Desney King: Life After Becoming Disabled at 60
Desney, a writer, author and mother, shares her journey after experiencing stroke and how it has impacted her daily life. With constant fatigue being a major factor, Desney candidly discusses how acceptance has been a liberating gift from her stroke.
Desney discusses her latest book, "Transit of Angels,"; a love story about a 34-year-old woman, Angelica, and the journey she embarks on to find meaning in her life.
You can buy the book here: https://desneyking.com.au/purchase-toa
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Peta [00:00:03] Hello and welcome to The I Can't Stand Podcast. The podcast answering your questions on what life is like when you have a disability. My name is Peta. I have cerebral palsy. I'm your host. This week I have also an amazing person all around. Desney King. Desney became disabled at the age of 60 through experiencing a stroke. Now having many strokes since then, I was really keen to hear her perspective on what it's like to become disabled at the age of 60 and what her perspective is on disability and the disability community overall. Without any further ado, let's get into it.
Desney [00:01:01] I'm Desney King. I'm 71 years old. I'm a mother, a grandmother, a writer, an author. And I'm disabled. I became disabled at the age of 60. And when I had a stroke, just dropped me when I was sitting at my desk working.
Peta [00:01:22] Well, I have to say I'm excited to talk to you because I don't think I've ever spoken to anyone that's become disabled so far into their life. And I really think you have an unique perspective when it comes to that. I mean, many of the listeners might have a little bit of background with stroke, whether it's one of their loved ones or themselves. I know I do. Did you have any perception of what stroke would be before you had a stroke yourself?
Desney [00:01:51] I did, but but it wasn't comprehensive because I've done healing work and so on. I've known I've worked with people who've had strokes, but I had a very limited understanding and a very narrow understanding of what a stroke was, what it could do to people and what caused the stroke. I was working as a freelance editor, so I was sitting at my desk in my bedroom. It's 10:00 on Thursday, the 23rd of February 2012. You don't forget those things. And I was deeply immersed in in writing the final report. Suddenly a terrible feeling. It was like an unimaginable heaviness just flowed from the top of my head all the way down through my body and took all my energy with it.
[00:02:53] As it was happening. I thought, Oh my God, I'm having a stroke. And then I thought, i can't being having a stroke because I'll be finish this report in an hour. I've got a deadline. Have to get going. I desperately wanted to lie on my bed, which was very nearby. But I had the strongest gut feeling that if I did, I would never get up. Short version is that within an hour I was at my nearest hospital. It still mystifies every neurologist I've ever seen. Nothing shows up on MRI's or CAT scans. So it was it was more than six months before a very advanced nuclear scan showed what had happened. And what had happened was that I'd lost perfusion, which is blood flow and flow of the electrical signals at the top of my brainstem and in my frontal lobe, which is a cognitive, very specifically cognitive area to do with details, lists, ordering lists, etc., etc.. I had severe fatigue at the beginning, and I'm one of the very small percentage of stroke survivors for whom constant, severe fatigue has remained.
Peta [00:04:28] That was going to be my next question all about fatigue. And because I suffer with fatigue, too, but I'm not going to assume my fatigue is nearly as bad as yours. And for me at least, activities like writting and making sure sentences make sense are very fatiguing for myself. So how do you manage being an aurthor and managing your fatigue?
Desney [00:04:53] Everything I do impacts my fatigue. So I guess the simplest way to help people understand is that when I wake up after a good night's sleep, my fatigue measures seven out of ten. Sleep doesn't help, as you would know. Sleep has nothing to do with remedying fatigue. So I have to prioritise what I do in a day. My superpower was structural editing. So holding 200,000 words in my head and making a jumble into something that read really smoothly, I can't do that anymore. One of the most brilliant things was that my novel, Transit of Angels, was in its 13th draft, so pretty well finished, that day I had the stroke, luckily. But there are two more that will forever be that 10,000 words or so in my laptop. I can't write because I can't. I can't with the detail and the big picture. When I write, I write. In short, in one short burst. And that's my job for that day. I realised along the way that deep acceptance. It's liberating, so deeply accepting that this is how I am and this is how I am today. Now I waste, no energy on anything but doing the things I can do today. It's been a huge gift from the stroke.
Peta [00:06:38] You have already spoken a little bit about your book, so I'm going to jump forward to what I was going to ask you and ask you what your book is about. It's called Transit of Angels.
Desney [00:06:48] Yes. Well, really, it's a love story. It's about a 34 year old woman, Angelica, whose husband is killed in a motorcycle crash. It's written in the first person. So Angelica is telling us about the first two or three years of her grief and how she manages to live through that and eventually begins to see a way of living again and a way of moving forward with a completely different life without Bill, who she loved very much.
Desney [00:07:26] From one of Australia's much loved authors, Jenn J McLeod, who gave up five stars, bless her. And she said, "My first comment is for a debut novelist. The plot line was a brave choice, expertly executed and so engaging. I'd been hoping to find a book I could fall into and be carried along effortlessly. I wanted to journey somewhere beautiful. Transit of angels was perfect in every way. If you have loved. If you have lost. If you are lost. Transit of angels is a story for you. We can all benefit from reading this one." So thank you, Jen, that she says it better than I could say it.
Peta [00:08:19] I find it fascinating that you had this book sitting on your computer for a number of years. You had your stroke and then you finished it. And when you think about the themes that are in the book about life and death and a new perspective on life, is that irony of how those how it can mirror some ways in your own life? Did you think about that as you were finishing the book?
Desney [00:08:44] No, that didn't occur to me. Article is more. More related to the fact that when I was practising as a healer, I felt was drawn or cold to work quite a bit with people who were dying and with their families. I became very, very conscious that in our Western society we don't do well with death and grief. We don't talk about death and grief. We don't know what to say when someone dies. We don't know what to say to someone who is grieving either in the early stages or more or just as importantly. Some years later on, many years later. And so that's that was my driving force that didn't. I didn't I didn't need grief regarding my stroke until probably about two or three years ago. So, you know, out of 11 years, it didn't occur to me to hit grief for myself until relatively recently. So no, it was in the connection.
Peta [00:09:59] And through speaking to other people on this podcast that have come from a health background before they became disabled, in particular, they found becoming the patient rather than the carer really challenging. Did you find that process challenging?
Desney [00:10:16] It became very clear to me. As I healer that I had. I had a choice. And that was either to go with the expert medical people who were really wanting to help me or to say, no, no, I'm a healer, I'll I don't want to have anything to do with that. It was very clear to me that I needed the medications and I needed I needed to respect all the medical; the wealth of medical knowledge about stroke, how to treat it, how to treat the atrial fibrillation, which is a heart condition which had in fact caused my stroke. So it's a matter of respect and also a matter of safety.
Peta [00:11:08] And knowing that you've made that choice to head down the medical but the formal medical side, the with the Western medical side. Are there any practices that you still use in your day to day life around meditation and gratitude that help you?
Desney [00:11:25] All the time. All the time. And it's another gift from my stroke and from the fatigue that I'm slow. Everything is slow. I have to live mindfully because of my memory, because my safety when I'm when I'm moving around. My life is a meditation. My life is mindful and gratitude is a massive part of my life. I'm and also, I think Peta. Right from the beginning. I had a fairy godmother when I was born. I'm sure I did. I was born. 100% an optimist. Grateful, even tempered. Sunny natured. You know, those things that have come into their own as a disabled woman and an older, disabled woman. Who lives primarily on my bed. Propped up on pillows. That's how I live.
Peta [00:12:33] And I really think being...and it's so easy to say to just be positive. But I find for myself that if I try and always think of the positive side of things, I'm not angry with my situation. Yes at times when things go wrong that can be frustrated, that's only natural but I've really understood that not everybody thinks like I do. And I can only say from my personal experience, and I see it in you, that people who are positive in their outlook tend to have happier lives overall.
Desney [00:13:14] Absolutely, Peta. I do think that there is such a thing as toxic positivity and you've touched on that because, of course, sometimes we feel frustrated. Of course, sometimes a situation will to me just completely catch me unawares and throw me. But I am on I'm. Yeah. I always see the silver lining.
Peta [00:13:41] I also wanted to clarify and hopefully I'm correct, this wasn't your only stroke, was it?
Desney [00:13:48] Oh, no, no, I. I had probably three or four actual strokes and goodness knows how many more, maybe ten. What we've started calling stroke events. Usually my, sleep but not always. I would lose completely lose blood flow to my brain for a considerable number of seconds, which has the exact same effect as having a stroke.
Peta [00:14:25] And what people might not know. Listening to this, I know it's very common that people do have strokes in their sleep and they never know. So people listening to this could have had a stroke themselves.
Desney [00:14:37] Yes, that's true. Even people who have a stroke when they're awake, when they're at a barbecue, when they're with other people or wherever. It's very common for people not to realise they're having a stroke and not to understand and for the people around them not to realise that having a stroke. So big shout out to the Stroke Foundation here in Australia, the phenomenal is the information and support that they offer.
Peta [00:15:08] I'm really interested to ask you, considering you did become disabled at 60. How you view ageing and your disability?
Desney [00:15:18] What I'm finding is that age related deterioration is colliding with my disabilities. I'm described as frail aged, and I'm classified as geriatric. You know, I can laugh at those descriptions, but what's been happening to me, in the last really just in the last year or so, is that I have recently been diagnosed with Osteoporosis. Which probably might not have occurred had I not been disabled because I was an avid power walker and bush walker and, you know, is very physically active and I'm vegetarian, know a healthy lifestyle, etc.. So would I have had Osteoporosis had I not been disabled and living on the bed? Would I have had Scoliosis in my spine? Would I have had curvature of the neck? Probably not. In the last few months, the macular degeneration in my right eye has become what's termed wet macular degeneration. And that can send you blind very quickly. And for someone like me who lives on my bed, I have an overhead table like the ones in the hospitals. On it is my my laptop, my tablet, my phone, my notebooks, my paper diary, my life, my connection with the world really relies on my vision. As I said before, the only way I can live with that is to. Assume that I'm not going to go blind. Live in the moment. Be grateful for everything I've got right now. Take it day by day.
Peta [00:17:26] Do you feel like you were the same person you were before the strokes?
Desney [00:17:31] Oh, gosh. That is that is such a complicated question, really, because my life has been so slowed down. Because I live. 85% of the time on my bed. I have been granted the privilege and the opportunity of. Doing deep in a work, in a personal work. And I think I am more myself, my real self now. And I have ever been since I was a small child.
Peta [00:18:13] I don't think a non-disabled person would say this to you, but I'm really happy to hear that. That's lovely.
Desney [00:18:20] Thank you.
Peta [00:18:22] So, is there anything you don't like about having a disability?
Desney [00:18:27] Wouldn't said don't like. But there are things that I miss being... I miss spontaneity. I miss being in the surf. And so our road trips, which is one driving. But I don't dwell on them. There's no point going on them. I deeply accept that those things are no longer possible in my life. And what I love is when people share their travels and so on, on social media and usually I will pop in a comment and say, Thank you for taking me with you.
Peta [00:19:09] What do you love, or maybe not love is too strong a word. Is there anything you like about having your disability?
Desney [00:19:17] It's almost love. I think in a way, I. It started out the people around me quite quickly, actually. And that's that's something I've been I guess, that's been with you all your life. But certainly at 60, you think you know who your closest friends are. And I've learnt who really loves me. And that's precious. And I've also had the opportunity to meet some many wonderful support workers, people I would never have met. Had I not been disabled and I not joined the NDIS.
Peta [00:20:03] Is there anything you wish people better understood about living with disability or living post having a stroke?
Desney [00:20:12] That it can occur to anybody at any age. It can even occur to a foetus in utero. So please don't make assumptions about people who've had strokes.
Peta [00:20:26] What do you hope for the future for people with disabilities?
Desney [00:20:29] That government's listen to the increasing number of wonderful and sometimes loud and proud disability advocates and and governments all the way through, from federal to state to local council who look after footpaths and ramps and etc., etc.. I hope that does. As things accelerate the advent of accessibility on all levels and awareness and respect on all levels accelerates.
Peta [00:21:13] Thank you for listening to this week's episode. I hope you enjoyed it if you did. Can I encourage you to leave a writing interview? If you listen on Apple Podcasts or follow the show on whatever podcasting platform you're listening on. Please share the show with a friend or on social media. It all helps more people find the podcast. Don't forget, you can always follow me on Instagram. My handle is @petahooke. I share my life and what it's like for me living with a disability. But until next week. Have a good one, guys. Bye.
Peta [00:21:58] I'd like to pay my respect to all Aboriginal and Torres Strait Islander cultures. But especially to the Bunarrong people where this podcast was recorded.