Don't Dis My Ability

Raylene Lewis: [00:00:00] Hi there, and thank you for joining us on AVM Alliance, a pediatric stroke podcast for families and friends whose lives have been affected by traumatic brain injury, brain vessel disease, or stroke. The purpose of this podcast is to focus on the kid's side of brain injury with honest talk, news, information and discussion for our community. Being a parent of a medically complex child is an extremely difficult path to suddenly find yourself on. I'm Raven Lewis and my son Kyler suffered a hemorrhagic stroke at age 15. Thank you for joining us. In brain news, there are two published studies I'd like to mention today, and I'll include the link to both studies in the podcast description below.

The first study was published by the Stanford University School of Medicine in California. Which found that stem cells can be both safe and effective as a treatment option. For stroke stem cells have a [00:01:00] regenerative and anti-inflammatory effect, which means they naturally seek out damaged tissue in the body.

The stem cells used in the study were derived from donor bone marrow, but there are current stem cell treatment options where the patients are able to use their own stem cells that are grown. These cells can be given to the patient via IV or injected locally to target a specific site in the body depending on the patient's needs.

A scale was used to measure performance in just daily living activities, and it increased from 11.4%, which was considered the baseline pretreatment to 35. 0.5% at 12 months post-treatment. This trial made tremendous strides in demonstrating that stem cells can effectively treat stroke symptoms years after the patient's stroke occurred.

It can also be effective at any age. The second study I wanted to mention was also conducted by Stanford [00:02:00] University. They have developed a device that delivers and electronically stimulates stem cells to promote stroke healing. Although hundreds of studies and animals have demonstrated that stem cell transplanted into the brain can improve stroke outcomes, the challenge has been finding the best way to deliver and use these cells.

Another challenge has been how to use electricity to stimulate the cells in the. Stanford medical researchers have developed a tool that solves both problems. It can deliver and electronically stimulate transplanted stem cells, and at the same time, stimulate injured brain tissue. Now, this second study was a rodent study, not a human one, but the results are very encouraging for the treatment of stroke in the future with the help of the stem.

And electronic device. The recovery rate in the study was 80 to 90%. This is an important discovery because it might [00:03:00] provide a new way to optimize stem cell treatment. Using electronically stimulated stem cells may create a better overall outcome. The takeaway from both studies is that more evidence is coming forward, that stem cells may be a great key to the healing of a stroke damaged.

Today my guest speaker is Jonathan Slifka, who was born with Spin A bifida spin. A bifida can happen anywhere along the spine if the neuro tube does not close all the way. For Jonathan, it meant growing up without the use of his legs below the knee. But this didn't stop him or his parents from taking on any challenge he wanted in life.

So, John, can you tell me your story? 

Jonathan Slifka: Not in 10 minutes but . not, I'll do the best that I can. 

Raylene Lewis: You can give me the short version because a lot of people who listen to this show have issues with brain, like, you know strokes and traumatic brain injury. [00:04:00] Mm-hmm. , and you're just coming kind of to our party from a completely different direction.

Jonathan Slifka: Sure. I am. So I was born with spina bifida. From a cognitive standpoint, I'm very fortunate. I, I did have to have a shunt put in when I was. Because part of my disability does involve hydrocephalus, which is water on the brain, and they noticed that almost immediately. And so I had a shunt put in. I think I was only six days old when I had my, my shunt put in.

And then I, when I was around eight years old the shunt failed. Oh. And so I had to have it replaced at that time. And I'm 45 years old now, and I've knocked on wood. I've not had had to have it replaced since. , which is. Again, I consider myself very, very fortunate in that regard because I know so many people with my disability that have had more shunt replacements and revisions than than I care to even imagine, or, or or go through, 

Raylene Lewis: Do you have to have adjustments done? I know sometimes like whenever we have to take our [00:05:00] kids for this sort of thing, they'll look and they'll say, okay, we need to, we need to turn it this way or tweak it that way. Because you've kind of been through puberty and adult life and kid life and everything.

I mean, how's the maintenance been on that? 

Jonathan Slifka: It's zero. The, the shunt that I have put in, it's interesting you bring that up because my, my father has had some they thought issues that were related to Parkinson's that turned out to be related more to hydrocephalus as it turns out. And so last year, in 2022, on my birthday, actually, he had a shunt.

and he, yes. And he's had to have adjustments made to his, I think there's different kinds of shunts as I understand it. Mm-hmm. and some shunts need adjustments and others don't. And, and I think, and I could be wrong on this, but I think one of the differences is, is whether or not you are essentially life dependent on your son.

And so I'm life dependent on mine. people with his symptoms or, [00:06:00] or of that symptoms of that nature are not, so if you removed his shunt, his function, his functionality would go, would, would diminish. But it wouldn't, it wouldn't it wouldn't be fatal. Mm-hmm. , and in my case, if you did the, the pressure would, would, would build up, it would build up such that it would be, it would be fatal to me.

So I think that's my very very. , low level understanding of, of the difference between, between my shunt and, and say my father's. And I think his, the adjustments, if I'm not mistaken, are made with magnets. Yes. Mm-hmm. and, and mine, mine doesn't, doesn't work that way. I've, I've, I don't really think I've seen a neurologist since my recovery from that surgery when I was eight, because there wasn't a need.

Raylene Lewis: Wow. That's awesome. Congratulations 

Jonathan Slifka: again. Well, thank you again. When, when it comes to my disability, I consider myself about as fortunate as you could be. 

Raylene Lewis: Well, tell me a little bit about it, because I'll tell you that all of a [00:07:00] sudden from having a kid that doesn't have deficits, to having somebody that has deficits, it's really scary.

And we look back and we're like, can, can my kid function? How is this gonna go? I would love your, your insight and your e. . 

Jonathan Slifka: So I would open by saying, you know, a, as somebody with a disability, there is a completely different mentality to having been born with it than to having, having the inability and then losing it.

There's a men different mentality and a completely different psychology that goes with that, and I don't pretend to know what it's like for someone to have had an ability and then lose it. I was born this way. What I can tell you is that having been the first in, in my, my, my, my family was a, was a, a trailblazing family.

And, and and, and I have them to thank for so much my mother, my, both my parents decided very early on that if that, if there were no cognitive issues for me, that they were gonna [00:08:00] do everything to make sure that my life was quote unquote normal. And they were gonna fight for you know, accessibility in every possible way.

My. Started a wheelchair sports camp here in Connecticut, the first of its kind in the northeast, because there wasn't anything like that up here. And those were the things that they, that they wanted to do. Those were the opportunities that they wanted to afford me, you know, especially now with the internet and social media, the vast number of resources.

that are out there from other families to, to people with the disabilities, to, you know, nonprofit organizations, well known and not well known. They're out there. We just have to, we have to find them. And then once we seek their, their help and their services, we then in turn need to promote them. , it's the only way we can make ourselves feel not alone.

And others feel as if they're not alone. The internet and social media are two of the, are the biggest friends that I, and allies that we [00:09:00] have. I, I think when it comes to, to finding resources and making sure that, you know, we don't, we don't feel alone in, in going through our lives with with our disabilities and our families.

Raylene Lewis: Yeah, I totally agree. I think that that's one really good thing about right now is that because we have social media, we can connect to other people who are going through the same sort of things that we're going through, not only for, you know, this heart-to-heart comradery, which I think is really important, but also for, you know, education and assistance, right?

Like, I have this problem, can you help me out? You know, I, what have you guys done in this situation? . 

Jonathan Slifka: I completely agree. And, and, and you know, I, if I could just make two quick points. When my mother started that wheelchair camp, the wheelchair sports camp, there was this sort of organic comradery that came, that came about amongst the parents because they would come and they'd drop off their kids.

They'd pick them up. Sometimes they would spend the day. and they would just talk to each other and it was organic and natural and, you know, what is your kid [00:10:00] going through? And, and, and, and you know, who are you talking to? What are your resources? What are you, what are you utilizing that's, that's helping them get through X, y, Z issues.

You know, and, and I, I, you know, the other thing that I would say is for a few years now, and I, and I think it was happening even before covid, people's Mental Health became a major headline in the news because more people in, in of prominence, people in in politics, people in in Hollywood, celebrities and athletes were speaking out about their own mental health.

And I think if we can extend that further within the disability community and get those things, Out in the forefront, out in the news, out in the media and, and out in the general public. It's gonna be so much easier for us to talk about it collectively as a society and address issues, address concerns, solve problems, and just make everybody feel better about those things.

And I, I'd love to see that moving forward. And I [00:11:00] use a backdrop that it recently came out that the disability community is now the largest commu largest minority in the. , really 50 plus million Americans rayen have a disability, and that's the reporting number. You and I both know, there's so many more people that won't report that they have a disability either out of fear or maybe they don't even know they have one.

So Yep. If you're not gonna listen to our voices now, when are you going to. 

Raylene Lewis: So, so tell me, what do you think has, has helped you? You've had parental support, which has been huge for you. Yep. What do you think about the way that the community is in general? And what I mean by that is, you know, you just said we are the, you know, largest minority group around are you seeing positive changes for assistance within the community, or you think we just need to have louder voices and, and what things would you like to see change?

Jonathan Slifka: Oof. , man, that's a loaded question. I think we are seeing positive [00:12:00] change across the board and the way that I envision them, I envision them as a roadmap. The more resources you give to people with disability at their, the earliest possible age, or at the earliest possible onset of their disability, the stronger they will be going forward.

You know, if, if you're born with it or you have a disability as a. , it's gotta start at the education piece again. If you employ more of the people in the disability community, do you know how much you can drive down the employment number in this country? That's true. And, and the biggest thing you gotta do is bring them to the table.

If they can't speak for themselves, bring their families to the table. Don't pretend for one moment that issues for the disability community can be solved without their voices. . Yeah, that's the big thing. Too much happens to solve it. And, and I'm not even just talking about politically, I'm just, [00:13:00] too many issues are attempted to be solved in echo chambers for the disability community and with, without them being there.

And then a lot has to be done after the fact to address the fact that they weren't at the table in the first place. 

Raylene Lewis: Your wheelchair, right? A wheelchair person. What, is there a correct terminology that I should. , the 

Jonathan Slifka: one that I've been hearing most recently is, is wheelchair user or person in a wheelchair.

It's I'm a big proponent of, you know, person first language. So I don't, I don't refer to them as a disabled person. It's a person with a disability. You know, it's, it's person first language. I've heard. Wheelchair user, wheelchair bound is not appropriate. Okay. How. Folks that are in wheelchairs, they're not bound to them.

It's a very it's a very derogatory term. So I wheelchair user, you know, one that uses a wheelchair. I, I think that's, sure.

Raylene Lewis: Ok. It makes sense. Well, I, I have to say this is, I guess somewhat embarrassing on my part and somewhat funny is my son has an awareness walk. That we do. Mm-hmm. and [00:14:00] somebody said, but Raylene, a lot of the people that have this condition are in wheelchairs.

And I'm like, oh my gosh, I didn't even think of it. So I'm like, we're gonna call it a walk and roll , because you know, oops. . 

Jonathan Slifka: I think that's fine. That's more inclusive. The more inclusive I think you can, you can you can incorporate your language, the better off you're gonna be. 

Raylene Lewis: So what are, so tell me, tell me some things that you focus on so that as parents you can give us some advice on how to direct our kids.

Obviously getting involved in, in sports and things that you might say, you know, soccer, right? Like there. Soccer for wheelchair. This might be not something that would first come to mind, but I have seen some really neat kids wheelchair soccer classes around, you know? Right. So if you could give us some advice like that, I would certainly appreciate it.

Jonathan Slifka: Get, yeah. You know, find local community or organizations and activities to get your, your family and your kids involved. And it's important to do it. You know, I look at it as a three, as a 300, 360 degree [00:15:00] view. It's important to get your kids involved in. . Right? And it's important for you as the parents of those kids to get involved in things, whether it's you know, whether it's organizations around the disability, whether it's support groups if you need them.

You know, find them at the local level if you have difficulty, and you can start sometimes with. with rehab hospitals. Rehab hospitals often have a lot of activities for for persons with disabilities. Sometimes it's kids, sometimes it's adults. Sometimes it's a mix finding, and also I think it's important to find.

Especially for the kids, find other persons with disabilities that they can look up to find role models for them. And you can do, I love that we can do that as adults too, right? We always can find somebody that we look up to and we wanna emulate and, and say, gee, you know, they've, they've, they seem to have a lot figured out.

I, I wanna, I wanna be more like that person. But if you can do that for your kids especially [00:16:00] for. For the disability, the disability community that will go such a long way for their, their self-esteem, their, their dreams, their goals, their aspirations and, and, and, and getting them out there in the world and, and hopefully in a road to be, to be successful.

And never, ever, ever be afraid to ask for help. Never ever be afraid to say that you need help because it's, it's out. , but sometimes we don't ask for it or we don't ask for it in the right way, or we're not asking the right people. You know, I, I would not be here if not for my parents or my brother in the way that they, that, that that I'm here because they were so, so fierce and so passionate in terms of their fight.

And, and in, in terms of, again, and I use air quotes for this because everyone has their own term, normalizing my life and finding ways to. To make things right that weren't quite right and oftentimes very wrong. Whether it was an accessibility issue or something else. I always steal a [00:17:00] line from, from Robert Kennedy and instead of asking why ask, why not, why can't things be different for you?

Why can't you get the things in life that you want? 

Raylene Lewis: I love it. I think you're, you're absolutely right. We only get one life. It's, we've got to make it the very best, not just for us but for our kids and our friends. .

Jonathan Slifka: That's absolutely right. And if you're, and if there's things that you're not finding out if, if you, and, and I will preface this by saying, if you have the time, the resources and the, the energy and the drive and the passion, create it yourself or work with or work with other families that are going through what you're going through and, and build a team to create.

To create something that you feel you need.

Raylene Lewis: Well, thank you so much for joining us today. I sincerely appreciate your time. It was great to visit with you. 

Jonathan Slifka: My pleasure, Raylene. Thank you so much. 

Raylene Lewis: Jay titled to chapter six of our focus book Suffer Strong as Redefining Failure, and he points out how great people are at projecting an image to the public that is often [00:18:00] completely different from how they actually.

He writes about how many people are scared that if their failures at this or that were to become common knowledge, it would result in them being rejected, abandoned, and alone. Quote, it is not our rock bottom failures that spur lasting change. He says, rather, it is finding love with us at the rock bottom.

That changes everything. If suffering isn't the end of our story, then failure certainly should not be either. Jay discusses how fear of failure is linked to the expectations of what we thought our reality actually should be. It is in that space between what is and what we thought would be that our deepest discontent.

Stress, pain and suffering. Lie. Jay makes the argument that just because reality no longer looks like what we thought it would, does not mean that we have failed, but that we need to dream new dreams. Instead. He does not believe we should [00:19:00] go throughout life expecting nothing because that can result in us getting nothing in return, but that instead, our expectations should look more like drawings on a wet beach in sand.

Rather than drawings with a permanent marker on a piece of paper. Personally, I'm a Christian, but with my son's diagnosis and struggle, I have definitely felt hurt by God. I wanted to base my expectations on something I could control, and when things did not go the way I wanted, I blamed God and was angry with him.

Learning your dreams can change is a very hard. Quote, there is nothing wrong with having dreams, but we need to understand that we are not failures when our dreams don't materialize exactly the way we had in mind. We must look at our failures in a way that can be transformed into hope for the future.

We can have hope for ourselves and hope for each other. Jay teaches we all have worth, not because of our [00:20:00] achievements, but because we are worth everything to God. Today's quote is by mere Ezra, all accomplishment is the result of ignoring the past. Don't care about the bad things someone said to you or did to you. It's not important at all. Create what you want. 

I always like to end our time together with a motivational song recommendation. I don't play the song because of copyright laws, but there have been many times on this journey when a song really spoke out to me and help me with my day. Today I'm recommending you check out Stronger by Kelly Clarkson from her 2011 album.

Stronger. What Doesn't Kill You makes you stronger. Stand a little taller. You got this. And as always, if you have questions, have a topic you would like to hear about or a great song or motivational quote, don't be shy. Share it in the comments and let us know. And if you liked what you heard today, [00:21:00] please go online and rate this podcast.

Remember, you're never walking this journey alone. Take care of y'all.