Do you realise, our OOKP suport service is 1 year old this month. So, lets have a little birthday party from Stevie Wonder. Click the video below to celebrate!

- INTRODUCTION -

Welcome back to your monthly newsletter magazine, dedicated and produced for OOKP patients. Please consider this YOUR magazine, written for you, on topics you choose and directed by your feedback. We want to fill its pages, with all the information you wish to know regarding your OOKP journey.

This is only achievable with your input and feedback. So, please contact us giving suggestions for articles and content you wish to be included. Also, please give feedback of how we can make this newsletter better.

If you like our goals, why not become a volunteer and help us research, write and produce the magazine!

If interested, email us at

ourookpservice@gmail.com

This is our new, dedicated email address, so please enter “Newsletter” in the subject line.

Or visit our website below and click “CONTACT US”

www.ookpsupport.org

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- TABLE OF CONTENTS -

* Introduction

* Editors Update

* Pre-OOKP Surgery

* Managing Emotions & Doubts

* Post – OOKP Surgery

* Business Opportunity

* Support Group Mission

* Technology News

* Wellness Corner

* Community Corner – Your Stories

* Upcoming Events & Resources

* Contributors Praises

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EDITORS UPDATE

Hi Guys.

Welcome to issue 12 of the OOKP newsletter, VISIONARY HORIZONS.

It seems conversations are really taking off now and there are some very interesting topics arising. This is fantastic so keep it up.

Do you know, we are 1 year old this month, so a big thank you and birthday wishes to everyone who has been involved and allowed this to happen. Let's celebrate this with Happy Birthday wishes from Stevie Wonder.

Now, I’m asking for your help again. I know, such a pain lol. I’m currently taking a course, so I can write my own apps for Apple and Android phones. I’ve just been given my assignment to write an app to help a community and I thought our community would be a great place to start.

So, can you give me as many suggestions of apps you would like on your phone, preferably to do with assistance with our OOKP journey, which are not available in the app stores.

By giving suggestions, I can then choose one to help with my course. They don’t have to be basic, I need to tax my skills, but they don’t’ have to be too complex as well, for example, navigation, as this is far too complex for my little brain.

PLEASE, GIVE AS MANY SUGGESTIONS AS POSSIBLE TO HELP WITH MY COURSE AND HOPEFULLY, I CAN CREATE THE APP AND OFFER IT FREE TO ALL OUR MEMBERS, ALONG WITH ME OBTAINING MY QUALIFICATION.

I know I can rely on our community to come up with some great ideas, which others have not thought about and this will hopefully impress my tutor.

I think that’s it for this month, so continue reading and see what we have on offer

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PRE-OOKP SURGERY – UNDERSTANDING HOW DECISIONS ARE REVIEWED OVER TIME.

Before OOKP surgery, patients sometimes assume that once a decision has been made, it remains fixed. In reality, treatment decisions are often reviewed and refined over time as new information becomes available. This article explains how and why decisions are revisited, and how this ongoing review is designed to protect patients rather than delay progress.

Understanding this process can reduce confusion and prevent the feeling that plans are constantly changing without explanation. Review is a sign of careful care, not uncertainty.

Key aspects of decision review include:

•  New Clinical Information – Test results, healing patterns, or changes in health may prompt a reassessment to ensure safety.

• Team Discussion – Decisions are often reviewed collectively by the multidisciplinary team to benefit from multiple perspectives.

• Patient Circumstances – Changes in personal circumstances or support systems can influence timing or approach.

• Risk Reassessment – As time passes, risks and benefits may shift, requiring updated consideration.

• Patient Involvement – You have the right to be informed when decisions are reviewed and to ask what has changed.

Decision review is part of responsible medical care. When plans evolve, it is usually because your safety and long-term outcome remain the priority.

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MANAGING EMOTIONS & DOUBTS – WHEN HOPE FEELS DISTANT, RATHER THAN GONE.

At times, hope doesn’t disappear completely — it simply feels far away. This emotional state can be difficult to describe and even harder to explain to others. This section explores what it means when hope feels distant, why this happens, and how to stay emotionally steady during these quieter, heavier periods.

Feeling distant from hope is not the same as losing it. Often, it is a sign of emotional exhaustion rather than despair.

Ways to navigate this experience include:

• Recognising Emotional Tiredness – Long-term stress can dull emotional response without eliminating hope itself.

• Lowering Emotional Demands – You don’t need to feel hopeful every day to be moving forward.

• Using Neutral Ground – Aim for calm rather than positivity during difficult periods.

• Borrowing Hope from Others – Hearing steady reassurance from peers can help hold hope temporarily.

• Trusting Emotional Cycles – Emotional distance often passes when pressure is reduced.

Hope does not always feel bright or motivating. Sometimes it is quiet and distant — and that is still enough to carry you forward.

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POST-OOKP SURGERY- ADJUSTING TO CHANGES IN SOCIAL IDENTITY.

After OOKP surgery, some patients notice subtle shifts in how they see themselves socially, and how others relate to them. This article explores changes in social identity, why they occur, and how to navigate them without losing your sense of self.

These changes are often gradual and can feel confusing if not named or understood. Awareness helps restore confidence and clarity.

Common experiences include:

• Changed Expectations from Others – People may treat you differently, sometimes with increased caution or curiosity.

• Internal Identity Shifts – You may feel caught between your “before” and “after” selves for a time.

• Navigating New Conversations – Deciding how much to share about your journey becomes a personal choice.

• Reclaiming Familiar Roles – Returning to roles that matter to you supports identity continuity.

• Redefining Confidence – Confidence often grows from authenticity rather than appearance or performance.

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Social identity evolves, but it does not disappear. With time, many patients find a renewed sense of self that feels grounded and authentic.

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- BUSINESS OPPORTUNITY -

If you wish to learn a new vocation, I offer a course, teaching individuals how to become a “Blind Awareness Trainer,” where you train front-line staff, to correctly assist blind and visually impaired customers.

This is my vocation, where earnings are considerable, it provides fun and interesting social opportunities and I increase the number of people who can offer assistance to visually impaired individuals.

If you’re interested, send an email with “TRAINING” in the subject line, for more details

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- THE SUPPORT GROUP MISSION -

Our mission, is to empower people facing OOKP (“tooth‐in‐eye”) surgery and their families, by providing clear and accessible information, practical help and a caring community. We exist, to relieve the stress and isolation of this rare procedure, by advancing patients’ health and well‐being, through education and support. In practice, we aim to give everyone affected by OOKP, the knowledge, tools and emotional support they need to feel informed and confident about their care. This means offering up‑to‑date guidance on the emotions of surgery and follow‑up support, building peer networks to share experiences, involving families in the process, and partnering with eye clinics and charities, to deliver the best possible outcomes. This can only be achieved with YOUR help!

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TECHNOLOGY NEWS – DETERMINING WHEN TECHNOLOGY IS NOT THE RIGHT TOOL.

Technology is often presented as the solution to every challenge, but there are times when it can add complexity rather than support. This section explores how to recognise when technology is no longer helpful, and how choosing simpler alternatives can protect wellbeing and independence.

Knowing when not to use technology is as important as knowing how to use it.

Helpful considerations include:

• Noticing Frustration Levels – Persistent frustration is a sign a tool may not be serving you well.

• Choosing Reliability Over Features – Simple, reliable tools often outperform complex ones in daily life.

• Reducing Cognitive Load – Fewer steps and decisions conserve mental energy.

• Allowing Human Support – Technology should supplement, not replace, human connection.

• Giving Yourself Permission to Stop – Abandoning a tool that doesn’t work for you is a valid choice.

Technology should enhance life, not dominate it. Choosing simplicity can be a powerful form of independence.

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WELLNESS CORNER – LEARNING TO IDENTIFY UNCERTAINTY WITHOUT RESISTING IT.

Uncertainty is an unavoidable part of long medical journeys. This section explores how resisting uncertainty can increase distress, and how learning to sit with it gently can reduce emotional strain and increase resilience.

The goal is not to like uncertainty, but to coexist with it without constant tension.

Ways to practise this include:

• Naming the Uncertainty – Acknowledging what is unknown reduces its emotional power.

• Staying in the Present – Bringing attention back to what is known right now.

• Limiting Future Projections – Avoiding repeated “what if”scenarios that fuel anxiety.

• Using Grounding Practices – Physical grounding helps stabilise emotional responses.

• Trusting Past Coping – Remembering times you managed uncertainty before builds confidence.

Uncertainty does not mean danger. With practice, it becomes something you can carry without it overwhelming you.

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COMMUNITY CORNER: YOUR VOICE, YOUR STORIES

It’s that section again. I know you love this bit. Wasn’t Caroline’s story interesting. Having a true account of how OOKP has affected someone in their journey through life.

But, I know you are wanting to see what happened to me this month, so here we go.

So, I was training front line staff and had met a great woman called Gill, who had my sense of humour and gave me the hint of us having a date and seeing where it went from there.

As I said in my last post, I knew I would meet her again, as my training was ongoing for council employees. This was great news for me and I tried to work it so it would not be 6 months before I saw Gill again. It’s not what you know, it’s who you know (smile)

It was about 3 months later, while standing outside having a cigarette, I heard a voice come from the car park. It said, “do you remember me?” I did! It was Gill, but I have never been good at remembering names. Many of you know this as I call males I meet “mate” and women I meet “love.” This is just a normal way of greeting people in the North where I live. But, I digress.

I said, “is it the 6ft blonde” and she finished the sentence by saying “yes, with the great personality and the winning smile.” Instantly we were back into the banter and we both started laughing.

I asked how she had managed to get back on the course again in such a short time. She said, there had been some changes. This gave me a feeling in my heart. She said she had changed jobs, so they insisted she attend my training. She also said she was now free and flying without wings, so if I fancied a drink after the course, she would love to join me.

How lucky was I? I got to see Gill earlier than I thought and I could try working my magic on her, to see if we could have some time together. I am sure many of you know the outcome, but just calm down a bit, I will tel you the full story. (smile)

So, I was in a bit of a dream all day. Don’t worry, I had performed the training course so offten, I could deliver it with my eyes close. Ooops, maybe not the perfect saying for a blind man. LOL

So, the course finished, the feedback was overwhelmingly positive and now it was time to sit with Gill, in a bar and find out more about her and see if we had the connection we both believed we had from when we met on the first day.

Guess what? It turns out we did. We had a few hours together, laughing and finding out more about each other and we both liked what we were hearing. So much so, we actually arranged to meet again. I must have made an impact, because Gill invited me to her house and said she would cook a meal for me. I know, it’s my natural magnetism.

This is when I met Gills eldest daughter. She had 2 daughters and a son, all who were grown up with their own families. I’m sure her eldest worked for the CID, because the number of questions I was asked in that 20 minute car journey was unreal. Still, I’m sure she was just being protective of her mother.

So, me and Gill had a great meal and a fantastic night. No, calm your dirty minds. Not in that way. Well! Maybe you know me better than I thought (smile)

We continued the relationship and found we had so much in common. In fact to prove this, we actually had a 22 hour phone call, finding out all about each other.

So can you guess what happened next? Maybe a silly question? But, I did the correct thing and got down on 1 knee and asked Gill to marry me, just 5 months into our relationship. Obviously she said yes. Who could resist such a catch as me. LOL

As my house was larger, we decided to sell Gills house and move in together. After doing this, we then arranged the wedding and honeymoon. But, I think this is enough for your brains to deal with at this moment.

Next month we have a story from the carer of a member, so this should be interesting, meaning you’ll have to wait until the following month to see how we went on our wedding, but just to give you a clue, it ended with us having a 5 week honeymoon, travelling the world. See, I told you I was a catch (smile).

So, I will be back with more about me losing sight and having my OOKP operation.

Until then, take care and speak soon

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- UPCOMING EVENTS & RESOURCES -

As we develop the support service, website, newsletter magazine and WhatsApp group, we want to produce podcasts, webinars, workshops, fundraising events and other accessible materials members can access.

If you have news to share, please let us know by email, and we’ll advertise it here, for all to access and join. The more we can inform people, the more this service will grow. Lets make it a service to be respected, one which others aim to imitate for their group.

Keep communicating with us and others, it’s the only way we learn and progress, to make life easier.

So come on all you budding bakers, crafters and sales gurus, lets get some events planned to raise money. Maybe, we can raise enough money to have a Christmas trip to London, to see a show, after we ‘ve discussed our progress.

“Sound good? Only we can make it happen”

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Website

www.ookpsupport.org

Phone

07483 880268

E-Mail

This is our new, dedicated email address.

ourookpservice@gmail.com

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CONTRIBUTORS PRAISES

A big thank you to the following, for helping to produce this monthly newsletter and assisting with the services.

Martin Jones, Rotherham, Editor

Caroline Williams, Newcastle, Communications Officer