Lisa interviews Kimberly about her past life as a romance writer, being a life skills coach, and about having compassion for yourself.

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Send comments and questions to [email protected]

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.

Transcript

Kimberly Parsley 00:06 Welcome to Demand and Disrupt, the disability podcast. Here, we will learn to advocate for ourselves and each other. This podcast is supported with funds from the Advocado press, based in Louisville, Ky.

Lisa McKinney 00:01 Hello, everyone! Welcome to Demand and Disrupt. I'm Lisa McKinley, your new host number two. Kimberly and I will be sharing some of the hosting, so I’m so excited to be here and to be able to conduct this next interview! If you've been listening to the podcast for some time, you may have recognized that many of the guests featured on the podcast have also been featured in the book, “A Celebration of Family: Stories of Parents with Disabilities.” It's a great book! If you haven't read it, I highly encourage you to do so. You can find it on Kindle as well as BARD Mobile. Our next guest is actually chapter 23 in the book. And, if you have been listening to the podcast, you already know her, you already love her. It is the one and only Mrs. Kimberly Parsley! Kimberly is a writer, podcaster, life skills coach and disability advocate. She lives in Bowling Green, Ky., with her husband, Michael, and their two children. Welcome, Kimberly! How are you?

Kimberly Parsley 01:13 I am great, thank you! They know me, they love me. I love that! I love all the people.

Lisa McKinney 01:19 They do love you!

Kimberly Parsley 01:22 [nervous laughter]

Lisa McKinney 01:19 You are chapter 23 in the book…

Kimberly Parsley 01:25 I do, I give Dave much grief about putting me so late in the book.

Lisa McKinney 01:29 I loved it, though! It was great.

Kimberly Parsley 01:32 Oh, thank you! I think this, I’ll take this opportunity to give Dave more grief about putting me so near the end. But, I, I figure, I figure he wanted to, you know, anchor the end with a really cool person. So, he chose me. [laughter]

Lisa McKinney 01:46 Exactly! [laughter] That's what I say. In the book, you talk about VHL. That is what led to your blindness and some of the disabilities. Can you tell us a little bit more and what does that stand for?

Kimberly Parsley 02:04 Sure! VHL. It stands for von Hippel-Lindau. And, you know, diseases always have weird names. And it is a rare genetic disease. It is considered a cancer, even though not all of the tumors that it causes are malignant. But, that is the hallmark of VHL, it's what it does: it causes tumors in the eyes (that was me), the brain (also me), in the spinal cord. It also causes, when I had a tumor in the kidneys, that was malignant, that was cancer. The liver. Basically, everywhere that you have organs, you can pretty much have a VHL tumor. So, we fight them all the time. It's constant scans of everything to check for them. We don't take them out until they start to cause problems. They did with my eyes, obviously, even though I had, when I was young, something like 30 operations (I don't count) to try to save my sight. But, it just, every time you, every time you do surgery, you also cause scar tissue and scar tissue causes problems, especially in something as delicate as a retina. It was a surgery at my spinal cord, C- 2, that led to the loss of my ability to use my left hand. But, again, that was starting to already cause problems that had to be dealt with. The ramifications of not dealing with it outweighed the risks and that is pretty much what we do with VHL: is its risk management with every tumor. So, that was a long explanation. [nervous laughter]

Lisa McKinney 03:37 Goodness! That must be quite a journey. You first lost your vision (you talk about in the book) at age

1. And, later, I think you talk about losing the use of your left hand. So, you’ve basically been on both sides of the coin: having one disability and then having multiple disabilities. What is it like? You know, comparing the two?

Kimberly Parsley 04:05 It is terrible! I, blindness, I think, I say I would go blind 30 times instead of having, losing the use of my hand. But, I think it's less that the use of the hand was so bad; it's more than having the two things together. Because, if I had sight, I could compensate. Not being, I mean, I have no feeling in that hand. So, if I couldn't, I mean, I can grip things, I just can't feel. So, I can't sense, I can't feel anything. Like, I have no idea how tight I'm holding on to something, but I can hold on to it. But, if I could see, then I would be able to see how hard to grip. So, probably that, that neuro pathway would have already regenerated, based on, you know, the sight would compensate for the sensation and, over time, your body just learns. But, I don't have that and it's not uncommon. I know several people who have the disease that I have who have gone through the same thing with either their left hand or their right: it, the multiple disability.

I was always… Like, in the 90s, we did the whole, you know, ‘Oh, I'm just like everyone else,’ disability. I'm just as independent and all those things we did in the 90s. And, now, we don't really talk about disability in that way anymore, because, you know, I am different. I do have, I do have limitations. I can do things, I just need to do them differently. And I don't, I don't think I was ready to talk about that until the multiple disabilities came up and that… I have a lot of compassion for people with, like, cerebral palsy, because they deal with this. They have very much inspired me, because they deal with multiple, multiple issues, multiple limitations, multiple avenues that they have to use to go around their disabilities. And, so, I have gotten a lot of support from that community.

Lisa McKinney 06:09 I have a tremendous amount of respect for, for you and how, you know, you are. You've written several novels; tell us about that. That's incredible! I wish I could write.

Kimberly Parsley 06:24 All I ever wanted to be was a writer. And I used to write, loved to write everything. I've written poetry, I've written essays. I used to write romance novels and I loved doing that, because they are, are, are so fun! You can just go so many places with that! I, under a pen name, because I wrote with my best friend. She and I, she'd write a book and I edit it and then I'd write a book and she’d edit it. And we wrote under the pen name, “Molly Jameson,” and we wrote a series called “The Royal Romances.” And it, I loved doing that! And I also wrote a series of fantasy novels and that was back in, like, that was like, before 2010. Well, it was before 2008, because I did it before I had my son, because, after that, I was too tired to write anything. And, then, I lost the… I wrote an entire novel on an iPhone. I did, I kid you not! It was not fun, but I did it. But, then, I realized it was so not fun that I didn't want to write any more novels. However, I just got back into trying to use a keyboard and what I realized is, if I put a, put the little stickers or dots on some letters, I can still type kind of fast with just one hand! I mean, with practice, I can see me getting back to, I mean, not, not ever writing, you know, as fast as I used to, but at least getting back to enjoying writing.

So, I’m on the, in that place where I'm really excited about a thing. Like, I just bought a new keyboard for that purpose. So, I’m excited, but also so worried, because, like, what if it doesn't work the way I hope and I get, my hopes getting dashed again, you know? And I think we in the disability community, we know what that's like. We know what that's like to hope for a thing and, or you hear a medical advance that this is going to fix your problem and you get psyched up and you're like, here we go! And, no, it doesn't, so… But, you know, you gotta have hope. However, I do love the show, “Ted Lasso,” and there is a line in that, “It's the hope that kills you.” So, yeah, you know, both things can be true, right?

Lisa McKinney 08:33 It's so true. It's interesting that you say that, you’re so right! We, we get our hopes up and, but, then, at the same time, we realize not to get our hopes too high, because things like that happen. With me, it's, it's, you know, ‘I'm gonna go here and do this.’ And, ‘Oh, wait! I need transportation. Maybe not venture out on this ledge right now,’ because, you know, as much as I want it to happen it, logistically, it cannot happen right now and it might have to wait ‘til later. So, you are so right, but I am sure you will pick, pick it up (one hand writing) incredibly well and we will hear more from you as a writer. And it's going to be…

Kimberly Parsley From your lips to God's ears.

Lisa McKinney Now, you are also a life skills coach. Tell us about that.

Kimberly Parsley 09:23 That is something that I started doing after I stopped writing, because I, I really needed something and I just sort of happened into talking to people about multiple disabilities. And, then, from there, it led to talking to people about dealing with chronic illness, because, I mean, yes, I have disabilities, but I also have, you know, when you have to have an MRI every six months, you're pretty much chronic disability or chronic illness at that point. So, I sort of happened into it and realized that I hated to charge people. But, then I realized, you know, people have money, people like to spend money, people… And I have a service, which, given a lot of the doctors these days, my service is just as valuable. I sort of consider it, sometimes, like a medical doula. Like, some of the things that I do coaching wise, are helping people navigate the healthcare system. You know, I mean, if there's some people who are going to the doctor by themselves and they're overwhelmed, I teach/coach them through. ‘Okay, let's talk about what you really want to know. Let's talk about what questions you want to ask the doctor. Let's talk about what's your strategy when you still have questions, but that doctor is already getting up and walking to the door.’ Okay, can, and I help them say, ‘Excuse me. I really need some more support. Can you sit down and while we talk some more about this?’ You know, because that, we view medical professionals as authority figures and, so, we don't like to tell them what to do. But, you know what? You're paying them; they're working for you. And that is something that I like doing and I've sort of happened into making a business out of it. And I enjoy helping people in that way, I enjoy talking with people. Sometimes, it's behavior modification. Like, ‘Let's think about this thing in a different way, so that we can approach it and not be, you know, all the time just feeling bad about our disability.‘ It's, it's, it's an interesting thing. It's, it's, I didn't realize life skills coaching would allow me so much creativity, but it does, because it allows me to be creative in how I help someone else come to a solution to an issue that they're having. So, I enjoy it a lot.

Lisa McKinney 11:31 It's, it's a very necessary thing. I mean, there are times of my life, I wish I could have had someone walk me through the process. Our son, he was born with a congenital heart defect, and just navigating that the first year. And now we found find out he has a hearing impairment! So, just navigating that – to have somebody walk alongside you and to help you through the process, somebody who's been there before – that is invaluable! That is invaluable. So, thank you for doing that.

Kimberly Parsley 12:04 It is, it is something that shouldn't be the way it is. It should, I mean, people get this terrible news and, especially if it's your first baby? Oh my gosh! But, that's already such a hard and terrible time. And then to navigate the healthcare system at the same time it is, as a society, we should be ashamed. We should just be ashamed that, that this happens and, you know… Rise up! We, we can change it, but it, it takes us rising up and working to change it. But, that’s the thing, isn’t it? When you're already sick or you're already dealing with a baby and everything, changing a system is just not top of your priority, right?

Lisa McKinney 12:38 No. And everyone, everyone needs an advocate, you know, be it peer support, life skills, you need somebody to walk through that process with you. And, if you’re in the hospital, you need to take someone, because who knows what's going to happen if you don't. So, thank you for that! [laughter] Have you learned anything about yourself through the process that you might not otherwise would have?

Kimberly Parsley 13:03 I learned, one of the main things that I've learned is how often I, myself, tell myself that I'm not enough. How much I blame myself, instead of a system that doesn't work for me. Because, I see it in other people and, you know, you, it's much easier to see things in yourself when you're seeing them in other people and I see the people I coach blaming themselves. Like you mentioned transportation, you know, for example, I would see someone who had blamed themselves, because they are blind and can't get to their kid’s thing – event or whatever. And I have done, I've been there, I've done that. And I like to, I would like to think no, but those days are behind me, but, they're not. Every single day, like technology. Oh! It thwarts me at every turn, I swear! And, I'm like, ‘Well, if I could see or if I could use an, a real computer, a keyboard or whatever and use two hands, this wouldn't happen.’ But, yet, ask anybody – non-disabled, sighted, whatever; technology is a constant struggle. But, one of the things I learned about myself is I still blame my disability for things that are, you know, ‘I'm not enough! I did it wrong! I'm stupid about this kind of thing!’ And, even though I know better, I know not to do it, I still do it.

Lisa McKinney 14:22 So interestingly, that kind of leads us into the next question. It seems like through the journey, you've kind of recognized that maybe you weren't always having compassion on yourself? And what would you say about self-compassion? And how important is that for us with disabilities? And even those people who don't have disabilities? Talk about self-compassion for a minute.

Kimberly Parsley 14:46 Well, compassion. I mean, that's this. This is not how Americans role, is it? What's the pull yourself up by your bootstraps, which is, the whole bootstrap thing was meant to be a joke. It's like pulling yourself up by your bootstraps, through the straps on the back of your shoes was like how you would do end up face down in the dirt. That's what pulling yourself up by the bootstraps meant – it meant a stupid way to get nowhere. But, somehow, we have turned it around to be like this thing to be the be all end all, you know, pull yourself up by your bootstraps come from nothing and overcome. And it there is no compassion in that for yourself. And it makes, I mean, sure there are people who can, there are exceptions, right? There always are. And I'm not saying that people shouldn't try. But, I am saying have compassion for yourself, where you are in your life. If you want something different, that is okay! And, you know what? Let's work on that. Strive for more, that is fine! But, you cannot live in strive mode all the time – no one can – your brain is just not equipped for that. So, compassion is, is looked down upon. I mean, we're, it's changing, it is changing, I think. But, in our society, self-compassion, people equate that to being lazy, right? ‘You’re just, you could do it, if you just tried harder!’ Well, no amount of trying harder has ever made me see. You know, it just that, that's not how it works. No amount of trying harder, or working at it has ever made a Zoom call connect, if it is absolutely insistent on not connecting. [laughter] so, instead of saying, ‘I didn't do something right,’ just try to have some compassion. And you know, I try it, I fail at it daily, I think we all do, but there's another opportunity for compassion. It’s, ‘Look, life is not how much you do; life is about enjoying where you are, enjoying what you have, trying to live a life NOT have a life.’

Lisa McKinney 16:46 That is beautiful! That is a sound bite right there.

Kimberly Parsley 16:50 Well, thank you.

Lisa McKinley 17:00 I love it! [laughter] It just self-compassion can be hard. And it's one thing that, you know, reconnecting with you. We met, I don't know, 20 something years ago, and then recently reconnected a few years ago. And, and, and when we did, I was very, I did not give myself a lot of compassion. And I would listen to you talk and you would tell me about you know, life skills coaching and, and you just seemed to have more compassion for yourself than maybe what I was having at the time. And, um, I know that was a process. But, I mean, it just, it was invaluable to me, because now I can sit back and I can give myself grace. And it wasn't always like that. I'm very hard on myself and I try to make myself small. And I think as, as members of the disability community, we oftentimes try to make ourselves small for the benefit of others and I am just now starting to see that's not that's not where we need to be.

Kimberly Parsley 17:54 Yeah, that, that is sure. I'm glad you’re, uh, I am glad you're moving here, because you were, you and Patrick and your kids came over to my house and my children got to see another disabled person – another disabled woman – walking around in their house and they were absolutely gob-smacked! And they told me, “Mommy, she doesn't run into things as much as you do!” [laughter]

Lisa McKinney 18:17 Gosh, that's funny!

Kimberly Parsley 18:21 so, you are definitely inspirational on, on my kids, and it was great for them. It's been great for me, obviously, and it's to reconnect with you. And it's gonna be great for our listeners since I strong-armed you into coming on the podcast, because you have a background in broadcast. So, I went, I knew I needed some other help on the podcast you are, you were right there. So, thank you for, well, for letting me bull you into doing this. This is great!

Lisa McKinney 18:50 Well, thank you. I hope I do it justice. It's a little intimidating. But you know what, the first time you do anything, it's always intimidating. And that's what we really want to get across to our listeners, I think, is to do things, even if they're intimidating, because man, our lives can be intimidating! And we just need to get out there and do it afraid or just do it intimidated, you know. You're not going to get anything done by just sitting around and thinking about what, what I can do and then not doing it. You just got to get out there and do it. Is there anything else we haven't, you know, hit on that you'd like our listeners to hear?

Kimberly Parsley 19:27 No, I think I just everyone in the book, everyone in the book, “A Celebration of Family: Stories of Parents With Disabilities (there's a plug for me),” everyone in the book inspired me in some ways. Some of the people I know, some of the people I just know from the book. And I say that anchored the chapters? There are no bad chapters in this book. I mean, everyone is like you said, the word, “inspirational.” I hate that word, but I have learned something from everyone and they have inspired me, but I think it's okay for disability, people with disabilities to say that of other people, I just think we are not a show for the able bodied to feel good about themselves. That's where the whole inspirational thing comes in. But, the book is just so full of people who have, like you said, ‘Do it afraid.’ They did it. And we do it as disabled people, because we don't really have any choice. But, I guess the other side of that is the self-compassion. Give yourself the space and the grace to make mistakes and know that everyone makes mistakes and, then, just try again. You know, ‘Do it afraid, again!’ That's what it's about.

Lisa McKinney 20:34 Thank you, Kimberly. It has been a pleasure speaking with you today. I know our listeners enjoy it. Again, Kimberly is chapter 23 In the book, “A Celebration of Family: Stories of Parents with Disabilities.” And, if you’ve not read it, please do so. It's incredible! It's uplifting! I wish I had something similar to read 20 years ago. If you, if you’re a parent with a child with a disability, this book is for you, because you see that, you know, the world is your child's oyster! Sometimes, we get the diagnosis for our child and we think the world is over for them. You read this book, you see that's not true! If you have a disability yourself, check out the book – it is uplifting, empowering, encouraging! And, if you just want to be a more decent human being, read the book, because, I promise, after reading, “A Celebration of Family…,” you are going to be a better human being. It will change you and you will be better for it! So, thanks again, Kimberly. Thanks again listeners! ‘Til next time…

Kimberly Parsley 21:46 Thanks, Lisa. Bye, everyone!

Thanks to Chris Onken for our theme music. Thanks to Steve Moore for providing our transcription. Comes from the Center for Accessible living in Louisville, Kentucky and you can find links to buy the book A Celebration of Family: Stories of Parents with Disabilities in our show notes. Thanks, everyone!

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