

But then I thought of all those people I know, and all those people I don’t know, who don’t have the luxury of putting things aside just cos it got hard or they don’t know what to do and why the hell bother anyway cos what’s the point nothing will ever be good enough.

People for whom hope isn’t a writing exercise or a dumb slogan or a way to impress others with their compassion. It’s a daily reality. It’s a daily slog. It’s a matter of life and death. Really, sometimes it is, and even when it isn’t it can feel that way and sometimes you can be so close to the edge of despair that the slightest thing, a hasty word from a friend who doesn’t get it or one more funny look or argument or maybe not even having someone there you can argue with can be almost too much but somehow you find a way through. Colouring books or virtual tea parties with friends online. Or reaching out to help someone else even though your pain isn’t any less than theirs. Or distraction. Or chocolate or meds or therapy or a blanket fort or a Skype call or just about anything, whatever it takes.

And then you do it all again tomorrow even though it’s hard and no one seems to understand except those few who do.

And you find, somewhere, somehow, a chink of light in the darkness and by living it, by simply being who you are, you share that little light on.

And that gives me hope. You give me hope.

 

Photo by Sebastian Herrmann at Unsplash.

 

Wednesday 15 February 2023

The Fog Has Lifted: My Journey With Bipolar Disorder

By Christine Roberts

My first “visit” to a mental hospital was when I was seventeen and a half years old. I didn’t know then, but I was experiencing my first bipolar mania/manic episode. I had noticed something different about me when I was about thirteen, but couldn’t put my finger on it until much later on down the road. I was unaware for years and years of further “visits” to mental hospitals, numerous doctors, nurses, and medications.

I finally got a diagnosis of something called Bipolar Disorder / Manic Phase when I was thirty-four or thirty-five. I was so glad that there was finally a name to what was going on in my whole life pretty much to that point. My latest diagnosis as of about sixty-four is Bipolar Disorder I with psychotic features. These include delusions, hallucinations, hypomania, and such during the mania/manic episodes.

Now I had a name, but didn’t really know what that meant until my case manager at the time explained it to me with an illustration. I kind of knew what he was saying to me, but unless you are aware of something you don’t really understand. I had other doctors outside of the hospital that I figured couldn’t help me if they didn’t know what it was either, so I decided to do my own research. That took roughly ten years to put together.

All this time I was plugging along and I was getting it together little by little after each manic/mania episode, which was through experience, input by other people, and of my own understanding of this Bipolar Disorder.

It wasn’t until I was about fifty-seven, forty years after my first horrendous manic/mania episode, that with a med adjustment and I believe my own understanding at that time, I realized that I was not experiencing mania and/or being manic like 24/7 plus periodic mania episodes.

This was quite an enlightenment! I could see! A clear mind/conscious, you might put it. I now can think straight like I could before the manic/mania episodes started and the continual manic/mania fog began.

It’s now been about seven years since the “fog” lifted and I can see from a new perspective. It’s like a new me. I just kept on going. I used to think nobody can help me if they don’t know, so I’ll wait and figure it out by myself. I have to admit though, it took lots of little pieces to come together; my own experience, other people, and a correct combination of med(s) for this to happen.

There is a difference between having mania and/or manic state of mind and experiencing a manic/mania episode. I still have the mania/manic episodes periodically, but not the “fog” all the time along with them. I only experience the psychotic features during a manic/mania episode not outside of them and no “fog” outside of them either.

I have a theory about what the manic/mania fog consist of, but I’ll have to do further research. I’m thinking it has to do with the Bipolar Disorder symptoms that come along with having the disorder. An elder doctor of mine of the past told me they, meaning the medical field I take it, thought people were born with it and you had the bipolar characteristics, which are different than the mania/manic symptoms.

I had forgotten what being me was like and now I’m me again — and then some! By that I mean the me before that first “visit” to the mental hospital when I didn’t have the manic/mania “fog” or the “episodes”. Except I’m left with the horrid manic/mania episodes still that I didn’t have then.

It’s still a wonder to me that it all came about. There is always hope!

 

Image by Ricardo Gomez Angel at Unsplash.

 

Wednesday 8 February 2023

We Are All Made of Stories

All sorrows can be borne if you put them into a story or tell a story about them. (Stephen Grosz)

Inspired by a writing prompt to “tell the story of something that happened to you, but write it from a different perspective, or as fiction rather than fact” I recently shared a short story of mine on this blog. Originally written in 1999, Home Eleven is an urban fantasy based loosely on events and experiences at Newcastle’s Green Festival. You might wonder what relevance it has to our blog’s core themes of mental health and supportive friendships. To be honest, I wondered that myself.

I was persuaded by a conversation with my friend Roiben. I told her it felt a little like cheating to use a story I’d already written, especially one penned so long ago with no obvious connection to our blog’s topics. Roiben encouraged me to post the story nonetheless and use it as a jumping off point to discuss how it feels to reframe my lived experience as fiction. Her insight led to this article and got me thinking more generally about how we can use the raw material of our lives to educate, inform, encourage, and entertain.

Without giving away the story for anyone who hasn’t read it yet, Home Eleven is one of several tales written between 1996 and 2005 when I ran a fan group called Middle-earth Reunion (“The alternative Tolkien Society”). My articles and stories explored the consequences of asserting JRR Tolkien’s role as translator of authentic Middle-earth texts. In doing so, they skirted and deliberately blurred the boundary between fact and fiction.

Looking back, it’s clear to me that many of these stories reflect my yearning to belong and the sense I’ve always had of being on the outside of things. It’s a theme I’ve explored on this blog in articles including Belonging (Longing to Be), Like a Rootless Tree, and Impostor Syndrome, Self-Doubt, and Legitimacy in the Mental Health Arena. This rootlessness can feed loneliness, sadness, and low mood. I’ve discussed these feelings in posts such as It’s Not Enough, THIS BOY GETS SAD TOO, and Return to Down.

Although Home Eleven was written more than a decade before Fran and I met, there are some intriguing parallels. In the story, my first tentative conversations with Kai and Ellen occur at Newcastle’s Green Festival. Fran and I held our first voice call at the festival in 2011, a few weeks after we met online. The call was a great success, as I recorded in my diary.

I went to the Green Festival in Leazes Park. True to my word, I messaged Fran to ask if she still wanted to talk. After all my nervousness, I wasn’t scared at all, and we got on perfectly. We must have been talking for at least an hour. I don’t know how often we will talk like that, but we now know that we can.

Home Eleven ends with me saying goodbye to Ellen, with no suggestion that we’d ever meet again. (In fact, the story continued in Away from Home, founded in real-life weekend visits to an isolated cottage in Wales.)

I knew it was time to go. That whatever it was that had happened, had happened and was over. And yet I also knew something had changed for me. In an important way I had been allowed Inside something big and wonderful. Nothing could be quite the same again.

By coincidence (as they say) I was at the Green Festival again in June 2013 when I bade farewell to Fran before she set sail from New York to Hamburg. We planned to see each other when the ship berthed for a few hours at Southampton — our first opportunity to meet in person after two years of friendship — but there was a week of no contact first while she was at sea.

It seems, then, that my short story is more relevant to this blog’s themes of mental health and friendship than I realised. If fiction can be a valid and useful vehicle to examine, elaborate, and share my lived experience, what other stories might I write? What other events and experiences might I explore in this way?

There are a few candidates. I’ve already mentioned Away from Home, which continues the story of Ellen and Kai, and draws together a number of ideas I was working on at the time. Other stories are more problematic, in the sense that I’ve moved on a great deal since they were written; both as a person and as a writer. Some evidence aspects of my character and situation I’ve left behind or addressed in other ways.

My unpublished novella Playing at Darkness was inspired by the goths and other clans who gathered each Saturday in Hippy Green (Old Eldon Square) in my home city of Newcastle upon Tyne. There’s more than a little of the author in the story’s socially awkward hero Malcolm as he struggles to find somewhere he can belong and something he can believe in.

Long before he knew her name he had watched Stitch with her people in the town square beneath the window of his favourite cafe; had gone back each week to watch them gather while he lingered over his breakfast and endless top-up coffees.

He had felt drawn to the Gothrim. Like him they walked the shadowy border between Middle-earth and the real world but, far more than he did himself, they seemed to belong there, to know the rules.

By nature a loner Malcolm had gradually come to believe that his path had crossed theirs for a purpose and at last he had dared approach them with his new leather coat and the Tengwar tattoos still smarting about his wrist.

For all his faults, I still feel an affinity with Malcolm and the others he encounters in the story; not only Stitch but Halt, Devon, Ran, Shy Stephen, and the child Aleysha. They have a place in my heart and there may still be tales worth the telling.

Another story from those times, And Men Myrtles, explores duty, sacrifice, and loneliness, but also inappropriate sexual behaviour and assault. Its principal character William (Bill) Stokes is a complex but deeply flawed individual. He attains a degree of insight and wisdom, but it’s unclear how his fate would — or should — unwind had the story ended other than it does. I referenced the nobler aspects of Bill’s character in The Constant Gardener: How to Be Someone Your Friends Can Rely On.

These stories were all written decades ago. What’s stopping me writing something new that explores something that happened to me from a different perspective or as fiction? Are there events and experiences that might benefit from such an approach? I’ve shared open letters to various people including my mother, my father, and Fran, but the letter I wrote to myself comes closest to exploring my life from a different perspective.

Dear Marty,

We’ve known each other for a long time but I don’t think I’ve ever written you a letter before. I’ve thought of it a few times, even started once or twice. Maybe I won’t finish this letter either, or will decide not to send it after all. It’s scary to get real with someone you’ve known a long time but have never really been open with. But you know that, I think. It seems to me we would both benefit from some honest connection. So here goes.

A few topics suggest themselves, including loss, abandonment, bereavement, self-harm, and suicidality. As yet I’ve no clear idea how to treat these themes in other than a straightforward, factual, manner. It’s definitely something I’ll keep in mind, though.

Other Hands and Other Hearts

Before closing I want to mention with gratitude the creativity of other writers and artists we’ve featured on our blog.

Chapter and Verse: A Few Thoughts on Poetry, Creativity, and Mental Health

Warehousing Society’s Estranged: A Review of Matilda Windsor Is Coming Home, by Anne Goodwin

The darkness is coming, by Bernadette Barnes

I asked for help, by Charlotte Walker

Lady Zen: Quicksand

Untitled, by Brynn McCann

Under Ophelia, by Jen Evans

Two Poems by Kenneth J Cody

Poem for Marty, by Sarah Fader

Positivity Rules! The poetry of Jules Clare

Millions Like Me: A Conversation with John Medl

Over to You

In this article I’ve described a few of my short stories and how they relate to real events and experiences. Would you like more such stories, or do you prefer pieces written from a factual perspective?

More generally, what do you think about creative approaches to mental health topics, whether that’s movies, stage plays, music, poetry, or other artforms?

If you have something you’d like to contribute, or want to suggest another writer or artist for inclusion, please get in touch, either in the comments below or via our contact page.

 

Photo by S O C I A L . C U T at Unsplash.

 

Wednesday 1 February 2023

It's Time to Talk. But What If You Don't Want To?

Sometimes I don’t want to talk about it. Not to anyone. No one. No one at all. I just want to think about it on my own. Because it is mine. And no one else’s.

— Michael Rose

Falling this year on February 2, Time to Talk Day is one of several awareness days and events dedicated to countering the stigma surrounding mental health. We’re encouraged to open up to family, friends and colleagues about how we’re feeling, and to be there for others wanting to tell us how they’re doing.

These are laudable aims, and fully in keeping with the message Fran and I share in our book and in other writing here and elsewhere. We believe that keeping the channels of communication open is the single greatest contribution we can make to improving the acceptance of mental health issues, and keeping ourselves and those we love as well and as safe as possible.

But what if you don’t want to talk about what’s going on for you? What if our friends and loved ones don’t want to talk to us?

I consider myself a good listener and a supportive friend, but I’m far less adept at sharing my problems and issues. Even with people I trust and feel safe with, I find it hard to open up. It’s easier for me to express myself through my writing. Over the past year or so I’ve explored more of how I’ve been feeling in my weekly blog posts than ever before. Nevertheless, there are things I choose not to share publically. I discussed some of these in an article titled Write without Fear, Edit without Mercy: Eight Questions for the Honest Blogger. There are valid reasons for not sharing publically, of course. I recall mental health writer and coach Julie A. Fast counseling against writing about intensely personal issues and situations while you are in the middle of them. It’s wise advice.

A friend invited me recently to choose a song from my past that meant a great deal to me, and blog about how it made me feel. It was an invitation to be vulnerable and she offered to do the same, but I felt utterly unequal to the task. It wasn’t that I didn’t trust her. I did and do. More fundamentally, I realised that I didn’t want to go there, either publically in a blog post or even with her privately. As I explored my feelings about the request, I realised that part of the reason I didn’t want to share was that the memories were intensely personal, and that part of their value to me was precisely that they were private.

I think we’d all agree there are things we want to keep to ourselves but where do we draw the line? Who gets to decide what we “should” share, and what we’re permitted to keep private? And what about the people we trust? Aren’t we supposed to open up to those we hold closest and most dear? Isn’t that a good thing to do? A healthy thing?

The premise of Time to Talk Day and similar initiatives is that sharing is good for our mental health. It can help to talk things over, and it allows us to ask for support, or to offer support to those we care about. If we don’t know our loved one is struggling, how can we help? If we keep our struggles to ourselves, how can anyone help us?

Talking is only one way of handling things, though. It can be an important tool in our wellness toolbox, but it’s more important that we have tools — and use them — than feel we must ask for help every time we start to struggle. My Wellness Recovery Action Plan (WRAP) includes a number of strategies that work for me. Keeping in touch with friends is crucial to my wellbeing, but when I’m starting to struggle I’m more likely to go for a walk or explore what’s happening in my personal journal than discuss it all with friends. It’s good knowing there are people I can talk to, but that’s not always what I want or need to do.

There might be any number of reasons why we’re unwilling or unable to talk about what we’re going through. The same is true for our friends and loved ones. Unless we know the person well, those reasons may be unknown to us. And that’s okay. That has to be okay.

We might feel that what we’re going through is too dreadful, shocking, personal, embarrassing, or shameful to share with someone else. On the other hand, we might feel we’re stressing over something too mundane or unimportant to bring to someone else’s attention, especially if they’re struggling themselves. This is something I often feel. I hold back from sharing with others because I imagine they have enough to deal with, without me adding to their burdens.

If it’s something we’ve struggled with repeatedly or for a long time, we might feel our friends will be bored at hearing the same old story. We might be bored with it ourselves, or sick of talking about it. If we discussed it with friends in the past and nothing changed, or we’ve found ourselves back in the same situation, it might seem there’s no point going over the same ground again.

Initiatives such as Time to Talk Day can give the impression that asking for help or talking about our problems is easy. As I wrote in a post for Time to Talk Day 2022, “[o]pening up to someone can be a scary thing to do. It requires a great deal of trust, and there’s no guarantee of a helpful or supportive response.”

We might be too low in energy — physically, mentally or emotionally — to reach out, even when we recognise it would be helpful to do so. This can be the case if we’re depressed, but other conditions can leave us incapable of reaching out, including chronic insomnia, stress, anxiety, or fatigue. Someone who scarcely has the energy to keep going may lack the resources to risk opening up to the wrong person.

I’m used to processing things over long periods of time, either in my own head or in my personal journal. My thoughts and feelings can seem too complex, diffuse, or vague to put into words so that someone else can understand what’s going on for me. The very effort of attempting to do so can put me off trying, especially if the situation seems one without any specific resolution or fix.

Paradoxically, a fear of clarity can also hold us back. Telling someone our problems and issues makes them real. We can no longer deny or ignore them. It’s like Schrödinger opening the box and discovering whether the cat inside is alive or dead. Discussing a situation can crystallise it out in ways that might not have happened if we’d kept things to ourselves. It’s false — and unkind — to suggest that talking things over will always lead to a positive or desirable outcome.

Telling someone brings the other person into our situation, so that they’re now also involved. That can be helpful and reassuring, but it’s also scary. We may be unsure of their reaction. Will they understand, or at least hear us without judgment? Will they jump in with fixes, or bombard us with stories and advice based on their own experience, without checking if that’s what we want?

Can they handle what we tell them? Will they keep the information to themselves? Years ago, a friend told me she felt unsafe talking to me about how badly she was doing. She feared I’d escalate things by alerting her family or emergency services. I explored some of these topics previously in A Friend’s Guide to Secrets.

Even when we trust the person to handle what we tell them, we may worry it will change our relationship permanently, over what might be a temporary problem or situation. We can’t unsay what we have said. Sometimes, I prefer to keep things to myself and deal with them in my own way, in my own time, rather than risk damaging a friendship by opening up.

That brings up another issue, which is having the right person to talk to at a given moment. Depending on what is going on for me, I might feel able to talk to this person but not that person, not because I trust them differently but simply because one is more likely to understand or help me than the other.

It’s important to recognise that a situation or topic may be too personal or triggering for someone to discuss. I once needed to share my concern about a friend’s situation, but had two people tell me they were unable to hear it because it was too triggering for them. I understood completely, but it’s another aspect of the “talk to someone” message that — ironically — is rarely talked about.

All these considerations raise questions of honesty, openness, and trust. Don’t we have a responsibility to be honest about what we’re going through? If we don’t talk, how will anyone know what we need? How can they help make things better if they don’t know we’re suffering? How can we help other people if they won’t talk to us?

In encouraging our friends and loved ones to reach out, we need to avoid pushing them into sharing more than they want or feel able to. The line between encouragement and coersion is subtle and can become blurred. It’s right to want the people we care about to be okay. It’s also natural to want to feel we’re doing all we can to help. It’s easy to cross that line, however, and push people to seek help in ways that appear valid to us, but may be unhelpful or inappropriate to the person concerned.

I can only imagine the pain of losing a loved one to suicide, but I do know how it feels when friends have hurt themselves or put themselves at risk. It’s natural to wish we’d been able to do more, but it’s easy to slip into believing we could have stopped it happening if only we’d known. And from there it’s a small step to blaming them — implicitly or explicitly — for not telling us what was going on or allowing us to save them.

The conversations I’ve had over the years with Fran and others who know the reality of living with mental health issues, including suicidal ideation, lead me to believe that pressure and guilt-tripping is only ever counterproductive, and may be counterprotective. It certainly wouldn’t encourage me to open up, if I found myself in that kind of situation.

With all that said, you might wonder why I choose to mark Time to Talk Day at all, or why Fran and I promote the value and importance of keeping the channels of communicating open. Talking is important, whether it’s talking with friends and family, or with doctors, therapists, counsellors, and other professionals. Having someone there we can open up to when we need to is powerfully protective, as is holding space so that others feel safe sharing with us, when they choose to.

It’s important to recognise, though, that talking isn’t always enough, and isn’t always what we most need. I’d like the message of Time to Talk Day to include a reminder not to put undue pressure on people — ourselves included — to talk if they don’t want to. Nor is it helpful to judge people if they can’t, if they choose to talk to other people instead of us, or if they have other ways of handling what they’re going through.

I’m going to close with a conversation I had with one of my friends in March, which in many ways inspired this post.

Martin: My latest blog went up today, about keeping secrets. I was pondering what to write about next. Possibly about some of the reasons someone might not want to talk to friends and others about how they are doing or feeling.

Roiben: There are lots of those.

Martin: Maybe too many to explore in a blog post.

Roiben: No, it’s a great idea. Especially if you can group them to enable people to stop and think. That can be a good thing to do sometimes, from both sides. Because if they are a friend, then that stop and think may help the friendship develop.

Martin: You mean from the perspective of the person sharing (or not sharing) and the person who might be there to listen?

Roiben: Yes. From the side of the listening friend so they understand why they may not be the go-to person right now, and that the space needed doesn’t mean they are not a friend. Also from the side of the person who is struggling, to help them understand why they are finding it hard to open up, as sometimes the reasons are automatically implemented as a reflex. If both sides can understand and respect the other side then their friendship will be stronger and more enduring for it.

Martin: You have given me a new perspective. Thank you.

I’m grateful to Roiben and the many other people whose thoughts and insights have contributed to my understanding. It’s an important topic, even if it has taken me ten months to bring my treatment of it to fruition.

Further Reading

Here are links to a few related posts which discuss supportive friendships, communication, and openness (or the lack of it).

For more information about Time to Talk Day, check out the Time to Talk and Rethink Mental Illness websites. If you or someone you know is struggling right now, we list a number of international crisis and support lines on our resources page.

Over to You

In this article I’ve explored some of the reasons we might have for not talking about what’s going on for us. I’ve endeavoured to include the perspective of those on the outside, who are willing to listen and to help but who may not be aware of what’s going on.

Have you ever wanted to talk to someone but felt unable or unwilling to do so? What were your reasons and how did you resolve them, if you did? How do you feel if you realise someone you care about didn’t confide in you about how they were feeling? Where does the responsibility lie for taking care of ourselves and others?

Fran and I would love to hear from you, either in the comments below or via our contact page.

 

Photo by Priscilla Du Preez at Unsplash.