A masterclass in resilience from Clodagh – #beatinglockedin

We hear stories where after a life-shattering event a person navigates huge obstacles with incredible resilience and a breath-taking determination to live life positively to a ‘new normal’. The remarkable recovery journey of Clodagh Dunlop supported by her partner Adrian Simpson is one such story.

In April 2015, Clodagh, a PSNI Officer from Magherafelt, at the age of 35 suffered a massive brain stem stroke which led to her experiencing locked-in syndrome for three months. As a Life and Leadership Coach with a specific focus on resilience coaching, I was truly delighted to have the opportunity to interview Clodagh and Adrian.

Two years on from her stroke, Clodagh and Adrian share their experience, insights and how they now live life as a result.

Clodagh, can you summarise the big milestones in getting to this point from the initial brain stem stroke which resulted in locked-in syndrome?

I took a what’s called a mini stroke (TIA) while I was on duty on the Wednesday night prior to Easter Monday. I went to hospital, they carried out checks but what they explained it was possibly fatigue as I was working a lot of shifts. I spent the weekend in Scotland with my partner Adrian. He was at a police rehabilitation facility as he had been in a road traffic collision and hurt his back. I spent the weekend with him. I generally didn’t feel great all weekend but nothing untoward happened all weekend.

It was Easter Monday, I felt completely fine, so fine that I decided that I would run as I love running. I got up like any other day and put on my clothes to go for a run. I was going to run to the Ponderosa which is the highest pub in Ireland and 13 miles from my house. When I looked out, the sun was shining in through the windows and I could see that the rain had left them all dirty. So, I went inside, put on my flip-flops, went outside, sang and cleaned the windows and decided that I would run 13 miles tomorrow. But, little did I know that tomorrow I would be on life support fighting for my life.

It was that evening then that I sat on the sofa and ate an Easter egg. I see my sister arrive at my house and I thought ‘This is a real pain, I’m going to have to get up off the sofa and open the door!’ As I ran to open the back door, I suddenly felt really unwell, that death was upon me. I could barely make it to the back door. As I opened the door I said to her ‘Call an ambulance please, I’m not joking, I’m not joking!’ as I collapsed to the ground. She would always say that I just sounded like a garbled mess more like ‘Ruarrgh.’ She phoned an ambulance. By the time the paramedics arrived, I was back to normal again, fit and healthy.

I went to Antrim A&E, waited there and said ‘I think I’m having a stroke.’ But again, everything about me didn’t look as if I was. As with mini strokes, when you have a TIA the psychical symptoms can disappear. By the time I presented at hospital, my speech had returned to normal, the weakness I had experienced had gone. I sat there looking fit and healthy.

As I waited, my condition started to deteriorate, then I took a massive seizure and felt as if I did die. My sister was screaming. I felt I had died only she screamed and shouted and hit my face and brought me back. I had a massive seizure. I remember the seizure completely. It’s strange, when you have a seizure you are aware of it all. I was aware of everyone in the room. I can remember the nurse, blonde hair and her fringe and her shouting at me, ‘Clodagh, what drugs are you on?’ and I wanted to shout that ‘I’m not on drugs, I’m not on drugs.’ She was saying ‘Stop that, stop that’ as I was writhing on the bed being sick. Then everything went black.

They put me in a medically induced coma. They didn’t know what was wrong with me. For the first few hours they thought maybe I had meningitis. It was several hours later when they scanned me they realised I had had a stroke. I had a weakness in my artery in my neck, in the weakness a pocket formed. In that pocket, the blood formed a clot. I had been exposed to at work and at home were little spurs of that clot dispersing to the brain, so I was having mini-strokes. In the hospital, a large blood clot dispersed into the brain stem.

As they were not sure what it was initially and were treating me for meningitis, parts of my brain were starved of oxygen. Parts of my left side of my brain started to die which is why now my right side has the weakness. I had a procedure – a relatively new procedure – a thrombectomy. Normally that procedure is carried out in a four-hour window but the procedure carried outside of the four-hour window. Undoubtedly, that procedure saved my life. It’s not carried out in many hospitals in the UK but it’s now becoming more commonplace. We want it to be more available to everyone.

When you came round, you describe Clodagh how you were totally aware. What was that like?

Absolutely. You can hear everything, see everything, feel everything. All your senses are there but you simply can’t move. I’ve always said that I was a silent observer to the world around me like no-one knew I was there but I was there. You could feel every ache, every pain, you could see all the nurses scurrying past.

When they told me that I had had the stroke, there were so many questions you want to ask. I simply however had to just lie there and listen. One of things when someone said to me ‘You’ve had a stroke’ I wanted to ask ‘Well what type of stroke have I had?’ A stroke normally affects one side but there I was completely paralysed. I remember initially feeling really angry because I thought ‘I told them, I told them I was having a stroke but nobody listened.’ So, I felt angry but I also felt a great sense of satisfaction that ‘I can’t wait to tell them that I was right.’ I am the type of person that I do like to be right! I was lying contented that I was right. Later was to prove after months lying locked in that I didn’t like being right.

I knew what I had was no ordinary stroke because when I woke up, I remember thinking, ‘What’s going on? Where am I?’ I always say it’s like being on a spaceship because ICU is all machines, all the beeps and everyone scurrying about. I heard nurses with a Belfast accent. I was in hospital, I knew I had not died, I was in intensive care. Belfast accents made me realise that I was in Belfast not Antrim. A nurse spoke to me and told me that I was in The Royal.

It was surreal just knowing you were in intensive care as I realised I must be very ill. I could feel that I was ventilated. I could feel the tubes in my mouth. But one of the first things I realised is that I could feel this tube in my mouth but my tongue is pressed on my teeth. I realised that I can’t move my tongue off my teeth. I realised that my tongue wouldn’t move at all. I remember then looking down and realising that I couldn’t move my head, but I could move my eyes. I looked down and saw lots of drips and machines hooked to me. It was then I realised how bad my condition was.

I do remember thinking that I must be quite ill but I had a real curiosity. I thought then that I must be going to live because it was realising too that my family weren’t there. Because, if I was going to die, my family would be there sitting by my bedside. I remember then thinking what time of the day is it and trying to strain to see a clock. I realised that it was early in the day and that they would not be visiting. I had to go for scans.

The first day I was in incredible pain and I remember feeling like my body had shut down. You could hear people discussing with others – as my body was in spasms – trying to work out whether I was having seizures. I remember thinking with the pain, this is so strange.

That evening my partner arrived. He asked me ‘Clodagh are you there?’ and asked me to blink once for yes. I remember looking at him and thinking, I can’t get this wrong; I need him to know that I am here. I closed my eyes, shut them really tight, counted to three, opened them and remember looking at him and seeing him really happy saying ‘I knew you were there!’ Straight away we worked out a system of blinks.

You spent three months Clodagh like this. One day, as you say, is a long time being locked-in. How did you keep yourself going?

When I got the first movement I think people misunderstand. When I broke out, there was no functional movement and I could barely make a sound. When I went to Musgrave after 6 weeks in the Royal, it took months and months for me to being able to press the nurse call button. We got a button with an audio recording that said ‘Hello it’s Clodagh here, can you help me?’ I could turn and hit that with my head. Nights were terrifying. Unlike you, if you were in hospital and you needed help, you could just hit a button. Suddenly I became aware just how vulnerable I was because I could not or press a button or shout for help.

But I would say that I was able to explore my own memories, relive my own life vividly, visit my memories from my childhood. I had travelled a lot. I was able to recall places almost more vividly than at the time I was visiting them. I could remember the smells, the sights, the sounds and would just close my eyes and lose myself.

Adrian and I had travelled down southern Africa before I had taken ill. I can remember the red sands of the Namib desert. Initially, when I had my stroke, my temperature gauge broke. They were concerned that I was going to die with heat stroke and I could hear them say that. I just took myself to remember everywhere I had been and travelled which was exceptionally hot. I would lie there and dream of the Namib desert and remember how the sands were under my feet. I’d remember I’d travelled round Ayres Rock. I have been in Cambodia teaching and remember the classroom being stifling hot. I would lie back and remember all those times where I had been places which were exceptionally hot. It was strange, I could almost remember the colours and the heat more vividly than at the time I was there. I could conjure up the sounds.

I would play my own life like movies in my head. I would spend time with what I would call my favourite memories.

How did that all help?

I had to do it. I knew myself, I would think of people and how they survive ordeals. I could not lose my mind. Also, as police officer, you are always taught about fight or flight and people’s responses either are fight or flight. I thought that, well, flight isn’t me so I am going to fight whatever this is. So, I went into my memories to keep myself sane. I had no television, I had no music so I could not pass time like you might in hospital watching television or reading a book. I had no stimuli so I knew it was up to myself to keep myself occupied so I would relive memories over and over again. It was like a rerun of my favourite movies, I would just rewind and start again from the beginning.

What did you learn about yourself as you reflected on everything in your life?

It was one thing I would say is that before I took ill, I always thought that I was never good enough at anything I did. I always wanted to be better. I had the time to look back and realise in fact I was quite brilliant. I always thought that I don’t run fast enough. As I lay there I thought, I did run fast enough. I thought I should have done better at work as I always wanted to do well. But as I came to lie there I thought, well actually, I did do a wonderful job. You have the time to reflect.

Most people don’t realise how terrific they are and appreciate all they have in their life. Suddenly I lay there and realised what a wonderful life I had had and didn’t actually appreciate it fully.

 

Adrian and Clodagh, before locked-in and after locked-in, what has changed in how you approach and see life?

Clodagh: I think that I appreciate every little thing now. As I said, there was a point where I couldn’t press a button or brush my own hair. When I had an itch on the end of my nose, I couldn’t scratch it. I appreciate every little small thing now like every day when I can get up out of bed, brush my hair, brush my teeth, make a cup of tea and just go to work.

On a Monday morning, when I drive to work, I am probably the only person in the country who drives in smiling! I am sure a lot of people think that I’m crazy because I drive in. I had to learn to drive in a different way. I hobble in and everything is a huge effort to get to work. I really appreciate that I can do it, that I could still be locked in. I feel that I have been given a second chance of life. We just now live every day to the full.

Adrian: I think before you could kind of just go with the flow in a lot of things. You could get wrapped up in your job and your life and making choices but you’re not really making choices; you’re just kind of doing the things that happen day to day. You just go along with things. You do get very burdened down and very stressed with work and life and all the rest of it. I think now, after what happened Clodagh, we do make choices now.

How conscious are you now Adrian about the choices you both make?

Adrian: We don’t have to do anything we don’t want to do. We actually will make the decision, ‘No we don’t want to do that.’ Instead it’s now this is what we want to do, this works for us. We take everything now at our own pace. There’s a little bit of acceptance of Clodagh now has disabilities. After a while, you have to come to terms with that this is different. A while ago we talked about the new normal.

This is now our life. This is the way we live. It’s not that it’s different than before, it’s the way it is now. We’ve accepted that and we enjoy it. We’re making the choices now doing the things we like and about doing the things that we want to do. There were times before when you felt obligated to do a lot of things. Your job can put a lot of pressures on you and you would feel obligated to do all these things.

Personally, now, I feel less obligated to anything. I feel very much that life’s thrown this at us, we didn’t ask for it, we didn’t choose to have it. So, everything we did prior to this didn’t change anything, this happened. I think now personally, I do make very conscious decisions about what I would like to do, where I would like to go, the time I would like to spend on things. I feel better because not much has changed but that I am doing what I choose to do.

It’s a very powerful thing in itself.

Adrian: It’s kind of how you accept things.

Clodagh: For me, I feel that my biggest achievement to date has been acceptance. I have to accept that it has happened, I can’t change it. Most people with serious illness or life changing illness or bad things happen to them, one of the biggest things to conquer them is accepting that it has happened.

Adrian: We have done that now and said let’s move on from here.

A lot of people find that incredibly difficult to do.

Adrian: When these things happen and from other people that I’ve met through this, there is a mourning period. Like a death, there are stages of mourning. Everybody goes through it and if you don’t go through it, you’ll never let go. You must let go as everything that you’re doing, you’re doing differently. You do make choices to do it. It is different than it was before but you have to let go.

You mentioned this Clodagh, allowing the time to be sad on that day, the anniversary when it happened.

Clodagh: I think when bad things happen, you’re allowed to feel angry and upset but you can’t dwell on them. It’s about allowing yourself to be angry and a little bit sad on the anniversary when it happened.

Adrian: It’s part of it. It’s like the anniversary of my mother’s death. On the day of her death every year, you’ll be little bit solemn and think about her and miss her.

Clodagh: I think it’s one thing people sometimes feel bad for being upset or angry. They feel that they must always be happy and positive but no it’s fine, you’re allowed to be sad. It’s OK to be angry but then move on from that. You can be angry and be sad and then it is a question of rechannelling that energy somewhere else.

Adrian: You’ve got to move forward.

What message or insight would you most like to share with other people who are struggling to overcome a problem in their life?

Adrian: Stop looking at the top. We have a new baseline where we started from two years ago so we never looked too far into the future. We didn’t look too far into the past either as we had that baseline. So, all the positive changes that happened were coming from way down at that new baseline. We can see improvements that we made. Because we are not looking at the top of the mountain, we don’t know how far there is to go.

You can take your positive feelings by last month this was different. This month we’re maybe walking a bit better, a bit further on the beach than a couple of months back. That is a real improvement. That brings us a little bit of happiness each time.

Clodagh: I think one of the big things is don’t compare yourself to other people. Just ensure that you as a person enjoy your day. If you enjoy your day, it doesn’t matter what somebody else is doing whether they are running faster or if they have a bigger house. Just as long as you personally enjoy your day and do what makes you happy.

Adrian: You know, recovery does – everyone talks about the recovery plateau – well, I don’t know if I will get any better. Little things do change: it’s the day to day things. I will come home from work and Clodagh will say to me ‘I walked around the house brilliantly today. It was just for half an hour but there was a period when like, that was really good. I was standing at the kitchen counter and reached for an apple and put my right arm out.’ It’s all snippets and we know that there is not going to be momentous change now. Everything is very gradual. There’s little changes all the time.

Clodagh: I think one of the great things to now is that all the time you want miracles to happen. A lot of people would say to me that I am a miracle. I would say yes, that I had survived, that part is a miracle but everything else has been hard work. I have worked really hard, three to four hours a day every day.

If  both of you were to describe your view of resilience, what makes resilience?

Clodagh: Don’t expect miracles. If you want something, you have to work at it. I knew that if I was going to talk again, that wasn’t going to magically happen, you have to work at it. It was going to take hours, months and weeks.

So, like everything in life, if at first you don’t succeed, keep at it, keep trying and don’t give up.

If I want to run again, it’s knowing that it won’t happen overnight. If I keep working and working and putting the effort in, it will lead to it. The big thing is accepting that there is only so much other people can do for you. It’s a personal responsibility. I think that I have to go out to the gym and work. Adrian can help me, physicians can help me, everyone I need will help me but I have to personally want to do it myself. If I don’t get up and do it, Adrian can’t make me do it.

Adrian: You have your goals. The focus is not running. The focus is today and getting to the gym to walk along the treadmill, that is the focus. You don’t lose focus. If you think of what she’s doing today and what her goal is, it’s so far away, you just might think, why bother? That’s too far and that will never to happen. So, you don’t think like that. You think that’s the goal, not the focus. If you are walking on the treadmill at level 1 today, the focus next week is that you’ll be walking at 1.5. It’s incremental. It is that shaving the door: you don’t notice the difference taking off little bits of wood but eventually you will.

It’s the same when I work with people coaching. The goal can appear big and ‘over there’. You need to take it step by step as some days are better than other. The focus is on each step.

Clodagh: You have to not be afraid of failure, don’t be afraid of failing.

Adrian: Yes, like smashing your teeth off the floor! (laughing).

Clodagh: I smashed front tooth and have a chip in my front tooth as I have fallen many times but don’t be afraid of failing. Pick yourself up and just give it your best.

Adrian: The other thing I also have to do as a carer is that I have to let Clodagh fall. You know, it’s like a mother and toddler thing, you can see the fall coming but you think ‘I hope she doesn’t hurt herself!’ And she does fall, and you go ‘Are you alright?’ and the answer is ‘Yeah, yeah!’ And you know she’ll learn from it.

Adrian, how do you avoid the temptation in a carer role to ‘fix’ or ‘rescue’?

Adrian: You see young mothers, often called helicopter Mums hoovering around their child constantly. The child doesn’t learn anything. It’s that as a carer, you have to stand back. I know Clodagh wants to get up and run out here and to be honest, if I let her, she would try it!

We go for long walks on the beach. She’ll go a that little bit further and I ask her ‘Are you up for this today?’ Clodagh will answer ‘Yes, absolutely’. As long as we have walked on that beach, we have never reached halfway. You’ve got to keep that in your head, you’re never halfway until you turn around. So, Clodagh will walk, walk and walk and I’ll go ‘Turn around now.’ And I know that you’re nearly busted: we’re halfway and then we’ll start to walk back. Then before we hit the car Clodagh will say ‘I’m busted!’ And you think, now she’s knows her limits that she can go halfway and has a better understanding of her abilities. But if I am constantly telling her, ‘We need to turn around now’, Clodagh wouldn’t know or learn limits for herself. It’s something Clodagh sets and does herself.

Clodagh: It’s nice to push your limits. Every time you push your limits you get new limits. It’s the same with the driving. I found at the start I could only drive a short distance. I might drive to Antrim. Last weekend I drove as far to Newcastle and back again and that was three hours.

Adrian: We would go out in the car and I would take the passenger seat. When it would get to the point Clodagh would say, ‘I’m tired, I can’t do this anymore’ and I would say ‘At least you know how far you went.’ And Clodagh would know how far she could drive and her limits. I would then just drive the car back again. We have just built it up and built it up. Clodagh will now say ‘I’m just going ahead here.’ As a carer, it’s easier for me as I know that Clodagh when driving alone sees her limits. If Clodagh wants to push her limits, we’ll do it together. I say, ‘I know you can safely do this, if you want to do more, let’s do more together.’

Clodagh: That’s been a huge part of my recovery. Adrian has been really helpful as with every problem I faced, he will always find a solution. It may not be the solution you choose. Initially in Musgrave hospital, I wanted to go to the beach to see the sea. All my therapists and nurses, everybody said no. But eventually, the top consultant, said ‘Yes, if she wants to go, she can go.’ But I couldn’t at that point do car transfers. I could barely sit up in my wheelchair. Adrian said right, if he’s allowing you to go, I’ll take you.

Adrian got in my wheelchair. My legs spasmed at that time so we didn’t know how to keep them strapped down. He bought industrial Velcro. He stuck my feet to the footplate of the chair. I couldn’t drink normal fluids as I couldn’t hold them in my hand. He took a special cup and brought the fluids thickener with him in a bag. He wheeled me on to the train. We took the train from Musgrave to Portrush. Every problem has a solution. So maybe I wouldn’t have wanted my feet stuck to the wheelchair but it’s what we had to do to get there.

Adrian: We thought if that’s what it takes, then that’s what it takes because we wanted to go to the seaside.

Clodagh: We got to Portrush station. Adrian bought an ice-cream and held the ice-cream for me.

Adrian: We brought the nurses back sticks of rock!

Clodagh: When everybody looks at the photos of me and my first trip to the seaside, they think ‘Oh that’s lovely!’. What they don’t actually see is that I couldn’t sit up in a wheelchair. I couldn’t speak. I kept falling over in the train as I had no core control. I was incontinent, my legs kept spasming, I couldn’t drink normal fluids. I could barely hold an ice-cream cone. Adrian was my team mate. I was willing to do lots of things just to get there and so was he.

The choice was hospital or beach. I was way happier with the beach.

How did you feel afterwards? What difference did the trip make?

Clodagh: It was a wonderful part of our recovery. It’s why I didn’t remain in hospital as long as I thought. Effectively, Adrian was my teammate. Together, there was nothing we couldn’t do. Everyone says that I am very determined as a person. I am very determined. However, when you are completely paralysed and can’t talk, you can be as determined as you want to be but you’re going to need someone to help you. Adrian has been that determined person beside me always. No matter what I wanted to be, he would work a way out and find a solution. And I think that is being a policeman: knowing that you have to, you can’t run away from anything, you must find a solution. It might not be a solution that you would choose but it moves things forward.

Clodagh, you had three big goals, return to work, driving and running. Two down and one to go. What else would you see looking forward, for both of you, which gives you a sense of expectation and joy?

Clodagh: I am looking forward to next month we are going to Barcelona for our birthdays. We don’t look too far ahead but I am really looking forward to that. I am looking forward to the small things in life. I enjoy my nephews and nieces. I look forward to spending time with them.

In many ways, I think I have changed a lot as a person. Before I took ill, if I saw children running and screaming or being mischievous, I would think, ‘Could you not get them to sit down?’ Now I get real pleasure in watching kids and people busying about, talking and running and shouting.

Nobody is promised their tomorrows so do enjoy today. You don’t know what’s out and around the corner or what’s going to happen. Some things you just can’t do today, for example you might save up for a holiday. Don’t be putting everything off for years and years. If it’s something you really want to do, just make it happen.

Clodagh: I find real pleasure in other people’s happiness. When I see other people smiling and happy, that gives me real pleasure. I know that a day can bring a lot of change. Maybe tomorrow something bad will happen. So, when I see a family passing and smiling I think, ‘That’s lovely, they’re happy.’ That makes me happy.

Follow Clodagh on social media
Facebook: https://www.facebook.com/clodaghbeatinglockedin/
Instagram: https://www.instagram.com/clodaghbeatinglockedin/

Author: Maire McGrath, Director, FutureSpark Coaching

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