Interview with stroke survivor Desney King

Jude Czerenkowski National Programs Manager interviews stroke survivor Desney

Desney King describes herself as having been ‘a very fit, healthy, full-on working woman of sixty’ when her first stroke hit. She was a highly regarded book editor, well known particularly for her work on complex non-fiction and illustrated books.

Desney had three strokes over a two year period, with her last stroke occurring in 2014. She has experienced cognitive changes, general muscle weakness and persistent, crippling fatigue. We caught up with Desney to discuss her stroke experience, and what life is like when your stroke recovery is not what you hoped for. She discusses the practical and personal strategies she has used to create her ‘new normal’ and the role acceptance has played in her life after stroke.

Can you tell me about your strokes?

After my first stroke I had significant right side weakness and numbness. My swallowing and speech were slightly affected and I had noticeable cognitive impairment, particularly in the area of short-term memory and processing of a detailed sequence, and that's still the case.

My first neurologist did a really rigorous raft of neurological testing to rule out multiple sclerosis or any of those weird neurological disorders because my case was so unusual. All the scans have always been clear, so it's been mysterious from the beginning. A nuclear brain scan was done and it indicated that I had had a brain stem stroke. That's now the accepted version of what happened to me and it makes complete sense to me. It's unusual in that all my strokes affected the same area of the brain.

Is fatigue the biggest issue for you?

Yes. It affects my daily life and it massively affects my quality of life. But it’s also the fatigue in combination with my particular cognitive impairment – together, they prevent me from driving, working and doing any creative writing. I have three novels nestled in my laptop, and also used to write a blog. The increased fatigue since the third stroke last July has finally stopped me from blogging which was my compromise when I could no longer work on the novels.

The main thing I need to say to you about fatigue, it's not tiredness. I feel wide awake now but I'm reclining on the bed, which is where I spend most of my life, so it's not tiredness it's a different thing all together. I suppose my experience of stroke is that it is though suddenly someone has slammed you with complete fatigue.

When did you start thinking this was more than being tired and unwell after your stroke?

I remember the nurse talking to me about three weeks post stroke and I was so fatigued, and so weak. Basically she said, ‘Look, of course you’re tired, major life event and so on...’ but fatigue was never mentioned.

I would say by the time eight weeks had gone by and I was still really fatigued I was starting to wonder. I had to ask questions and do a bit of digging and the general impression I got was that it was common and that it would slowly improve. I also knew that in a very small number of cases it would take a long time, and in a tiny number of cases it might never go away.

I remember around six months sort of thinking, 'Oh wow, I really hope I'm not one of those people where it's never going to go away’ because there was no significant reduction in my fatigue.

When you saw your first neurologist after your stroke, did you have a conversation about fatigue?

I did and he was very dismissive. He made me very angry because he decided very early on, and I'm not sure why, that although he was picking up on my deficits with his neurological testing, that my problem was psychological and that I had had a nervous breakdown.

He insisted that I see a psychologist which I did and he wrote a glowing report saying that I was handling my circumstances extraordinarily well and that I've got a zero on all the depression scales. The neurologist of course said I was smart enough to fool the psychologist!

My experience with him caused me a great deal of additional distress so I changed neurologists. I've got a lovely young neurologist now who basically says to me, ‘Look, there's just so much we don't understand.’

I think anything that can't be physically seen is something that people really struggle with. I've heard a lot of people say that people will assume that because you look normal, everything must be back to normal. So you're not only dealing with the impact of the stroke, you're also dealing with all the negative responses that you get.

That's true Jude. The fatigue and the right side weakness, it's still with me, so I've been walking with a walking stick. The physio early on said to avoid using a walking stick, to do everything possible to get your body to return to normal. So I really tried, I persisted with that for three or four months, until I found myself in situations where I would walk up to the shops, I'd do a little bit of shopping and I couldn't walk home. I would have to call somebody to come and bring me home. So I got a hold of a walking stick which I only used to help myself get home and it freed me up a lot. Recently my balance has been poor so I’ve started using a walker.

The third stroke did something else in my brain and it's rendered me unable to sit up in a chair for more than about ten minutes at a time. I can only do that two or three times a day. When I sit up a terrible fatigue overtakes me so that I have to lie down. It's the same with standing upright. If I'm walking around my retirement village here, which is my daily exercise, if someone stops me for a chat I have to lean on the wall.

I suppose that's the other thing I wanted to make clear to you in this discussion is that every kind of interaction increases my fatigue level, so it drains my energy. Whether it's emotional, doing something physical like standing, or sitting upright, or something mental, they all sap energy. I have to manage that very mindfully all the time.

So any kind of exertion, emotional, mental, as well as physical, has an impact?

Yes. This is since July last year, this inability to stay upright, it comes a close second after fatigue in diminishing my quality of life.

If I have to do a really major thing, like for example a routine appointment with the eye specialist last week, even though I get picked up at my door, driven to the door, there's still a bit of walking involved and then sitting up in the waiting room. It's hugely difficult and I have to ask to lie down and then it will take me three or four days to recover to what I call my baseline.

Anything excessive is very difficult, so in that sense it could very much like what chronic fatigue sufferers describe. Trying to push past is very counterproductive. I've tried it. Early on, I would try it because there was that thing of you know, you just have to really work at it, try hard, and oh gosh, it just puts me severely to bed for days.

Sometimes of course, I inadvertently push past. In August, a dear friend of mine died and I really wanted to go to the funeral. My daughter took me and wheeled me in a wheelchair. It was just about a month after that third stroke when I was just coming to grips with this uprightness being having become an issue. It turned out to be a very long funeral. I was sitting with my head dropped and my feet up on the foot rests and clinging to the arm rests of the wheelchair and of course, very emotional as well.

It took me two to two and a half months to recover from that, energy wise, fatigue wise. My feeling is, more from the physical overexertion than from the emotional. Of course there’s an emotional component to all of that, but it was the physical excess that affected my body so badly for the next couple of months or so.

Also, if I get sick, I had a mild virus about a month ago and it took me about month to get through it, recover energy, even though I really wasn't very sick at all. Everything that happens, that takes more energy than my well-managed, normal day, it drops me terribly for quite a long time and then when I come back my baseline has slightly reduced a bit.

Over the three years, just every little thing drops me below my baseline. When I get back to what I consider normal, the baseline is slightly reduced. So I'm much worse now than I was six months after the first stroke. You know, I could still go out then and I'd walk to the shops every day. Now I do all my shopping online. All of it, clothes, groceries, books, everything, because I can't walk to my little supermarket which is two blocks away.

Apart from between a five and ten minute walk in the morning, twenty minutes sitting up to eat and standing up regularly to look after myself, basically I spend the rest of my time on the bed.

I’ve heard a bit about you making a chocolate cake from a colleague...

Oh the bloody chocolate cake!

I had had a hankering for cake, particularly chocolate cake. Anything major like making a cake that I do, it takes a lot of planning. When I was doing my supermarket online order I fixated on this idea of a cake. I used to love cooking and baking and I've always been a good cook. I've never made a packet cake in my life, but I thought, okay, I'm sure I'll be able to make a packet cake. So I ordered a packet cake and I was shocked when it arrived to realise that I had to add butter and eggs.

That's a classy packet cake obviously.

Yes! I had those ingredients fortunately. I'd unpacked my order and I waited a couple of days after that to get enough energy and until a clear morning when I've got absolutely nothing else that has to be done that day.

I gathered the ingredients, gradually, while I was having breakfast so that it wasn't just one big whack of energy use. Then I turned the oven on and all I had to do was melt the butter in the microwave in a separate bowl. That's a sequence, that's a process and following instruction, that takes a huge amount of energy for me. That's that very specific cognitive impairment I have.

I had to beat the two eggs in the bowl, and I had to melt the butter in another bowl and then I think there was water or milk or something and I measured that and then pour it all into one bowl and mixed it with a wooden spoon. I've got a stool in the kitchen for when I'm not good. I try and stand up whenever I can, but by then I was sitting on the stool. I mixed everything in the bowl and then tipped it into the tin and I was absolutely shattered.

By the time I was stirring with a wooden spoon, I knew it was something that I wouldn't bother trying again because it wasn't worth it. I'll just get somebody to buy me a cake. That's a really frustrating reality check, something like that.

Did you actually enjoy eating it over the next couple of days, or was it a little bit bittersweet?

It wasn't bittersweet, I did enjoy it. Fortunately I've been just generally, loosely a practitioner of Buddhist practices for about the last thirty years. Basically that involves gratitude, being in the present moment.

Since I'm no longer able to multitask, being in the present moment is very valuable. To be aware of that as a practice rather than a limitation and to practice mindfulness and acceptance. I've realised, probably about nine or twelve months into this experience, that being frustrated, being upset, being angry, wondering what the future held, all those things were wasting very valuable energy and affecting everything else, so I don't do that anymore. So I just enjoyed the cake.

Good. How has your Buddhist practice helped you do you think?

It's been a huge amount of work but it's been really valuable work in my view. Despite having a really very limited capacity to do what most people consider normal, I'm happy most of the time. I'm content. I'm peaceful, most of the time, but I work hard at that.

Well, no, it's not hard work, that practice of acceptance.  Acceptance I know, is nothing like giving up. It's nothing to do with giving up. It's accepting what is, so that you can maximum energy to everything you can do and still be optimistic.

I never give up, but I deeply accept my situation in order to maintain peace of mind.

That's obviously a very powerful approach to your situation. Are there other practical things that have helped you in living with your fatigue?

The two things that were dreadful after my first stroke were the neurologist I saw, but also the terrible battle with Centrelink to get a disability pension. Being on the disability pension is hugely beneficial. To know that I've got a steady income, that I'm independent financially. In Sydney though, that wouldn’t pay an ordinary rental. I was very, very lucky, even though I'm under 65, to be offered a permanent rental home in a retirement village. I moved here about fifteen months ago. Up until that time friends were subsidising my rent.

So having affordable housing is something I don't have to think about. Also, the housing that I have got, it's a small lovely space that's up high. I've got a beautiful view of the sky, the rooftops, and the treetops. A tiny one bedroom unit, but it's more me.

Those practical things are hugely helpful in managing my state of mind. Not too much space, not too much stuff. Because acceptance really is letting go, letting go, letting go, and that includes letting go of stuff!

Emotionally, when I do feel myself sliding into a slump or hitting a wall with something that's bothering me, I've got a very good friend who will come and do a hypnotherapy session with me. That's brilliant. It's brilliant because it's deeply relaxing and it helps me deal with any mental or emotional issues that I'm struggling with.

The other thing is the internet, I couldn't live without it. I think I'd go crazy without the internet. I stream TV. I do all my shopping online as I mentioned. I buy eBooks.

And visitors! My friends have been hugely important. To make a point of visiting, or phoning, or even just liking my post on Facebook. That's something that I can't control and it's been one of the issues I've had to deal with because when you skip out of the normal social context, people start to forget about you and some people just never visit me.

Ironically, I can only cope with one or two visits a week, energy wise. But some weeks I don't have any visitors. I guess that highlights how important the internet is. Just as a connection with the outside world.

It would be terrible of me not to say how extraordinary my children are, I had my kids really late, and they are now 24 and 27. It was a terrible shock for them, when I had the first stroke. My daughter was my in-house carer through all the tough early stuff and she continues to be amazing in my life. And my son had been traveling, but he's also fantastic, so they're absolutely there for me. Without them the social isolation would be pretty hideous.

At the very beginning, can you imagine what it would've been helpful for you to be told by a health professional about fatigue?

Look, that's a very tricky time because you don't want to be playing mind games with terrible things that might happen to you. But at the same time you need to know the truth. I remember at a certain point saying, ‘If this is as good as it's going to get, I don't know how I'll cope with this. I can't imagine how I could live with this.’ Around that time I was also starting to understand that I probably wouldn't work again, but you just keep hoping. But to have been told that fatigue can be a very real aspect of consequence to stroke, would have been helpful. Just to be acknowledged.

To be told by somebody in the medical world, that it is real and these are the strategies that people use. That there's a good chance you will slowly recover from this, and a slim possibility that you might not. To have it made very clear, from very early on, that fatigue and tiredness are very different things.

If you were talking to a recent stroke survivor and fatigue was an issue for them, what advice would you give them?

In a way, I feel as though I wouldn't want them to know about me because I think, early on to know that it could be like this, it could be devastating.

Your situation is very particular. I think the stroke recovery narrative is very powerful, and we all love to read about people running marathons again, or writing books – all those kinds of things. I think that's very inspiring, but it also can also be quite distressing for some people.

I completely agree with that. I always feel really happy for people I meet along my path, but it also can make me feel increasingly isolated, to hear those stories. I still want to hear those stories though because for every individual who has that kind of improvement in their quality of life, it's great. It's good to hear those stories, I think, for me it is anyway, because I've always been altruistic so I can separate my feelings for them from how it makes me feel.

But I think there would be value in telling the other side of it. Maybe if it can be presented as some kind of success story, say for example I know I am managing my situation very well even though it's a tough situation. But I don't know what impact that might have on other people, particularly people early on in the recovery process.

Are there other things that you found useful?

If I was just generally giving others advice, I'd advise acceptance basically. Acceptance, which is nothing to do with giving up! Acceptance allows you to work out all the energy saving strategies you can. Get really clever about energy saving strategies, so that everything you do is really helpful to you. Don't waste your energy on anything, get rid of people who cause you grief. Let them fall away.

I do basic physio exercises every day.  That takes five minutes, and it's very simple, and I go for a walk every day. Those things are really valuable to me, to maintain what I want to do, so I do it when I can. Get organised and use your energy for yourself, for everything that's going to give you the best chance to recover well.

There's an American author, Toni Bernard, who has had chronic fatigue for twelve years, she was probably a person a bit like me previously. Her Facebook posts are really good, her approach matches my approach. I rarely find anything that I haven't already worked out for myself, but it's very affirming to read her posts and she's really honest and upfront, but in a very gentle concerned way about how to deal with people who are giving you grief and that kind of stuff.

I also find Brain HQ useful and it's helped me with my balance, my physical balance. For other people it's really valuable to know that it doesn't just help with cognitive improvement.

And a salvation I forgot to mention: crochet! A craft I learned in my teens and still love. It gives me a creative outlet, and a way of giving something to others. I order my wool online from Bendigo Woollen Mills, and mainly crochet rugs and blankets which are easy but lovely.

I know that you haven’t recovered as much as you would have hoped for, and listening to you, I know it's tough, but I also hear the beauty and the peace in it as well.

Thank you Jude. That's accurate and it's not easy, as I've also mentioned, but to be heard and to be acknowledged is very valuable.