Wednesday 30 May 2018

Who Are You, Really?

By Charlotte Underwood

What is our identity? Isn’t it just a compilation of every moment between our first breath and our last? It’s our name, our background – our story. Our identity has to be who we are, surely?

“You are the author of your life” is a quote that really changed my thinking. Our life, our time on this earth creates our own novel, where we are the main character. Each event, each heartbreak and tear of joy creates a story that tells others who we are. We have the ability to shape our lives, to make a novel, the book of our life, as simple or as extravagant as we desire.

However, I do have this problem, this little tick that sticks like a thorn in my mind. Who am I, really?

I struggle a lot with understanding my identity. It’s not a split personality thing, more of an uncertainty of my true self. Years of abuse and bullying have left me confused with my own self. It seems that as soon as I think I am being true to myself, I get uncomfortable in my own skin.

This is where my story seems to become a muddle, where the plot does not thicken but seems to go around in circles. It becomes especially hard as I suffer with mental illness. How can I know who I am, when I have always been ill? Surely my true self is the one before these feelings that plagued my mind? But when was that, what version of me was that?

I know it is typical to go through many relationships and jobs and change your life goals but for me this seems to be an annual thing – I can’t seem to commit with complete confidence. I’ll start a new course and learn a new subject in certainty of my future career but months in I’ll get bored and move onto something new. It explains why it took me so many relationships before I could settle down and get married. Although I am certain that my husband and I will last forever I worry that in twenty years, will I change my mind and get bored like history tells?

I have a huge level of envy for all those who seem to have a life plan, who know what they want, go after it and become successful for it. I mean, I am twenty-two and can’t drive, haven’t finished college and have no idea what I will be doing in three months’ time. Shouldn’t I have it figured out by now?

I am hoping that by working hard on my mental health this year and trying to put myself first, with the addition of a load of self-care, that I can start to find out who I am. It can be so hard when you live with constant self-doubt, but even more so when you feel like you are in a race against your peers and your car won’t even start.

All I know, for now at least, is that life is short and can end suddenly; that’s just fact. However, that doesn’t have to be a bad thing. Maybe it just proves as a reminder that we need to reprioritise our lives, focus on really living instead of living for others. So what if I am ‘falling behind,’ maybe my life just holds other things? Right?

As my father always said, “The only thing that really matters is your own happiness”.


About the Author

Charlotte Underwood is a twenty-two year old from Norfolk, UK. She is a growing mental health advocate and writer who aims to inform and education on mental health. The goal is to be a friend to those in need. She believes no one should feel alone. Charlotte blogs at You can also find her on Twitter and on Facebook.


Monday 28 May 2018

Under Ophelia

By Jen Evans

How came you to this place and why?
It’s never as simple as a stone.
She sways unto the voices,
hearing all and heeding none.
she is collecting a myth —
a tiny island
away from ghosts,
and each twig procures a remedy.
She missteps with one foot in the water.
Is there nothing colder
than my lord’s love?
This is warmer and deeper.
She summons the sand,
his hand smoothing salt on her neck.
How the sun dried each grain to their bodies.
She never wanted to bathe.
And the sun gave her a parting gift.
Too much light isn’t enough for some.
Another foot in the river.
Oh for a simpler life,
a smaller hamlet further from the shore.


In memory of Heidi Sue. My best friend and soul sister.
May 28, 1972 – December 30, 1993.
Love Jen


Saturday 26 May 2018

Tribe and Untribe (A Trip to the Pub)

Almost exactly a year ago I wrote about visiting Wylam Brewery Tap Room at the Palace of Arts in Exhibition Park, Newcastle. I returned today and as I sit (inside, because there’s some sort of food festival going on outside in the beer garden) I am thinking back over the months that have passed since I was here last.

My wife Pam and I have enjoyed three vacations in Cumbria: a week last July in Bowness, a week in October just outside Brough, and a week this April in Appleby. Christmas was spent quietly at home. In March we travelled down to Liverpool with our two adult children for my mother’s funeral.

At work, well I’m still “doing the same job in the same place” which hasn’t challenged me for quite some time. However, as of the past two weeks I am feeling far more optimistic and engaged. She refuses to take any of the credit but this is very much down to my brilliant boss Judith, with buy in and encouragement from senior management all the way up to and including our Chief Exec.

It occurs to me this is the third Newcastle pub I have been in this month, which must be some sort of record! It’s not the alcohol (though I would be hard pressed to fault the pint of Collingwood Pale Ale I’m drinking). Rather, it’s a growing confidence in myself as someone who needn’t feel out of place in a social setting. I am reminded of something I wrote some time ago:

Be aware of the stories we tell ourselves, especially those that begin “I'm not the kind of person who ...”

Although I’m here on my own today, an important aspect of this is that I have people locally who are glad to see me and places and events where we can meet. As I wrote recently, I have found my tribe.

Of course, if there is a tribe there must be an untribe. Fran and I have been talking recently about the importance of boundaries and distinguishing healthy connections from unhealthy ones. About those people we recognise (and are recognised by) as “our people.” Those we resonate with. Those we feel safe with and respected by.

This doesn’t mean we get to ignore or behave badly towards people who are not our tribe. (I’ve come a long way from the days when I had an Inner Circle of “Special People,” and I’m not going back there!) But it does mean we get to respect our boundaries and decide where to focus our time and energy.

There is a flipside, of course, which is that we may find ourselves on the outside of other people’s boundaries. There will be (there are, I guarantee it) people for whom we — our attention, our attitudes, life choices etc. — are fundamentally unhealthy. Even toxic. And that’s okay too. Respect the other person. Respect yourself. And move on.

I’m here. I’m me. I’m growing. I’m learning. I’m flawed. I mess up. I fess up. I love. I am loved. It is enough. I am enough.

Mine’s a pint, by the way. Cheers!


Sunday 20 May 2018

#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?


Wednesday 16 May 2018

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).


Wednesday 9 May 2018

Team Gum: How Fran and I Share Our Mental Health Journey

“You’re stuck with me now, Frannie. I hope you realise that.”
“Like gum on my shoe.”

Fran and I are a team. Team Gum. That’s the starting point for pretty much everything we do, especially in the mental health arena. Our book. Our blog. Our social media presence. Podcasts. Interviews. Events. Book readings. Everything.

There are no hard and fast rules for how we balance things between the two of us and with the many other aspects of our lives. It depends on the nature of the work itself, our individual skills, experience, and preferences. It also depends on our commitments, health, and whatever else may be going on in our lives at the time. I thought it would be interesting to take a look at how it all works for us.

Mental Health Experience and Awareness

It is no secret that before I met Fran I had little knowledge or awareness of mental health. Fran had a lifetime’s worth which she shared, and continues to share, openly and honestly. Mania. Depression. Suicidality. Fatigue. Pain. Insomnia. The realities of living with chronic mental and physical health conditions.

I learned from what Fran told me and by spending time with her every day. I also learned from the books I started reading, from courses and workshops, and by engaging with others.

None of this means I really understand what it means to live with illness but I do believe it helps me set Fran’s lived experience, and that of others, in a broader context. And I have grown first-hand experience as a friend and caregiver.

Technical Skills

Fran worked as a highly successful electrical engineer before illness struck. She is technically competent which is a huge benefit, given that we live three thousand miles apart and do everything together online.

I work in the technology services industry (but please don’t ask me to troubleshoot your laptop or printer!) and have a fair measure of web, graphics, and computing experience. I love the technical side of running our social media, website and blog. When either of us is away from home I take the lead in ensuring we can keep in touch.

Writing and Creativity

Fran is a far more natural writer than I am. She is also a keen and accomplished photographer. She took the portrait photographs for her book For the Love of Peaks: Island Portraits & Stories: A Collection.

On the other hand Fran’s creativity depends a great deal on her health, energy and focus. The effect of illness on her motivation to create, her ability to do so, and the nature of her output (her writing in particular) can be profound. This is something we describe in our book. It makes it hard for Fran to work steadily at a project over a prolonged period of time.

I am more methodical and structured when it comes to writing. These are valuable traits when working on a long term project like a book, or committing to a blogging schedule as I recently have with, but they come at a price. I struggle to connect with the creative flow, not least because I tend to self-edit as I write. It is something I continue to work with. For example, I am currently experimenting with writing my blog posts out longhand in one of my Midori notebooks and typing it up later for editing.

Energy and Focus

Creativity aside, the tidal nature of Fran’s symptoms means she does not always have energy or focus to devote to projects. I provide the more or less stable structure to our work, keeping things moving forward so that Fran can contribute as and when she is able.

As far as possible we schedule our work around Fran’s health, allowing time in between for rest and recovery. At least, that’s the theory. We don’t always get it right. In the months leading up to our book’s publication we were working flat out with our publisher to get everything finished on time and to standard. I did most of the editing but each chapter, indeed every sentence, was proofread several times by us both. Fran was heavily involved at every stage including contract negotiations and book cover. She took a series of photographs which contributed greatly to the concept development, although they weren’t used in the final design.

We had an online cover reveal, and a book launch which was hosted online by us both and in person by Fran. This was followed by a book reading and charity fundraiser at a venue in Portland, Maine. Almost all the physical work for that fell to Fran and she hosted the event, with me attending virtually on a big screen at her side via the magic of the internet. In addition to all this we arranged interviews and podcasts, and there were marketing and promotion leads to be followed up.

It was the culmination of four years’ work. It was very rewarding but also exhausting and frustrating. It led ultimately to Fran getting severely fatigued and sick. She needed a prolonged period afterwards to recuperate.

Mental Health Community

Early on, our mental health contacts were all on Fran’s side of the Atlantic. Mostly these comprised her professional support team and people she had met over the years. As Fran’s friend and caregiver I got to know, and be known by, many of these people and organisations. Maine Health. It Takes A Community. NAMI Maine. Family Hope. Over time we started connecting with mental health groups and individuals online. Many of these were also in the US, including Stigma Fighters and No Stigmas.

At some point I recognised that I needed to up my game and connect with the mental health community here in the UK. My first approach was to Time to Change, the UK-wide charity campaigning to end the stigma and discrimination associated with mental illness. It was one of my wisest moves, and led to me connecting with many wonderful folk.

Much of our outreach is done online through social media but I have taken up the opportunity to attend events here in the north-east of England and further afield, including speaking at a mental health event last year in Ely.

For someone who used to have no social life and little in the way of social skills (the two facts are not necessarily unrelated!) it is a wonder and a delight to me that my life has changed so much.

It is interesting how our social skills complement each other. Fran is brilliant at meeting new people, which is a boon on vacations where she will strike up conversations with folk she has never met before. She finds it harder to maintain connections and friendships long-term. I have always felt more comfortable with established relationships, although I am learning to relish new connections and first time conversations. I have certainly “come out of my shell” to the extent that I now enjoy the people side of our work.

Visibility and Risk

Much of our motivation for working in the mental health area is to challenge stigma and discrimination, and to share the message that living with mental illness does not preclude or prevent deeply meaningful and mutually supportive relationships. The flip side of that coin is that stigma and discrimination really do exist and are rarely pretty. We risk negative reactions any and every time we raise our heads above the parapet. Every Facebook post, every open and honest conversation, may bring unwanted and unwarranted reaction.

The risk falls more on Fran’s head than mine. She is the person living with illness. She is the one with the diagnoses, the one whose symptoms, behaviours, and situation are being described or explored. With very few exceptions I have felt listened to and supported when talking about our friendship, about our book and work together, and about other crisis events in my own life. Fran on the other hand has personal experience of harsh and stigmatising treatment at the hands of others, and we go out of our way to protect against that happening again. It is part of the reason I am more of the “public face” of Team Gum.

Commitment and Motivation

A few years ago Fran and I spent some time coming up with vision and mission statements for our mental health work.

VISION: Our vision is a world where no one is too far away to be cared for or to care.

MISSION STATEMENT: To inspire connections between the ill and the well for a stronger more compassionate world.

Fran expresses her commitment with characteristic simplicity on her social media profile: “Passionate about making invisible illness visible.”

I recently changed my Twitter handle to include the words “#MentalHealth Author and Advocate.” This has brought me some negative feedback from people who see it as self-aggrandisement, or that I imagine I always know what to do or say to someone living with a mental health condition. Nothing could be further from the truth! I thought long and hard before claiming these labels. Doing so acknowledges how central our work has become to my sense of who I am and what I can contribute. No more, no less.

Just about everything I do or am involved in is part of our joint commitment to effect positive change. If I often take the lead it is because I have fewer challenges to face, not because I am more committed or passionate about what we are doing. I am encouraged and supported by Fran at every step.

We bring different things to the party and complement each other well. It is fascinating to me to witness how we have grown and learned from and with each other over the almost seven years we have been friends.


Wednesday 2 May 2018

First Steps: Orientation and Mobility Training and Canes

By Roiben

I was first offered the Orientation and Mobility Training to use a cane when I was a teenager. At that time the last thing I wanted was something else to differentiate me from my peers. I always regretted that decision. As I grew older and travelled further and more often, the idea of something which could help things be a bit better became more appealing. So when, at the beginning of the year, my Sensory Services adviser from the local council suggested putting me forward for Mobility Training I naturally agreed.

Today I had my first meeting with the Mobility Officer and she agreed that a Long Cane would be good for me. I got to try a cane to see how it felt. Even from those few steps in my small flat I felt the potential. I am now booked in for once weekly training in using a cane, with specific focus on stairs, walking in the street and a little on using escalators. The specifics and focus change from person to person depending on individual needs. In my case these were the things highlighted as needed when I described my issues to the Mobility Officer.

So, what is Orientation and Mobility Training and what is a cane? Most cultures are familiar with the stereotypical image of a blind person walking along sweeping or tapping a white stick in front of them. That white stick is a cane. I am focusing on the canes used for visual impairments here — the word cane is also used when referring to mobility aids such as walking sticks.

There are actually four types of cane. The first is the Symbol Cane. This shows that the person holding it is partially sighted, that is they have low but useful vision. It is typically held in front of the person and quite close and is much shorter than the other canes.

The second is the Guide Cane. This cane is longer and is used for finding obstacles in front of the individual. It is typically held diagonally across the body.

The third, the Long Cane, and the one I will be trained in using, is probably most people’s stereotypical view of what a visually impaired person would be using. It is the longest of the canes and you need specialized training in order to use it.

This training is called Orientation and Mobility training (or O & M for short). This instructs individuals who are blind or visually impaired how to travel safely and effectively. Orientation is about knowing where you are at any given time. Mobility is about how one gets safely from A to B. This is the training I will be starting on Monday.

The fourth cane is the Red and White cane. Any of the other three canes can be banded with red and white stripes, and the Long Cane I eventually get will have this colouring. The red and white stripes symbolize that the person using the cane has both visual and hearing impairments. There is a shocking lack of awareness of this despite it being in the Highway Code. Deafblind UK explain it much better than I can and include a link to the specific Highway Code sections, just in case you don’t believe it.

I am excited to start the training but as with anything new, I am also anxious about it. I have done research online into Orientation and Mobility and I have asked people in Facebook groups about their opinions on canes, what the pros and cons are, and what they thought of training. One of the key things I have picked up from this is that canes can be incredibly helpful, although they also draw a lot of attention and the occasional unexpected grabbing of the arm to “help”. I will say here, always announce yourself first and please ask if the individual needs help before dragging them off somewhere!

I was also told that training works best when blindfolded. I have had a panic about this: How am I meant to know what the trainer is trying to get me to do with a blindfold on? How could this possibly work? I have a severe hearing loss and wear hearing aids which typically squeal when subjected to things like blindfolds, phones, ear muffs etc. Even with the hearing aids I am largely reliant on lip-reading to figure out what someone is saying. Even with people I have known for years and who talk clearly and loudly (such as my boyfriend) I need to lip-read to fill in the blanks that residual hearing doesn’t pick up (typically lip-reading picks up 30–40% of speech, if you are good at it).

So yes, I am anxious, but am sure I can let the Mobility Officer know about this. She knows I class myself as Deaf. She is getting me a Red and White cane and in our first meeting, made sure to check I was okay with lip-reading her (not all deaf people can lip-read) and that I didn’t need or prefer an interpreter for switching to BSL (British Sign Language). She also made sure I could see her to lip-read when she stood across the room to show me the primary technique used with the cane (sweeping).

As I am very new to all of this it would be great to hear from more people, whether blind, partially sighted or deaf-blind. What are your experiences of Orientation and Mobility training and the use of canes? Do you have a preference of cane and what are your experiences of using them in the Big Wide World of people out there?


About the Author

You can find Roiben on Twitter (@roiben).