As I finally have updates on my mobility, I thought I’d go back to writing mobility updates. I’ve written most of my journey towards getting a Guide Dog on this blog since I first started it so thought I might as well continue. Plus, hopefully it’ll be nice for me to look back on in the future, by which time I might have even achieved my original goal, getting that Guide Dog!
Since I was put back on the waiting list for a Guide Dog last September, after I was suspended due to the impact my Epilepsy diagnosis might have on my ability to work a dog and the pandemic meaning I hadn’t been able to practice my longer routes, there hasn’t been much to report. After I was unsuspended and active again on the waiting list, I started to wait again, obviously hoping I might get that miracle call, that they’d found a potential match for me and would like to come out to do the matching walk to find out. But the call never came. To be honest, by this point I wasn’t expecting to get the call quickly. The pandemic has had a big impact on the amount of puppies making it to training and then the actual amount that pass training and are good enough to be partnered with someone. For some reason, the Southampton team seemed to have been hit particularly hard and I think there were quite a few staff changes as well. Of course, that’s just what I think, definitely not the facts. Only the people on the inside working for the charity have that knowledge. Also, pre-pandemic I’d already waited a year and a half with no whisper of a possible match. I’d expected that too. At the very beginning, I’d been unrealistically hopeful that I’d get a match quickly. Not surprising after the amount of time it took me to meet the criteria to be accepted onto the list. But optimism fades. As I’m quite a pessimist anyway it wasn’t long before I wasn’t hoping it’d be soon any more, just hoping it’d actually happen someday. Then, in May 2021, after my lovely My Guide volunteer Jenny and I had been working together a few months post restrictions lifting enough to do so, I said I thought I was ready to be reassessed to get back on the list. I had my mobility assessment and passed fine. Then, at the beginning of September, a Guide Dogs Mobility Instructor – I know the official term has changed now but can’t remember what it is – phoned to say he’d be able to do my Guide Dog Assessment that week if I was available. Before I’d said I was ready to be reassessed, I’d specified that when I did the Guide Dog Assessment I wanted to do it with a dog rather than just the standard short handle walk – a short handle walk is where the instructor holds the harness and moves in the motion that a Guide Dog would; you have to use the commands and gestures you would with a Guide Dog. The purpose of this assessment is to show you have the capability to work a dog. They don’t expect you to get the commands and gestures perfect because you haven’t actually gone through the training. But they want to see you’d be able to learn how to do it and can follow instructions. I requested I do the assessment with a dog rather than short handle because every time I’ve done short handle walks in the past they’ve been a disaster. I’ve completely gone to pieces and failed miserably. Yet the moment I’m allowed to try with a dog and not put under too much pressure, it goes loads better. After all this time, I wasn’t prepared to fail with a short handle walk again. This probably contributed to me waiting 4 months after my mobility assessment but really I didn’t mind because, when the instructor called, he had the perfect dog for me to walk with. Kim was a yellow Labrador retriever full of energy and fun. She was 3 years old and was being retrained after she’d decided she didn’t want to work with the first person she’d been matched with. She was ready to start her training with her new owner a few weeks after my assessment. I was so excited. Obviously nervous too but more excited that I was going to meet and work with Kim. Also, I’d met this particular Guide Dog Instructor before and he’d been lovely; at the time, he came round with a Guide Dog in training called Esra, who was a sweetie. Safe to say, Kim was absolutely gorgeous! Harley was in that Friday afternoon and the instructor was so relaxed, more than happy for us to fuss over Kim as much as we liked. When I’d first applied for a Guide Dog in 2011, I’d been told this was frowned upon. Then, in 2018 when I was being reassessed after returning Zena and working with Jenny on my routes, not making a big fuss of the dogs was one of the reasons they decided I wasn’t suitable for a Guide Dog. I wasn’t going to make that mistake again and had a big cuddle with Kim. A lot has changed with the training over the years since I first applied. Back then, it seemed a lot more strict, with half-check collars and a lot of corrections. Now, it seems a lot more friendly, with treats and lots of praise. Having had Zena, who was trained using the strict seeming method, I much prefer the methods now. Maybe I’ll disagree when I actually have a Guide Dog because I know many owners have concerns. But it seems much nicer to give the dog encouragement and rewards rather than reprimand. My walk with Kim was great. Just having that harness in my hand again, with a wet nose and wagging tail at the other end, was enough to solidify my feelings that a Guide Dog is the right mobility aid for me. The instructor said I did very well too. Kim herself was almost paw perfect and I commented many times that her new owner was very lucky to be getting such a lovely girl. A week later, while I was visiting Kieran up here, I got the call I’d been waiting for; the instructor had taken my case to the weekly case review and they were reactivating me on the waiting list. Due to the amount of time I’d already waited, I was placed in the priority 1 category. This is for people who are waiting for a replacement dog and those who have waited more than 18 months for their first – at least, that was the criteria then so it may well have changed. Of course, I was over the moon and so thankful to the gorgeous Kim, without whom I wouldn’t be in that position.
Unfortunately, nothing came of that place on the waiting list in Southampton. In January this year, when I knew for sure I’d be moving to Blyth a couple of months down the line, I phoned the Southampton team to tell them about the relocation. Immediately, I was suspended on the list again, which I understand because it wouldn’t be fair on the trainee dog or me to be matched a couple of months before I move to a completely new and unfamiliar area. Naturally, I was still gutted. Yet again, I’d come so close but got nowhere. As usual, I contacted my usual source of knowledge and reassurance for all things Guide Dog and generally blind related; Tiny was able to reassure me that once I was under the Newcastle team I wouldn’t have to reapply from scratch, just build up my routes until they were satisfied I was able to be active on the list again. Although he was able to reassure me, I still felt pretty nervous about the whole thing. My experience with Guide Dogs has been rocky from the start and although now I’m older I can see in many ways they were right on a lot of occasions, there were still times they weren’t and it was an uphill struggle to get onto the waiting list in 2018. The way they reacted to my Epilepsy wasn’t very positive either and for someone still getting used to their new diagnosis it seemed pretty insensitive. But either way I’d eventually reached the point I needed to be. Now, it was time to start again.
Once I’d been living here a couple of weeks, I contacted the Newcastle Guide Dogs team to get the ball rolling. As the Southampton team had transferred my case, they were already aware of my situation and ready to start the process of getting me unsuspended. I had to do a health risk assessment again and Epilepsy was flagged as a potential barrier. It was quickly dismissed, I think probably because Southampton had deemed it not to be an issue and because I’d been seizure free for 18 months by this point. Once they were satisfied to proceed, they arranged for a mobility instructor – previously orientation and mobility specialist but I don’t know the new term – to start teaching me routes with my cane. When the first lady arrived, we made a plan to learn how to get to the nearby bus stop, which seemed the simplest destination to start with considering the whole area is unfamiliar to me and I didn’t know anything passed the end of our garden path. So we started practising. I found it very hard. The route itself isn’t complicated at all but for some reason it wasn’t sinking in. We repeated it several times. Unfortunately, the instructor fell ill a few times and had other commitments so our schedule was rather disrupted, meaning there wasn’t a very regular pattern to our sessions. Eventually, she had to take time off work due to illness for the foreseeable future. I felt very sad for her as she was obviously struggling. But of course the selfish part of me wondered what was going to happen next. I’d already been told that My Guide volunteers aren’t allowed to teach routes from scratch, only help practice those that the mobility instructor has said you’re competent enough at. Even if this wasn’t the case, currently there aren’t any My Guide volunteers in Blyth. However, I was lucky; another mobility instructor came out to see me a few weeks later, just before I went down south for my birthday. We only had a couple of sessions together, though. She lives quite a distance from Blyth and as there are staff who live closer and became available to support me, it didn’t make sense for her to continue working with me. So for the third time in as many months, I had a new mobility instructor. I’m very happy to say that we’re going to be working together for the foreseeable. As they still don’t know when my original instructor will be returning to work, they’ve decided it makes sense for continuity reasons that we work together long-term. So I’m very happy to know that fingers crossed things won’t change again until they need to.
So, on 14 June, the handover between my temporary instructor and the new lady took place. I showed the new instructor my cane skills and tried to walk the route to the bus stop. There’s a part of the route, just after coming out of the flat, that’s a big open space. I still get a bit confused about the angle to take to cross it the right way, so I don’t veer off towards a curb. Once I reached the crossing, the three of us went on a little wander to find Lesley and John’s house, a destination I’d suggested as we go there regularly. As we walked, we also discovered the Tesco Express I’d mentioned as a possible destination was an add on to the route to their house. So, the new instructor and I agreed dates in our calendars and said we’d start the route to Lesley and John’s in our next session, which was the 24th. We agreed that the bus stop routes could be crossed off for now as I pretty much know them. Plus, as I don’t know anything at the other end of a bus route, they’re pointless at the moment; there are more important routes to focus on. At first, the route to Lesley and John’s seemed pretty daunting. As of today, we’ve had 3 sessions, so I’ve walked the route 6 times. After the first session, I felt like I was already starting to grasp it. The second, on Monday this week, I at first thought it was going well but then got really confused on a few parts and felt pretty disheartened by the end of it. But today it went really well again. I only got a few points wrong. It’s also turned out that as well as the Tesco being an add on to the initial route, Rebecca’s house is another. Once I’m 100% sure about the route I’m already doing, we’re going to add that part on. I came home feeling much more positive and confident this time. My mobility instructor seems to think I know the route pretty well. I’m not so sure about whether I could do it independently yet. I think I need to practice it a few more times before I feel close to that. But from next week we’re going to start my second route. I’ve discovered a new Guide Dogs term since doing the route to Lesley and John’s: a substantive route is a route that combines two routes with multiple features. For example, the route from the flat to Lesley and John’s plus the route I walk back is a substantive route because it’s actually two separate routes; I walk there one way and back another, almost making a full round trip rather than retracing my steps, which has happened in most of my routes before. In total, if I walk the full circle of the route, it’s about 45 minutes. This meets the criteria for the necessary daily workload for the dog. Plus, the route has multiple destination options: Lesley & John’s, Rebecca’s or Tesco. There’s also a potential free run area of a big field near Lesley and John’s but my mobility officer is checking with the Guide Dogs specialists because it isn’t enclosed, which might mean it can’t be used for a Guide Dog. It’d be handy if I am allowed to use it, though, because it’s somewhere lovely Wilson is taken for a run. According to my Apple Watch’s workout tracker, it’s about 1.3-ish miles and the Guide Dogs daily minimum is meant to be about a mile. So it’s definitely a good one. But the best thing about a substantive route is that because it’s two different ways, one there and another back, it counts as two separate routes. To be accepted back onto the waiting list for a Guide Dog I need three good routes. This current one counts as two so I just need one more. On Monday, we’re going to do another two run throughs of the whole route to and from Lesley and John’s, including Tesco and possibly investigating Rebecca’s. On Wednesday, we’re going to start my next route, a walk to the beach and the nice fish & chips restaurant there. My mobility officer reckons that once I’ve mastered both of these she can put me forward for the Guide Dog Assessment. If I pass that, we can continue to learn other routes, as well as occasionally practising the ones I already know, so that I have more of a variety by the time a match is found. By the way the mobility officer is talking, I might be back on the waiting list much quicker than I thought. I’d expected it to be several months, perhaps even Christmas or after, by the time I was back on the list. If I’m really, really lucky and am back on the list by maybe August, I might even have a match by the end of the year. I know that’s unlikely and I’m definitely trying to keep a lid on my hopes. But I’ve also been told that as I already waited 3 years in Southampton they’ll be trying to find a match for me as quickly as they can. It isn’t good to have someone waiting that long on the list. So maybe 2022 could be my lucky year after all. Who knows?! I’m going to do my best to remember more and more of my current route each time we practice and hope the beach one burns itself into my memory as quickly as possible. I’m also going to try, once I feel confident and safe enough, to go out and practice by myself. That’s always been something I’m not very good at. If someone is by my side or even following silently at a distance, as long as I know they’re there as a safety net I’m fine. But doing it totally alone, just the cane for company… Obviously, the argument is if you can’t go out independently with a cane you won’t with a Guide Dog. But it’s a totally different situation, a completely other feeling. Of course, if my dog was poorly I’d have to go out with my cane if I needed to go somewhere. But that’s a necessity. Working with Zena, however short-term and ultimately unsuccessful that may have been, proved to me that my confidence and comfort with a dog rather than a cane is worlds apart. I’ve always wanted to improve my independent mobility with a cane; and I will try. But whether it’s a mind block, stubbornness or just the truth, when I’m working a dog rather than walking with a cane I feel loads better. I don’t get the same nervousness and panic. Maybe it’s because you’re talking to the dog the whole way, directing and encouraging it. Maybe it’s because with a dog you don’t feel so alone. I don’t know. I just know it’s different and there’s no changing that. But for now, as always, I will do whatever it takes to get me active again on that waiting list, that little bit closer to having my own Guide Dog and the independence I almost had with Zena at my side. Today is 5 years since she was returned to Seeing Dogs. Except being in touch with her second blind owner, I’ve had no news of her since. I often think about her, hoping she’s happier as a retired guide. She was never suited to being a guide dog and I’m glad, in a way, that both her pairings failed. Obviously not for me or her second owner. For us, I wish it could have worked out so we had the guide dog we both wanted. But for Zena I’m sure she’s living her best life now. I hope so, anyway. But even 5 years on from having a guide dog harness handle in my hand every day, I’m still 100% certain a Guide Dog is for me, that it will improve my mobility and independence by miles and help my confidence and mindset so much. However much a Guide Dog is a guide, the amount they help the mental wellbeing of their blind owners can’t be stressed enough. The companionship and having something to look after, a reason to go out every single day, it’s something I can’t wait for.
The purpose of this post was for me to have everything written down so that hopefully some point soon when there’s a dog sprawled out snoring across my feet and I can’t recall part of the journey that brought him/her into my life, I can skim back through this and know how much it was all worth it in the end. Right now, I’m hoping to write once a month, recording my progress during each month’s sessions. I enjoyed doing that while I was training with Zena and even more now, thanks to my not as great memory due to Epilepsy, I like to have things down in writing. Memories become fuzzier quicker these days and as this journey has been quite a lengthy one, it’ll be nice to be able to look back at it fully, rather than with hazy patches.
PS: I’m referring to the lady who is my mobility instructor as my mobility instructor rather than by name as she wasn’t sure whether I was allowed to name her and also seemed more comfortable with it that way.