Real stories, told by real people.
Today on GIANTS AMONGST US Noah joins us, and he's got a story to tell. Noah's a young man who was born with a spinal cord disorder known as Spina Bifida. He's paralyzed from the waist down. He talks with us about how it was for him growing up, and the struggles and challenges of trying to connect with other school kids. One big help for him was joining an adaptive sport.
"So for 10 years, I played a sport called sled hockey ..... But I think that period of my life kinda made me realize that, it's not fun being alone ... you don't wanna be alone, you want to be able to share your life with people." - Noah
From some of the stigma's regarding disability, to a lack of accommodations for people disabled. As well as some of Noah's interest, like reading, and building an online community based off the reality shows Big Brother and Survivor. Noah shares not only his struggles, but he also talks about his goals and hopes for the future. Showing heart, and fighting an uphill battle, we have another GIANT AMONGST US.
‘Til
very soon,
PEACE!!
_____
Connect with Noah :
Instagram : @noahmussay
Twitter : @noahmussay
_____
Shout out to Lights Out Entertainment - "Fictional audio theatre to listen to with the lights off.Lights Out Entertainment is a part of End Media."
Check him out on Spotify : https://open.spotify.com/show/3bCfBMqTmabGoYoV2vGm1A?si=821ee0d3f7a14a10
_____
Connect With Giants Amongst Us :
Website : https://giantsamongstus.org/
Show Updates & Extras : buymeacoffee.com/Giantsamongstus
To Share Your Story : giantsamongstus@tutanota.com
YouTube : https://youtube.com/@giantsamongstus?si=LQqRyvae3UozibHy
Reddit : https://www.reddit.com/r/Giants_Amongst_Us/
_____
Background music by : @bnoizemusic
00:00:00
Now, just a little story I got to tell.
00:00:04
This is Giant's Amongst Us.
00:00:10
We're back, it's Thursday, and today we have Noah with us.
00:00:17
And he's got a story to tell.
00:00:19
Noah's a young man who was born with a physical disability known as spinal bifida.
00:00:26
And he talks to us about how it was growing up for him and feeling isolated from his peers at school.
00:00:33
To playing adaptive sports and how that helped him break out of his shell a bit.
00:00:38
And to also form a few meaningful relationships with teammates and share a bond with them.
00:00:44
I'll let you hear the rest from Noah in his own words.
00:00:47
Ladies and gentlemen, this is Noah, in his story.
00:00:51
We've got another one for you.
00:00:53
Thank you for tuning in.
00:00:55
This is Giant's Amongst Us.
00:00:57
And today we are joined by Noah.
00:01:00
Noah, thank you very much for taking time out of your day to spend it with us and have a sit down.
00:01:07
Appreciate it.
00:01:08
How are you doing?
00:01:09
I'm doing well. Thanks.
00:01:10
Let's, from the top, let's hear a little bit about yourself, where you come from and how it was for you growing up.
00:01:17
Yeah, so I'm 27 years old.
00:01:21
I live in South Carolina, but I'm originally from the Chicago land suburbs.
00:01:30
And I am a physically disabled individual.
00:01:34
So I have a spinal cord disorder called spina bifida, which means that basically my spine had a big hole in it from birth.
00:01:50
And so they were able to close the hole once I was born.
00:01:58
But I am paralyzed from the waist down and I use a manual wheelchair to get around.
00:02:09
Spina bifida is a disorder where there are three main types and I have the most severe form of spina bifida, which basically just again relates to the level of paralysis.
00:02:27
So you'll have individuals that depending on where the hole is on their spine and how big it is, they will either be able to walk and just deal with a little bit of back pain.
00:02:44
And then there are people like me that are, like I said, paralyzed from the waist down.
00:02:49
My childhood was very good.
00:02:52
I am the youngest of two children.
00:02:59
So I have an older sister.
00:03:02
And so it was, you know, my parents and then me and my sister growing up.
00:03:10
And yeah, we were and still are a very close family in large part, I think due to the circumstances, you know, when you really have to lean on each other.
00:03:27
I think that can bring people together.
00:03:32
But yeah, that's me in a nutshell.
00:03:36
Now, I mean, you were born with this.
00:03:40
So growing up, like, did you notice immediately things were different?
00:03:46
I know kids sometimes can be unforgiving, but how was it in your early days going to school?
00:03:52
Yeah, so in my early days, it was fine.
00:03:56
I had, you know, I've always been shy, but I was always through, you know, preschool, kindergarten and elementary school.
00:04:08
I was able to make friends fairly easily.
00:04:12
And I mentioned this before that I'm so I was born in 1995.
00:04:20
And the Americans with Disabilities Act was passed in 1990.
00:04:26
And what that did, it did a lot of things.
00:04:30
But one of the big things that it did is it made it so people like me, people that were disabled, were able to go to a regular school.
00:04:42
They didn't have to go to, you know, some special program.
00:04:48
There were, of course, special ed programs in public schools.
00:04:54
But you didn't necessarily get lumped in to a special ed program just on the virtue of being disabled.
00:05:04
So I think for a lot of kids my age that I was one of the first disabled people that they ever met.
00:05:14
Yeah, and so I kind of think they probably saw it as like, oh, cool, like never, never seen someone like this before.
00:05:26
And curious, right?
00:05:28
Yeah, right, curious, curious more than cruel.
00:05:34
I was very fortunate that I didn't really deal with too much bullying.
00:05:42
I didn't deal with any bullying growing up.
00:05:44
And I know other people were not so lucky.
00:05:50
But yeah, so it was a good experience through elementary school.
00:05:55
And then when I got into fifth grade, I had a serious medical issue that made it so that I had to be pulled out of school.
00:06:08
So I went the first semester of fifth grade, and then I had to be pulled out for the rest of the year.
00:06:16
And that was really difficult because fifth grade was a year at a new school with a lot of the kids that I had gone to school with previously, but then a lot of kids from different districts.
00:06:32
And so there were a lot of friendships that were being made and I kind of dipped my toes in the water.
00:06:39
But then once I got pulled out of school, I was spending my days talking with my parents and going to doctors appointments and dealing with in-home care nurses.
00:06:53
And so there was a lot of adult influence that I was getting.
00:06:58
But I wasn't.
00:07:00
Oh, go ahead.
00:07:02
No, I was just going to ask you now.
00:07:04
You had said that when you were pulled out of school in the fifth grade, was that for a whole year?
00:07:11
It was for most of the year.
00:07:13
So like I said, I went from August to December.
00:07:17
So the first semester of school.
00:07:20
And then from basically January until the year finished, I was homeschooled.
00:07:29
And when I came back, I just felt very out of place.
00:07:35
I felt like I couldn't relate to the other kids.
00:07:39
I felt they couldn't relate to me.
00:07:42
And it was very hard for me to make friends.
00:07:47
And I kind of developed this chip on my shoulder because people were not approaching me.
00:07:57
They didn't have that same sense of wonder that they did in elementary school.
00:08:03
So I kind of saw it as, okay, if people don't want to get to know me, then I don't need them.
00:08:11
And that turned into, that's not a healthy way to think.
00:08:22
And it led to me being in a situation where I had friends.
00:08:31
I had some good friends in sixth grade.
00:08:34
I had people that I had known from the previous year that I still knew and very much liked.
00:08:43
But it was very hard for me to make genuine connections and on a Friday night, especially when I went into high school,
00:08:55
there would be kids going to the mall, going to the movies with their friends.
00:09:00
And I'd just be at home with my parents.
00:09:03
And that's not ideally what you want, especially as you're getting to be a teenager.
00:09:11
Right. Was there anything in between those times that you were doing to keep yourself occupied?
00:09:17
Any hobbies or interests that you involved yourself with?
00:09:20
You know, so when I was that age, like the middle school years, YouTube was just blowing up.
00:09:30
So I just spent a lot of time on YouTube.
00:09:35
I spent a lot of time reading and playing video games.
00:09:40
And basically engaging in media.
00:09:45
So I would read books and those would be my friends.
00:09:52
Those would be... I could kind of place myself in those stories and that made me not feel as alone.
00:10:01
You know, I could engage with my favorite YouTubers and, you know, that was a parasocial relationship,
00:10:11
but that was something that made me feel like I wasn't alone.
00:10:15
So I had things. I just I wasn't connecting with people in my world.
00:10:25
And you pretty much at that point, you said when you were noticing that people weren't as interested or maybe forthcoming as before.
00:10:35
Once that changed, was it more of you pretty much close yourself off to any kind of connection or you stretching your hand out and trying to reach people?
00:10:46
Was that pretty much the case?
00:10:48
Yeah. Yeah. I closed myself off pretty, pretty good.
00:10:53
And my parents didn't like that.
00:10:57
My aid at school didn't like that.
00:11:01
And they very much... I think they saw that I was very mature for my age.
00:11:07
And so they kind of saw it as well, you know, maybe the kids just need to catch up to Noah and things will get better as he gets older.
00:11:19
But I think I was, you know, I wasn't an angry kid, but I still feel like I was holding on to some resentment that made it, you know, I had walls up.
00:11:31
And I wasn't keen on, you know, taking chances on people and getting burned.
00:11:41
So I just kind of kept myself.
00:11:45
How were you in school? How were you academic wise?
00:11:48
Were you, did you have any favorite, favorite subjects or how were you doing?
00:11:53
I was really good academically.
00:11:57
My parents instilled on me and my sister from a young age that, you know, education was really important.
00:12:06
And so we always really applied ourselves.
00:12:11
You know, I was good in school, but I did not enjoy school.
00:12:19
You know, I saw it as kind of like a necessary evil.
00:12:22
So, you know, I enjoyed like history and, you know, English class because, you know, I love to read.
00:12:33
I love history and learning about different fascinating nuggets about history.
00:12:40
So those were really my two favorite classes.
00:12:44
Were you pretty much like throughout all of your high school years, were you pretty much to yourself?
00:12:52
Did you find anybody you were able to kind of confide in or hang out with or maybe share some laughs or time with in your age bracket at school?
00:13:04
So, you know, I had people at school want one of the things that changed and kind of got my perspective shifting is that I joined, I joined an adaptive sport.
00:13:20
So for 10 years, I played a sport called sled hockey, which is basically just an adaptive form of ice hockey.
00:13:31
You wear the same, you know, protective equipment.
00:13:35
There's generally the same rules.
00:13:38
The only difference is all of the players sit in these bucket shaped sleds that sit atop ice skates.
00:13:47
And then we had two hockey sticks, six inch hockey sticks with metal picks at the butt end.
00:14:00
And then you do you have your hand on the heel and you kind of graze the ice in a similar motion to if you were skiing.
00:14:09
Oh, OK, wow.
00:14:11
So that was fun.
00:14:12
And yeah, and I, you know, I was able to meet people that were like me that could kind of see where I was coming from.
00:14:23
There's one person on the team that I consistently talked to to the stand were very good friends.
00:14:34
And, you know, it was kind of in making the friendships that I did with that team.
00:14:41
It was kind of the first time that I saw value in it again.
00:14:46
And I saw it as OK, well, these are cool people that.
00:14:52
You should get to know because they understand you.
00:14:56
And, you know, it was the first time that I was like, yeah, this is this is something worth fighting for.
00:15:04
This is something worth pursuing.
00:15:08
And that kind of started the upward trend, you know, to this day, I'm still not like a social butterfly.
00:15:18
I have a couple, couple people that I keep close to me and I do need to branch out more.
00:15:27
But I definitely think that period of my life kind of made me realize that, you know, it's not fun being alone and you don't want to be alone.
00:15:41
You want to be able to share your life with people.
00:15:46
And yeah, so that that kind of got me going in an upward trajectory.
00:15:54
Yeah, that's pretty cool.
00:15:56
Now, were you you were competing in doing this?
00:16:00
Was it part of the school or this was like an outside league that you were involved with?
00:16:04
So it was not with the school.
00:16:06
It was with an organization, a youth sled hockey organization based out of the Northwest suburbs of Chicago.
00:16:20
There's a lot.
00:16:22
Chicago is a great hub for adaptive sports because there are a lot of different organizations, a lot of different sports that you can try.
00:16:32
And but it was still a competitive sport.
00:16:40
We would do out of state tournaments, you know, and competing in different league tournaments.
00:16:51
And then at the end of every hockey season, there's this big, this big, what's called the disabled festival.
00:17:00
And so that is usually about a three day event out of state, usually in places like Boston or Philadelphia, where I think there's like there.
00:17:16
There's at least 80 sled hockey teams and then there's like many, many more other forms of adaptive ice hockey where, you know, teams compete in their bracket in their league.
00:17:37
That's cool.
00:17:38
Yeah.
00:17:39
You still keep in contact with anybody from there?
00:17:41
Yeah, I you said there was one person that you hit it off with.
00:17:44
Yeah, yeah. So there's one individual who was actually a student coach on the team that were still very good friends to this day.
00:17:58
That's cool.
00:17:59
I'm just curious with you.
00:18:02
I know everybody is different and some people just prefer to be alone. There's others that wish they would have more, I guess, camaraderie with people in their age group or of the source.
00:18:17
But now in your case, do you think it's more of the fact that you, you see people not able to understand you or treat you different that kind of keeps you at a distance?
00:18:33
Or is it the fact that because if maybe they're not reaching out to you, so why should I reach out to them?
00:18:39
Like I wonder just how it is for you in that sense.
00:18:43
Yeah, it's really both of those. I am very much hesitant to get to know people because I don't know how they're going to take me because there's still a lot of stigma around disability.
00:19:05
Yeah.
00:19:06
And I think there's a big thing that disabled people face is being infantilized.
00:19:15
So essentially being treated as younger than we are because you see a person in a wheelchair and you think that if there's something physically wrong with them, then there's...
00:19:31
Mentally as well.
00:19:32
Right, exactly.
00:19:34
But cognitively impaired individuals get the same treatment where just because they may not appear as cognitive as other people, they get infantilized when the reality is that there are many cognitively disabled people that know what's going on.
00:20:03
They know what's going on. They're plenty intelligent. They're just in a situation where...
00:20:10
Not able to express it.
00:20:11
Express it. Yeah, they're not able to communicate it.
00:20:14
And in some cases they can express it, but it's not in maybe the way that we're used to with words. It could be facial expressions.
00:20:25
It could be noises, but they're really expressing an emotion or they're telling you how they feel, but it just might not be what we're expecting.
00:20:34
It could be as it being worded out.
00:20:37
Right. Yeah, exactly.
00:20:39
When you're not expecting...
00:20:41
When you're in your group and you all communicate the same way, and then someone comes into that group that doesn't communicate in the same way as you do, you know, it can...
00:20:54
It can be off-putting because you don't have any other experience communicating in any other ways.
00:21:07
And so then you kind of look that person and think of them as a lesser being, which I think has always been my...
00:21:19
Yeah.
00:21:20
It's always been my concern that going into a social situation, that people have these preconceived notions about me.
00:21:29
And if I get too in my head about it, then I can talk to someone, but I'm going to be beating myself up for how I come off to other people.
00:21:47
Yeah. Wow, that's tough. Yeah.
00:21:51
And that's very understandable at the same time.
00:21:53
I mean, that's like a huge wall to get over or to try to in some way deal with it.
00:22:00
However, you are able to deal with it, but yeah, I mean, I could only imagine.
00:22:06
Yeah, for sure.
00:22:07
And so, yeah, so that definitely has made it difficult, especially, you know, out here.
00:22:16
You know, I've tried going to one event for like 20, 30-somethings.
00:22:26
And, you know, it was fine, but I was in my head the whole night and I was also kind of the fact that I don't have the typical...
00:22:40
It goes back to that thing of I don't have the typical life that other people have, so I don't feel like I can really relate to other people on that same level.
00:22:54
And a lot of that, you know, some of that has to do with being disabled, some of that has to do with, you know, I'm not going out to bars on a Friday night because I just don't like that.
00:23:08
Right. Yeah.
00:23:09
Yeah, this event that you had went to, was it at a cafe?
00:23:13
Was it just an outdoors get-together?
00:23:15
Yeah, it was a pub.
00:23:17
It was a pub.
00:23:19
They were doing like a game night type thing.
00:23:22
So, you know, it was a pretty neutral event in terms of, you know, the kinds of things that I'm comfortable with.
00:23:32
So it was fine.
00:23:33
It just felt, again, I felt kind of out of place.
00:23:38
Right.
00:23:39
How did you, now to go back a little bit with the surgery, I'm just, I'm wondering, now that's a major surgery, of course, there's no doubt about it.
00:23:49
Throughout the years, were you always having to go back and forth to the hospital for, I know you said in the fifth grade, you had to be pulled out for medical reasons, but has it been an ongoing thing since then?
00:24:03
Because of your condition?
00:24:05
So it's not necessarily an ongoing thing.
00:24:11
The thing about being disabled or having spina bifida is that it is also very much a neurological disorder.
00:24:21
So, like, you know, the spine connects to the brain, which connects to everything.
00:24:28
And so, if, so, for example, in the fourth grade, I also have a condition called hydrocephalus, which, which is a condition, a condition where the body is not able to filter out spinal fluid, as well as other people are able to.
00:24:55
And so, what has happened on a few occasions, mostly when I was pretty young, I would have to get surgeries because I have a shunt, which is a little valve that kind of drains the excess fluid from the brain, because that's what happens with hydrocephalus is that if it,
00:25:19
it goes to the brain and then it's not able to reroute itself, then you have excess spinal fluid on the brain and, and that's not good.
00:25:31
So I've had situations where, you know, I had the situation where I had to have the shunt put in, I've had to have revisions with the shunt.
00:25:42
And, and I've had other things that pop up every few years and thankfully it's not, it's not a situation where I'm constantly in the hospital but it definitely is something where there can be periods where a lot of that stuff is, is happening and it's very overwhelming
00:26:08
and traumatic and it kind of puts everything into perspective that, you know, that I'm not living the typical life that other people lead.
00:26:20
Especially because you being out of school and I'm not too sure are, are you working? How is that, like how has life been after school for you? Like have you been living on your own or you have some of some assistance or how have things been?
00:26:34
So I currently, I currently live with my parents. The goal is that that's not always the case and that I am able to live independently at some point but I'm not exactly there yet.
00:26:53
There's still things that have to be, that I still have to figure out to kind of see, okay, what does my life look like if I'm living on my own and what is the managing of my medical care look like?
00:27:13
That's a big step. Yeah, that would be a huge step. Yeah.
00:27:18
But I am currently working. I have a friend that is based out of Vancouver who is an event planner and so I'm working with her as her social media manager and I do some other administrative things with her and it's been going good so far.
00:27:41
So remote work.
00:27:43
Yep, yeah.
00:27:44
Oh, that's perfect.
00:27:45
Which, yeah.
00:27:47
And it's been, you know, one of the, I guess, positive things to come out of the last three years is this focus on remote work and people kind of saying more of the value of it.
00:28:08
Because yeah, there are many disabled people that, you know, they could work with accommodation but, you know, maybe an employer doesn't want to give that accommodation.
00:28:26
There are many people that deal with chronic illnesses that could work but maybe they can't work the typical nine to five.
00:28:35
So remote work is a really great option for them and, you know, for me it's no different where right now that's just kind of where I feel comfortable because there are things that I don't have to worry about in that environment.
00:28:53
I don't know if the schedule is set for you but it sounds like if you're a social media manager that you pretty much set on your own schedule.
00:29:01
Yeah, pretty much it's a pretty loose schedule.
00:29:04
That's cool.
00:29:05
How has there been anything recently that you've been doing because you said you know that just being in not really isolation but to yourself in a way isn't really a healthy way to go about things or if it's just the fact that you put in a guard up.
00:29:23
Has there been things that you've been doing or working on to try to get better at that so you can, so it would be a bit easier for you to try to approach people and not be so guarded if you will.
00:29:38
Yeah, I, I am down here there've been some different organizations that I'm looking to get into different disability organizations that do adaptive sports, because I think that's a great way to meet people.
00:30:04
You know, and stick with hockey. Oh sorry for cutting you off but are you gonna stick with hockey or.
00:30:10
I don't think so. But there's like a cycling group that meets a few times each month and so that's something I've always wanted to to give a try something that you know I'm, I'm not the biggest sports fan in the world.
00:30:32
I was never a good athlete when I was playing sled hockey I was I was doing it more for the social aspect.
00:30:42
But I, you know, I'm interested to see what's out there and if there's something that I think is worthwhile I'm going to give it a shot.
00:30:57
That's good that you you have that in your mind and you you have that that passion for because there's some people.
00:31:05
I mean just the fact that you're trying to work, you know, work out ways where you can be a bit more outgoing or social and you'd be able to connect with people on a physical level and I don't know if when you're playing video games if it's online if you're also online gaming because I know there's there's a lot of people that are online
00:31:25
that are online gaming and if they're not connecting with people out in the physical world. I mean nowadays it doesn't even necessarily have to be gaming it has there's Reddit you have a social media you have Instagram there's a lot of different ways where people can connect with each other
00:31:41
if it's not in the flesh. But I mean it's it's it's good to know that you're at least, you know, making a conscious effort to try to get out there and like you said, see what happens.
00:31:51
Yeah, for sure. I'm a huge proponent of online communities.
00:31:58
My friend that I work for is someone that I met through an online gaming community. And you know, I yeah I love going on Reddit and getting into different discussions with people usually about television video games stuff like that.
00:32:22
So it's nice to have these niche communities that that you know, are tailored to my interests so that I'm coming into a community kind of having a commonality with other people so that I'm I feel like I can bring something to the conversation and not get to
00:32:48
the hung up on how people are perceiving me. Yeah, that's a good push right there with with your disability and being in a wheelchair. I mean I can't I can't even imagine I mean it's it's one thing to kind of put yourself in a situation how would be like if I didn't have my legs or I didn't have mobility or if I wasn't able to see
00:33:12
you. But for you like what has been one of the biggest challenges that it might it might seem like a strange question but being confined to a wheelchair or something that you see as I don't you said Chicago is pretty good with accommodating those that are physically
00:33:31
handicapped but is there some some things that you wish would be a bit better when it comes to people that are confined to a wheelchair or you know in your condition. Yeah, so I mean one of the big things is always accessibility so like right now living in South Carolina, there are places that are
00:33:52
not the most accessible, you know, I have never I've never really gone anywhere without my parents but the more that I pay attention when we are out in the world, I'm like, Oh, geez, you know, if I wanted to go into a store, it would be kind of difficult to like do my own shopping because not
00:34:18
every not every place is accessible, you know, there are plenty of places that are like, Oh yeah, we have a ramp, and then it's like this ramp at the back of the building and there's this huge incline to get up it.
00:34:33
And that they're just these very narrow definitions of what accessibility is that makes it very hard to actually get your needs met for as great as the Americans with disabilities act is there's many loopholes that people can find their way around.
00:34:56
And I think just an overall understanding of what it means to be disabled, like, I'm going to push back a little bit on on what you said earlier where please do a lot of people.
00:35:12
And it's like, you know, maybe someone that is in a wheelchair and they'll be like, Oh, they're confined to it they're their wheelchair bound. And it's like, No, my my wheelchair is what's giving me the freedom to be able to to navigate my world for
00:35:29
as inaccessible as the world may be. It would be a lot more inaccessible to me if I didn't have my my wheelchair my mobility aid and yeah, yeah, that's thank you for saying that thank you for saying that because that yeah that is a completely different way to look at it and thank
00:35:50
you for that point of view. Appreciate it. Yeah. And, and I just think that people one of the things is that, and I mentioned this earlier is that disabled people often get othered, they get they get able bodied people kind of looking at them as Oh, were something else were
00:36:14
like, nobody ever wants to to be. And the reality of the situation is that the disability community is one community that any person can enter into at any time, it doesn't matter what your races it doesn't matter what your gender is it
00:36:36
doesn't matter what your sexuality is, like you can become disabled at any time and I think that definitely when we talk about issues relating to accessibility or job discrimination that people always have these excuses of like, Well, that would just cost so much money
00:37:03
you know, we, you can't expect everyone to cater to you. And it just confuses me very often because I'm like, Okay, but you're probably going to end up disabled at some point, it might be when you're like 90, or you could, you know, get in an accident tomorrow and
00:37:28
become disabled. And it's like, you don't want to have that rude awakening of, Oh, the world doesn't really care. And so I just wish there was more that more people realize that and we're making a push for things to be more accessible
00:37:47
because as you get older, or, like I said, if you're put in that situation, quote unquote prematurely, you're going to want the world to still be accessible to you and, you know, you're you're not going to take it when someone says, Oh, well, the world can't just cater to you.
00:38:13
So I don't understand why people even bother saying that to someone else.
00:38:19
Yeah, that's very true. So in South Carolina, there's not a lot of opportunities. You were saying in Chicago, well, it's just, was it as far as the accessibility and just a lot of different that they had organizations and organizations and a lot of things going for people with disabilities that were that you see in
00:38:41
Chicago that you're not seeing in Carolina where you are right now, South Carolina.
00:38:47
Yeah, well, I think anytime that you live near a big city.
00:38:51
Yeah, yeah, you're right. Yeah, those those things are cities are just more built up so there's generally going to be more opportunities.
00:39:03
I think here the the biggest thing has been medical care and the fact that people just kind of move at their their own pace down here, they move very slowly.
00:39:19
You know, you could need something from your doctor and it could take a month to get in to see them or you need a referral or and and also like for me, I need a lot of specialized care and living in an area where, you know, we do we live near a small city.
00:39:48
called Greenville.
00:39:51
But it's still pretty small there. There's not as many specialists in this area. So, looking for, you know, neurologists and urologists and, you know, all of these different specialists has definitely been a challenge because they're
00:40:17
everything is just so spread out. And one of the things with having spina bifida is that it's very hard already to find adult spina bifida doctors. And so it's it's hard to
00:40:35
like I had a whole team in Chicago where it was very easy to coordinate my care and I just don't have that system down here. So navigating it is still something that I'm trying to learn to make sure that I'm getting the care that I need.
00:40:56
How long have you been over there for you said you've moved you've been there for quite a while now haven't you.
00:41:01
Yeah, so we moved here in 2021.
00:41:09
Yeah, yeah, 2021. So we've been here almost almost two years. Yeah, fairly new though you're still trying to make adjustments on. Yeah, yeah. You know, so we've looked around, you know, there are bigger cities that surround us. But you know, of course, they're they're far distances to travel.
00:41:30
So it's a very difficult thing. And I wish there was more, more support there.
00:41:39
Yeah, you talked about that online you had an online gaming community was was that something you're involved with right now or like a is it a community of gamers only or people with disabilities or like how was, how was that community.
00:41:57
Yeah, so there is a reality TV competition program called Big Brother, which is basically like survivor but in a house and online.
00:42:13
Oh, okay, you mean the TV show Big Big Brother.
00:42:16
Correct. Yep.
00:42:17
Okay, yeah, I'm familiar with yeah that okay go ahead.
00:42:20
Yeah, so there are online communities where people host their own like online versions of of the show. And so it's it's very low tech.
00:42:36
All of the games take place on this chat server called discord. And so I've had the opportunity to play a few of these games I got contacted a few years back by a guy on Reddit that was like hey I'm doing one of these games do you want to give it a try and I was like yeah I'd love to and so I did and it was through
00:43:05
that experience that I met a group of I think there are five of us are our core group that you know I'm friends with to this day and we have our own server where we chat about Big Brother during this during the season and then me and my friend that I work for we've gone on to play a bunch of different
00:43:32
games so we've done a survivor one and met people through there so then we've brought them in into our group and it's it's been a cool cool way to to meet people.
00:43:49
Especially in a community like that where I think what people are doing is is really really inventive and really cool.
00:44:03
Yeah that's pretty cool and that would be pretty I know the cast or the group of people that that are involved in that community are probably spread out all over the world I'm not too sure that their locations but that would be pretty neat if if one day you guys were to be able to meet up and
00:44:24
hang out.
00:44:25
Yeah at a cafe or something.
00:44:28
Yeah our core group I think eventually will meet up.
00:44:34
We've all like video chatted and in different things.
00:44:39
So yeah so that's the hope and yeah it's it's just cool to be able to have connections with people that you know might live eight hours away from you know and you're able to just kind of bond with the click of a button.
00:45:00
It's pretty cool.
00:45:01
Yeah.
00:45:02
I think we have the world that your fingertips my that that is a beautiful thing in in in that sense.
00:45:11
Now I know they do offer classes or are you doing anything or is there anything offered to where you're doing like physical therapy is there anything like that involved in the treatment or the facilities you do go to when you when you are going for
00:45:29
a business or anything like that I don't I mean things like mobility or I mean yeah there are you know like rehab clinics with physical therapy programs it's you know something I did that I was younger when I was younger that I don't really do as much now though.
00:45:49
I mean with the accessibility I mean that's that's one thing where there's some people that do like I was just thinking back to when you said you're going into a grocery store and you're shopping now one thing is to be able to have access to get into the stores in the aisles
00:46:03
and also like say if you're just reaching up top for a product that's on a second or third shelf and things like that I know they do have people who can do the shopping for you and things like that but at the same time there's there's other people that would rather just do it themselves you know you
00:46:22
know you want to feel a bit more independent and not have to rely on somebody else to do that for you.
00:46:27
Yeah I am you know yeah there's certainly people that can can help you there and definitely it's difficult because we live in such an individualistic society where people don't want to ask for help and you know they see doing so as a weakness that I think I definitely
00:46:50
internalize that and as I'm starting to come over to the realization that there there is a disability advocate that actually just passed away and she was very pivotal in getting the Americans with disabilities act passed and her name was Judy
00:47:16
and she has a quote and I can only paraphrase it but she basically said that you know we need to stop looking at independence as doing things by ourselves it's more about knowing what needs to be done and having the wherewithal to know how we can get it done
00:47:45
and that a lot of times that includes asking for help you know it's you're still actively being independent even if you're you know asking someone to get something off the shelf for you or or you're you know getting in home nursing care because you're actively making those decisions
00:48:09
and you're you're knowing what it is that you need in order to be able to live the life that you want to live and you're giving yourself that agency it might not be your ideal situation but you still have control and so that's something that I am starting to come around to which
00:48:36
you know I think is great because you don't want to have this narrow view of what your life is going to look like nobody wants to have an arrow view of what their life is going to look like because things change and you have to be able to kind of accept that and yeah you have to be able to accept that
00:49:00
yeah I guess that would kind of be like under the under the umbrella of do what you can and if you do need help don't be too ashamed or prideful to ask for it yeah exactly and that yeah that's also cool that they do have these they I know over here while I'm in Germany and
00:49:20
this is just having to do with the elderly people and the grandmothers and grandfathers who who really can't get in the car and drive in them drive anymore or they're just not as mobile as they once more but they have services well even now with like you have a delivery services where they drop off your groceries and stuff if you're not able to make it to the grocery store for whatever reason or to do your shopping so I think that's awesome that those services are out there and
00:49:46
yeah and provided yeah for sure so so you you seem to be moving in a better direction it sounds like with the the hopes of you hooking up with this sporting organization and to get back in the swing of things and see how that goes and now when did you say that that is going to start if it hasn't already or when when you look forward to involving yourself with that
00:50:14
they they have stuff throughout the throughout the summer yeah so it's it's something that I've started to look into a little bit and need to do a little bit more cool and that's going to be in your area then you're going to have out there in South Carolina yep that's cool and for you also like using that as a as a catalyst to kind of I guess connect with people once again because you did mention
00:50:42
before when you were when you were younger in your younger days your school days that the guard was up and how do you feel it is now I know you said that you made improvement but how do you feel that it is now with you and just being more open to being open to other people and developing a relationship or hitting off a connection.
00:51:04
Yeah I mean that the guards still there you know it takes it takes a lot of work to get over your ego and you're just your personal stuff but you know it's something that that I'm looking more toward the bigger picture of as I said before wanting to have people in my life that I can share my life with because I mean nobody.
00:51:33
Nobody wants to be alone so you know it's it's not pill battle it takes a lot of work but it's something that I'm trying to improve on day by day.
00:51:47
Yeah and that's where it starts and I really see that if you put yourself out there the way that the way that you are the way that you've you've worked at doing in the way that you plan on doing I'm sure me some real cool and like minded people that you can enjoy a real healthy and fruitful relationship with and things that you have in common and a lot of other things I know you were
00:52:11
before that your life isn't the ordinary life and so there could be not really hang ups but there could be a lot of you feel like you're not on the same page with somebody but then also on the other hand there could be a lot of similar similarities excuse me that you do have with people like say for instance.
00:52:30
If you were in a nature and somebody was in a nature like you say video games and there's another person in the video games or reading or certain subjects and things like that that you can expand on and build off that's good to hear and I'm really happy that you are you are making the effort and that's something that people can can take away from this was was there.
00:52:51
You are involved with the online community but is there like say if anybody listening to this with would like to reach out to you and say hi or something that you said or something that you've been through has has kind of hit them in a in a special way and they'd like to reach out to you connect is there any way or any how that they can get in contact with you.
00:53:15
Yeah for sure so I am at Noah must say that's M U S S A Y on Twitter and I think on Instagram as well.
00:53:30
Okay, I'm more active on Twitter though if anyone is trying to get ahold of me and yeah that's basically it is as far as social media is concerned but that's where he can find me.
00:53:48
Okay, cool yeah I'll leave that leave that in the description notes so anybody coming across this listening to it and they want to connect with you they have that know is there is there anything else that you'd like to leave the listeners with before we wrap this thing up again I thank you very much for your time and I'm sharing your story with us today.
00:54:10
I think I think that it's just important that you you give people a chance and and you know don't let you can't let your own hang up stop you from getting to know people because yeah sometimes you're gonna get burned but other times you're going to find really cool people and you'll find your
00:54:38
community and you know you you don't want to waste time finding that community.
00:54:46
Yeah, and ultimately I think even like you're throwing your shots out there you're you're you're you're mixing it up. Even if like you said you're getting burned one after the other but when you do come across some genuine people or something that really touches you in a in a unique and special way it that overrides everything else.
00:55:10
So it's almost like well worth it you know it's it's a sweet victory at the very end of it. Yeah, absolutely. Absolutely.
00:55:18
I really like to hear your perspective on this and I and I was glad that I was able to see things a little a little differently especially when you brought to my attention a few things.
00:55:30
And then back to what I had said and the confined to a wheelchair but the way you put it I know this is the freedom this is how I'm able to move around and experience life in it in the get in the wind so to speak and that's what I do appreciate about hearing people and listening to their stories.
00:55:46
We have different backgrounds we have different struggles and we don't all start off at the same place so to hear your story. It gave me a different look on things and that's what I think these type of stories do they give it can give somebody a fresh perspective on something that they may have looked at differently before this was brought to light or something
00:56:07
that was put in front of them so I'm sure I'm not the only one that feels that way. I'd like to leave off on on a bit of an upstroke. So not to say that this was down by any means I just like to get if you can know it three things today that you are thankful for before we end this chat.
00:56:31
Yeah, I'm you know I'm thankful for my friends, my family. I am and I'm thankful for creative people that are creating really cool things that also are helping to build community.
00:56:50
Awesome. All right, Noah. Thank you very much for your time. You have yourself a great day and all the best with you and your endeavors.
00:56:58
Thank you. Thanks for having me on.
00:57:28
I'm sure we all have in common is that we want to be loved. We want to be respected. He's no different. It takes courage to step out of your comfort zone. But Noah's done just that.
00:57:48
He's been working out areas in his life where he feels there's room for improvement, which is commendable, like lowering his garden, allowing himself to be open to new people. That right there.
00:58:01
That could be a scary thing in itself because we can get hurt. But that also gives opportunity for developing rich and meaningful relationships. And that's a beautiful payout.
00:58:14
Definitely and positively left with a better understanding of what it's like to be disabled. And I also respect Noah for bringing to my attention what was before a miss.
00:58:27
It's not that he's bound to a wheelchair or even confined to it. That manual wheelchair that he uses, like he said, allows him to experience the world freely.
00:58:37
It gives him the freedom and the mobility to enjoy what's around him. I was ignorant to that truth and I was looking at it from a different point of view before he brought that to my attention.
00:58:48
Noah, you are a giant amongst us and I wish you all the best with your upcoming plays and moves like the adaptive sports that you plan to get back into with your work as a social media manager. And even with you hitting it off and meeting some really cool people along the way.
00:59:10
You can all get in touch with Noah on both Instagram and Twitter. I'll leave his handle and social media information in the show notes.
00:59:21
Send him a big hello and let him know you enjoy his words and appreciated his story. I'm sure he'd be happy to hear from you.
00:59:29
I'd like to also send out a couple of shout outs. Shout out to Melissa listening from out in SC, Southern California. Appreciate all the support and thank you also for sharing the show. That means a lot.
00:59:46
Organic growth is dynamic growth. Appreciate you. And shout out to Lights Out Entertainment. You can find him on Spotify. He's got a real cool show going on over there. He's doing the voice acting. He's doing the producing.
01:00:02
He's writing out the dialogue scripts. I mean he's doing it all and if you're into something creative, something fun and something to listen to with the lights off, check him out.
01:00:14
Matter of fact, here's a little taste.
01:00:45
We do have more shows on the way so far. We'll keep on sticking to the script and release a new episode every other Thursday.
01:00:56
Thanks to everybody who's tuned in. You can always follow the show to stay plugged in at all times.
01:01:04
And a special thank you to all of you who have shared your piece thus far. You are the Giants amongst us. And if you're enjoying the show, share it. Leave a rating. Drop a comment.
01:01:18
I'd like to hear from you and to hear what part of the world you're listening from. It could be from the Golden Gate to the Frozen State. Oh yeah, the Instagram is there. You can find us at Giants amongst us.
01:01:31
Now, if you'd like to be a part of the show and share your story or even a story of someone in your life that has impacted you in a positive way, you could always reach out to me via email. I'd be happy to connect. Until next time and very soon. Peace.
01:02:01
To know I'm on the right road.