In this episode, Dr Ali Jamous talks to Claire Lomas MBE taking us through Claire's remarkable journey from a devastating accident to finding a new purpose in life.
Claire shares her experiences from before her accident and the difficult early years of recovering from her injury and when hope seemed lost. She will discuss the little steps that made the biggest impact on her rehabilitation, and it was all of the little steps that she has reach the triumphant goals of today from flying a microlight, riding a motorbike, and completing a number of marathons fundraising in excess of £850,000.
Offering invaluable advice Claire emphasises the importance of accepting help and taking small steps toward achieving big goals. Claire's story will inspire you and offer hope to all our listeners.
We hope you enjoy this episode.
The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.
If you enjoyed this podcast, please rate, review and subscribe with the podcast provider of your choice.
This show is brought to you by ISCoS - you can follow us on Twitter and LinkedIn
The SCI Care: What really Matters podcast aims to provide valuable insights and the most up-to-date information for those providing care to people with spinal cord injury (SCI) worldwide. The vision of the International Spinal Cord Society (ISCoS) is to "facilitate healthy and inclusive lives for people with spinal cord injury or dysfunction globally".
Partnership and collaboration are key to achieving this vision. Our episodes include expert guests, persons with lived experience and representatives from the industry supporting SCI care.
In this episode, Dr Ali Jamous talks to Claire Lomas MBE taking us through Claire's remarkable journey from a devastating accident to finding a new purpose in life.
Claire shares her experiences from before her accident and the difficult early years of recovering from her injury and when hope seemed lost. She will discuss the little steps that made the biggest impact on her rehabilitation, and it was all of the little steps that she has reach the triumphant goals of today from flying a microlight, riding a motorbike, and completing a number of marathons fundraising in excess of £850,000.
Offering invaluable advice Claire emphasises the importance of accepting help and taking small steps toward achieving big goals. Claire's story will inspire you and offer hope to all our listeners.
We hope you enjoy this episode.
The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.
If you enjoyed this podcast, please rate, review and subscribe with the podcast provider of your choice.
This show is brought to you by ISCoS - you can follow us on Twitter and LinkedIn
The SCI Care: What really Matters podcast aims to provide valuable insights and the most up-to-date information for those providing care to people with spinal cord injury (SCI) worldwide. The vision of the International Spinal Cord Society (ISCoS) is to "facilitate healthy and inclusive lives for people with spinal cord injury or dysfunction globally".
Partnership and collaboration are key to achieving this vision. Our episodes include expert guests, persons with lived experience and representatives from the industry supporting SCI care.
Contact us directly with any questions or comments at iscos@associationsltd.co.uk
Speaker 1:
Welcome. I'm Dr Ali Jumuus, president-elect of ESCOS and your guest host today for this episode. We are recording this episode with just a few weeks to go until the 60 seconds. Escos scientific meeting taking place in Edinburgh. To help us welcome you all to Edinburgh, we have truly inspiring guest. Claire Lomas MBE will share her story and that is what we are going to do today. Welcome to the show, claire. It's wonderful to have you here.
Speaker 2:
Privileged be with you, thank you.
Speaker 1:
It is an amazing story and I hope you will bear with me. I don't like the formality of just reading and answering, but just have an exchange of views between a clinician who spent a lifetime looking after people like you and nobody more important than the person who is in the wheelchair. I actually would like to point out we always concentrate on Claire Lomas after her injury. I like us to remember Claire Lomas before her injury, because there is no doubt that all you have achieved to date is influenced by your personality and who you were before the injury. Can you tell us a little bit about Claire before the accident?
Speaker 2:
I had qualified as a chiropractor and I had four years at university to do that and set up a clinic that I treated my patients from just part-time at home. That is what I was doing as my career before my accident. But my passion was the horses and right from the age of two or three I was on ponies and eventually got into the sport of eventing. And it was just a few months before my accident that I reached the highest level in the sport and as my childhood dream gets to that level, there is a really exciting time for me and all my goals and ambitions are coming true and set high for the future. And what was to come next totally stopped. Everything. Really All those things I had worked years for were just a grinding hole.
Speaker 1:
What sort of family support and friends that you had around those times, which I am sure they rallied to your help.
Speaker 2:
Yeah, I got an amazing family. I had a farming family and my mum and dad were my rocks throughout my accident and huge life change and my friends at Bullington had a lot of sporting events from the eventing days and they were really by my side through the journey and it shows who your true friends are when something like spinal cord injury happens to you.
Speaker 1:
Obviously you needed a lot of support in the early days. Can you tell us how did you cope the challenges that you felt? You lying there, you have lost the use of your body, your life is upside down. How did you cope?
Speaker 2:
A lot of thoughts go through your head at that time and it was a real roller coaster. There were times where I didn't know if I would cope. How on earth was I going to deal with my life now as in a wheelchair and never sat still for a second before my accident and I was 27 at the time you knew it's so easy to take everything for granted not just the sport I did and the job I was doing, but also simple things like soaking in the bath you'd feel the water on you at the end of the day and dancing the night away with your friends on a good night out. All those kind of things were suddenly lost.
Speaker 2:
So there's a lot of thoughts going through my head. Sometimes I wish I hadn't even survived the accident. I couldn't see a future. I was scared. It's the unknown and uncertainty. But I think I'm quite an open person and I went through that process of grieving for everything. I'd lost lot of tears leaning on people that were close to me, but also as many moments, even in the early days, where I still have laughs, jokes and almost like you'd escape from your injury because you'd be with the people you loved and and having fun. And then it hit you again that actually you're stuck like this and what on earth is the future gonna have in store? So it's a real mixture, real roller coaster.
Speaker 1:
Do you agree with me that? I'm sure the family support, the friend support and you've spoken of your competitive nature and availability to remain positive how do you think all these factors influence your ability to cope with and adjust to your injury?
Speaker 2:
I think family support and everyone around you is a huge thing. Also, like you said, your own personality I came from a sport that is incredibly tough. Any sport at a high level is demanding horses. I think even more so because it's not just things with itself that can go wrong, but you've got an animal and it's full of disappointments and setbacks along the way to get to the to the highest level. So it builds up a little bit of resilience and that bounce back kind of attitude. That was a big part of me coping with it and along with that I had an amazing Extended family in the horse world that that got behind me and helped me get some of the equipment I've gotten and things like that. But having them there was really comforting what was a very dark time.
Speaker 1:
So if you look back now and you stated that the medical rehab that you had and the sporting activities Both factors has sped up your recovery so one just need to look at your records of achievement, along with the birth of your daughters and so on, so forth Tell us what sort of was your approach and how this shape your life as a paraplegic.
Speaker 2:
Yeah. So I had 10 days in intensive care before I moved to the spinal unit because my injuries were that I had T4 complete spinal cord injury but I also fractured my neck, fractured ribs, punctured lung and ends up getting pneumonia. So I was really poorly to start with and then I was transferred to chef for a spinal unit and I was always really determined to give it everything I'd got. I knew that my injury was severe. I knew that I might not make any recovery, but I felt that if I did the rehab it gave me the best chance. But if it didn't make, if I didn't get any neurological gains, then it would help keep me fit and healthy and prevent things like pressure Sores and circulation problems. So that was the kind of mindset I had. I wanted to keep moving but I didn't get much rehab. At Sheffield I've got three sessions a week for 45 minutes.
Speaker 1:
Is that why you discharge yourself?
Speaker 2:
Yeah, I left pretty quick. I was told five or six months in there I I left after eight weeks because most of the time was just sat by my bed and I was a 27 year old sports person. That was fine to some people that's what they want to do, but for me I wanted to be doing more and it wasn't possible. In the spinal unit and alongside not just the amount I get it was, it was the attitude I felt was quite negative and they didn't want me to have any hope.
Speaker 1:
I'm going to ask you to dwell on this point because it is something which is very important. The listeners to all the people who work with and I think that is tremendous and highly competitive people like you. Tell me more about how you rate the rehabilitation process.
Speaker 2:
Yeah, I felt. I don't know if it's changed, bearing in mind my accident was 16 years ago now, but I felt that everyone was treated the same. So whether that was the 70 something year old lady that broke her neck next to me in my ward, who was lovely, but whether it was her or myself or whoever, everyone kind of got the same and Everyone is an individual and what's right for someone isn't right for someone else. Any kind of hope was false hope and any positivity was denial. And I was a chiropractor. That was my background.
Speaker 2:
I knew that my injury was a severe spinal cord injury, but I'm not afraid of having hope. I hoped, I hoped that I would get to the top level in my sport, but no one ever said don't dream for that, because it might not happen. And I just felt that was the right thing for me to do, given as well that I couldn't go back to my career or anything else. And it actually gave me a reason to get up in the morning no, it's early days to get on and do rehab and try, and also it's kept me healthy throughout. I still do stuff now. That's right for me, so that's why, you know, I felt that I needed to leave. It wasn't just the lack of rehab, it was. It was the attitudes. I do understand that some of it's to protect people from dodgy treatments that don't work and they take the money off you, but I was simply exercising and wanting to do rehab to keep myself as good as possible.
Speaker 1:
So is this sort of Enthusiasm that I lost something. I want to make a good outcome from something else that shaped your life as a paraplegic.
Speaker 2:
Yeah, I think it's a combination of things, to be honest. I mean, in the early days after such a catastrophic injury I was desperate to recover. You know, I'm not gonna lie, I couldn't see that you could have a good future being in a wheelchair, so I hoped that if I worked hard, little things would come back. It's very different to what I think now, but at the time, you know, anything would have would have been great, I think anything, by the way. Yeah. And then it was like what was it gonna do with my life if I got up and did a rehab session? I felt better because I'd actually got up, moved, and that always makes you feel more positive than just lying in bed thinking I've got nothing. So I think mentally it was good for me, as well as physically.
Speaker 1:
Good, because we know from a lot of people they just sit and wait for Godot and they don't know where the Godot will arrive exactly.
Speaker 2:
It's? Um, you know and it is. It is the unknown. And people sometimes say to me do I have any regrets? And I did put a lot of effort into my rehab. I went over to America for a week to a place called Project Walk and all it was was intensive rehab, so three hours a day in the gym. And they said to me when I got there, the people would do best are the ones that get on with their life as well. So I was never going to just do that.
Speaker 2:
I really tackled my injury from two different ways Rebuilding my life and it felt like everything had been taken off me and the rehab. So they were the two kind of sides. I tackled it. My relationship fell apart and everything went wrong in that first year, but I had a clear vision of what I wanted. I wanted to be a mum at some point, I needed to find a husband, I wanted to be a mum and I wanted to work again. So there's lots of different aspects in my life and I needed to find support to do. But I also wanted to do the rehab to see whether I could make any difference to the injury I had.
Speaker 1:
And did it.
Speaker 2:
No. But I say no, it didn't in terms of movement or sensation. So 16 years I'm still paralyzing the chest down, but I would say it kept me physically good and that helps you mentally as well. So things like I use an electrical stimulation by. I don't want sex. I probably get a problem once I've said it, but 16 years on I've not had a pressure sore and they told me in hospital I'll have to have shoes a size bigger for the rest of my life because my legs will be swollen, all those things. I keep moving and I still do that now.
Speaker 1:
Yeah, unfortunately, a lot of things that they will tell you about. If you look into where did they come from, you find no scientific basis to it whatsoever.
Speaker 2:
Yeah.
Speaker 1:
But I am interested to say and remind you that, although 16 years later you still paralyzed from the chest down, you went and completed a London marathon in 2012, in 17 days. The Vitality 10K in 12 hours. The Great North Run in 2016. In five days, the South Run in 24 hours. Manchester marathon nine days, using an extra skeleton. I don't know how you dare to do that, but you have raised more than for 850,000 and in the process you got an MBA in recognition for all the work. It showed that you don't need to have restored the function from your chest down to be a great achiever.
Speaker 2:
Yeah, absolutely. I learnt that as the years went by after my injury. It takes time to adapt. It's not an overnight thing, and what I've done in that extra skeleton suit you know dreams are made of. It wasn't about the walking for me, by the way. I don't actually like walking. Everyone watching it thinks that you're really pleased because you're walking. But actually walking was that difficult. We'd all sit in wheelchairs.
Speaker 1:
I'll tell you a bit more about it, but I want to hear your story. I rolled all these figures, which make me short of breath just reading them. Can we take the listeners through these things? How did you come in 2012 to decide that you want to do the London marathon?
Speaker 2:
So really it started because I've already had a mission to do what I could do to help a reverse paralysis.
Speaker 2:
That started really because when I was lying in hospital even though I had some really dark times, scary times, I also felt genuinely lucky because I got used to my arms and a lot of people in there with neck injuries far worse injuries than me I thought I've got to do what I can do to help cure paralysis. So that's how it all started and when I saw the re-walksuit just on the internet, I felt like a brilliant bit of kit to do a fundraising event bigger than what I've done previously and also get weight onto my feet in a better posture than just my standing frame and be able to take steps. So that's kind of how the idea came up, but it was made in Israel, it wasn't in the UK. So I fundraised to get the money for the suit with the help of the equestrian world and I got email in the company and eventually they managed to get the suit in the UK for me to be trained to use it.
Speaker 1:
I hope they gave you a discount.
Speaker 2:
They did absolutely Well. After I paid for half a bit before with this money and then after London marathon and the amount of media it got, I didn't have to pay anymore and it was a good thing, because to me it's not a useful everyday bit of kit. It's been amazing for what I've done as a fundraising tool, but not something I'd use on a day-to-day basis.
Speaker 1:
And then you got hooked on running. Whatever events, there is something to do.
Speaker 2:
Yeah, exactly a challenge and it's an amazing fundraiser. It's very, very emotive when you see like a paralyzed person walking and how difficult it was and it made people donate and that's why I was doing it, making my way to the finish line. It's been fantastic for what I've used it for.
Speaker 1:
Have you identified from all this experience what are the challenges which faces somebody like you, A paraplegic sitting in a wheelchair? There are all sorts of challenges every day.
Speaker 2:
And it's the stuff that you can't see. So obviously, bowel and bladder issues, I think, is probably what bothers people most, and it was really hard in the early days. You know, my bladder was often let me down. It can make you feel reluctant to go out and can you get an accessible loo? If you do get all these things, it is so much more than people see and that's just that you can't walk. You know, as time went on I came to terms with it and I just shove my tenor pants on and get on with it, Because you know I don't want it to hold me back and it doesn't now. It just doesn't. It's just my, it's become my normal.
Speaker 2:
The other thing is, what I think is amazing is that we're in a world where I can get in a micro light with adaptions and fly a plane I just got my pilot's license. I can get on a motorbike and ride on a track day with mainly men, able, bodied with adaptions. I can walk a marathon with an adaption, but you struggle to get on a train and you struggle to get in a building. The things that most people want to do are still a battle for everyone and I don't think that should be the case. In 16 years of being paralysed, I don't think much has changed or advanced in the way you travel around and get around. Yet in sport it's moved on.
Speaker 1:
So so far, Well, that's why, then, I look forward to people like you fronting these sort of things. There's no point of me going and telling people paralysed can't get easily on a train. It needs people like Claire Lomas to go and tell people I can fly a glider, but I cannot get on the train.
Speaker 2:
Yeah, exactly, it's crazy. I know that East Anglia trains have got some new trains and they've got ramps that come out onto the platform. I haven't seen them yet, but that's what we need on all trains because now we want people that are disabled to be able to get to work, do jobs and live a life that they want to live. It is pretty tricky. I live in the countryside, but if you lived in the city and you had to face that every day, I can't imagine how restricted you'd feel. Most of the time in my life I can honestly say I don't feel disabled because I found all the things that I can do and it doesn't hold me back. But there's times where it's out of your hands. The ramp doesn't come when you get to the platform and you feel really disabled and you're just relying on someone else to get the ramp and they don't always come and it's not in your control.
Speaker 1:
Yes, all they need to do is be inventive and have a ramp which automatically falls onto the platform built onto the train. Exactly, Press a button, it comes out.
Speaker 2:
It's not difficult. It's not difficult. You can invent a robotic suit that makes a power life person. They can take steps. Then surely we can advance in other areas.
Speaker 1:
So I could understand all these activities. We're still on land or in water. Where did you get the idea that you wanted to fly?
Speaker 2:
That's a funny one actually. So I've got two children, maisie and Chloe. Maisie's 12, just started secondary school a year ago. So she's growing up quickly and she was actually the biggest change in my life. So we can think about London Marathon and that was a very special moment and quite life changing for me. It changed my career, became a speaker and lots of different areas and the opportunities that came from it, but the biggest change in my life was having Maisie. So that was in 2011,.
Speaker 2:
Four years after my accident. I met Dan, my husband a year after my accident on a dating website, paid 20 quid for Dan. I got him back with my husband and then had Maisie. Yeah, few years later, and I've also got Chloe, who's six, and the doctor delivered. Chloe was also a motivational speaker and he'd done challenges. He'd done the South Pole challenge with Ben Fogel and James Cracknell, who's on BBC. So how lucky was I to get him as a doctor. I couldn't believe it.
Speaker 2:
Anyway, I got to know Ed quite well and we became friends and I was speaking at an event for him for the NHS and we met up in a pub the night before, had a meal and he just started having lessons learning to fly. So he said look, you've got to start this, you can get adaptions and one day we'll do a challenge together. So that's how it came about. So it's quite a funny one and yeah, that was just before the pandemic and it's been a bit on and off my training, with big breaks, but yeah, managed to get my license and I fly a ultra light. So one seat and a two seat. I've taken both my daughters up, which is just the most incredible feel, because when I was pregnant I thought, well, my child would miss out because of my disability and would it affect them? And I can honestly say it hasn't. It's actually brought opportunities that I wouldn't have had if it wasn't for my accident and we wouldn't have had as a family.
Speaker 1:
So when you, barbara, asked you to fly her, you reassured her that if I can fly my children, then you can. I can fly here.
Speaker 2:
Exactly so. I've been doing charity flights and one of them was a Lovely, lovely 80-year-old lady who it was at an event I was speaking at and we auctioned a prize and for a children's hospice. And yeah, I flew her a little while ago and it was Really special to to use what I've done. That's always the idea to to use what I can do to help raise money and for lots of different charities. So it does.
Speaker 1:
It opens doors to the things so what are the charities you are involved with these days?
Speaker 2:
So mainly the nickel spinal injury foundation and the patron of the charity are. I Actually did the London marathon for spinal research and then I met David Nichols a year after well, a few months after London Marathon and he said told me about the, what the research they were doing and that sounded incredible. But also I love the fact that he's got the same passion as me for finding a cure for paralysis. His son was paralyzed in his gap year, died into the sandbank and broke his neck on Bondi Beach. But I know that David doesn't waste the penny and often when you look into charities you know I've had people off the streets around London walking up to me they probably haven't got loads of money to shove into your tin and they still do, and I don't want any that money wasted. So I quite foresee where it goes. So I feel very confident with the work they're doing and the way they spend the money.
Speaker 1:
So we Ride, we swim, we do marathon, whiskey, we fly. What's next?
Speaker 2:
Get better at some of the things I do so like, like, like what.
Speaker 2:
Like flight. So you know, I've only just recently got my navigation done, so now I've got to get used to flying to different airfields, Get more confident. That's the plan actually. I'm hoping to fly tonight. I've just got the single seater, the ultra light, back home so I can fly, because we've got a farm, farm grass strip so I can just go out and fly from there, and it's that feels amazing because it's always been with a lot of traveling to the airfield. So I want to do that.
Speaker 2:
I do team challenges, so sometimes when I've gone into corporate events to speak, I managed to Drum up a team to go and do like. We did the Newcastle 10k in July with a law firm that I spoke from. I've had 25 of us doing that. I push it in my everyday wheelchair. By the way, I'm not walking in the suit, it is in my wheelchair now. So, yeah, doing a lot of that. I did a challenge earlier this year, may, where I went over to Northern Ireland and For the first time I managed to ride my motorbike on the road and it was a big road race. So they, they, let me have a charity lap round it, and that was really special. Never thought I'd do stuff like that. So, yeah, lots of different kind of things I could do. So we'll see what what the future brings.
Speaker 2:
You don't feel old anymore sometimes, and I've got two children bickering, awesome holidays. But yeah, now I feel that the list of what I can do outweighs what I can't do by a long way. And and I Think I've had two opportunities at life I think that often when we get older we stop learning new things. You're kind of in your area that you know, so for me that was the horses and and would have maybe been my chiropractic forever, who knows. But I've had to reinvent myself. I've had to be willing to try things I'd never considered and that keeps you younger because you know we, we kids, start doing all these clubs and different things and trying this sat in the other. But I've had to be a bit more open and look a little bit harder than I would have done, I think, if I if I was still able, bothered and the first love of your life, which is horse riding.
Speaker 1:
Do you pay any attention to it? About the horse riding for the disabled and this and that?
Speaker 2:
Yeah. So it was really hard to fill that gap because it was my passion, it was my life and it was heartbreaking. I mean, if you lost any sport that you you were doing to the level I was competing at it, it it'd be hard. But horses are a whole nother thing. You could show the tennis racket in the cupboard. I had to sell my horses. They go to other riders, the ones that had owners, and it Really was the most heartbreaking time of my life. But I have gone to events and watch. I love watching the big competitions, mainly on TV these days Because I'm busy doing other stuff.
Speaker 1:
Well, and also you can see better exactly, very true and get around better.
Speaker 2:
I did ride again. Only 12 weeks after my accident I was back on a horse and everyone said to me it must be amazing to be back on, but to be honest, it wasn't, because I still felt like the same person. The thing is with a spinal cord injury is it affected? My body, two-thirds of my body, didn't work, but in my head I still wanted to jump the big fences and do the fast stuff, not ride a quiet horse Around. You know, it just didn't give me a bus. That's why I tried new things.
Speaker 1:
I'm sure people will understand. So, in a nutshell, claire Lohmus, with all your achievements, what advice do you give to your fellow Persons who find themselves in the same situation?
Speaker 2:
There's a couple of things I'd say that I think would probably Hopefully help someone in the early days. And firstly, it's normal to be sad, it's normal to grieve and have tough times. It doesn't mean you're gonna stay there and you've got to take those little opportunities in the early days. For me it was being offered a job local to where live in an office and Part of me felt angry when I was offered that job because I could have done it when I was 16. I've had four years at university and in so many ways I felt like I was going backwards. But I took the opportunity and I didn't realize at the time how significant it was. And even on the days I didn't feel like it, I'd make myself go into the office and nearly always felt better for it. So that was the kind of first few stepping stones.
Speaker 2:
The other thing I'd say is accept help Even now. I'm never afraid to have help Now, whether that's leaning on someone in the early days sharing how you feel, or whether it's helped with something physically lifting your wheelchair in the car. I can take my wheelchair to bits and put it next to me and be totally independent. But why bother doing that if you've got someone to help you, put it in the back, save your energy for other things so you can feel more into your life and fit more in, and I think that's a really important thing. People love to help anyway, you know, some people might think I'm really independent because I do all these different things and I'm up solo in my microlight, but actually I have a lot of help and life's full of teamwork and I like to think I help my kids and husbands with other things and they help me where I need it and that can get you through life.
Speaker 2:
I think the other thing is, like I said, is by taking those little things, don't discount them, because you won't get the bigger picture without doing the first few things. It's easy to concentrate on things like the London marathon, the flying, all these things, but actually just getting out of bed when I had no reason to get up was the toughest thing I've ever done. No one was there clapping me or saying well done for just dragging my paralyzed body out of bed, but without doing that I wouldn't be where I am now. It's a bit like a jigsaw to get the full picture, the bigger picture, which I called my second book, by the way to get that picture. You've got to put all the pieces in, and those first few pieces are the hardest, but you're not gonna get to where you want to without putting them in.
Speaker 2:
And I'd just like to thank everyone really for the care I did get. It was only the rehab side. That wasn't enough for me, the actual care I got. And I wouldn't be sharing this story with you now. It'd be a very different story without all you lot doing your amazing work. So a huge thank you for me and everyone in my situation.
Speaker 1:
Claire, I hope you first send me your first book and then remember me when you publish your second book. It was a great pleasure to meet up with you. The fact that you have concentrated from day one on rebuilding your life through rehab, wanting to be a mom, wanting to go back to work which is what we all, as clinicians, wish that all fellow patients like you will adopt from day one. I hope you have enjoyed listening to this episode of Spine Cores Intrigue Care, what really matters For our listeners. Remember you can listen to this episode and all our episodes in our full back catalog. We invite you to like and subscribe and, if you can leave a review, if you have any questions or suggestions, we would love to hear from you. Email them to admin at iskosorguk. Iskos also invites you to the 62nd Iskos Scientific Annual Meeting taking place in Edinburgh this October. All details are in the share notes. Thank you for listening.
