In this episode, I reflect on my recent time spent in spinal injury rehab at the London Spinal Injuries Centre.
It took over a year for me to get a bed due to the pandemic. So was it worth the wait?
4:05 Featured in the national press
8:00 Will I need to share a room? Race and Difference
11:40 Spinal Injury Rehab at Royal National Orthopaedic Hospital, London Spinal Injuries Centre
20:18 “It challenged my own internalised ableism. Disability doesn’t always look like what you think it’s going to look like”
25:08 Spinal Cord Injury. Time to learn to live with it
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Read the full show transcript here
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Not one person that I met in rehab expected this outcome for their future. Not one person had this in their plans. And I know I certainly didn’t. But it’s happened. And it’s really opened up my eyes in ways that I can’t even begin to explain. Guess who’s back? Back again? Hello, and welcome to the curl squads curl power podcast with me, Zoe Fox, curl friend, it has been a few weeks. And you know what? I was not prepared for that degree of separation from you. I’m not gonna lie. But what a whirlwind. The last few weeks have been. And you know what I’ve really, really missed you. And I’ve really missed the podcast. So if you’re a first-time listener, I’ve just got out of rehab.
rehab I hear you cry. What sort of podcast is this? Well, actually, spinal cord injury rehab is where I have just been. So if this is the first time you’re hearing about my spinal cord injury, you might want to jump back a few episodes to the beginning of the podcast, where I spoke a little bit about my experience of sustaining a spinal cord injury at the beginning of the pandemic, with a condition called cauda equina syndrome. So yeah, I’ll go into quite a bit more detail about what happened. If you’re interested, I can pop the link in the show notes for ease of reference. So yeah, I’ve been out of hospital now for what, two to three weeks, but had to give myself some time to just adjust to life after rehab. But that said, I didn’t want to lose my momentum with the podcast. We got it started in March, I’ve been enjoying delivering episodes on a weekly basis for you guys. I’ve been loving the feedback and the engagement that I get from you. And yeah, I didn’t want to leave it any longer. I wanted to get straight back into the bosom of my people. I did think about doing a whole relaunch and doing a summary episode of all of the episodes so far. And I thought you know what, why am I making my life more difficult than it needs to be?
Right now, the essence of what I should be doing at this moment, after rehab is just taking things right down and not trying to do too much slowing it down, focusing on my healing, not trying to be like some sort of media empire. Because I do this all by myself, I do the video recording, I do all the editing and the promotion, the marketing materials all by myself, and it’s quite a lot, you know, my capacity is quite significantly limited at the moment because of my injury. So it’s a lot to do. So I don’t really need to be given myself any extra work. It’s not that I don’t want to give you my absolute utmost best, because I totally do. But I have to sort of respect my healing journey. So if this is how I’m, at this point of being injured and trying to get my life back together, can you imagine? Can you imagine how things are gonna be when I’m like feeling a bit more like myself again, if that’s ever gonna happen, I don’t know. But like, you know, when I’ve sort of, yeah, got over some of the trauma of this stuff. And I’m like firing on all cylinders, I’m going to be a force to be reckoned with guys.
So this has been a really good exercise in just seeing what I’m capable of doing when the chips are down. So I’m quite proud of myself. So tell us about your rehab experience, I can hear you calling in the distance. Okay, let’s get into it. So if you’re familiar with my story, you will know that at the beginning of May, one of my friends set up a GoFundMe campaign to try to help to raise some funds to get me some viral support that I’ve been needing so desperately after my injury that hadn’t been able to access due to COVID. Everything got locked down, didn’t it in the wake of COVID. So I was left here with this new injury, and without any help and support. So my friend was like, you know, we can’t be having this, we need to get you some access to some stuff. So let’s set up this GoFundMe campaign and see what we can do to help you, which she did. And the response was absolutely amazing. Like, I’m still totally blown away by everybody’s kindness, and generosity. And if you supported that campaign in any way, whether it was through sharing, through donating just through sending good vibes out into the universe to me, trust me, I really, really appreciate it. So this campaign got some momentum. It was getting shared about on social media. off the back of that.
The Press, the local press picked up our story featured in my London news. And then from there, it was also featured in the mirror. So in the national press and in the Daily Mail as well. So that was crazy to see my little head flying about the internet. So yeah, there was a lot of love coming my way. And just this whole energy around my story and what happened. And I think all of that just culminated, in me actually Finally, receiving a phone call from the hospital, especially Spinal Injury Center, inviting me in for a three week inpatient stay, to assess my situation. So I’m not gonna lie, I was pretty anxious about it. Three weeks away from my family, three weeks away from my daughter, my two year old, three weeks away from her husband. Yeah, you get the picture. I said it didn’t know when I said three weeks away from the family. So yeah, I wasn’t exactly excited at the prospect. And to be honest, I felt quite rejected by the health service. Because I’ve been desperate, as I say, for a year to have some help some input some insight as to what was going on with my body as a result of this injury.
So I was supposed to originally go into rehab in January. But then we had that second lockdown come in, in the UK, which meant the rehab got cancelled again. So I was really, really upset about that. Then I had a call to say that, you know, yeah, it wasn’t going to happen, but they’ll keep me in mind. So then I made a follow up call about a month or so later to then be told, I’m sorry, we’re having to prioritize newly injured people. I was like, Oh, really? Thanks. You know, what about us guys who were injured at the beginning of the pandemic and have been left without any help and support? So that was a hard pill to swallow. So yeah, when they did finally call, I was like, Well, I don’t want to go anyway. Yes, you do. Stop being an idiot. My husband was like, Yeah, you’re absolutely going. And my dad shared the same sentiment, and I was like, Yeah, okay, I do need to go down I, but in some weird way, because I was left by myself after my surgery, to sort of like face that condition. It’s like, Well, you know, I had to convince myself that was that I was all right. And that everything was okay. And perhaps it wasn’t that serious, because it was a year, over year, 12, 13,14 months without any professional input, after injury, sort of got so used to coping by myself that I was like, Oh, well, it can’t be that serious, can it? Well, one of the biggest, most burning questions for me about my stay was, am I going to be in a room by myself, because the prospect of having to share with a bunch of strangers, after I’ve been in like, isolation for over a year, was not exactly filling me with joy and excitement. I thought if I had a private room, that would be sweet, but like, being lumped in with a bunch of strangers, wasn’t exactly appealing to me, to be quite honest. So yeah, I got to rehab.
I was in a room with other people. And these are people from various walks of life with different sorts of life experiences. But it’s challenging as a person of colour being put into circumstances and situations that are not of your constructing in a way, because as I say, You’re never too sure about who you’re going to end up with. And a lot of the time, you know, it’s well meaning people that totally missed the mark with racially insensitive comments, saying stuff that like I just don’t want to hear. Do you know what I mean? I’m here to try and heal and overcome what has been an incredibly traumatic, exhausting year. I don’t want to have to be sort of like challenging all of these little racially insensitive comments all the time, basically. So it was a bit of a challenge in the room. But it did give me a real insight into some of the issues that we’ve got in this country around race. I’m so used to liveing in my bubble. And you know, my family, my Friendship Circle, we’re all sort of socially conscious people. And you start to forget that the people in the Facebook comments section under the Daily Mail posts, and the sun posts, the Sun newspaper posts, they’re real people. They live out there in society, and you might not rub shoulders with them every day. But if you end up in hospital, you might end up in a bed next to one. And the thing is, is people just don’t realize how offensive some Have these casual statements that they’re saying can be. And that by having black family or friends or neighbors in their mind makes it almost impossible for them to be racist. And the suggestion of that would, would just totally offend them. But all the while, they’re not really realizing that the things that they’re saying is like, yeah, it’s not appropriate. And I didn’t want to hear it. And I didn’t want to be challenging it. And that wasn’t what I was there for. And it’s like, just because the black people in your family have normalized this language. And it made you feel as though it’s okay to speak in that way. Does that doesn’t mean that you can speak like that to anybody else.
Do you know, I what mean, so, yeah, I had all that to contend with. And I was finding myself getting really angry and really frustrated about the dynamic that was unfolding. And when I went into hospital have this vision that I was going to read about five books and all of this sort of stuff. And the dynamic in the room just wasn’t sort of creating the right sort of environment for me to get my head stuck into my books and stuff. So I also thought that I was going to carry on with my podcast recording and all of that sort of stuff. But yeah, the dynamic was just really messing with my vibe, and had to have a little bit of counselling from the farm on the phone who were like, you know, don’t forget, this is your healing journey. Don’t take it on, focus on yourself. And I’m not you know what? That’s right, I do need to just focus on me right about now. So anyway, I did summon the courage to ask for a room change. And I ended up in a room with some really cool people who were all very sort of quiet and focused on their own healing journeys. And I made some really cool friends in that room too, which was, which was amazing. And a new room had direct access to the gardens of the garden facility. So I was at the Royal National Orthopaedic Hospital in London, at the spinal injury centre there, and oh, my gosh, talk about world class facilities and treatment, just incredible. The staff there were just amazing. There wasn’t one single member of the team that let them down everybody that everybody that was there, worked with heart. And there was no one who made you feel as though anything was too much trouble.
So yeah, I have this beautiful garden right next to my bed. And the garden was developed by a charity called Horatio’s Gardens. And that’s an organization that was set up as a memorial project for a young guy called Horatio, who was killed by a polar bear on an expedition at the age of just 17. And his dad was a spinal surgeon or spinal consultant. And Horatio wanted to have some involvement in spinal injuries when he grew up. So this project was set up in his memory and Horatio’s Gardens have been working through the country to enhance and develop the garden facilities at spinal injury centres. And what a difference it makes to be able to go outside and have that space where you can just exhale, take a deep breath, really tune into the nature zone into the sound of the birds listen to the sound of the water features. In the three weeks day that I was there, I got to see different plants, come into their, to their peak and then die off just yeah, just this, this sort of movement through the garden like the two lips. And then yeah, just it was just incredible. And that’s all looked after by the head gardener there. Ashley, who’s an amazing guy who’s doing really incredible things actually. And to see a person of colour in charge of the garden was really powerful as well. So shout out to Ashley and shout out to Tracy who also ran workshops for her ratios garden. So I’ve got to do things like making a teddy bear for show and making some lavender pillows and getting on the sewing machine. I’ve got to make some jewellery out of glass and stuff and all really important activities that help you to just stay really present in the moment.
And yeah, not thinking about everything else that’s going on, but just really focusing in on the activity, which is really, which was really important at that time for your mind just to get into the present. In addition to that, I had a real solid schedule of physio, so physio was something that would happen every day. So we’d wheel down to the gym and have a session there and I was doing different things. So like working on my balance, working on my core. I was doing some sort of practice walking and stuff with different walking aids and getting a feel for That, and the physio that I was working with there, Kirsty was fantastic. I’ve got to do some work with Victoria, who was my occupational therapist. And that’s thinking about working from home set up. So at the moment, I’m sitting on a chair that’s really uncomfortable on a desk that isn’t functional. So one of the things that GoFundMe is going to allow me to do as well is invest in some decent seating equipment, because at the moment, I can’t sit for very long, very comfortably, which is one of the biggest challenges of keeping this podcast flowing is because yeah, to edit and to record, and, you know, I just don’t have the budget to get an editor at the moment. So I am doing it all by myself. So trying to make my work desk set up as comfortable, as comfortable as possible is really going to help me to reengage with work again and get back into all of that. So yeah, Victoria was fantastic.
I was also able to participate in sports, we did stuff like table tennis, watcher bowls, and actually shout out to Martin, who was leading our sport sessions and Victor, he says, I’ve got a bit of a flair for the old bowls. So he told me to keep it up. So you never know, you might see me competing in the next Paralympics. In bowls, actually, I don’t know if it if it even is an Olympic sport. But you know what, with practice, you never know, you might see me you might see me yet. We also had psychology appointments, which gave us the time and space to talk through. Well for me to be able to talk through my experience and talking about resilience and sort of allowing myself to exhale and be vulnerable after a year of really having to sort of soldier it, you know, to keep myself going. We had bladder and bowel management groups where we, you know, we were able to sit in groups and talk through issues of bladder and bowel, because almost everyone with spinal cord injury is impacted in some fashion with regards to bladder and bowels.
We also have peer support sessions. So those were all done by zoom, because of COVID. Obviously, we can’t all get together, but those are people who are also injured, but further down the line in their journey. And it’s quite inspiring to see how they’ve adjusted to their lives. And we’re able to talk through our issues and stuff with them. And, and that was cool. And the group sessions were really good to get, you know, for getting to meet other people. And one of the things that really sort of strikes home is just hearing everybody’s stories and getting a sense of who they were before their injury and what brought them to that point what caused their injury.
And one of the things that come up a lot in rehab, in conversations with everybody was frustration. Everybody’s feeling a sense of frustration, because we’re not able to do the things that we’ve always been able to do. You know, you want to heal faster than you’re able to not everybody is able to do that either, depending on the severity of your injury. So there were varying degrees of injury based on the level of injury. So depending where people were injured along the spine, and the severity of the compression to the spinal cord. So my injury is quite a low level injury. So that’s the lower back in the lumbar region of the spine. And my injury is classed as an incomplete injury. So there’s scope for things to improve for me, but there are some people there who will be permanently paralyzed. And if the injury is higher up in the neck, then that’s going to impact everything below that injury side. So that could be you know, impacting your ability to swallow the use of your arms, your ability to cough, people, some people have to have manual interventions to be able to help them to cough and stuff like that. And people ended up there for a whole range of different reasons. So there were people that were injured in bike accidents, quad bike accidents, falling down the stairs, and even some people who just woke up one morning, paralyzed, unable to move from infection of the spine. And that’s without any prior warning, literally normal the day before, go to bed, wake up, realize you can’t move. And that’s how quick spinal cord injury can impact you. Your life was one thing one day. And something else the next. a spinal cord injury can happen to anyone at any time for any reason.
And in fact, there’s a really good documentary on the BBC I player if you’re here in the UK, called any one of us and I remember watching that not long after I was injured. And oh my gosh, it made me cry like I bored because the way that I could relate to it I just bored and bored. But I’d recommend watching that if you’d like to find out a little bit more about the spinal cord experience because it’s true. You know, any one of us at any given time and I’m not Trying to scare people. But the reality is when you’re sitting there with a group of people that are all you know, we’re all in wheelchairs, we’re all suffering one way or another. And it’s sort of challenged my perceptions really of disability and my own internalized ableism and ignorance around disability and wheelchair use and how before my spinal cord injury, I just thought if I saw somebody in a wheelchair, I just naturally assumed that they would be totally paralyzed. But like myself, you know, I am a walker, I can walk, if you see me, I might be walking with crutches, or could be walking without, or for more distance stuff, then I’m going to need to use a wheelchair.
And this is where it gets a little bit risky in sort of challenging people at who are using disabled bays, when they’re parking up, disability doesn’t always look like what you think it’s going to look like. And of course, there’s always going to be some cretins that abuse those parking spaces, and we’ll let that be on them. You know, God forbid, they should ever be in a situation where they would actually need to use a disabled parking Bay. But let’s just trust that if you see somebody using it, they use it for a reason. If someone’s in a wheelchair, chances are they need it. You know, it’s not like a fun day out. It’s a necessity. And the truth is, like my world is quite a small space without a wheelchair, like I can walk a very short distance. But a wheelchair allows me so much more freedom, to be able to access more stuff and travel that little bit further. And I think representation really matters and disabled voices need to be heard.
Because it’s easy to not have to think about disability if you don’t have to. And if you don’t know anyone that’s disabled, and it’s never really touched your life, you know, it’s easy to stay ignorant about it. But as I’ve just said, this can happen to anyone at any given time. Not one person that I met in rehab expected this outcome for their future. Not one person had this in their plans. And I know I certainly didn’t, but it’s happened. And it’s really opened up my eyes in ways that I can’t even begin to explain the way that it has broadened my understanding my empathy. But should it have taken me to have a spinal cord injury for me to have that sense of awareness? And his interest in how this sort of like interplays with the conversation about race? Do you need to be a black person to perceive and understand racism? What does it take to get you to really put yourself in the shoes of somebody else’s lived experience? To help you to get a little sense of what it might be like for them? Because just because you don’t experience it, and you don’t see it doesn’t mean that it doesn’t exist. So what can we all be doing? To try and do a little bit better to think outside of our own experience and into that of others?
I remember seeing a meme on Facebook a little while ago. And it was essentially saying that this woman was gross because she had like, stains on her trousers, she was wearing sort of like beige colored trousers with what looked like, you know, faeces stains at the back. And I’ll be honest, I judged her eye judge during that moment, thinking her nasty how she I like that. But the truth is, that could have been me. That could be me. Now, when the bows want to fire off, they’ll fire off, you know, that woman could have been in the supermarket where this picture was taken, trying to buy some stuff to clean her up because she’s had a bad accident. But like, what would life look like if we were all a little bit less judgmental, and a little bit more empathetic? Because Yeah, each of us were out there living our best lives. Until spinal cord injury brought us to this space. And it’s real humbling. There was something really special for me about being with a group of people with the same sort of injuries because there’s stuff that’s really quite embarrassing about spinal cord injury, and stuff that shouldn’t be because it’s all normal bodily functions.
But it’s society, isn’t it? It’s society with his big judgy finger, you know, making us feel a way about certain things, but I’m not doing it anymore. I’m not I’m not going to carry shame about this injury is something that happened to me, and I’m proud of who I am. And I might be more prone to having bad accidents now than I was before. But it is what it is. Why should I carry shame? Why should I be embarrassed about that? Nobody should And the beautiful thing about sharing space with other spinal cord injured people is that we could just have these really sort of candid conversations about what it’s like to live with bowel damage, bladder damage, sensation damage. And all of that sort of stuff.
So, on the day of my departure, my consultant came to see me. And he said, People live with diabetes. And you’ll come to live with this too. You’ve got the tools in place, you’ve got the medication and stuff in place, to help you learn to live with it. So now, it’s just about finding a new way of being with the knowledge that I’ve got. And I feel so so so privileged, that I was able to have this three weeks in such an incredible place, meeting some really amazing people. And what’s really exciting for me now is that, again, thanks to this GoFundMe campaign, is that I’m going to be able to continue with the good work that I started in rehab, and have already been able to book in 48 sessions of clinical exercise centre near me.
And in the few sessions that I’ve already had, because I’ve already started, I’ve had like three sessions, I’m already feeling the benefits of those, just being more mindful about my movement, more confident about my movement, knowing how I can engage different muscle groups now to help to protect my back and stuff is, it’s really exciting, and the prognosis is looking good. It’s going to take some time, it’s going to take some work. But this is another really important thing to remember is that, as I sort of alluded to, before, spinal cord injuries vary. Some people have complete injuries, which are at the more severe end. So the chance of, of their legs starting to move again, are less likely, for example, compared to my injury, which is an incomplete injury. So there is scope for me to progress. So don’t think that just with like, you know, hard work and good intention, everybody in a wheelchair is going to be able to miraculously get up and start walking hallelujah. That isn’t the case.
But in my case, with my injury, and my prognosis, the outlook is positive. So it’s going to be in some ways, like, I’ll be like a jar, or a jug that got broken and glued back together. There’ll always be some sort of vulnerabilities there. But I’ll be able to function as a whole unit. So now this is where the next phase of my journey begins. And that’s a phase of acceptance, a phase of surrendering, adjusting faith, hard work, patience, because it’s not going to happen overnight. It’s going to take time. And that’s the biggest thing that I’m learning. I’m having to really think about how to slow things down. And just to get present, again, just to take the time to be more present, and just do the best I can do in that moment. And that’s all I can do. So with that, I just like to say thank you, to you for listening. Thank you to anybody that has supported. The podcast shared the podcast, shared the GoFundMe donated to the GoFundMe
To all of the incredible members of staff at the spinal injuries centre in Stanmore. So that was Kirsty, Sandra, Tina, Patience, Victoria, Victor, Loretta, Bianca, Charlotte, Mr. Desai. Martin, Bernie, Amanda, Esther, Luke raluca Hayleigha, Lynn, Sian, Aileen, you guys, your care, your knowledge, your time has made such a difference to me. I’m so so grateful to the National Health Service for giving me the opportunity that I’ve just had. So, here starts the next chapter.
If you enjoyed this episode, please do rate review and make sure to subscribe. You can follow me on my personal journey over Zoe Fox on Instagram. Or you can follow the page of the podcast which is at the girl squad on Facebook and Instagram. Also on Twitter. I’m gonna get back to my guest shows real soon. I’ve got one ready to edit and get out to you. And I’ll be lining up some more guest interviews to bring to you too. But in the meantime, sending you big big love till next time
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