Wednesday 26 September 2018

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).


Monday 24 September 2018

Announcing Our New Creative Partnership with Eliezer Tristan Publishing

Fran and I are delighted and proud to announce that we have signed to Eliezer Tristan Publishing for an exciting new project. Watch this space for further details!

Co-founded by Stigma Fighters CEO Sarah Fader and Vice President Sarah Comerford, Eliezer Tristan Publishing publishes nonfiction and fiction largely focusing on survival in its many iterations.

We encourage you to follow the ETP team on their website, Facebook, Twitter, and Instagram.

Our first book High Tide, Low Tide: The Caring Friend’s Guide to Bipolar Disorder is published by Nordland Publishing.


Wednesday 19 September 2018

Follow Your Passion: A Merry Meeting

I bumped into an old friend and former colleague this morning as I was having coffee at Regular Jo’s at Tynemouth Market. The last time I saw Paul was in similar circumstances. He saw me one Sunday afternoon as I was sitting outside Starbucks near where I live. That was maybe eighteen months ago. I know our book High Tide, Low Tide was out, so it must have been after September 2016.

It was great to see him again today and we had a good catch up, sharing what each of us is doing these days, and checking in on folk we know or knew.

Paul left to follow his dream of working for himself at something he loves, and it is clear it’s worked out well for him. That was great to see!

On paper at least I’m doing much the same work as I was doing the last time we met. (As a matter of fact I have been doing much the same work since Paul left, which might be ten years ago now.) But I am not the same person I was then, and I can honestly say I am much happier since I started help shape the mental health initiatives we have going on within the company.

At the moment this is only a minor aspect of my role – I remain primarily engaged in the “techie stuff” of applications support – but the mental health side has transformed how I feel about “going to work” each day. It is something I am passionate about and want to develop further, with the ongoing support of colleagues and management. I think that came across to Paul as we were talking. It’s hard to hide the light inside when it burns so brightly, as Paul’s did when talking about his work and life.

So, it was a merry meeting: each of us “living the dream” and looking ahead in hope to wherever our respective journeys might take us next.

Not a bad way to spend a Saturday morning!


Wednesday 12 September 2018

Letters to Daniel

By Amy Leigh McCorkle

Dear Daniel Craig. This journey to wellness started long before that. But this leg of the journey started with a blog I used to tell my story and share an everyday look at what life with bipolar disorder looks like. So, Dear Daniel Craig was a confessional for me. I let it all hang out. The good, the bad, and the downright ugly.

I should note here I have not met Daniel Craig. And that, as far as I know, he has no idea I even exist. Still, the simple act of using my favorite actor as silent audience seemed to be final piece in a multi-pronged treatment plan. There was medication, group and individual therapy (still is), and the support of amazing caregivers. This blog, Letters to Daniel, soon took on a life of its own, and it made me actively advocate.

People responded in a big way. They reached out to me saying I was telling their story. Or that I was telling their loved one’s story. It didn’t stop there. I gathered the letters up and turned it into a bestselling memoir of the same name. On Amazon it hit number #2 in the USA., #3 in Japan, #4 in Canada, #6 in Australia and #21 in the UK; and the top 100 in the Netherlands and Germany. I then took the “greatest hits” and narrated the letters in a documentary of the same name. It went on to win awards on the festival circuit.

Then with my caregiver and writing partner I adapted the memoir to an award winning screenplay. We now have a producer in Cincinnati, Aaron Allen of Extreme Christian Entertainment, signed on. He is running a GoFundMe for the pre-production costs. My caregiver Melissa Goodman and I are set to direct.

The exciting thing is I attended Action On Film International Film Festival and there are two A-List Producers who are interested in Letters to Daniel.

Letters to Daniel tells the story of my journey to being in recovery from breakdown to my success as an artist. It is told through the prism of my friendship and writing partnership with my caregiver. It cannot be overstated how important Missy was and still is to my recovery. There have been other caregivers, but she was on the front lines every day for the twelve years we shared an apartment as friends. She didn’t run. She didn’t hide. She chose to be my friend in the darkest of days and when I’m symptomatic now she’s still my best friend and knows what to do.

This film has been a five year dream. To be on verge of making it is thrilling. To be on verge of it possibly going mainstream has been weird but really exciting. Right now we need the pre-production costs covered. That shows the big time producers we’re not just play acting.

I remember one night watching the Soap Opera Digest Awards. Accepting his award, Maurice Benard said to all manic depressives out there if I can do it so can you. I really to needed to hear that. My dreams seemed to be lost. But here we are. Eighty-six awards and several scripts and films later Missy and I are on the verge of something big, and I would have never gotten there without her.

About the Author

Amy Leigh McCorkle is a bestselling and award winning author, blogger, screenwriter and filmmaker. With 23 published titles, two successful blogs, and a myriad of scripts she has also directed the stigma busting Letters to Daniel: Breakdown to Bestseller and All In the Family. She makes her home with her parents and her four year old tabby Luke. In her free time Amy likes to follow the University of Kentucky Wildcats.

Support Amy’s project at her GoFundMe page.

You can follow Amy on her blog, on Facebook (personal page | Letters to Daniel), on Twitter (@amylmccorkle), and on Instagram.


Tuesday 4 September 2018

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


Saturday 1 September 2018

An Open Letter to My Mum

Dear Mum.

It’s been a while since I wrote you. Six months. What was the last thing I sent you? A postcard, probably. Someone — one of your sisters, my aunts — told me a while back that my letters to you went unopened. Hence the postcards: nothing for you to open (or not open), a pretty picture for you to look at, and less aching white space for me to fill each week. It made it easier — for me at least. Nothing too heavy. News from up here in the north. Family. Friends. Work. Then best wishes for your wellbeing and family down there.

Phone calls from me ceased when you could no longer take them. When you could no longer remain awake at the phone or even, perhaps, know who I was. You used to love texting, before illness took its final hold, but the special large screen phone we got you so you could take and make calls from your room languished unused and uncharged.

I cherish the times I came to visit with you, on my own or with Pam. The time I took you to Washington Wildfowl Trust to see the ducks. Holding your hand. Sitting with you in your room while you slept. I remember the moment (not precisely when but how it felt) when the question “When will I go down next?” shifted into the knowledge I would not.

And then the phone call telling me you’d gone. A week or two of uncertainty, doubt, fear. Then plans to be made. Hotel rooms and a hire car. Routes. What to wear. That was okay. I’m good with that stuff.

And then there I was, back in Liverpool one last time. Squeezed in the back of the funeral car. Your face staring at me all the way to the church from the framed photo they’d propped at the back of the hearse. Carrying your coffin — no weight at all really — up the aisle of the church I remembered so well. The priest’s eulogy. “She was a saint. Literally, a saint. She always put others first.” And I wanted to scream.


I didn’t scream out, of course. I stayed quiet in my seat. I own my share of the blame. The depth of your need terrified me and I left you to get on with it all. I wasn’t there when you needed me to be. It was easier to pretend I didn’t notice. To visit occasionally and then not at all. To phone occasionally and then not at all. To write letters, and then postcards, that said very little and needed no reply. I’ve learned a lot about being there these past years but too late for you and me. There is no going back but I would do better by you now.

I don’t believe these words will find you now any more than the postcards did. You are gone. Not gone somewhere. Just — gone. But there are tears in my eyes and perhaps that stands for something.



Image by Andreea Popa at Unsplash.

Originally published September 2018 by Stigma Fighters.