Step Into The Dark To See The Light
9th October 2019
I write this blog as an advocate for the sight loss community. The 10th October is World Sight Day.
Progressive sight loss can be such a constantly changing beast, just as you get used to some deterioration another decline becomes apparent and you emotionally take a step backwards.
I found this rather soul destroying, this is because until 2016 I was not truly acceptant of my sight loss, I was hanging on to the small amount of vision I had as if my life depended on it.
However this had all changed for me by the end of 2016, after training with my long cane and being put into my blindest situation, this for me with RP, is at night, at the moment I only have a very small percentage of sight left, which equates to just seeing shapes, a small amount of light perception and colour which is very bleached out, however I have been night blind since my teens. Training with the cane gave me an opportunity to put myself into the dark and prove to myself that my greatest fear, blindness, is actually my strongest asset. I found the most beautiful sense of peace and relaxation when walking alone at night with my cane, it connected me to my inner trust and showed me that I was indeed very capable of thriving without vision. This was, for me, indeed the greatest breakthrough with sight loss, I became fearless and more alive, in fact I am happier in the dark then I am in the day. My residual vision is so very distracting to me now. I enjoy my life so much more at night when I get to connect with my true self.
I love to go skateboarding at night, I become more fearless, go faster, do tricks and get so much more exhilaration from it, whilst when I skate during the day, there is a sense of hesitance and holding back. I prefer to play my piano at night as I connect with the music on a deeper level, feeling the keys through each finger and becoming part of the sound that is being created, it truly is magical. I often turn the lights off in my art studio and sculpt in the dark, using my sense of touch to create the shapes and contours in the wood I am carving. As a surfer one of my future plans is to go night surfing, I get the most freedom when I’m in the ocean riding a wave, I would love to expand on that sense of joy I get on my board being in the ocean by using my other senses at night. When I surf my vision is a hazy white, I don’t see the horizon or the waves, in fact that is how I see most things during the day, in a very bleached out manner, this can be a real strain on the eyes as they are constantly seeing white or glare, I believe that is why I love the dark so much too, it is so much easier on the eyes.
Since living in this truly accepting way with my blindness, I have found a fearless, joyous and sensory experience that engages me with myself and my surroundings on a whole new level. There is NO fear for my future anymore, as I know there is nothing to fear with total blindness.
If you are someone suffering from progressive sight loss and you are constantly asking yourself this question, “How am I going to carry on living my life when I cant see?”, then I hope this blog gives you inspiration and hope, there really is life after sight loss and as a blind woman who is thriving and loving her life please believe me when I say, you too can find acceptance and let go of the fear just as I did.
Afraid Of Being Alone
11th June 2019
This particular blog was written in the middle of last month, I was working through a lot during that month and many things were coming up for me, I have since reached a point of realisation for which I will be blogging about soon.
Today I would like to share my feelings of isolation. I have always had this fear of being left alone, with no one to love me or keep me company. I feel this can be more illuminated by the progression of my sight loss. One of the most recent progressions for me is that I no longer see peoples faces, I have tried to cope with this change, however I need to work some more on releasing the negative beliefs that surround this situation. One of these beliefs is that I am losing the people I love, this could be tied into my over investing habits, this is where I begin to put relationships before my own needs. I can see this is just an emotional reaction to the fear of losing people, I give so much of myself, feel so deeply and then lose myself in the process.
I had a very interesting visualisation whilst meditating recently. I visualised myself standing on a large floating platform, like a raft, slowly the raft began to break up into smaller rafts and began to float away from me. I was left standing alone on this central piece of the platform, whilst the people I care about started to float away from me. The one thing I did notice however, was that I was still standing, although alone, I could hold myself upright on my own. I take from this a very important lesson for me, I am able to stand alone, take care of myself and feel the solidarity within me. I do not need to give so much of myself away to create solidarity with others, if I can stand still with this and go within, I can find what I need within myself.
I believe that the sight loss over the years has taken so much of my independence, where I have to ask for help or have other people there to support me it can make me lose that inner trust and independence that I already have. To change that thought process and replace it with a more positive, nurturing belief will help me move through this current emotional block.
i also struggle with the fact that I never got to be a mum, thats a whole other blog, in fact it is something I talk about in my book in depth. The fear of being left alone can tie in with the fact that I’ve never had children, to feel that unconditional love, that I can only imagine you feel between a mother and a child. I feel that I will be alone when I’m old, I know I have the greatest husband by my side, but I can trigger myself into the fear of losing him. Nobody knows our fate, I always joke around with him, telling him that I will leave this earth before him! However behind the humour, lays a very deep inset belief, that I really cannot even think about being left with no one. This is another reason to acknowledge I need to work further within my self development so that I can address these feelings and emotions.
I share my mind with you as I feel it is so important to show how, even though I’ve come so far with my journey, there is always more to learn and work on, it’s a continual path of discovery, that will constantly challenge us, yet the challenge is the reward with which we can grow even more from.
Those Old Demons!
1st May 2019
Today I would like to share a part of my history with you. This is a very personal thing to me which for many years I have not been ready to talk about.
I have recently been looking back over the content for my book. I am currently at the second draft stage of this memoir of mine, I am hoping it will be ready to launch in 2020. Whilst re-reading and doing some editing and re-writing I began to feel a shift in myself, a sense of uneasiness. I believe this is because I was revisiting parts of my life that were very difficult times. I remember whilst initially writing them there were a lot of tears and heartache as I spilled my inner most feelings onto a page. However writing this book has been so healing and so cathartic for me too. It has indeed brought up old feelings but I know they have been resurfaced for a reason.
I have had 2 demons in my life, behaviours that I am not proud of. I have self harmed and abused my body, this was at a time of my life where I wasn’t coping with my sight loss. The first behaviour began shortly after my diagnosis with RP, I began to drink too much. As an art student of 19 I had already began my relationship with alcohol, if I wasn’t at college I could be found down the pub with the rest of my college friends. After having to leave university, losing my drivers license and the end of a serious relationship on top of the diagnosis, I began to drink in a very unhealthy and destructive way. This carried on for about 2 years. You know you have a problem when you are drinking on your own just to get through the day. I am very proud to say that I was able to pull myself out of that damaging behaviour and I now only ever drink on the odd special occasion. I used the alcohol as a form of escapism, I didn’t want to feel the pain I was in about my sight loss, so I would just drink until I couldn’t feel anymore. Of course, this is not the answer to any trauma, I now know to truly feel the pain is the route of healing, acceptance and self worth.
I stopped drinking but it was unfortunately only to be replaced by yet another unhealthy, damaging and destructive behaviour. My eating disorder began in my early 20s, this, like drinking came from a deep set belief of self loathing. I stopped eating meals, got tangled up in laxative abuse and became anorexic. At my very worst I was 5 stone and so weak I would faint. I do not know how I managed to keep myself from being admitted to hospital, the loved ones around me at that time were having such a hard time trying to get through to me. In truth, by not eating I used to believe that I was taking control of my life and what was happening within it, however the actual truth is that like any addictive behaviour you don’t have any control, it just controls you. As time has gone on I have battled this demon, I am a recovered anorexic, since learning to love myself, finding self worth and knowing that I am good enough has given me the power to beat my eating disorder. Even now I can be triggered into the old mindset, this can raise its ugly head in times of stress or uneasiness, this is when I need to call upon that inner connection that comes from within, to empower myself with how far I’ve come and feel the love I now have for myself, this prevents me from returning to any damaging old habits. It is an on-going process for me, just like self discovery and awakening is a constant opening to growth.
One of the biggest hurdles to overcome when on the road to recovery is the sense of SHAME, this can be such a difficult, negative and restricting belief. The shame of our behaviour will only hold us in that damaging place, we must learn to find self forgiveness, this is the key, to accept ourselves whole heartedly and forgive ourselves will help us become healthy.
I share this with you as I know there are people in my life I love and care about that are going through or have gone through similar experiences. Perhaps you are going through something similar yourself, I want to let you know you are not alone and that if you can recognise that the problem does not lay within the addictive behaviour but it is a reaction to something within you that needs addressing. It’s a hard road when you begin that journey of self realisation but it will be the most rewarding thing you will ever do. To understand ourselves and heal ourselves by getting the support that we need is an intrinsic part of our recovery.
Between a Rock and a Hard Place
7th April 2019
I’m sharing my current deterioration with my RP condition and really reaching within to truly feel my feelings on how my residual vision is. I think its best described as being stuck between a rock and a hard place, I’m so much happier with no vision at all at night, what is becoming hard is the way with which the progression seems to be taking me.
I once met this fabulous old Italian guy many years ago whilst working in Italy. He had RP, he told me that with this disease you never see black, instead you see white. At the time I never really understood this, I always had this preconception that when I lost all my sight I would see black. Now I completely get it, as the vision if you can even call it that, I have left, seems to be going into an abyss of white, everything is so very very faded. Its kind of uncomfortable too, the white film is so glary. At night when all I see is black it is like a relief, I become content, fearless and completely relaxed. However this makes me feel negative towards the vision I am left with. I cannot become nocturnal and just live my life at night, I know I have to make peace with this latest situation.
My last blog was the audio blog about vulnerability, this really is a continuation of that. I am reaching deep within to find my inner wisdom, I know there will be a better, healthier, more positive way to get through this current decline other than wishing i could not see anything anymore. It is one thing to be at peace with full blindness, this I am proud to have found that acceptance, however it is another thing to wish you were completely blind all of the time. This is really only because of the inner trust and belief I have found in the dark. I have to find a way to cope with my sight loss during the day.
My lessons are for my greater good and ultimately show me the answers that lay within.
The solution is always out there!
21st Feb 2019
Hi everyone! Welcome to the Beyond Vision website, this blog sits really well with what this website advocates. Adaptivity is a very important part of living a limitless life with sight loss. As our vision fails us and begins to become a mere memory, we need to call open our other skills. An adaptive mindset is one of the best skills you can open up to. I remember way back when I was stuck in a very old and limiting belief pattern, this would just keep me in a really unaccepting place, adjusting to change was never really my strong suit! I was very one dimensional with the way I used to think of things, I believed that if you didn’t do things in the same way as you used to be able to do them, or indeed how you had been taught to, then you no longer feel you can do that particular thing. The problem with that sort of attitude is that it just increases the LOSS factor with sight loss. Having to continually give up the things you used to be able to do is very depleting and just makes living with sight loss even harder.
When I finally woke up through my self development work I realised that the only thing that was stopping me from continuing with the things I enjoyed was me, not the sight loss. There is always solutions to be found, you just have to change the way you think about how you can do things. With an adaptive mind you will learn to accept that although you may not be able to do things in the same way as you used to, there are others ways, for example, I have been a runner for most of my adult life, I enjoyed long distance road running, I never was competitive with this, it was always about personal fitness. However, as the years went on and my sight loss progressed, it was becoming more obvious that road running was no longer a safe option for me. I was having more injuries due to tripping and falling up curbs, crossing roads was also a danger and I would run into obstacles. I finally bit the bullet and bought a treadmill. I struggled initially accepting that I could no longer road run independently, however as my mindset changed I began to open up and be thankful for the treadmill, this machine was not my enemy, it was my ally, I soon realised that I could still run long distances and keep myself fit by using my treadmill. There is also buddy running services available, this is where you run with a sighted guide, usually you are holding a tag to attaching you to your runner. So that is another solution too.
Another very recent example of finding adaptive solutions is when I was parted from my beloved MacBook, it had to go away for repair, I had just committed a month to writing some more of my book, I also had the Captivating Magazine article to write as well. My Mac is my most accessible piece of technology, in fact I am writing this on the Mac right now!
It was 2 of my VI friends from the States that suggested a way of adapting that I hadn’t thought of. I have an iPad, the first friend suggested getting a bluetooth keyboard that I could pair up with my iPad, my other friend suggested using voice memos on my iPhone to dictate what I wanted to write. Both of these were excellent solutions, they helped me to think out of the box. I bought a small bluetooth keyboard, in fact it was about the same size key layout as my MacBook keyboard, this made it even easier to transition to, I had the voice over on my iPad and pages, which was the programme I was used to writing on. This was the perfect little set up and turned my iPad into a mini laptop. I was Able to carry on with my writing work until I was reunited with my MacBook.
So, there are 2 examples of practical solutions that enable us to navigate through sight loss in a much more positive manner. I now see my adversity challenges as lessons to find more adaptive solutions and open to all possibilities. Embrace the new way of doing things and let go of the old ways, this will allow you to continue living the life you want to live.
7th Feb 2019
I am blogging today to share the amazing experience I had when we bought our new TV.
Over the last few years I have been watching less and less TV, as my sight loss progresses further, I find myself unable to follow what is going on whilst trying to watch the TV. Although we have the audio description on, this isn’t available on all programmes yet.
We had our 37inch TV for nearly 10 years, so thought it was time to buy a new one. A bigger screen may help my situation and also what with all the new technology out there now, I felt hopeful that buying a smart TV would be a good solution.
We initially went to a very well known department store, as I had made many purchases there before. We were mindful of my needs and explained them fully to the assistant, we purchased a 55inch Sony Bravia, we were told it had all the requirements that we were looking for.
Below is a list of the specific accessibility requirements needed:
Audio description option
Voice recognition to change channels, interact with apps
Remote to be bold font
Unfortunately the Sony TV we were sold did not have the voice recognition capabilities to change channel, we did not get to see the remote, once home it became apparent that the remote wasn’t that helpful. The apps were not accessible either. It did have the capability to turn the volume up or down, however this was not enough assistance for my needs. With this we returned the TV and was refunded.
We then decided to go to another very well known electronics shop, after finding an assistant and explaining my situation he really wasn’t of much help and was showing us TVs that would not meet my needs. We soon gave up at this particular store!
We then, after beginning to feel rather despondent, went to a smaller store, we knew that this shop was very good as we had bought our stereo from them in the past.
We found an assistant and I told him I was a registered blind person and was looking for an accessible TV. With this he promptly told me “So am I”. I couldnt believe this, what was the likeliness of finding an assistant who fully understood my needs because of his own visual impairment. He was amazing, he told us the makes of TVs that were accessible, he then set up a demo of an LG, he demonstrated and spoke us through how the TV worked and all of its additional accessible features. This was the most helpful, informative and accessible assistant I’ve ever come across. It goes without saying that we bought a 55inch version of this TV from him.
I was so impressed with this assistant, that I went and found the manager of the store and praised him on this wonderful assistant he had working for him.
I believe this experience demonstrates the need for stores to have an accessibility expert working for companies, after all, we live in a very diverse world which includes all individuals, able or disabled, we all have the right to be catered for in the consumer world and all needs should be considered as a consumer.
Just to add to my absolute admiration and gratitude, this wonderful assistant rang me up later that week to see how I was getting on with the TV, NOW THATS WHAT I CALL GOOD SERVICE!
Recommended accessible TVs for the visually impaired:
LG smart TVs with Magic remote capability
Samsung smart TVs
4th Feb 2019
Surfing was always something that appealed to me – I loved the idea of it, the culture, the fashion – when I was younger I often wore surf-style clothing. But when I was diagnosed with retinitis pigmentosa (RP) at the age of 19, I accepted that it was something I would never be able to physically do.
I went travelling in my mid-twenties, and visited popular surfing spots in amazing locations such as Hawaii, California and Australia. I sat on the beach, longing to take part, but feeling that it was something so far beyond my capability as to be impossible.
Then, four summers ago, my husband suggested that we go down to a beach in Broadstairs with my nephew, hire some equipment, and see whether there might be a way to make it work. We put on wet-suits, picked up our boards and walked out into the surf. It only took me two sessions to be able to stand up on the board and ride a wave, and from that point on I have never looked back.
In those early days, my husband and nephew would position themselves either side of me, walking me out towards the horizon, telling me when to turn around and talking me through the waves as they approached. Often, when it was time to catch a wave, my husband would shout ‘Nalu’, which is the Hawaiian word for wave. As time when on, I found that I no longer needed help and could surf completely independently. You get a feel for the ocean, and I instinctively know how and when to turn and catch a wave.
I have found surfing to be one of the most therapeutic activities I do. Quite apart from the health benefits of fresh air and exercise, there is a feeling of freedom when I’m riding a wave that I don’t get anywhere else. Rushing through the water with no obstructions in your way is an incredible feeling. I also enjoy bobbing around in the ocean waiting for a wave. Those of you who read my previous blog post about mindfulness will know how important I think it is to be present in the here and now, and being in the ocean simply waiting for that next wave is a great way to focus the mind.
You may want to give surfing a go yourself. I would recommend arranging lessons with a professional to begin with, and it is important to take safety advice and precautions – personally, I wear an armband which indicates that I have a visual impairment and I tend to surf a little apart from other surfers to give myself sufficient space. You could also look into organisations which specialise in accessible surfing, such as Healing Waves on Jersey and Surfability in Swansea. Enjoy!