Gavin - Interview 63

Age at interview: 47

Age at diagnosis: 45

Brief Outline: Gavin is a 47 year old media representative/spokesperson. He lives at home with his wife and two children. He is not working right now because of his stroke, but hopes to return to some type of work one day. His ethnic background is White British.

Background: Gavin is a 47 year old media representative/spokesperson. He lives at home with his wife and two children. He is not working right now because of his stroke, but hopes to return to some type of work one day. His ethnic background is White British.

More about me...

 

Gavin had a haemorrhagic stroke in 2008 while at home alone doing maintenance work. He felt “massive pins and needles” down his left arm and leg causing him to collapse. When he tried to get up he realised that he was completely paralyzed down his left side. He recognised that he was having a stroke and managed, with difficulty, to call for an ambulance. During the process of dragging himself to a phone he could feel his physical and cognitive abilities slipping away. He managed to mumble his postcode into the phone and an ambulance arrived shortly after.

 

While in hospital, Gavin was in critical condition with a 50-50 chance of survival. He pulled through and received hospital care for 5 months. He spent his first month on a hospital stroke unit and then transferred to a neuro-rehabilitation hospital for the remaining four months. He received physiotherapy, occupational therapy, and speech therapy while in hospital and was very happy with his care.

 

The stroke has left him with some mobility limitations (walks with a stick), limited movement in his left hand, vision problems (hemianopia on the left side) and spasticity (uncontrolled clenching of muscles in his left hand and toe). He also experiences fatigue which he manages by balancing daily activities with rest. He has regained his speech.

 

A significant challenge for Gavin was returning home after hospital to face the challenges of everyday life. He described his return home as “jumping off a cliff” where the comforts and treatment regimen of the hospital were suddenly gone. The transition was difficult not only for him, but for his wife and two young boys. His wife had to take on more responsibilities (take care of him in addition to their two sons) while his sons had to accept the changes in their father. He acknowledges the difficulty in trying to recover, while being a father and a husband, but has used his determination to fuel his recovery.

 

In addition to the support from his family, Gavin received formal support services after he was discharged from hospital, including assistance with dressing and bathing from personal care workers. He cancelled this care service after two weeks because he was able to do these activities independently and safely. He also received support from a visual impairment team who shared with him techniques to help him adapt to having partial vision. He continues to receive support from a local organisation with tasks around the house such as yard maintenance. He has found (through his own research) many assistive devices that enable him to do more activities independently (e.g., a mobile phone that reads documents to him, a bath chair, and a mobility scooter).

 

The biggest adjustment for Gavin has been the loss of his job as a media spokesperson (due to the stroke). He does not expect to return to the same job but hopes to return to work in some form in the future.

 

Since his stroke, Gavin has maintained his passion for public speaking and nature conservation. For example, he joined a local speaker’s club where he has won many awards. He also spends time outdoors in his garden growing vegetables. In addition to these hobbies he tries to contribute around the house when he can (e.g., takes his sons to school, cooks with his wife, and helps care for his sons).

 

His message to other stroke survivors is' “You will make improvements and those improvements are worth having, even if they’re not complete and perfect, it is worth getting back what you can.”

 

Gavin was home alone when he suffered a haemorrhagic stroke. With much difficulty he managed to...

My wife and two children were out so I was on own in the house. And I guess I was pretty terrified at that time. I thought, “Oh my god and here I am. I’m collapsed. I’m having a stroke and I’m on my own. I’m not even sure if I can get to the telephone to dial an ambulance.”

 

But at this point my functions like speaking, thinking and just cognition were gradually plummeting if you like. The, the effects of the stroke were getting bigger and bigger all the time. I think I only had a few minutes to find the phone and dial the ambulance before I would’ve been mentally and physically incapable of doing it. So the phone was in the adjacent room and I managed to push myself along with my good leg and pull myself along with my fingernails along the floor with my good hand. And I managed to get to the legs of the table where the phone, where the chair where the, the phone was resting. And I reached up with my good hand and grabbed the phone and pulled it onto the floor. And at that point I can remember thinking, “Phew thank goodness I, I’ve at least got the phone now it’s just a simple question of pressing 999.” So I managed to press 999 and hold the phone to my ear. But of course I couldn’t support myself with my left hand so I ended up kind of rolling over on my back because I could, I had no sense of stability. And the emergency services answered the phone and said, “Which service do you require?” And I, I knew I had to say ambulance but I couldn’t speak very well. I’d love to hear a recording of what I actually said. I remember trying to say it and it probably come out, it probably came out something like ‘ambulance’. And the man guessed what I was trying to say and said, “Is it an ambulance you want sir?” And I, I sort of, “Yeah, yeah.” And he said, “OK ambulance. What is your address and post code?” So I knew I couldn’t say my address it was too long a, you know the road name and everything (address) was going to be too long. I couldn’t speak very well at all at this point and I knew I just had to say my post code. And luckily at this point only a minute or two after the stroke had happened, the effects hadn’t become so severe that I couldn’t remember my post code. I mean since then my short term memory and long term memory have been slightly affected. But I meant, I managed to remember my post code at that time.

 

And he managed to get enough of it. And then he said to me, “Can you open your front door and make sure that all the pets are in the back garden out of the way.” Because obviously they don’t want to open the door and be attacked by a huge dog. So I thought there’s no way I can get to the front door and no way I could stand up to open the front door. And I’ve only got chickens anyway and they’re hardly going to eat an ambulance man. So... I’ve got two cats but they’re, they’re not lions. So anyway. Sorry I’m waffling. So I lay there and just hoped that I’d done enough. And at the time I was doing my best to shout help or in the hope that a neighbour might hear me and come and be able to let the ambulance people in. And I remember scrapping at the wall trying to get up to open the front door because I was worried they’d have to sort of kick in the front door to get in. But I lay there for a couple of minutes and then heard the sirens and I knew that the ambulance was coming out the front of the house. And luckily they had the sense to go up into my neighbour’s garden, jump over the fence and come in the back door.

The stroke initially took a toll on Gavin's marriage but him and his wife are finding ways to...

 

But there is undoubtedly a big challenge for both parts of a marriage when one half has had a brain injury that was affected, whether it be their mind or their body or both. And for me as a, [clears throat] someone who was a working dad, sole breadwinner, it’s been a massive challenge to adapt to my new life and my new outlook. My dreams and ambitions have changed. The, the goalposts have kind of moved. They haven’t necessarily shrunk, they just, the goalposts have just moved. Or become different.

 

But on the marriage thing, I think that’s been a quite big challenge for us to, to learn to work together, learn to both be parents and, and learn ways that I can contribute and help her so that she’s not really a single parent. I think for people with their personal lives, their relationships and marriages, that’s a big challenge. I can really only, only say to other people who might be in the same position to seek help, seek counselling and try and admit to yourself... If you’re the one that’s had the brain injury sometimes it’s difficult to assess yourself. Am I difficult to live with? Am I impossible? Am I an awkward, annoying person? Has the brain injury made me just impossible to get on with? No, it hasn’t. But to ask that question and answer it is quite difficult. You need to seek other people’s help and advice. And perhaps accept, you might be forced to accept that it has made yourself difficult to live with.

 

One of the things, one of the one of the top professors on neurorehabilitation said to me once that often parts of your, strong, strong and perhaps unusual parts of your personality that you had before your brain injury, like perhaps your determination can become enhanced after a brain injury. So if you had any bad parts of your personality that you had before they can become worse after a brain injury. So, I mean, if I was to ask you what are the worst parts of your personality, I don’t expect you to answer, but if you were to think and identify those things, and then say, “OK, imagine what I’d be like if those things were doubled or trebled, would I just be impossible?” And I’ve had to ask myself that question. There’s no doubt that there are some things about me like perhaps not always listening properly, perhaps I interrupt other people too much. I’m basically a talkative person and that’s part of my personality. It was part of my personality before. And I’ve had to ask myself has that got worse? Has my empathy with other people become less? Have I become more self-centred? I don’t think so. I think that when you’ve had such a severe shock to your life physically and mentally you’re bound to kind of think about yourself a bit and you’re bound to perhaps expect other people to give you a bit of leeway on some things because of what’s happened to you. And that can be difficult for other people.

 

I was talking about the marriage. Rebuilding my relationship with my wife as well as rebuilding my relationship with my children has been a huge challenge. I think we’re getting there.

 

 

Douglas Bader, a famous spitfire pilot in the Second World War was a source of inspiration for...

 

One of my great inspirations was a person who I don’t suppose you know, his name was Douglas Bader. He was a Spitfire pilot for the RAF in the Second World War and he had a crash and lost both his legs. But his life was flying, just like my life was my nature conservation work. His life was flying and he got given two prosthetic legs and started to learn to walk on them. It’s usually painful and difficult rehabilitation for what was a very proud man. And he got to the point where he could stagger around on these two wooden legs well enough that he thought “Hey, why don’t I get back in a plane and see if I can fly it with no legs?” And, sorry there’s a plane coming over now.

 

Yeah, this guy managed to learn to fly again with just two artificial legs, and he was so determined that he actually went back and joined his old squadron of Spitfires and Hurricanes and actually went and fought in the Battle of Britain to defend the troops evacuating from Dunkirk. And he actually was quite a successful Spitfire pilot. Shooting down lots of German planes when he only had two legs. And there’s been times in my life when I’ve need to get up the steps or try and use a lawnmower or anything and I just think in my mind ‘Douglas Bader, Douglas Bader.’ If he can get in a plane and fly with two wooden legs, then I can do anything.

 

Wow. That’s very inspiring.

 

That’s the kind of thing.

 

Do you ever have moments where you feel frustrated?

 

I just break down and cry.

 

Yeah.

 

Lots and lots of low moments but since the very first time that I regained consciousness in hospital and friends and work colleagues started to visit me, I’ve always tried to be positive for the benefit of, of others as much as anything else. Almost like a bit of a shelf really, you know, I would say, someone would come and visit me and instead of saying, “Oh God it was horrible last night, you know, I couldn’t get to the toilet” or something, “and I did it in my bed because, you know,”.. it was very difficult at first with the, just a blob in bed that couldn’t move, instead of saying that I’d say, “Well I’ve managed to kick the end of the bed with my left leg,” or “I managed to move my, one of my fingers this morning.” You know, I always tried to, I always did try to tell people the good things that I’d achieved and be positive.

 

 

Gavin spoke about his determination to get better and how incorporating his interests into his...

 

But because I was as I say, the media representative for a charity speaking in public and in front of a microphone or a television was an important part of my job and so, although I realised when I was discharged, you know, within a few weeks of my stroke that I could still speak I wanted to get out there and see if I could, prove that I could still do that oral communication side of things. So I joined, joined a local speakers’ club in [name of city] on, in October 2009 and I’ve been going ever since. I’ve been going for about 17 months I think it is. And I’ve actually won seven of the club public speaking competitions in that time. And in fact on Thursday last week I won their annual club speech competition, giving a, a talk about inspiring people to grow their own food. And the result of that means that I’ve got to go forward to the regional finals this Sunday. And so I’m very proud, proud but slightly nervous to be doing that.

 

But I always thought that all of these things like learning to speak better in public since my stroke, or if you like rediscovering and refining those skills that I had before and learning to walk and so on, even if I don’t get back to work they’re always going to serve me well. I mean, learning to speak better and, and communicate better and walk better and use my hand better, those were always going to be very useful things to do even if I didn’t get back to my job. So here I am. My arm has improved slightly from not being able to move it all to the point where I can easily bring it up to touch my chin. And the hardest thing is to actually straight, and raise it above my head. I sound like I’m in an awful strain but it is really difficult to actually hold it up there. It’s really, really difficult. And there’s a lot of people suffer from a thing from, called spasticity which is the uncontrolled clenching of muscles. And I suffer that in the bicep, which stops this hand being able to relax, down like that it just always stays slightly cocked. But more importantly, I can’t open my fingers. So it means that I can’t, sorry, I’m not going to touch your microphone but if I wanted to reach out with my left hand I couldn’t open, you know, I couldn’t open the fingers. I’ve actually got one finger that works quite well, that’s my little finger. For some unbeknown reason my little finger works a bit but none of the other fingers will work. So I’m having to learn to write with my right hand, which is my non-dominant hand, or it’s my dominant hand now I guess but before my stroke I was left-handed. And so I’ve basically become a one-handed person that limps around. And I know that my determination has helped me a lot and got me through. I could have just sat in a wheelchair and given up but I wasn’t going to do that. I’ve done lots of cooking, I’m a keen cook and I’ve grown vegetables and I’ve done my public speaking.

 

 

The transition home was difficult for Gavin and his family as they all had to adjust together.

The only thing I think perhaps that, the transition between hospital and home could have been a little bit softer. It was a bit like jumping off a cliff. I hit the ground at home with a bit of a thud. And that was very hard for us all. Perhaps we could have had more, a sort of one day supervised visits at home to get me used to the place and, but maybe that’s expecting too much. It was hard, I’m not saying I’ve got the perfect answer for it but the nurses in hospital are fantastic.

 

But that was part of the, the issue, that going from 24/7 care to having a wife and two children and having to look after myself to a large extent was a big jump.

 

A big leap.

 

So can you give some examples of maybe what would have made the transition easier? Can you think of specific things?

 

Well I’ve mentioned perhaps a few more, a few more day visits.

 

So what would that entail?

 

Maybe a physiotherapist or an occupational therapist coming here for a whole day and possibly even a whole night. And that’s the thing, I mean, at night I had to get up to use the loo and I was very unstable. I had a bottle by my bed to use, that sort of thing, when I first came out of hospital. Because it was very difficult for me to get out to the loo. Because I was pretty unstable on my feet. I could walk a bit but, you know, in the dark, there’s a whole lots of issues really getting up in the dark and moving about, you don’t want to put the lights on. I didn’t want to wake up my wife. My wife was very good, she’d have happily let me wake her up but I didn’t want to. I found using a bottle by the side of the bed, this sort of thing. I just suggested that perhaps occupational therapists or physios could have stayed overnight, that’s a bit ridiculous because I couldn’t expect that. But I guess the whole point is life at home involves days, nights, it involves times when the children are here, times when they’re not. It involves you know, there’s so much that being a dad and a husband in a house with two kids involves that was a shock for me to come home to. I haven’t got the perfect answer how to make that transition other to have perhaps, perhaps I could have had more whole weekends at home before I came here permanently. Perhaps my wife and I could have been counselled or had more discussions about how we were going to deal with these challenges and how we were going to face up to them. And a lot of the things I didn’t realise how difficult it was going to be till I actually got here. One of the things I think was the, you know, the children are very noisy as all young kids are, they run about, they play, they play fight, they argue, they laugh and giggle and, and throw cushions around and just all sorts of things. And the chaos, having had a brain injury coping with levels of chaos is quite difficult. And coping with a chaotic, you know, children leaving toys on the floor and the busy-ness, the manic-ness of this household from the hospital was a hugely mental and physically challenging thing for me.

 

 

Gavin talks about fighting to recover versus acceptance.

 

But it’s important that people who’ve had strokes and brain haemorrahages don’t work too hard at it. That sounds like a bit of a contradiction, but you can get yourself very exhausted to the point where it then makes you incapacitated the next day.

 

Like for example, if I spent a few hours on my allotment doing something quite physical, which would be very difficult, I would be wiped out and I’d have to have a long sleep when I got home. And when I woke up after the sleep I would still feel pretty awful and probably the next day too. So it’s a bit of a juggling act to push yourself but not too hard.

 

And I’d love to try and help people, other people to achieve that balance in order to maximise their stroke recovery if I could.

 

Right, that’s really interesting.

 

So...

 

So finding a balance between trying to recover but not ...

 

Hmm.

 

... over...

 

Yeah.

 

... over doing it.

 

And I think one thing that’s quite useful to mention, a thing that’s been preying on my mind quite a lot for the last two and half years is there’s one group of people on, on the one hand that say you can get better, you’ve got to be determined, you can do it, you can walk better, you can do, everything, your eyesight will come back if you, if you in your mind you will it to happen. And then there’s another people on the other hand saying, part of your psychological and physical recover is acceptance, accept your condition, accept that your eyesight won’t come back, accept that you’ll probably always walk with a stick or in a wheelchair. And once you’ve accepted that, the acceptance facilitates greater happiness and it’s, you know, once you can accept it, that’s part of the process of rehab. So the two conflicting arguments are accept it and don’t accept it. It, don’t accept it means work hard and fight against it. Accepting it just means let it in, accept that you’re now Gavin that can’t see properly, can’t walk properly.

 

Do you think that you can do both?

 

Whooo.

 

Just listening to your story it sounds like...

 

Now there you’ve nailed the...

 

Yeah,

 

You’ve hit the nail right on the head. Can you do both? Yes. A bit of both. Sit on the fence.

 

Listening to your story ...

 

God.

 

... you know it really sounds obviously you’ve been very determined in your recovery but I also hear that you’ve accepted what’s happened. Did I get that right?

 

Well, have I accepted it? I have days when I don’t feel I’ve accepted it. I have days when I just think, “Damn, Damn, Why? Why did you do this to me? Why me? Why me?” I know that I just think, “Oh. I’ll worry about that later, I’ve got to get up and escort the kids to school.”