I am currently awaiting surgery for my fourth onset of a middle ear disease called ‘cholesteatoma’. http://www.nhs.uk/conditions/cholesteatoma/Pages/Introduction.aspx This destructive disease is effectively a ball of skin cells which grows inside the ear eating everything in its path, including bone. Nice! Although the ball of skin cells resembles a large tumour it isn’t cancerous, but it must be removed surgically.
Most cholesteatomas are slow-growing but they do cause a lot of damage. In my case the recurrent disease has destroyed my balance organ and made me almost completely deaf in my left ear. The surgery I’m waiting for will cure the cholesteatoma but in doing so it will make my balance worse and leave me with no hearing at all on my left side. If untreated the disease will eventually find its way into my brain, so surgery is my only option.
So I’m in a strange position at the moment knowing that I’ll have an operation next year which could severely compromise my mobility and independence – at least in the short term. My surgeon told me that I will have to learn from scratch how to walk and balance, without a balance organ. With no useful sight, and therefore no visual points of reference to help me walk, I am quite nervous about what it will be like post-surgery. So I’m taking a proactive approach in my preparations.
At the moment my balance is quite poor, and I walk as if I’ve had three too many. I’m often stumbling and swaying, trying to counteract the effects of vertigo. My balance began to deteriorate in March this year. At first it unsettled my guide dog Dash, and he lost a lot of confidence.
He takes his work very seriously and I think he felt responsible for my tumbles and stumbles. So I had to scale back his harness work and rely on sighted companions to get out and about. But over the last few months Dash has adapted really well and now walks very cautiously, checking constantly to see how I am. He no longer gets overly anxious in harness, and if the ground looks uneven he’ll simply stop and wait for me to adjust my balance before continuing. Dash has always had amazing intuition. My Guide dog trainer has advised that we don’t go too far without accompaniment as I have had a few nasty falls which potentially put Dash in danger as well as myself. It’s not easy adhering to this advice because a guide dog is essentially a freedom ticket. So restricting our walks has been tough. In September I learned that things are going to get even worse from the mobility point of view, and this was a real knock.
But I must find a way round it. In Summer this year I met a lady with MS who was training with an assistance dog, and she mentioned that Guide Dogs were making her dog a special harness to help her balance. I remember wondering at the time if this might come in useful for me. Subsequently I have done some research and discovered that in the US (and increasingly in the UK) there are ‘balance dogs’ trained specifically to help people with chronic balancing problems. http://www.keystonehumanservices.org/susquehanna-service-dogs/balance-dogs.php
In my view Dash has already stepped up, of his own accord, and helps me in ways beyond his guide dog training. But I am going to make enquiries about whether his harness can be adapted so that I can use it as a stabilizer if needs be, when we’re out and about.
I have spent most of today researching walking aids. I don’t need a walking stick but I do need something to stop me toppling over when I lose my balance. This will help Dash to stay confident and keep us both safe. But trying to find something discreet, aesthetic and useful has been really hard! After much hunting I’ve come up with a Sabi walking cane http://www.designed2enable.co.uk/product/sabi-roam-sport-cane and a tri support ferrule, which I need to buy separately. The ferrule has three flexible feet to make the walking cane even more stable. I want something that I can hook over my arm on stand-by to access quickly if I start falling.
This situation reminds me of when my sight was starting to fail and I was not safe going out and about without a mobility aid. I was crippled with self-consciousness and hated every second of my first journey with a long cane. I felt so blind, even though I did not think of myself as blind. I suspect that my first walk with a balance aid will make me feel really disabled, even though that isn’t how I define myself. But in these situations we’re faced with a stark choice. Accept it, embrace it and get on with living. Or deny it, hide from it and never set foot outside the front door. If I don’t accept that I need to use a balance aid I will not be able to go out safely with Dash, and we’ll lose our freedom. Having had a guide dog since 2008 I am not about to give up my mobility and independence! Absolutely no way. Someone said to me today that using a walking aid isn’t a sign that I am disabled, it’s a tool to enable me to carry on regardless. And she was right. We all need to make adjustments as we go through life and I’ve always felt that obstacles are there to get around not to stop me in my tracks. So I need to put my philosophy into practise.
Recently I spent a few days at the Calvert Trust activity centre in Exmoor http://www.calvert-trust.org.uk/exmoor/exmoor taking part in a series of outdoor challenges. I am by no means athletic but I completed every single challenge, including rock climbing. The great thing about going somewhere like Calvert is that it reinforces a ‘can-do’ attitude and that ‘can-do’ ethos stays put in your psyche for some time. So back home in Hereford my priority is to get back into my long solo treks with Dash and find a way of overcoming my deteriorating balance. My Guide dog trainer is visiting in a couple of weeks time so I hope to show her what Dash and I can do! If she sees that we are safe when we’re out together then I am on the way to freedom again.
My operation will not be soon, given the crisis that Hereford County Hospital is in at the moment. So I am going to use the time wisely and prepare myself for what lies ahead. So far on my list I have: Find out about adapting Dash’s guide dog harness; Start using a balance/walking aid; Make my home environment clutter-free and safe; Learn the Alexander Technique http://www.stat.org.uk
I have an acute sense of smell. And the truth of the matter is, I stink.
On May 10th 2014 around 100 people gathered to celebrate the Past In Mind project and the launch of Kate Lack’s fascinating book: Past In Mind: A Heritage Project and Mental Health Recovery.
Whitbourne Village Hall was buzzing with excitement and anticipation as faces old and new filled up the room.
It was very heartwarming to meet up with people we hadn’t seen since last year, and to hear their news. Past In Mind became a very close-knit group and we all believed in the project so much that it has left a definite imprint on each of us.
After some luxurious refreshments there were a few short presentations from a cross-section of people involved with the project. True to the ethos of Past In Mind this included some thoughts from volunteers…
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I have had my guide dog Trudy (AKA The Hereford Hoover) for just over five years, and we’ve reached the time that I’ve been dreading most – her official retirement.
When Trudy bounced into my life I was living in a residential home and had got used to the fact that I would probably be there forever. I rarely went out on my own, and feared strangers to the extent that I could not tolerate busy streets or crowded rooms. I spent most of my time indoors listening to music or the radio. The big wide world was virtually inaccessible to me.
Of course the furry whirlwind that filled my small room in May 2008 changed all that. Time for a cliché – it really was love at first sight. I knew Trudy was special. I knew she would radically change my life. It was breathtaking. Three days after that momentous first meeting we began our four weeks training together, and life has never been the same since.
Less than two years after training with Trudy I moved into my own flat and immersed myself in a new life. With Trudy’s help I overcame my fear of people and trained as a volunteer Speaker for Guide Dogs. Sometimes I wonder if I am the same person when I give a talk to an audience. I remember the me who refused to go into a room if there were more than two people in it.
Before I had even met Trudy I was told that she was a stubborn dog who loved her food. I had no concept of the Hereford Hoover then. Trudy’s trademark is her pinkish brown snout, glued to the ground wherever she goes, sniffing, snorting, and snuffling her way forward. There has been countless occasions where the Hoover has been offered cleaning jobs in various public buildings. (And as many where she has narrowly escaped being ordered off the premises). But despite her penchant for hoovering, Trudy was always a first-class guide dog. She has guided me to Scotland, London, Devon, Essex and all over the West Midlands. Together we have mastered ferries, trains, buses, trams, the London Tube and even a carousel in Hereford High Town at Christmas. Before I met Trudy, I would have preferred to die than go anywhere via public transport. (And I definitely never would have tried the carousel!)
Trudy stopped walking in harness about three months ago, but is due to retire officially next week. Her guide dog harness will be taken away for good.
Five years ago I never envisaged the emotional turmoil this would throw me into. A guide dog provides so much emotional and practical support that as a team you begin to function as one being. Picking up the harness and fastening the buckle under Trudy’s stomach is second nature to me. We just used to get up and go out. Being out and about with a guide dog is a real joy. I was forever finding reasons to go out with Trudy just to experience the unbroken communication between us.
I loved the feel of her body bobbing up and down under the harness, the different signals she used to give me through the harness handle as we explored the streets of Hereford, and her sneaky attempts to procure food from the pavements wherever we went. Hoovering aside, I knew that I could trust Trudy with my life. The trust between us is mutual and it unites us. In her guide dog heyday Trudy was a keen worker and would always fly into her harness (quite literally!). She used to cock her head as if to ask me what our plans were for the day. No two days were ever the same. One day we could be in Worcester, the next in the park, the next on a coach to London and the next in the theatre. (I regret to say that Trudy often graced musical performances with her own vocal arrangements, so I always made sure we were right at the back near the exit!)
Reflecting over the past five years brings home to me how much Trudy has transformed my life. In 2010 she was runner-up in the Life Changing category of the Guide Dog of the Year Awards, and in 2011 she won the Life Changing category. The 2011 award was in recognition for Trudy’s role in helping me to cope with Breast Cancer. She unquestionably speeded up my physical and emotional recovery.
Trudy is notoriously inappropriate on official occasions. She nearly ruined the photo shoot in the 2010 ceremony when she dived to retrieve an apple stalk and refused to drop it. And far worse, when we met the Duke of Edinburgh last year during the Royal visit to Hereford, she stuck her snout inside his raincoat to sniff a certain part of his anatomy… Less said of that the better. (For the curious among you, he remarked: “Something must smell nice in there!”.)
Our precious moment of un-glory.
It’s very hard to acknowledge the end of an era with such a character as the Hereford Hoover. Trudy is not quite ten, and probably could have continued as a guide dog for longer had she not effectively retired herself. About a year ago I began to notice subtle changes in her demeanour when we were out together. She seemed fed up, and became more and more distracted. She started meandering instead of walking in straight lines, and frequently led me up the garden path (in fact every garden path in the street!). I got the distinct impression that she was no longer enjoying walking in harness. Eventually this was confirmed when she lay down in the middle of the pavement on strike. (Not once, but three times on three separate walks!) A guide dog on strike needs to be listened to.
So three months ago I decided to stop taking her out on harness. Since then Trudy has found her inner puppy, and bounces through the park revelling in her well-earned freedom. I know I have made the right decision.
But although Trudy is benefiting from the redundant harness, I am finding our new way of life quite difficult. The guide dog harness is a freedom ticket, and without it I have lost a lot of confidence. I still have my lovely dog and she gives me so much in the way of affection, humour and companionship. But our roaming area has shrunk from UK unlimited to a small corner of Hereford.
I am reasonably competent at using a long cane but this way of getting around ignites my old fears and anxieties about going out. I find using a long cane quite an ordeal, and it makes me incredibly nervous. After being dependent on a guide dog a long cane seems clumsy and lonely. I have tried taking Trudy with me on my various practise expeditions. It is better than being out on my own, but the slow walking speed and numerous crashes into bins, bollards and boards continue to put me off. In addition (and this may sound ridiculous) relying on a long cane is a constant reminder to me that I cannot see, whereas walking with a guide dog enables me to forget it. So my current solution is to go to the park every day with Trudy, but nowhere else. And after five years of freedom and increasing confidence, this is a set-back. If you imagine someone who has been used to walking with a prosthetic leg suddenly losing that leg and having to rely on crutches – that is how I feel without a working guide dog. Thankfully I still have Trudy, and she has prevented me from becoming a recluse.
And that brings me onto the pivotal question. What next? This is the question that has caused me untold agonies. My first decision was to keep Trudy as a pet and train with a new guide dog. Guide Dogs have been very supportive and in March they loaned me a dog for a week to see how I would manage with two dogs. The week went well and I coped.
But I knew deep down that I would not be able to sustain it. When you have a guide dog on harness you’re not allowed to walk another dog at the same time. I tried to imagine myself on a really bad day where I
struggle to make it out of bed. Could I honestly say that I would be able to go out and about with the guide dog and then come back and take Trudy to the park? There are days when I just manage to take Trudy out to the grass and then to the park gate where I let her off the lead. With a young guide dog raring to go, and Trudy needing and deserving a quality retirement, I know the pressure would get to me eventually. Not only that, I remember so clearly my first year with Trudy. The first year in a new partnership takes every ounce of time, patience, energy and determination. The more I thought about it, the more I realised that it would not be fair on either Trudy or the new guide dog to have the two of them.
So the reluctant decision I have had to make is that when the right guide dog is found for me Trudy will go to live with a friend in Hereford. Subject to approval by Guide Dogs, this would be a brilliant compromise. Trudy will have a fantastic retirement with people she knows and loves. I will still have contact with my Hereford Hoover, whilst benefiting from having a guide dog to help me fulfil my remaining dreams. This way Trudy and I will both be winners. Someone advised me recently to imagine that Trudy is going off to University rather than leaving for good. (Look out St. John’s College, Oxford!). Bizarre as it may seem, this has helped me with the heartache. Trudy will still be a huge part of my life.
In the meantime, Hoover and I are spending some quality time together and I have no regrets about her retiring. I have my fingers crossed that my new guide dog will be an anti-establishment, rule-bending and reliably subversive canine with a character to rival the Hereford Hoover. As Miranda Hart might say; “Such fun”.
To find out more about Guide Dogs for the Blind, please click here: http://www.guidedogs.org.uk/scarlett3/?gclid=CI_KgorL9bcCFfLHtAodYyYAqw
I was contacted in December by someone who wishes to share his family’s personal story. This truly inspiring account written by Cameron Von St. James demonstrates the power of hope. It has also inspired me to revitalise this blog. Thank you Cameron.
Standing by my Wife Through Her Cancer Journey
On November 21, 2005, my family’s lives changed forever. On this day, my wife Heather found out that she had malignant pleural mesothelioma. It had only been three months since we celebrated the birth of our first child, and instead of getting ready to celebrate our first Christmas together, our lives were heading into a chaotic period.
Before we even left the hospital, I knew that I would have an important job ahead. Caring for a cancer patient would be extremely difficult. After the doctor told us about mesothelioma, he gave us three places we could go for treatment. My wife was speechless after learning about her diagnosis; therefore, I made the decision to go to Boston under the care of Dr. David Sugarbaker, a renowned specialist in the treatment of mesothelioma.
During the next two months, we were living in a very chaotic situation. Heather and I both used to work before she was diagnosed with cancer; however, after her diagnosis, she could no longer work. As for me, I could only work part time. I had to care for my wife, travel to Boston, and take care of our daughter. I was so overwhelmed and often thought about the worst possible outcomes. I was terrified of losing my wife and being left alone to raise a daughter who would never really know her mother. On several occasions, I found myself breaking down and crying when I was alone. However, I never cried around Heather because I knew she depended on me to be strong for her.
We were blessed to have so many people to help us. Many people would give us both words of comfort, and financial assistance which we so desperately needed. I was so hesitant to accept their help at first, but as soon as I let go of my pride and started accepting the generous offers that were coming our way, a huge weight was lifted from my shoulders. If there is anything that I would tell people dealing with cancer, it would be to take any offers of help offered to them.
Caring for someone with cancer is difficult, and most people will experience a ton of emotions; however, it is important to not let the fear and anger take control. By continuing to have hope, life is easier to manage. It was the most difficult journey of either of our lives, but after Heather’s intense treatment involving surgery, chemotherapy and radiation, she miraculously beat mesothelioma, a feat so rare it is almost unheard of.
After this ordeal, I decided to go back to school to study Information Technology. My experience as Heather’s caregiver helped prepare me. I graduated with high honors, and at my graduation, I was the student graduation speaker. During my graduation speech, I informed the audience that I would have never imagined giving a graduation speech five years prior; however, by having hope and never giving up, people can accomplish more than they have ever dreamed of accomplishing. Heather and Lily were in the audience to cheer me on, and that was the best reward of all.