Q&A with Aimee Wilson, Founder of Shake My Hand, the Media Campaign for Survivors of Rape and Sexual Abuse

TW: Mention of rape and sexual abuse.

What is Shake My Hand?

Shake My Hand is a media campaign I have created with the goal and mission of increasing the number of Survivors of rape and sexual abuse who report their traumatic experiences. Currently, the statistics (courtesy of Rape Crisis England and Wales) show that sadly, five of six women who are raped don’t report it.

In a bid to achieve our goal, Shake My Hand will provide 1:1 peer support sessions with rape and sexual abuse Survivors. This would be with the hope that if a Survivor feels they have someone who truly understands how they’re feeling and what they’re going through, they’ll feel encouraged and reassured to a point where they might then be willing to report their experiences. We will also be offering to facilitate training packages, workshops, and awareness sessions on both rape and sexual abuse and mental health including suicide and self-harm, because we recognise that over 60% of all Survivors of rape and abuse have a mental health problem and over 10% attempt suicide (these statistics are also from Rape Crisis England and Wales).

Other work the Campaign will do is endorsing other organisations, charities, and signing and promoting petitions which are all relevant to our cause.

Where did the idea come from to create the campaign?

Well, I have personal experience of both rape and sexual abuse from when I was fifteen until sixteen and that obviously had a huge impact on my life and — more specifically — on my mental health. Having that experience, I’ve always wanted to do something in my life that helps others going through that same trauma, and I think I’ve tried to do that throughout my blogging career. However, a lot of my blog’s content has been centred around mental health more generally and with simple mentions of what I went through — occasionally, I have published pieces that have focused on advice around abuse; but they’ve been rare.

Then, as my blogging has led to me developing a huge interest and passion in the communications and marketing industry that has led to me gaining employment experience as well as qualifications in the field. Through doing that, for the last few months, I have wanted to do some sort of project that was more formal than a collaboration on my blog or a series of blog posts, but I struggled to find inspiration and actual ideas! Then, a girl I have followed on Twitter for a number of years was on TV discussing the fact that her abuser’s Lawyer treat her so poorly in the cross-examination when she took her abuser to court. It made me think about how many times a rape and/or sexual abuse survivor is asked why it took them “so long” to report their experiences and why everyone’s answer could very justifiably be “because we get treated like this when we do!” This frustration set off the distinct feeling that there must be something I could do about it and so — just like that — Shake My Hand was created!

What has been the most rewarding aspect of Shake My Hand so far?

Just, how much I’m enjoying the entire process of creating it and beginning to run it. So many people refer to me doing these things as “work” and I always say that yes, I suppose it is a bit of a job or a career, but I don’t feel like the things I actually do are “work” in terms of the fact I enjoy them so much. I think “work” has a negative connotation that you’re doing a task or assignment that you don’t really want to do but, for some reason, you’re compelled to do it anyway, and that can make you resentful and frustrated. These are things I definitely don’t experience — and haven’t experienced in creating Shake My Hand! I’ve loved the creative necessities to it too! It’s taken a lot of work on Canva and that’s a real favourite of mine for online creative tools, so I’ve really enjoyed using it so much and the amount I’ve done on it has meant I’ve actually learnt about a lot of functions on it that I haven’t needed to use until now, and I love learning new things!

Do you have a most memorable moment in the creation process?

Yes! Some people might deem it to be a bad element to find the most memorable, but I’ve found a lot of good in it too! So, I was creating — or trying to create! — the Facebook Cover Photo for the Campaign’s Facebook account (which you can visit here) on Canva. Now, if anyone is reading this and has never used Canva, on it, you can actually search for a “template” which is where you type in what you want to design, and Canva creates a blank (or you can choose from already-designed documents and edit them to your own criteria) piece for you that is of the correct sizing by width and height. (You can actually even — if the website doesn’t have a design of the size you require — create a custom size document.)

So, I had the exact correct size for a Facebook Cover Photo and yet when I would look at it once applied to the account, I found that it cropped the design and cut out a lot of details where I’d added the link for the website, the Campaign’s email address, and the taglines for its other social media accounts. I kept moving the text backwards and forwards and up and down and closer to the centre of the graphic so that there was no way it could be missed out! But then it started cropping the other side of the graphic! It took a good hour or so to realise it was because I was creating it on my laptop, but then looking at it on my phone! And I remembered that in creating my blog, you could alter the perspectives from which you were looking at it and that in doing that, it changed the appearance of the design. So, on realising this, I googled the size of a Facebook Cover Photo on an iPhone and used the “custom size” feature on Canva to create the graphic in that size because I believe that people are more likely to look at a website on their phone now rather than a computer or laptop so I’d rather it was the right size for the phone.

I’d had a Carer at my home the entire time this was going on and when I finally sussed it out; I said to her “have I been a drama queen saying this took forever?” And she was like; “no, you’ve been trying loads!” Then, I went to empty the Recycle Bin on my laptop and found I’d made FOURTEEN attempts! So yes, that was pretty memorable; but, like I said there was a good element to it too; and that was that I sussed it out in the end! I accomplished something and learnt something — which, to me, makes a really stressful situation really worthwhile, more memorable, and actually rewarding!

Have you faced any challenges in the creation process?

At first, I thought I’d take this question out because I thought “can anything beat that previous example?!” But then I thought of something else, and it’s not exactly one particular instance or action that was challenging: but more of a collection of them. So, a number of times, when I’ve spoken to people to tell them about the Campaign, I’ve always found myself talking about the fact that it’s definitely a lot more work than I had anticipated. There’s a lot more to it which I hadn’t thought of or considered. This doesn’t mean I regret the decision to create the Campaign, but I do wish I’d perhaps researched the idea more thoroughly first!

What advice would you give to someone thinking about starting a Media Campaign?

Based on that previous answer, my advice for someone would be to research their idea — not just to ensure they’re fully aware of the potential workload; but also, to ensure that their idea is original too! Having an Instagram account for the Campaign, has meant I’ve actually seen a ton of accounts from charities, support groups, well-known individuals, and organisations that are in some sort of support or awareness-raising for individuals who have experienced sexual abuse and rape. So, I think I’ve been incredibly lucky to have stumbled across a seeming gap in the market with Shake My Hand.

How will you balance your personal life and your blogging career with Shake My Hand?

I have no clue! Haha! I think that a lot of it is just going to be a “learn-as-I-go” type of process in that I’ll develop balancing acts with my commitments depending upon experiences with them. I think it’ll also really depend upon my calendar and my day-to-day and weekly schedule. I mean, if I have a ton of meetings one week — I’m also doing a lot of work with HumanKind in their merger with my support service provider, Richmond Fellowship — then other things might have to pass by and receive less focus. Or, if I’ve got a lot of free time and only support sessions, I will be able to dedicate more time to Shake My Hand. At the minute, I don’t want it to overtake, or be prioritised over, working on my blog content; I really want to do all I can to maintain them equally. But, I think it’s going to be something I learn along the way.

How has technology and the digital world played a role in Shake My Hand?

I think the most influential aspects of technology or the digital world there has been on Shake My Hand, have been Canva and social media — particularly Instagram. I think that the two have really had a big impact on the popularity and success of the Campaign in its early days. Canva has impacted the reception the Campaign has received — particularly in partnership and endorsement emails where the Campaign Strategy (designed completely through Canva) has been attached. Then, Instagram has impacted the audience that are hearing about the Campaign first and becoming its first support.

Looking ahead, what are your hopes and dreams for Shake My Hand?

I really hope that Shake My Hand becomes genuinely influential in the realm and industry that I want it to be relevant to. I hope that it helps at least one person and that it secures at least one endorsement from a well-known and personally meaningful organisation.

 

Further Reading

The Shake My Hand Campaign encourages survivors of rape and sexual abuse to report their experiences. For more information and to receive help and support:

Email: shakemyhandcampaign@outlook.com

Website: www.shakemyhandcampaign.com

Facebook: Shake My Hand Campaign

Twitter/X: @shakemyhanduk

Instagram: @shakemyhanduk

 

Wearing T-Shirts Is Not Enough

Monday was the start of Mental Health Awareness Week here in the UK. Dressing for my day working from home I picked through my collection of mental health t-shirts. Andy “Electroboy” Behrman’s KEEP TALKING ABOUT MENTAL HEALTH tee. Gabe Howard’s iconic :): shirt. One each from Bipolar UK, NAMI, No Stigmas, and Stigma Fighters. I chose the No Stigmas one for the start of the week.

I made myself a cup of coffee and turned on my work laptop. My new post for Mental Health Awareness Week would be going up on the work intranet. I’d have emails and calls through the week with the mental health and wellness team. Content and activities to plan. But what was I doing, really? Making a difference? Countering stigma? I suddenly felt deflated. Adrift. A fraud.

For a moment I was back thirty-five years or so at a CND rally in Hyde Park in London, taking in the sunshine and the music, eyeing up the women in their rainbow coloured tops and faded blue jeans, affronted by the guy on stage declaring loudly to the crowd “Wearing badges is not enough!” Funny the things that stick with you. I could almost hear him adding “— or bleedin’ t-shirts.”

I’m not completely clueless about mental illness and stigma. I’m primary caregiver and life-line to my best friend Fran, despite us living opposite sides of the Atlantic. I know what our relationship means to her. For the past nine years, I’ve been her constant companion as she’s ridden the tides of mania, depression, suicidal thinking, debilitating fatigue, and pain. I’ve seen what it costs her to navigate the stigma and ignorance of a society which places the highest regard on those who are able-bodied and — especially — able-minded. She’s told me many times she’s only alive today because of me being here. I take that at face value. It is powerful and deeply humbling.

But on the wider stage, what do I have to contribute? Diagnosis-free, with no direct experience of mental illness, trauma, or stigma to share, I stand on the other side of the well/ill divide. It’s never been an issue for me and Fran, but for some people I am “not mental enough” to help or understand. I get it. I’d probably feel the same way. What do I know, really?

Well or ill, it’s easy to feel frustrated and overwhelmed. A few years ago Fran posted daily on social media throughout May for mental health month, and I was with her day after day as she handled the fallout. The ones who, well-meaning or otherwise, failed to get what she — and many others — dared to share. The people on my social media feed who found it amusing to share jokes about waking up on a psychiatric ward. The trolling and abuse friends of ours have faced on their blogs and on social media.

Not that I always get it right, either. I’ve encountered discord recently with friends when discussion has faltered and connections have stretched to breaking point. At such times I doubt my ability to write, to find anything significant or “edgy” enough to write about. My work seems pale compared to that of others I know and admire, Fran included.

I thought back a few years to when I landed the opportunity to write a guest post for Wearable Therapy. The irony of writing for a socially aware clothing company wasn’t lost on me. I smiled. Maybe I had something to say after all. I pulled that guest post up and read it for the first time in years. It might have demoralised me further but for some reason it lifted me. I recalled how a friend had written expressing heartfelt gratitude to everyone — her professional team, family, and friends — who’d been there for her in recent days. My contribution had been modest enough, but I knew I was included in her thank you. I was tagged on a social media thread by someone I admire greatly and have often felt in awe of because of her ability to write eloquently and powerfully. Her message was deeply connecting and encouraging.

I thought back to other supportive messages Fran and I have received over the years from people who’ve told us they’ve been affected by our book and our story. It’s not an ego thing to recognise that what you are doing affects people’s lives, maybe even save lives.

Because it’s not always the “big” things that have the most impact. Like the random conversation I had years ago in a coffee bar that led me to a local literary event on the subject of physical and mental health. I met some great people that day, people who live their lives and share their stories with courage and passion. Or the chance comment on Facebook that lead to a lifetime, and life-changing, best friendship.

So I will go on. I will go on supporting Fran in all she does and sharing our story because the story of how a well one and an ill one manage their friendship needs to be heard. I will champion all who are doing their own amazing things. I will call out stigma and discrimination wherever I find it. And I will wear my t-shirts with pride. It isn’t enough, no. Not on its own. But it can be part of enough. Because you never know when a KEEP TALKING ABOUT MENTAL HEALTH shirt might spark a conversation; might give someone confidence and permission to open up or ask for help.

And I will keep challenging myself and connecting, living my life and speaking my truth as only I can, side by side with my best friend, shoulder to shoulder with all who are working and hoping and living toward the day when STIGMA IS NO MORE. Now that will be a t-shirt worth wearing.

 

Based on Wearing T-Shirts Is Not Enough, Stand Up : Speak Up, June 2016.

 

I Wasn't Disappointed in You When

I wasn’t disappointed in you when your weight went up because you ate all the girl scout cookies. Although maybe it seemed that way when I suggested you throw them away or gift them to someone next time, and lectured you about average daily calories. As though that would fix your relationship with your body.

I wasn’t disappointed in you when you told me you cut yourself. Although maybe it seemed that way when I said remember I’m here. Don’t ever feel you’d be a burden or that I’d be too busy or asleep. As though I can make the demons go away.

I wasn’t disappointed in you when you went back to sleep after our prearranged wake-up call. Although maybe it seemed that way when I started calling a second time or a third to make sure you were up. As though your day starts better in my hands.

I wasn’t disappointed in you when you told me there’s no hope, no job, no friends for you so why bother trying. Although maybe it seemed that way when I pushed suggestions in your face you’d tried a hundred times before. As though my blazing positivity could make a difference this time.

I wasn’t disappointed in you. But maybe you were. And I didn’t honour that. I didn’t allow breathing space for that.

I need to sit with this a while.
Breathe it in. And out again.
Because I’m disappointed in me.

 

What Does Having a Conversation about Mental Health Look Like? #TimeToTalkDay

Thursday February 7 2019 is #TimeToTalk Day, an annual event organised by Time to Change to focus attention on mental health. (Time to Change was formed in 2009 by MIND and Rethink Mental Illness, with the aim of reducing mental health-related stigma and discrimination.)

Some feel that awareness campaigns trivialise the lived experience of people with serious mental illness, giving the impression that talking to someone or going for a walk can fix things, or take the place of professional treatment and support. I wholeheartedly agree that a chat with a friend or a breath of fresh air is never going to cure anyone. But I do believe—as the following quotation from Time to Change makes clear—there is much we can do to lessen the burden of isolation and misunderstanding.

Conversations about mental health change lives.

At the moment, too many people with mental health problems are made to feel isolated, ashamed and worthless by other people’s reactions. But talking about mental health doesn’t need to be difficult. It can be as simple as making time to have a cup of tea or go for a walk, and listening to someone talk about how they feel. Being open about mental health and ready to listen can make a positive difference to someone’s life.

This is what Time to Talk Day is all about—giving us all the chance to talk and listen about mental health.

Having “a conversation about mental health” might sound daunting, but it simply means allowing someone to talk openly about what’s going on for them. It might be a face-to-face conversation, a phone or video call, or a conversation by e-mail, text (SMS), or instant messaging. Whatever works for you and the other person.

Whatever the channel, there are a few things that distinguish a supportive conversation from the normal everyday kind. I find the following reminders helpful.

Don’t interrupt. This is self-explanatory, but can be one of the hardest to remember. Let the other person share what they want to share, without giving in to the urge to interrupt with your own ideas, suggestions, and questions. I certainly need reminding of this one!

It’s their story, not yours. Don’t monopolise the conversation by recalling times you have been through what they are talking about. “I know just what you mean” is particularly unhelpful. No matter how similar your experiences might seem, their situation is uniquely theirs, and what worked—or didn’t work—for you might not be relevant to them at all. If you are asked for suggestions or advice, fair enough, but wait until you are asked.

Save your judgments for later. It’s hard to listen to someone without analysing and mentally judging what you are hearing. This isn’t wrong in itself—you might need to assess whether the person is in immediate danger, or in need of professional help—but beyond that, your internal dialogue only serves to distance you from what they are sharing with you.

You don’t have to fix everything. Depending on your relationship (partner, child, parent, family member, close friend, colleague, acquaintance, or stranger) you may be in a position to offer help, advice, or support. But it is not your responsibility to fix everything, so hold back with your suggestions unless they are asked for. On the other hand, don’t feel paralysed or useless if you can’t think of anything that could possibly help. If you are present and engaged, you are helping. Often, that is precisely—and all—that is needed. You’d be surprised how rare a gift holding space for someone can be. As Time to Change put it:

“It’s #TimeToTalk because if you say something, you realise how many people around you haven’t, and needed to”

But I’m Busy

We are all so busy these days. School, college, work, commuting, chores, children, our own issues and problems, fill our days—and often our nights too. When are we supposed to find time for all these conversations?

#TimeToTalk isn’t about blocking out chunks of “Mental Health Conversation Time” in your calendar—although it might involve committing to meet up for lunch with that friend you haven’t seen in a while, calling on a relative on your way home from work, or turning off the TV after dinner to talk with your partner or child. It’s about being open to what the other person wants to talk about, and not being scared if that includes their mental health, or that of someone they care about.

Think of the people you talk to already. The colleague who gives you a ride home. The person you speak to every Saturday in your favourite café. Social media and the internet mean you can connect with almost anyone, almost anywhere, at almost any time.

It’s Not All about Mental Health

You won’t always be “talking about mental health,” of course. Open conversations span the full gamut of topics: deep and trivial, funny and sad. But if they are genuine, they encompass whatever is going on for you and the other person, and often that does include some aspect of mental health. That said, if you are open to such conversations, you might find yourself having more and more of them. I consider it a privilege that people feel at ease talking with me about topics which so often are kept hidden, because they attract judgemental attitudes, stigma, and discrimination.

Balance and Boundaries

You can’t be there at all times for everyone, however. You are not a 24/7/365 crisis line. Aside from the dangers of burning yourself out, doing too much can lead to codependency, which is unhealthy for both you and the other person. Don’t take on too much, and pay attention to your own health—physical and mental. Remember that #TimeToTalk includes sharing your issues and concerns, as well as listening to those of others.

What Difference Can I Make, Really?

Fran and I believe passionately that all of us—you, me, everyone—can make a difference. Fran knows this first-hand, and I can do no better than close by sharing her words from the Epilogue to our book.

There are many like me who live in invisible institutions of stigma, shame, and silence, the walls built by others from without, or by ourselves from within. Dismantling these walls invites connection. Be the gum on someone’s shoe who has one foot inside and one foot outside. Stick around. It may not be easy but you can help someone make a life worth living. Maybe even save a life. One little bit by one little bit. A smile, a wink, a hello, a listening ear, a helping hand, a friendship all work together to interrupt the grasp of illness.

Be open and honest, with your friend and others you meet. Judge not, for misunderstandings abound. Acceptance, understanding, and kindness can pave another way. Let’s.

 

Things That Help

By Roiben

I can talk for a long time about my various conditions and disabilities and how they affect me. For the sake of those who do not know, I have Congenital Rubella Syndrome. This has led to a nice complicated list of conditions and disabilities including Type 1 Diabetes and mental illness.

In this article I am discussing the fact that I class myself as Deaf with a severe hearing loss, and the fact that I have a visual impairment. As a result of congenital cataracts I am completely blind in my left eye. My right eye does all of the work so is prone to getting tired quickly. I have diabetic retinopathy and astigmatism in my right eye as well.

I want to talk about five things that help me cope with these disabilities and get the best I can out of any given situation. Some are things I can do and some are things others can do to assist me. It is worth bearing in mind that disabilities are very individual and needs change from person to person. Some of these things are general and can be used across the board for people who have hearing loss or visual impairments. Others are individual to me and my experiences.

1. Lights, Camera, Action

I find good lighting helps in all cases. I need it in order to see properly. If it is dim or the light is not bright enough in a room, or a restaurant decides to dim their lights for “atmospheric” reasons, I will struggle to read text. I will also struggle to properly do things like cook and wash up. I remember in University Halls the light bulbs in the rooms were far too dim for me, so I had to have permission to have 100 watt bulbs put in.

In my flat now I have lots of smaller spot lights. These are great for ensuring there is even light across the whole of the flat, so I can see better regardless of where I chose to site myself. I often use a bright lamp and a magnifier with a light built into it for reading, especially labels and boxes for medications and food.

I also need good lighting in order to help with my hearing because I rely on lip-reading. I am one of the Deaf community who is able to lip-read, and not all of us can. However, it relies on being able to properly see the person’s lips and face. This means them not having windows or other major light-sources such as the sun behind them, and the room being generally well light and for that light to be consistent, not flickering or changing at all.

Because of this it is common for me to have to change where I am standing or sitting so that I can understand a conversation. It also means that when sitting at a circular table there will always be at least one person with a window behind them who I just cannot understand. It is also the reason I try to be the first to get into a meeting room or at a restaurant table so I can choose where to sit, to try to make sure the other people with me will not be in front of windows, flashing light decorations or other such annoyances.

2. Flexible and Adaptable

The second thing that helps is to be flexible and adaptable. This means me being flexible, to work with what I can do and make the best of it and to adapt to the various situations I am faced with. I also ask that the people around me are flexible and adaptable in order to help me. For example, if I am not understanding something you are saying try to rephrase it, or better yet adapt, and write it down or type it out on your phone or computer.

Also, for my vision I tend to need to walk on the right hand side of whoever I am walking with. This is so that if I am looking at them to lip-read what they are saying I can still see what’s going on around me with my right peripheral vision. If I am forced to walk on the left, I can look at the person but I will see nothing around me and often end up walking into things. This means the person I am walking with needs to be more adaptable to accommodate my needs.

3. Patience, a Trained Necessity

The third thing is patience. I often get frustrated with myself for not being able to understand something being said, or because I find navigating new places completely terrifying. Over years of mistakes and mishaps and much mental and emotional upheaval I have learned to try and be more patient with myself. This means giving myself time to get around and navigate a new area so that I can be more careful and less likely to fall over. It also means not putting undue pressure on myself to get things right, straight away, every single time.

I also ask and expect the people around me to be a little patient with me. I am well aware how frustrating and annoying it can be to have to repeat yourself, to have to accommodate my communication preferences and to allow me the time to figure things out. However, doing so helps me more than you may realize. It makes me feel more of a worthy human being than being told something I didn’t hear “doesn’t matter” just because the person doesn’t want to repeat or rephrase.

Still on the subject of patience, I am not a naturally quick walker. I take small steps and I have little legs and a dodgy hip. This means I don’t get around very quickly at all. Walking with me can involve a little foresight and patience. I am all for apologizing for this, and am well aware that many people would love me to walk quicker. However, I can’t and I don’t. If I am using my cane I have to ask for even more patience and “put-up-with” from the people I am with. I am told the constant-contact method I use with the cane makes it noisy (sorry, I can’t hear it) and I understand that walking with someone using a cane requires a bit of getting used to. So, the foresight is to allow me more time to get somewhere, and the patience is to not get frustrated that I am not able to meet your, or your guide dog’s, natural gait.

4. Concentration Exhaustion

In fourth place is the awareness that I get very fatigued. This is something for me, to bear in mind and plan for and compensate for. It is also for others to be aware of and accommodate for. Because of my hearing and eyesight I put in a lot of effort and concentration to complete the kind of everyday tasks that many people do not even need to think about: tasks like communicating, getting around, paying attention. For me, these things are frankly exhausting.

For my vision, I am often putting in extra effort to try to judge where people are and to pay attention to my cane’s feedback and my route so as not to walk into things or fall over. For my hearing, it takes effort to lip-read. A good lip-reader gets about 30% of the conversation from lip-reading alone. Making sense of the whole sentence and fitting the jumbled pieces together in your mind is hard work and like any hard work it is tiring.

It is worth being aware that I may need a break, I may take time out or leave earlier than I would otherwise. I get tired quickly. I get headaches and my eyes are often strained from focusing and concentrating. It is not because I do not want to be where I am. I enjoy my work and I love my friends and family. My zoning out or being tired is not from a lack of enthusiasm. Quite the opposite; it comes from the effect of having put so much effort and enthusiasm into those situations that my mind and body eventually say “enough, I’m done”.

5. There Is No Magic Fix

Because of my various disabilities and conditions I am regularly faced with people who seem to want a “cure” or a “fix” that would make me and others with disabilities “normal” (whatever that is).

I am so often met with people who, when I fail to understand them, ask if I am wearing my hearing aids or if they are working okay. The point here is that hearing aids are not a magic fix. They do not make me suddenly “not Deaf”. They simply make the sounds around me louder. They are a microphone and volume box sending sound waves into my ears. That is all. I am still Deaf. I still have sensorineural and conductive hearing loss in my ears. These mean that the sounds I hear are difficult to distinguish and understand, even with hearing aids. This is why I rely on lip-reading and context and knowing people and how their voices sound. In short, most people could be speaking Dutch for all I can understand them from hearing alone. I can tell they are talking, that is about it.

Likewise, my glasses do not make me suddenly able to see everything perfectly. Glasses are a common thing, but I still get people who do not understand why even with glasses I still need Large Print and am unable to see things further away. Glasses can only correct my vision up to a certain point. Beyond that, there is nothing that can be done.

I once had an ophthalmologist try incredibly strong lenses for my left eye. I got so little out of them that I said “No, thank you” to the offer of prescribing some for me. My glasses correct for the astigmatism in my right eye which helps my eyes to focus a little more, both for distance and for reading. I also have some correction for reading, because I do a lot of it. However, even the optician will say that they can’t fix everything. They are never going to be able to make me able to see small print without a magnifier. There is a good reason I don’t read newspapers, or magazines, or normal size print books anymore. I can’t. My glasses can’t fix that.

So, what helps? Please, be realistic. If I tell you I am Deaf, or visually impaired, believe me and don’t look for a way to make me “normal”. Don’t start recommending laser eye surgery or a cochlear implant as the next best thing that I absolutely must try as it will “cure” me. For one, they don’t suit my particular situation and for two, they are not a cure. They won’t magically make me hearing and able to see as clear as day.

Likewise, stop assuming that just because I have my hearing aids in I can magically hear everything as well as you can. They don’t work like that, they never have, and I have used hearing aids for a long time. I know they are better now than they used to be but they are still not a fix. For me they are better than going without in most cases, but sometimes frankly being without them is better.

Things That End

Although this is just a small selection of things that help, and there are a whole host of others out there, I think it is a worthy selection to start with, to work with and to use. All disabilities require an awareness of what can help and I feel those I have discussed here cover some of the main ones. They are very much individual to me but you can work from here to see how these can be transferred and adapted for other disabilities and other people.

The point I want to make is that there are many things that can be done, both in terms of helping yourself to cope and make the most of what is possible, and helping others to do so. It just takes some time, adaptability and patience. If you are not sure what may help, ask. Ask the person themselves. There is a good chance they will know from their own experiences what works and does not work for them. I am the same. If you ask me what can be done to help I am, in most cases, more than willing to let you know, or to give some pointers for the given situation.

So, let us try to help where we can. Find out those small things that can be done to help others, and to help ourselves, cope better with living in this world and getting on with each other in the process.

 

About the Author

You can find Roiben on Twitter (@roiben).

 

Let’s Talk about Talking: Three Conversation Types for a Mutually Caring Relationship

I am grateful to Vikki Beat for our recent conversation at Caffe Nero which led to me writing this up.

It’s no secret that Fran and I spend a lot of time talking together but it took a while for me to recognise that not all conversations are the same. Different people have different ways of talking, of course, but aside from that there are distinct types of conversation depending on what the people involved need at the time. Here are three distinct types we have found useful. I’d love to know if they resonate for you – or if they don’t! Let’s talk!

“My Turn, Your Turn.”

This is the type of conversation that comes most naturally to me, whether face-to-face (in person or on a video call), on the telephone, or in online chat. It consists of short alternating exchanges, one person speaking for a moment or two then letting the other take a turn. It works well (at least for me) where you are “shooting the breeze”, making plans, or sharing things on a fairly surface-y level. What I had to learn is there are situations where it isn’t necessarily appropriate or helpful.

“It Will Be Your Turn in a Minute.”

The “my turn, your turn” approach doesn’t work for Fran if she is trying to share something detailed or important. From her point of view, my wanting to speak every minute or so means I am constantly interrupting her train of thought. Once interrupted, she finds it next to impossible to pick up again.

This was especially so early in our friendship when Fran was in mania. It was hard enough for her to slow her thoughts to a pace and into an order where she could share them with someone else. She needed me to let her speak for a while without interrupting. Then I could take my turn, whether to comment on what she had shared, ask a question, or take things in a new direction.

This felt very unnatural to me at first – and I still find it hard sometimes – but I’ve learned that slowing things down like this (essentially conversing in short monologues rather than exchanging sentences) can be incredibly valuable whether you have difficulties marshalling your thoughts or not.

“I Need to Talk Right Now.”

There are times when we want and need to just let the words flow, to “dump” (although I hate that expression), to express whatever it is we are feeling or thinking without being interrupted, questioned, or judged. It is what Thich Nhat Hahn has called deep listening:

Deep listening simply means listening with compassion. Even if the other person is full of wrong perceptions, discrimination, blaming, judging, and criticizing, you are still capable of sitting quietly and listening, without interrupting, without reacting. Because you know that if you can listen like that, the other person will feel enormous relief. You remember that you are listening with only one purpose in mind: to give the other person a chance to express themselves, because up until now no one has taken the time to listen. (Thich Nhat Hanh)

This is important work and carries a degree of responsibility. As the listener you may feel any number of things: pain, hurt, joy, pride, love, anger. You might yearn to interrupt with advice and suggestions. It’s okay. You get to feel it all – and you get to keep it to yourself. Your input, suggestions, and opinion may be welcome later but right now your role is to be wholly present, to STFU, and to listen. It is NOT easy. At least, I do not always find it so. Persevere. It is perhaps the greatest gift you can offer another human being.

Vikki and I joked how maybe we ought to make some flags we can hold up to let the other one know what type of conversation we want or need. That might be taking things a little too far (though it would be fun!) but it is important in any relationship that both people can express what they need in the moment. As far as conversation types go this can be as simple as holding up your hand to indicate you’ve not finished talking yet, or saying “I need you to listen right now while I get all this out, okay?” Our ability to do this – and to accept that we still sometimes get it wrong – is why Fran and I work so well.

When two people are open and honest with each other and come together to share words, space, and time, it can be a truly beautiful thing.

Out beyond ideas of wrongdoing
and rightdoing there is a field.
I’ll meet you there.

~ Rumi

 

#MentalHealthAwarenessWeek 2018: Finding My Tribe

Today — Saturday, May 19, 2018 — is the day of the Royal Wedding. I wish Harry and Meghan well in their life together but I brought myself out to the coast to avoid the media, and social media, onslaught. It’s just not something I feel a part of. Here at Tynemouth there is calm and space and air and sky and sea. And a bench where I can sit and write.

A week ago I was also writing. Not here but in the café at the city library. At the suggestion of my boss Judith I was drafting a piece about Mental Health Awareness Week for the corporate blog at the company I work for.

I submitted the article on Monday morning. It was published Tuesday lunchtime and to be honest I’ve been blown away by the response. It’s been picked up by management up to and including our CEO. I have a meeting next week with one of the senior managers to explore how I can get involved with the company’s mental health initiatives.

This week has also seen me out twice socially. That’s not a typo — TWICE! Both events were organised for Mental Health Awareness Week. The first was an evening of music, poetry and comedy at the Dun Cow in Jesmond, organised by The Kindness Project NorthEast and Newcastle’s Recovery College Collective.

The second event was a pantomime version of “The Wizard of Oz” at the Cluny in Ouseburn, organised by Laughing Lasses, at which I performed a reading from our book High Tide, Low Tide. I read two of Fran’s poems (“A Wild Hair” and “Urgency”) and excerpts from two of the chapters: “What Is the Secret of Your Friendship?” and “Why Do You Do It?”

The events were a lot of fun and raised much needed funds for local mental health projects. They meant a lot to me on a personal level too. I came away with a stronger sense of belonging than ever before: of belonging to a local community of people who accept me, who are genuine and open, and passionate about making a difference. Borrowing words from Fran, I feel I have found my tribe. And that’s a powerful thing.

I’m confident this new sense of engagement locally is going to complement my involvement in the wider mental health community. Published on May 6 for Mental Health Month, my Q&A interview for It’s Not Your Journey renewed our connection with Rebecca and Joe Lombardo, two tireless and inspirational workers in the mental health arena.

This week Fran and I published the first in a new series of articles by mental health author, speaker and family coach Julie A. Fast. The story of how Julie and I met online and the unfaltering support she’s shown me and Fran over the past five years is worthy of a blog post in itself. For now, I will just say thank you, Julie!

Campaigns such as Mental Health Awareness Week and Mental Health Month attract their share of resistance and criticism for not addressing some of the bigger issues. For me their principal value, and why I support them, is that they bring like-minded — and like-hearted — folk together. That has certainly been my experience. It is in such ways that we build connections, relationships, friendships, communities. It is in such ways that we empower ourselves and each other to address wider concerns and “make a sodding difference.”

In a recent post Fran and I described how we pool our respective skills and experience in our mental health work. Each of us complements and supports the other. It occurs to me that this is a wonderful template for wider collaborations too, and I look forward to whatever the next week, the next month, the next year may bring.

Who’s with me?

 

Crossing Roads

By Roiben

We all hope in today’s society with its constant rush and pressure that people can still be good, helpful and polite. That we would, upon seeing a person in need, stop like the much-fabled good Samaritan, and help. That we would hold doors open, offer to carry heavy bags and help an older person across the road.

However, there is such thing as being a little over-eager to help and perhaps misguided in how to go about it. I have recently begun using a long cane. Michael Cane, my new and trusty friend, is helping me get about my daily life. I had been warned that using the cane does have its drawbacks, in attracting overly helpful people. It was still a shock to the system when it happened.

I was walking a well-known route from an underground station to work. This involves crossing a few roads. I stopped at the traffic lights to the first road and prepared to wait for the lights to change. Out of nowhere a man grabbed my right arm (the arm holding the cane). He had said nothing to me up to this point. He pulled me forward a step, then signaled for me to stop by pulling my arm backwards. At that point he said “It’s red.” It took me a few moments to realize he meant the traffic light, not my stripy cane. We waited, then a lady on my right (who apparently was with the man) said “Go” and we all walked across the road.

I was glad to get across the road safely, but would have much rather done so under my own steam like I do every other week-day. The key thing here is not that the couple wanted to help me. It was how they went about it.

There is a rather over-zealous belief in today’s society that the disabled need to be helped. By this I mean a belief that we are not capable of making decisions and doing things for ourselves, so we need help to do it. In taking my arm, the man had decided I needed help to cross the road, due most likely to my cane. In doing so he removed my ability to choose for myself whether or not I wanted assistance.

This is a common thing: people “helping” disabled people because they have a cane, a wheelchair or otherwise. I have heard stories of people being pushed across the road when they did not in fact want to go that way, or being dragged to places they had no intention to go to. All because someone has assumed that is what is wanted and wants to “help”.

So, what point am I trying to make? Yes, it is a good thing to want to help your fellow human. However, doing so in a way that removes their independence, choice and in many cases dignity, is not good. I would ask that if you want to help, do one simple thing first: Ask. Ask the person with the cane, or dog, or wheelchair if they want help. They may say yes, they may say no. The point is that it should be up to the disabled individual if they require assistance in that moment.

I have had many people ask me if I want assistance. In most cases I say thank you, but I am okay. Because in all honesty, in most cases I am fine. I know where I am going and how to get there. I am still so new to using the cane that I haven’t yet been in a situation where I have needed help. I have not got lost yet or had my normal route changed to the point of disorientating me. It will happen, eventually. It just has not happened yet.

There are some indicators that a person may need help and that help would be gratefully accepted if offered. Firstly, as with non-disabled people, if someone is standing looking lost or distressed, especially if it is somewhere with many junctions, such as a tube station. Or, if someone with a guide dog is standing or sitting, and the harness is not being held (but the lead is). This may mean the individual needs assistance. In both of these cases, you should introduce yourself and then ask if assistance is needed, and what assistance that may be.

A person in a wheelchair who is just sitting looking around may well be taking in the weather – so don’t assume they need help and certainly don’t go about pushing them around places without first asking. They may have a mobility impairment but that doesn’t mean they are incapable of making decisions for themselves.

In my experience those of us with disabilities are great at adapting to the world we are faced with and are fabulous problem solvers as a result. Some of the cleverest people I have ever had the pleasure to meet have been disabled.

 

About the Author

You can find Roiben on Twitter (@roiben).

 

Six Things I’d Have Quite Liked to Do in 2017—How Did I Get On?

Back in January I posted a list of six things I’d quite like to do in 2017. So how did I get on?

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1. Volunteer with Time to Change

ACHIEVED

Following on from previous volunteering experiences with mental health charity Time to Change, I had a fantastic time at Newcastle Pride in July. You can read how I got on, as well as the thoughts of others who took part, in my post What Is It Like to Volunteer with Time to Change?

If you’d like to get involved with Time to Change yourself in any capacity, check out their Champions page.

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2. Visit a Pub

ACHIEVED

This might not seem a particularly challenging objective but I rarely visit pubs, apart from when my wife Pam and I are on holiday. I specifically wanted to visit Wylam Brewery at the Palace of Arts in Newcastle upon Tyne. I achieved this goal in May, finding that the place fully lived up to my hopes.

I visited two other pubs of note this year. The 15th-century Kirkstone Pass Inn on the A592 Kirkstone Pass road is the highest pub in Cumbria, and a rare delight boasting an extensive and delicious menu.

In November I accepted an invitation to speak at Talking FreEly’s second mental health event in Ely, Cambridgeshire. I travelled down the day before and stayed at the Nyton Guest House. I had a fabulous meal and a couple of pints at the Minster Tavern in the centre of town.

You can read about my visit to Ely in my blog post Community, Cake, and Conversation, and watch my talk here.

A former favourite and Britain’s highest pub, the Tan Hill Inn featured in a Christmas 2017 tv advert for Waitrose supermarket. The advert is pretty cool but the pub itself failed to deliver when Pam and I visited in May. We looked elsewhere when we were back in the area in October. The Pack Horse Inn in Keswick, and The Beehive Inn at Eamont Bridge near Penrith are both worth a visit.

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3. Fundraise for a Mental Health Charity

ACHIEVED

I didn’t do as much as I had intended, but Fran and I again took part in the NAMI Maine Walk in October.

Fran did the walk in person in South Portland; I took an equivalent walk here in Newcastle.

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4. See HTLT on a College or University Reading List

PARTIALLY ACHIEVED

Fran and I are keen to get our book High Tide, Low Tide: The Caring Friend’s Guide to Bipolar Disorder into libraries and onto the reading lists for relevant school, college, or university courses.

As far as we know, our book isn’t on any course reading lists yet. However, it is achieving recognition in the professional sector and various lists and libraries.

• One of our highlights was seeing High Tide, Low Tide reviewed in The Psychologist, journal of the British Psychological Society.
• Our book also featured in Abilities, Canada’s Lifestyle Magazine for people with disabilities, with a readership of about 60,000.
• High Tide, Low Tide was accepted into the Royal Society of Medicine Library, and is to be found in a growing number of libraries around the world.
• Our book was added to the Book Club and Counselling Students Book List at The Counsellors Cafe earlier this year, and to the Community Book List at MentalHealthHour.com.
• Our podcast interview with John Wilson is in the OnlineEvents resource library for professionals in the counselling, psychology, and caring sectors.

If you are involved with training courses or programs and feel our book could be relevant, we’d love to hear from you!

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5. Bring My Weight Back under 180 Pounds

NOT ACHIEVED

In January 2017 my weight was hovering around 190 pounds.

As the graph shows, I’ve not achieved my target of 180 pounds (yet!) but I brought my weight down significantly and maintained for a good while between 184–186. Christmas has added a couple of pounds back, so I need to pay attention. I will carry this objective forward into 2018.

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6. Complete a Mental Health Course

ACHIEVED

I completed the excellent free online Ally Training Course offered by NoStigmas. The three self-paced modules cover Self Care, Peer Support, and Advocacy and I was impressed by the content and presentation of the material. I recommend it to anyone interested in mental health support of oneself and others.

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Did you set yourself any goals for 2017? How did you get on? I will post my Things I Would Quite Like to Do in 2018 list in the New Year.

Marty

 

Welcome Home! Post-Vacation Support for the Bipolar Traveller

The traveller with bipolar disorder faces a number of challenges. Leaving behind proven routines and support structures, the journeying itself (especially if different time zones are involved), and the excitement of new places and opportunities are all intrinsically destabilising. Good planning including a Travel Wellness Plan goes a long way to mitigate the risks. Factoring in some post-vacation support is valuable too.

In our book High Tide, Low Tide Fran and I describe how we managed our mutually supportive friendship whilst Fran was touring Europe with her elderly parents, as well as what happened on her return home. On that occasion, Fran couldn’t rest and recuperate, as she had to immediately look for somewhere new to live, pack up, and move home. Fortunately, not every trip is quite so traumatic!

Fran has just returned from a ten day vacation with a friend to Edisto Beach in South Carolina: a round trip of 2,200 miles. She arrived home last night around 6 p.m. her time (11 p.m. for me here in the UK). We met on webcam shortly afterwards.

Fran had warned me in advance not to expect too much from her on this first call. The journey north had taken two days, and the 22 hour drive had been compounded by car troubles and a less than satisfactory motel stopover. (Note to self: pay more attention to online reviews when suggesting travel accommodation!)

I imagined we’d be on for no more than ten or fifteen minutes: long enough for me to welcome her back and to briefly catch up on anything immediately pressing. Anything else could and would have to wait. As it turned out, our call lasted an hour and a half. Fran was exhausted, but needed me to hold space for her to release what she was feeling and thinking, so she could unwind. I got to contribute but we agreed I would have my turn later. This first call was for her.

We had our usual check in at midday my time today, and will meet later on webcam. There is no specific agenda but as we move through these first post-vacation days we will be focused on a few key areas.

Vigilance. It’s more difficult to help Fran keep an eye on her health when she is away from home. We kept in regular touch on this trip using chat, and had a few voice and video calls, but far fewer and shorter than usual. Getting back to our usual structure is stabilising in itself and will help each of us assess how Fran’s doing in terms of her physical, mental, and emotional wellbeing.

Catch up. I have a fair idea what Fran did while she was away because she shared things with me day-to-day and on her social media. But, as I mentioned to her last night, “I’ve had ten days of life too!” I look forward to sharing my news with Fran and hearing more of what she took away from her vacation.

Processing. We approach any experience as an opportunity for growth and learning. This curiosity has stood us in good stead in the past. We will take time over the coming days and weeks to explore what we’ve experienced while Fran has been away, celebrate our successes, and look for lessons learned.

For example, Fran mastered a new GPS (satnav) app on her phone, and successfully navigated the route to and from Edisto, as well as on day trips through the week. She and her friend also handled spending most of their time together on the trip, including the best part of four days on the road.

For both of us, being in less frequent contact always offers opportunities to explore connection, independence, and codependency in our relationship, and this trip was no exception.

Picking up the reins. We keep track of our individual and joint tasks on shared calendars and To Do Lists. We parked a number of things while Fran was away, so we will review these and pick up where we need to. This includes appointments, preparing for upcoming events and trips, and the holiday season (Thanksgiving, Christmas, and New Year).

Hanging out. One of the things I am most looking forward to is hanging out again with Fran, especially reading together (we are currently reading Outlander by Diana Gabaldon) and working our way through all eleven series of the American sitcom Cheers on tv.

Fran loves to travel, when funds and circumstances allow. We are already planning for further trips next year. With care and forethought we know she can travel safely. And with some dedicated post-vacation support we know we can grow and move forward, both stronger for the experience.

 

The Flight of the Bumblebee, by Catherine Neish

If you were going to write a book about your life, what would be the title? Who would you want to read it? Would you cover anything up? Would you expose an area of your life into the light?

I want to lend you a story. It’s a story about life with mental illness but with none of the vocabulary you’d expect. You’ll read about depression, psychosis, mania, paranoia, anxiety and you will also read about recovery, finding being, mindfulness, healing, recovery.

My favourite stories are those that you can relay to a child and the adult reader also finds depth of understanding beyond the literal narrative. Are yours? Well, I hope that The Flight of the Bumblebee does just that.

In the last few weeks, I’ve added questions for individuals and book groups at the end of each chapter. I want to make it easier for you to have those ‘mental health conversations’. I find that when I have a metaphor to talk about, those chats are much easier to begin. “Have you read The Flight of the Bumblebee? Well, you know when Lil gets stuck behind a window but can’t understand why she can’t fly – that’s exactly how I feel. I can’t grasp what I’m dealing with.”

The Flight of the Bumblebee was written over a 25 year period prior to and post my diagnosis of Bipolar Disorder. It charts my personal experience using the power of narrative. I wrote sections at different periods of illness and recovery, not realising until the final year that each section could work together.

I was brought up in the UK and after I left school at 18 years old, I chose a gap-year abroad so that I could learn French before I began university. I began experiencing awful, awful persecuting thoughts. I remember being very harsh on myself: I should ‘get a grip’, ‘stop making mountains out of molehills’. I felt imprisoned inside myself. It felt like a bumblebee trapped behind a window, not understanding or knowing what my problem was all about.

I truly believed that ‘whatever it was’ was a huge flaw in my personality. I was acutely aware of the stigma that can be associated with mental illness. I refused, therefore, to go to my GP. Why was I so frightened? First of all, I thought that if the words ‘mental health’ were written in my medical notes, the words would be used against me at any medical I would need for my career. Secondly, I believed that medication would make me unnecessarily addicted. Thirdly, I didn’t want formal counselling because I thought it would open a ‘can of worms’ that I couldn’t deal with between appointments.

I opted for the most unsafe option: I simply deeply, deeply wished to believe that the emotional torture would stop! Family and friends who knew I was struggling did too. To be honest, none of us really knew what was going on and that is also highlighted in this story.

I began Durham University and I thoroughly enjoyed it. However, I experienced an emotional ‘bungee-jump’ at the end of my final year. It was like riding an emotional roller coaster. My moods swung very quickly from deep depressions to manic highs and then one day, very suddenly, my usual perception broke and my mind was flooded with thoughts, pictures and ideas of a symbolic nature. I lost my sense of social cues and even believed I could fly. My psychotic manic experiences were very difficult to talk about and that in itself caused a social nightmare. I felt embarrassed and confused. My college, St. John’s College, bent over backwards to help me. Nevertheless, I had to be hospitalised for my own safety. I resumed life without wanting any follow-up treatment, and I was sure it would never happen again. However, the emotional pendulum kept swinging.

When the bumblebee finds it hard to remain aware of the garden and the colony, it reminds me of hard times where I become pretty self-absorbed. Hard times make me question myself, and it becomes difficult to distinguish what is ‘me’ from what is ‘illness’. It becomes impossible to hear my own voice affirming what I choose to value in life. It’s harder to perceive other people positively, harder to let go of day-to-day tensions, and harder to sleep. I become acutely aware of complexities within myself.

I had a further breakdown with psychotic depression when I was a third of the way through my Post-Graduate Teacher Training. My thoughts were terrifying and so were the hallucinations. Apparently I looked white with fear. This was the very point in my life when ‘I wasn’t able to take in the extent of the horror or let out any expression of repulsion’. I needed to be hospitalised, given medication and I also agreed to electro-convulsive treatment (ECT). I was given a diagnosis of Bipolar Affective Disorder and some people even thought I would never work again.

I couldn’t ignore that I had serious illness anymore! My family and supportive friends helped me enormously. I accepted that I needed medication and I willingly took Lithium Carbonate, as prescribed, with other drugs to make a personalised pharmaceutical cocktail. The combination therapy, arranged by my psychiatrist, was working well. By this stage, I was happier to take medication as I could certainly feel its benefits but it took me years and years to come to terms with the horror of the illness and especially audio, visual and somatic hallucinations.

When we hear people talk about mental illness, we don’t often hear about the effects of stress on the body, tense muscles, headaches, digestion or other physical pains. Yet, mental illness can bring physical signs of stress as well as emotional stress. In the story, I have tried to include physical signs of stress for the bumblebee.

I think we all can make choices about our mental health. Sometimes it is easier to make skilful choices than at others, but choosing to work with a therapy can mark a turning point. Consciously working with the therapies, whether they’re talking therapies, physiotherapy, occupational therapy or art therapy, music therapy, dance therapy and so on, is beneficial. I am sure that choosing to recover makes a difference to the speed of recovery.

I was able to return to teacher training due to the enormous support from my tutor at Homerton College, Cambridge University. I also visited the local bipolar group, which was helpful as it gave me a chance to learn from my own and other people’s experiences. Some members there were working and a few were teachers, which inspired me to pursue my own teaching career.

I began my first teaching post in a rural secondary school. I started on a 45% contract, and I still teach part-time for health reasons. In that particular rural area there were no opportunities to meet other people with bipolar. However, a very competent Community Psychiatric Nurse (CPN) supported me on a continuous basis. I was helped by mental health services in pastoral and in practical ways. I have felt that all the mental health professionals with whom I have worked (Occupational Therapists, Social Workers and Psychologists) have become ‘professional friends’. They are there to join hands with and face, with me, a shared reality. I think that is why I find them so valuable. They provide a guide for me to measure my moods and perspectives.

I wrote about ‘bee-ing’ or wellbeing nearly ten years after I had written about the bumblebee crashing against the window. Bee-ing reflects the calmer and settled moods I felt. Life was kind. I found it easier to cope with day-to-day activities when my life ran at a gentler pace.

I know that, for me, symptoms of bipolar can be natural responses to life’s major ups and downs. Sometimes, it can be difficult to experience normal reactions without wondering whether I’ll become ill with a bipolar episode. Nevertheless, it is crucial to remember that everyone’s feelings need to be validated, whether they have bipolar or not! Good friends and family members gently let me know if my feelings are not quite in proportion to my life’s events. Therefore, my life can be managed more assertively, and it is ultimately healthier for everyone. The message of the ‘air’ is the wisdom I have gathered over the years as I have listened and learnt from some of the largest world faiths, others and grown through my own experiences.

What about suicide? I admit that sometimes I am my own worst ‘thought-enemy’. I have experienced suicidal thoughts and have wanted to be granted blessed relief from my mind. I have heard many people say that suicide is selfish. I don’t think it’s about being selfish because at those times I have felt I have totally lost my ‘self’. I do get through though, somehow. Thankfully, most of the time, I have a healthier perspective and find life meaningful, life-affirming and fun!

How do I feel about having a ‘mental health disability’? When I meet other people with any long-term illness or disability, I feel a great sense of alliance with them. Nevertheless, the labels I’ve been given have, at times, created problems for me. The 3 D’s, coined by society, to describe bipolar: ‘disabled’, ‘disorder’, ‘disease’, are themselves disabling and can worsen existing symptoms. The price of being pigeon-holed as ‘abnormal’ includes stigma, prejudice and discrimination. Mental health comes with a vocabulary of its own, and all the words seem to carry negative connotations that can be stumbling blocks. In my experience, other people’s irrational preconceived ideas about ‘madness’ are often amplified when the illness raises its head – presenting me with a double whammy! At these times, it is good to be viewed simply as an ordinary person with bipolar.

In my view, the diagnosis of ‘Bipolar Affective Disorder’ should simply be seen as a heading for a range of psychiatric therapies, psychological therapies and additional therapies which can help control symptoms. It is a ticket to care, which includes protection by disability legislation. With a diagnosis of ‘Bipolar Disorder’, people can legitimately say that they need time to eat healthy food, exercise, relax and go for a good work-life balance because they deserve the best foundation for good health. Helpful friends and relations find out about bipolar and also realise that no two people diagnosed with bipolar are alike because no two people are alike in the first place!

If someone with Bipolar Disorder can work, then it is crucial that the workplace is supportive. I do not find it easy living with bipolar secretly simply to protect myself from stigma. Nor is it easy to disclose that I have Bipolar Disorder!

I think there is less stigma than there was ten years ago, but there is still a way to go before employers find helpful ways to support employees with mental health problems. Currently, I teach at a special needs school, and in past years my colleagues and senior staff have been supportive. I know, however, that it is rare to find such support in the workplace!

In my early 30s, I was more open to other therapies, especially counselling. Psychotherapy has helped me realise how important it is to deal with emotional issues at the appropriate time and in an appropriate way. Storing emotions from childhood has been counterproductive for me and my lack of assertiveness has been self-detrimental in the past. At that time, writing became a major part of the way I processed my thoughts and opened my eyes to the choices I could make which would help me manage my mental health more skilfully. It was the counselling process that led me to reflect on the air we breathe to keep us alive.

Why do I love the concept of the air? It is an unseen worker. Spirituality describes aspects of life that we can’t touch, taste or see. Many guides to well-being recommend exploring spirituality. In my view, prayer, meditation and thinking about what transcends beyond the here and now, such as beauty, laughter, love, understanding, peace, a sense of interconnectedness are part of well-being. They are challenging and helpfully so. Acknowledging spirituality provides a deep-seated sense of meaning, purpose and belonging. It is also very good to feel part of a community either through work, faith or secular groups.

Relaxation is an art and a science. By doing the things I love and that make me feel very safe and secure, I can learn more about the art of relaxation. I’m part of a drama therapy group, which I go to one evening a week and have done so for the last 6 years. It is a very positive and supportive group which often uses the ‘here and now’ for material. I’ve learnt that combining sound with movement is a really good way to get a break from constant unskilful ways of thinking. I enjoy a variety of relaxing activities between drama therapy evenings, walking, gym, drama, swimming, yoga, gardening, art and writing. There is a huge variety of relaxation, meditation and hypnosis CDs; the secret lies in regular practise. When I consciously give myself time to relax each day, I can almost memorise how it feels to be deeply relaxed and save it for a rainy day.

Currently, I teach and I’m training to become a counsellor. I also have a magazine style blog. I’m not ‘sorted’ but, at the moment, I’m managing my bipolar better than I have been able to in the past.

I hope you enjoy The Flight of the Bumblebee.

Catherine x

About the Author

Catherine Neish was born and brought up in Yorkshire. After a year working in France, she began a Theology degree at Durham University and subsequently studied at Homerton College, Cambridge, to train as Secondary School teacher. During her time at Cambridge, she was diagnosed with Bipolar Disorder but completed teacher training at the end of December 2000 and since then she has taught both primary and secondary school pupils.

The Flight of the Bumblebee: An inspirational tale of hope and repair is available on Amazon for Kindle.

Catherine blogs at teacherwithbipolar.blogspot.co.uk and can be found on Siren Radio Wishful Thinking.

 

I Once Knew a Genius Who Ended up a Simpleton: My Brother Gabriel Had Epilepsy and Bipolar Disorder, by Marie Abanga

My name is Marie Abanga and I am from Cameroon in Africa. Before my brother Gabriel was diagnosed with epilepsy at the age of eleven, all I knew about the condition was the appellation “fainting fits”. In my country and probably in a large chunk of Africa, such fits are still attributed either to evil attacks or ill luck. There is so much taboo and stigma surrounding such cases, to the extent that some families would rather hide their children suffering from seizures than risk public shame. They simply are never sent to school, or withdrawn once seizures set in.

As if the epilepsy was not enough, I learned barely two months before my brother’s death that he had also been diagnosed with bipolar disorder. This made sense to me because I had witnessed firsthand several highs and lows of his behaviour, but I was left speechless. I remember a blog post I did on my blog in June 2014 on the occasion of his 33rd birthday, crying out loud: “Somebody tell me what is wrong with my brother”.

Shortly after that post, I gathered enough courage to ask my kid sister with whom he recently lived in the US, and like it was super top secret “of course”, she told me of his bipolar disorder diagnosis. Sadly, before I could start understanding anything about bipolar disorder or how to help him, he died on the 2nd of August 2014.

We probably know about all the stigma, taboo and abuse cum outright rejection of persons living with a mental illness and I won’t go there anymore. I will just say that I nearly went down the drain mentally too, both before and after my brother died. Indeed, it was my quest to learn what was wrong with my brother which helped me realize something was wrong with me. A psychotherapist I saw in Brussels mentioned PTSD. I didn’t want to dwell on the diagnosis so much, but on what I could do to take better care of myself.

For pretty much all of my life, others’ wellbeing has been my priority, and my brother’s especially. I now know I tried my best to love him even when he was at his worst. I just think if I had known what he had been diagnosed with and reached out earlier to the big online community, I would have done much better.

When my brother died I froze: I needed to write his story and immortalize it before he too became a statistic. I needed to let my family and the world know I had had enough with all the taboo and stigma, and that I was putting myself all out without fear or favour. The fierce mental health advocate was born and you wouldn’t find even a handful of those in my country–that is not bragging.

The memoir (the third of four I have so far self-published) is my tribute to my brother and all those with mental challenges and illnesses. It is titled My Brother’s Journey from Genius to Simpleton: Battling with His Mental Illness and Coping with His Loss.

I am still coping to be candid, and only recently have dealt with the last guilt I still harboured for my brother’s Waterloo. This is a big credit to the book High Tide, Low Tide: The Caring Friend’s Guide to Bipolar Disorder. In this book, whose emotional journey reading I blogged about almost religiously, I felt it all, learned so much, braved it all, and healed so much. I am implementing a lot of lessons learned and have discovered several other resources from the website of the co-authors. It is really true that if you seek you will find.

I am the Country Director for the Foundation created in my brother’s honour. The Gbm Centre for Epilepsy and Mental Wellbeing in Cameroon is a project of the Gbm Foundation for Epilepsy and Mental Wellbeing established in the state of Massachusetts where he died. A Centre for Epilepsy and Mental Wellbeing in Cameroon will definitely be one of its kind. Yet, mental illness is one of those taboos “society” still balks at. Not because most are spared from its ravages and deliriums, but because of the stigma associated with any such illness. It is no more than a decade or so ago that the country saw its first Center for Autism. Before then, and even now, illnesses and disorders such as these are simply attributed to witchcraft, ill luck, bad parenting, and even demonic attacks.

About the Author

Marie Abanga is a lawyer, coach, consultant, author and mental health advocate, also Country Director for the Gbm Foundation for Epilepsy and Mental Wellbeing. She blogs passionately about her thrilling life and mental health advocacy at marieabanga.wordpress.com.

Her books are available in paperback and for Kindle on Amazon.

 

Walking Home from the Store (Old Friends)

I am walking home from Tescos. It’s a little after 6 pm. I go to the store two or three evenings a week for groceries, or treats. Most times I would be pressing home, to be back in time for my Skype call with Fran at 7 pm. Not this evening, though.

We’ve not fallen out or anything like that, it’s just she’s out with friends all day today while she’s having work done on her apartment. We have chatted on and off. The last time was about half an hour ago.

Fran: Things are going well but I am exhausted. Horizontal day tomorrow.
Marty: I’m at Tescos
Fran: 1.45 movie
Marty: Ooo what movie?
Fran: My Cousin Rachel
Marty: I will have to look it up. With J?
Fran: Yes
Marty: Cool

We met up on Skype last night at 7 pm. We went through her checklist to make sure all the preparations were done, and she carried the laptop round the apartment so I could see the progress she’s made. We usually have another call later but didn’t last night, because there was still a lot for her to do.

It’s a beautiful evening here. Sunny, but (mercifully!) much cooler than it has been lately. I hate the heat! Can’t move. Can’t think. This is lovely though. The shopping bags are heavy but I’m not in a rush. I relax into the moment.

How am I feeling?

I feel proud of Fran, for having got everything done for when the workers arrived today. It has been a huge challenge. The physical side of things, for sure; clearing and packing things away so they won’t get damaged. Exertion can easily trip Fran into a fatigue crash. It’s a little early to be sure but I’m hoping we have avoided that. Then there’s the mental and emotional stress, and the disruption to her—and our—routines. In some ways, that’s even more of a challenge to Fran’s wellbeing and stability than the physical side of things.

What else?

I feel free, in having the evening to myself—and a little guilty for feeling that! It’s rare for us not to be meeting at all. I don’t know what I will do with my time! Feels like I should (one of my most hated words!) do something special, something particular, rather than let the opportunity simply pass through my fingers. Then again, I don’t have to do anything as such. Relaxing counts.

I cross the Metro train line. Turn right at the Community Centre. It’s nice enough to take the short cut across the playing field.

Guilt slides into envy. I am envious of the friends who get to spend time with Fran today, especially the friend who will accompany her to the movies. We watch films and tv dramas together on Skype or Netflix but—three thousand miles apart—we can’t go to the cinema for real.

Observing all this is interesting! We don’t label thoughts and feelings as “good” or “bad” (those labels carry a moral weight that is mostly inappropriate). We feel what we feel, and thoughts come as they will. “Healthy” / “unhealthy” we use sometimes. “Positive” / “negative.” I choose not to label my pride, guilt, and envy, however. They are old friends. They are all welcome here.

I stop for a moment. Rearrange the bags of shopping. Move on again.

What’s that poem about visitors to the house? Ah yes.

The Guest House, by Rumi

This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they're a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honourably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.

Be grateful for whoever comes,
because each has been sent
as a guide from beyond.

I am smiling now. Once upon a time, Fran being out all day like this—being busy, having other people to be with—would have triggered stronger emotions. Fear. Abandonment. Jealousy. I have grown since then. We have grown. We understand each other better. Codependency also is an old friend.

What else?

I am proud of me and Fran. We have worked well together this past week. I helped her plan the work and chart her progress through it. I have kept her company while she worked, listened to her grumbling about it, and encouraged her when she needed it. I am aware of—and at ease with—the things I could not help with, being on the other side of the Atlantic. I couldn’t fetch things, lift things, or be out all day today with Fran while the work is going on. I’m grateful there are other friends who are able—and willing—to be there for Fran in the ways I cannot be. Gratitude is the antidote to codependency.

Not too far now. I am crossing the playing field. Local kids playing football.

I have an idea for my evening. I am going to write a blog post—this one—about how I have been feeling and processing this experience. Later I may start the Prevent training course a friend recommended to me recently. Or maybe an early night.

Tomorrow Fran is going to be pretty shattered. As she said earlier, she will need a “horizontal day.” A rest day. We will meet up on webcam, I’m sure. We will talk, share our experiences of today. Her day out. The movie. My day. My evening. My feelings—and this piece of writing they inspired. I will likely read some more from the novel we are reading together (James Hayman’s The Girl on the Bridge). Maybe we will watch some television. Doc Martin. Or Poirot.

That’s what old friends do.