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Goodpain Episode No. 011, Season 01 Bonus No. 1: Aaron's Story of Living with Chronic Conditions
97 Plays2 months ago
Follow Aaron on:
Instagram: @chronicallymeandjesus
And please consider supporting Aaron and his family through Venmo: @Aaron-Milgrim
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Transcript
Introduction to Good Pain Podcast
00:00:01
Speaker
I'm Jeremy. And I'm Tyler. Welcome to Good Pain, where we talk about life's true intensities without pretending they're easy to solve. What if the things we're told to fix, optimize, or get over are actually where the real wisdom lives?
00:00:14
Speaker
Each week we gather for the kind of honest conversations you desire to be a part of more often about the relentless demands, the unexpected grief, the quiet victories, and everything in between. Because maybe, just maybe, the answer isn't to eliminate the hard stuff, it's to find the good in it. Welcome to the conversation.
Jeremy's Unexpected Community
00:01:00
Speaker
This episode is a bonus episode in our season one, and it comes out of a conversation that I had with a friend that I met online. It first came by being hooked in by an ad for a game that I decided to download against my better judgment, and then found that this game that I had fully intended to be used for mindless fun ended ended up being so much bigger than that. I met through this game a number of players,
00:01:27
Speaker
And in this space, I have been more surprised by the sudden community that has come up around this space. Aaron, who i am talking to today, is one of those players.
00:01:39
Speaker
I get to listen in this episode as Aaron shares his story. It's going to cover a number of topics. Aaron and i understand each other. We understand caregiving. We understand uncertainty and tragedy, crisis, trauma.
00:01:54
Speaker
And we're not the only ones because the themes that Aaron and I discuss throughout this are applicable. And as we get towards the end of the episode, Aaron's going to share his perspective on how easy it is from the outside to create separation from from Aaron and almost for people to say, oh at least I don't have to carry what he carries.
Content Warning: Sensitive Topics
00:02:17
Speaker
But in his kindness and his graciousness, Aaron points out how much what he wrestles with, what he's found, the wisdom he's been taught over his 42 years brings him closer to all of us The last piece we do need to discuss as well is that this episode deals with a number of sensitive topics, and this serves as a content warning.
00:02:43
Speaker
I will add another content warning in the midst of this. the episode itself, particularly when we get to ah period of discussion around despair, depression, and what leads to some suicidal ideation, as well as an attempt.
00:03:00
Speaker
If you are sensitive to these topics, please make sure you take care of yourself before proceeding to listen to this episode. Finally, throughout this episode, we do mention the fact that Aaron shares the full story, all of the details on his own platforms. And we will add those into the show notes as well as into the show description.
00:03:23
Speaker
Check him out on Instagram, on Facebook, and to follow in support.
00:03:32
Speaker
I am a preacher's kid. We kind of sort of get labeled as, oh, those preacher's kids tend to have a wild streak in us. Yeah, I have my years like that. But no, I would say definitely if it wasn't for like my faith and that compass guiding me at this point, I don't know that, especially this last year, i don't know that I would have made
Aaron's Health Journey Begins
00:03:52
Speaker
it. I definitely don't think that I would have the outlook that I do.
00:03:57
Speaker
Not every day. There are some days, I mean, I am so human. And there are days when I've got just as many questions as non believers and believers alike like, okay, God, what in the world are you doing to me here, man?
00:04:10
Speaker
Like, when's my plate enough? when When is enough enough? My dad wasn't a preacher my whole life. He felt like God wanted him to do ministry. And we uprooted and moved from the Northern Virginia area to right outside Chattanooga, Tennessee.
00:04:26
Speaker
And about a year later was when I first got sick. I think it's easy for a lot of people who are looking out from the outside in to define us by the things that are observable. Let's get that out of the way first. What's the diagnosis? What's the list?
00:04:39
Speaker
When I was 12, out of the blue, I was literally goofing off. We had had a freak ice storm. I was playing ice hockey, tennis shoes, no skates or anything, just being goofy with my brothers.
00:04:50
Speaker
Out of nowhere, it was just like somebody just started stabbing me. I collapsed onto the ice and it was just immediate, the worst pain I'd ever felt like in my gut area. I was like, what is going on? And my brothers helped me up and we had some friends we were playing with and they were all like, dude, you alright? I'm like, yeah, yeah, I'm fine. I'm fine. Yeah, I must have got hit or something.
00:05:12
Speaker
About 10 minutes later, it happened again, except this time was even worse. Over the course of that night, started having really awful vomiting. think it was probably around the middle of the night my mom realized it wasn't just a normal like stomach bug.
00:05:28
Speaker
But I still don't quite think she realized the level of the emergency that it actually was until... Late late into the morning hours. I'm right before my dad got off of work He worked third shift in a carpet mill while he was in Bible college So as soon as my dad got home, they rushed me to the hospital That was the day that my life changed forever If you and I were to go back and talk to 12 year old Aaron at that point what what's going through his head scared ah
00:06:02
Speaker
I think for the first, I think that initial time, um it was more shock than anything. Things started happening so fast when we got to the hospital. I mean, like it was just bam, bam, bam, bam. bam You know, one thing after another, you know, um drainage tube down my nose and x-rays and all these things. And once they knew that it was a actual true small bowel obstruction, that was when things started to really, really move fast because they were very, very afraid of it.
00:06:40
Speaker
rupturing and killing me. It was not very long that I was even in the ER before they had me in an o doing emergency surgery.
00:06:52
Speaker
I would say shock and then mostly it's just kind of a blur that first 24 to 72 hours or so. We just thought that's all it was going to be and that would be that and they'd fix it. And they told us going into the surgery, you know, this isn't abnormal. Like it happens.
00:07:11
Speaker
We'll do the surgery. Seven, 10 days, you'll go home and life will go back to normal. And it was anything but that. As things started to clear and you started to see that expectation of a return normal started to get further in the distance and something else was coming at you, what was that experience like? Very frustrating. The surgeon that had done my initial surgery was staunchly stubborn.
00:07:40
Speaker
that there was nothing else going on. he had done everything right. First stay went from being seven to 10 days. It turned into three weeks. And what they had found was that not only did I have a true small bowel obstruction, but I was malrotated and my intestines were free-floating.
00:08:01
Speaker
which again is not a terribly rare thing. i mean, it's not normal, but it's not nearly as rare as what we ended up learning a couple of years down the road. Once we got to actually like an official diagnosis, it took almost two years, multiple hospitals, things like that, before they were finally able to nail down with some certainty what things were because of how rare what i have is. i had basically been a walking time bomb with the free-floating everything in there. it had just been a matter of time.
00:08:37
Speaker
The doctor was pretty adamant that like, you know things would get better. And then one week turned into two weeks and two weeks turned into three weeks. And I still couldn't tolerate anything outside of water.
00:08:49
Speaker
Every time there would be even like a glimmer of hope, he would pounce on it and build it up. And then there would just be this very dramatic letdown.
00:09:00
Speaker
And so about three weeks after the first surgery, they sent me home. I was holding down fluids. Okay. I still had the tube in my nose for nutrition. I was not even home 24 hours.
00:09:14
Speaker
Rushed right back to the hospital, right back to the OR to make sure they hadn't missed anything. It just progressed from there. Week after week got worse and worse.
00:09:25
Speaker
At this point, you don't have line of sight on where does this end? Where does this go? And at some point, you guys have to decide this expert in his field that we've been relying on.
00:09:36
Speaker
Trust has slowly been eroding. Now we've got to take things into our own hands. And you start on this journey you mentioned that gets you two years down the line to a diagnosis. Take me to to that diagnosis. What was getting that diagnosis like
Finding the Right Medical Support
00:09:52
Speaker
for you?
00:09:52
Speaker
What turned things around and turned it from denial to chasing a diagnosis was um the gastroenterologist that they brought in. I could not have enough good things to say about that man and what he did for me. He was unbelievable and absolutely dogged in his determination of, I can't figure you out, but we will find somewhere can. will.
00:10:23
Speaker
So I hear one thing that you're mentioning right now is an acknowledgement from him saying, I don't know yet, but we're on the same side of the table here. We're going to figure this out together. Yeah.
00:10:35
Speaker
And there was a constant back and forth between him and the surgeon And the the breaking point came when he offered and said, i think you need to go elsewhere and we need to send you somewhere.
00:10:52
Speaker
And the surgeon that had been managing things in tandem with him, that was his breaking point was like, If you go down this path, I'm not going to be your doctor anymore. You're taking things into your own hands against medical advice. Mom and dad were like, no, this has gone on long enough. It was almost a year in.
00:11:12
Speaker
I mean, i was in the hospital over 200 days that year. Enough was enough. At what point do you feel that you've got some degree of this initial piece under wraps or predictable that you can start making decisions again?
00:11:27
Speaker
On the way home, I mean, this is something I remember very vividly. After a lot of tears and things, once we got back to the car and they sent me home, I can remember mom and dad immediately saying, okay, you need to listen.
00:11:43
Speaker
No. No, no, no. We are not going to accept that. We will keep fighting and we will get to some kind of a better answer. And we're not just going to write this off and let things go. And I really have to benefit.
00:12:02
Speaker
or give a lot of the credit to my mom and dad for the way they handled things. I never saw them flinch. I think a lot of it, again, goes back to faith and things like that, though I know there were many times where mom and I actually, something we still do to this day, i made a rule, unless I'm crying, no one else cries.
00:12:23
Speaker
That was the deal we made with each other. Yeah, she stuck to it most of the time. What was that communicating to you? I think I was just looking for some sense of control. Everything had been, i was very athletic.
00:12:37
Speaker
um i I was over six feet tall at 13. I played ah football and basketball both, was very, very good at both.
00:12:49
Speaker
Then to have all of that just completely ripped away basically overnight and then over the course of this, it kind of felt like this steady downhill slope.
00:13:01
Speaker
lot of credit I would give. it's called a child life specialist. They basically run playrooms and therapy things and things like that. What did they give to you in that moment of need?
00:13:13
Speaker
Escape is something to think about and get your mind off of, whether it was like a game of skip boat, you know, and every kid around the table has a terminal diagnosis or have no idea what's going on yet.
00:13:26
Speaker
You're laughing and almost becomes like this family environment. As Aaron and his natural family continue to navigate the healthcare care system, their extended healthcare family continues to grow, like with the child life specialists, as well as adding new care team specialists.
00:13:42
Speaker
And following one of his trusted doctors' attendance at a conference, they learn that there is a clinic in Pittsburgh, and they are invited to head up to Pittsburgh, meet two additional new doctors, and start conducting a little bit more work in a specialty field around digestive and GI health right at the ground level where research is being conducted that is most impactful to what Aaron is facing. They don't have a complete diagnosis yet, but they are getting closer to triangulating what is it that is causing the struggles?
00:14:18
Speaker
What are the underlying medical conditions causing him to present in the ways that he is? At one point while he's up in Pittsburgh, a new doctor stands out that demonstrates what it is to build the relationship of trust that's necessary as you navigate this kind of uncertainty.
00:14:36
Speaker
I'll never forget the first thing he asked me within five minutes of meeting me. What does a good life look like for you? What is your goal from me? If you could have anything you wanted and I could snap my fingers and make it happen, what would that be?
00:14:54
Speaker
I didn't have to think for a second. It was like, i want to be able to eat again. And he said, okay. What about wanting to eat made at the top of the list? Man, it's like you don't realize like how much of life revolves around food.
00:15:10
Speaker
It's something we all take for granted, you know, as just a daily thing, a bodily function until you can't do it anymore. And then it becomes every holiday, every celebration,
00:15:22
Speaker
every family get together. It's always around a table. It's always around food to not be able to partake of any of that. And two years in, I had already seen the dilemma. put my parents in. I had two younger brothers and they were like constantly like, what do we do? Like, you know, do we put one son through the torture of having to sit and watch everybody eat?
00:15:45
Speaker
Or do we put the other two through not ever getting to go out to a restaurant or not ever having food at celebrations? Like, what do we do? The one thing i was very adamant about was, no, we're not going to stop.
00:15:58
Speaker
doing things that we do just because I can't eat. I will navigate it as best I can. I'm not gonna ruin my brother's childhood then have everything taken. i mean, we were already celebrating birthdays.
00:16:14
Speaker
i mean, the first three years I was sick, three or four years, every single holiday was in the hospital. Christmas, New Year's, birthdays, Fourth of July, every single holiday was in the hospital.
00:16:27
Speaker
And so already I was feeling a lot of guilt for that. So me wanting to be able to eat again, i mean, I'd be lying if I said that it wasn't for me mostly, but there was also, i was hoping to give some kind of normalcy back to my brothers and to my family that had been ripped away and that I carried a lot of guilt.
00:16:49
Speaker
You as a 12, 13, 14 year old experiencing a path in life that can at times feel isolating to then also not partake in these community events, even just eating dinner together is another thing emphasizing how isolating this can
Impact on Daily Life and Family
00:17:08
Speaker
be.
00:17:08
Speaker
We would go into restaurants and sit down and it kind of became a running joke because they'd be going around the table taking orders and then it would get to me. I'm good. I don't need anything.
00:17:20
Speaker
And then you always get to look from the servers that are like, OK, are they like punishing this kid or like, why aren't they letting him have food and everybody else is like towering down in front of him? That's brutal.
00:17:31
Speaker
Like I said, just so many little things that you don't think about until you're living it. Yeah. I mean, it it was unbelievably isolating. ah around 14, 15.
00:17:42
Speaker
fourteen fifteen So the tentative diagnosis, though there wasn't a for surety of it, it was called it's called chronic intestinal pseudo obstruction.
00:17:54
Speaker
Very rare. There is no cure for it. At that point, I guess would have been 24, 25 years ago where we finally start to get answers. On the one hand, we had a tentative diagnosis.
00:18:08
Speaker
I really started to struggle with anger, bitterness. My mental state really started to decline. Every time we thought we had and answer for me being able to eat again, you know, we'd get our hopes up so and go.
00:18:27
Speaker
After, you know, two, three, four times of that, you get to the point where you're like, okay, I'm not, this isn't going to work. i don't know why we're even doing this. Pretty quickly at that point, after multiple trials, failures, you know, there's nowhere else to go. This is the best of the best. They're doing everything they can, and nothing's getting better.
00:18:49
Speaker
and i had a couple of very, very close brushes with death, they made very clear is that, yes, you need your bowels to eat. So you may need a transplant at first. But what usually ends up being the terminal aspect of things is all of the comorbidities that end up happening as a result of not being able to have new the IV nutrition that you have to be on is extremely hard on the body, extremely hard on the liver, everything overall. And it's gotten better over the years.
00:19:26
Speaker
But at the time, it the only... prescription was basically my doctor used to joke was plumbing. You know, he felt like a plumber where, you know, all we can do is we just go in, take out what stopped functioning, reconnect, hope for the best.
00:19:45
Speaker
And none of it was working. I had a experience that to this day, i can't explain. ah do believe that there was an angel in the room with me. No one will ever convince me otherwise.
00:19:59
Speaker
We had actually been on my Make-A-Wish trip and it was our last day and mom flushed me and with it and and and it's crazy how line infections work. I mean, you literally go...
00:20:13
Speaker
Five minutes, you're okay. Ten minutes later, you're literally running 105, 106 temp. And it's race as fast as you can to get to a hospital and try to get things under control.
00:20:26
Speaker
Yeah, we were very far away from our hospital. We were in Florida, had to get to Chattanooga. It was just pedal to the mat at it. And it's all of that is very much a blur. I do remember my dad was pulling over and packing bags of ice around my body because I was having, um they call them rigors, tremors.
00:20:45
Speaker
When you have a severe septic infection, it's literally like seizures, except you're it's chilling just times a thousand. was so bad that like it actually had like rock pulled the back seat out of the brackets and and had to keep pulling over and fixing that and and doing everything they could. And by the time we got to the hospital, my temp was right around 107. And it was very, very dangerous. And I'll never forget.
00:21:15
Speaker
Like, I mean, it's crazy, but it's, you know, one of those things that just... it's seared in your mind. Like I'll never forget like Dr. Tlosa coming in and I knew even in the feverish state I was in and things that the look on his face was not, I mean, hey it was pretty obvious he had been crying and And he basically looked at mom and dad and me and he said, um I'm sorry, but there's there's not anything we can do.
Hope and Spiritual Experiences
00:21:48
Speaker
We'll make you as comfortable as you can be. i mean, the whole thing. And then he just quietly turns and walks out of the room. I mean, that's a make or break moment there where you're really like, okay, all right, you know, all these things, you know, life, dreams, it's gone.
00:22:13
Speaker
Like, What do I do now? You know, I slipped out into kind of like a semi coma from the meds, the fever, all of it. um And I remember being very, very, very scared when I went to sleep.
00:22:29
Speaker
And then there was a moment. And it still gets me emotional even talking about it to this day because it's so hard to describe in human words. But like I came or at least thought I had.
00:22:43
Speaker
There was ah being at the end of my bed. He said, you don't need to be afraid. Everything's going to be OK. You're going to live. and everything's going to be all right.
00:22:56
Speaker
And then gone. I remember looking over and my mom was in the chair next to my bed and she was on the phone. She had been on the phone all night calling everyone they knew, asking them to pray.
00:23:13
Speaker
She looked up and saw that I was awake for a minute. I could tell she'd been crying. And I was like, mom, come on. And she was like, no, no, honey, you need to rest. you know And I was like, no, I need i need to tell you something.
00:23:27
Speaker
Everything's going to be okay. And she was like, honey, we know. We know everything's going to be okay. And all that I was like, no, you're not you're not getting me. Everything's going to be okay.
00:23:38
Speaker
I don't know how I know I'm going to be all right. yeah About 24 hours later, they got a call from a hospital in Texas, research hospital that was doing ah research on a variation amyosin for people like me who are allergic to it.
00:24:00
Speaker
Mom and dad had to sign a whole bunch of papers and stuff to get it done. But they sent it and it was a wing and a prayer. It did just enough to give my body enough fuel and what it needed to be able to fight.
00:24:13
Speaker
It was a fight. And ah it was a few weeks later before I was even remotely normal. um But lived and somewhere mom still has it to this day.
00:24:29
Speaker
um All of the doctors that had taken care of me during that time had literally written a letter to my parents and all signed on to it for us to have kind of like as an anchor of.
00:24:41
Speaker
What an absolute miracle that it was. so basically, I had gotten yeast and it had gotten into the walls of my heart. And the um mortality rate, once that happens, at that time, it was in the high 90 percentile.
00:24:56
Speaker
And they were like, there is absolutely no way you should be alive. Now fast forward back to where we are in Pittsburgh. I had that experience. Now I'm starting to have this crisis of faith.
00:25:06
Speaker
I don't understand. like i was I've been strong through everything and I kept believing in all these things and I keep being let down over and over and over and over again and it just got darker and darker mentally and emotionally for me.
00:25:26
Speaker
We had done everything possible. We're going to take a quick moment to offer a content warning.
Mental Health Struggles and Support
00:25:34
Speaker
This portion of the story includes discussion of despair, depression, suicidal ideation, and an attempt that may be triggering for some individuals.
00:25:45
Speaker
If you need emotional support, please reach out to the National Mental Health Hotline by dialing 988.
00:25:54
Speaker
There were two surgeries left. And then the final straw was when I had the Make-A-Wish trip. And um once I was healthy enough, they transported me to Pittsburgh.
00:26:05
Speaker
And that's when I finally was like, okay, that's it. Like, we're going to go for broke with the big gun. And that was to finally go in and cut out everything they could that was not functioning properly, meaning stomach, first part of my small bowel, um part of my small intestine.
00:26:30
Speaker
We finally did that. And eight hour surgery turned into a 14 hour surgery because I had multiple episodes under full anesthesia.
00:26:42
Speaker
i came out of that surgery, and I was able to eat again. And it gave me hope, but it was a false hope. And that was what what really broke things for me fully mentally and really pushed me over the edge. And something else I haven't really mentioned here is how painful this disease is.
00:27:06
Speaker
You literally feel like you have an obstructed bowel all the time. So that initial pain that I had had from the real obstruction had become a daily reality.
00:27:19
Speaker
Not only could I not eat, but I was also in severe pain 24-7 and was on a lot of medications. Unfortunately, you know, it got to a point to where i was self-medicating as much for the bodily pain as mental pain.
00:27:37
Speaker
Words like colostomy started to get thrown around for the first time. I did everything I could to avoid that because to me and my teenage brain at this point, 16 years old, what girl is going to want be with a guy that has a bag that has poop in it and has to wear it around all the time. And like my life's over, like I'm never going to get to have that or have like a wife or a girlfriend or any of these things, you know, that a 16 year old guy is pretty much all your brain thinks about.
00:28:12
Speaker
For the first couple of years after the surgery, like I could barely take, yeah it would be three four, or five bites of something, and that was it. And I had to stop. isn't what I expected. And then to have ostomy part thrown on top of it, that really was the straw that broke things in me mentally. And that started to go down a very, very, very dark period, pushing everyone away
00:28:43
Speaker
Anything I could do to grab control of the situation, which for me was, well, they're my meds and I can do what I want with them. That's not an excuse.
00:28:55
Speaker
There was some reality to that. Not only was it self-medicating, but it was also, hey I can control this. You can't take this away from me. It became a very dangerous mindset to have.
00:29:10
Speaker
And it finally culminated with um me trying to take my own life. We tried everything. I'm not living the life of that dude. I'm God, I was like, okay, this is it.
00:29:22
Speaker
Like, either I die and I find out whether you're real or not. And... whether all this was meant for something or I wake up and I'm still meant to be here.
00:29:35
Speaker
but you But I'm not going to live this way. When I woke up in ICU and the first thing I saw on the wall was one of those old school cafeteria clocks.
00:29:47
Speaker
And I remember thinking in my head, well, either heaven is really, really different. um What I was always told it was, or, uh, I'm still here, unbelievably to my chagrin.
00:30:01
Speaker
And as I came to more and was feeling around on my body, I was like, I'm alive. How am I still alive? The hardest part of that came next when the first time my mom and dad came in the room, no one knew that I had done what I had done.
00:30:18
Speaker
It wasn't until when the home health company pharmacists went to clear the pump and saw the bolus dose and the time of it.
00:30:29
Speaker
I'll never forget the moment they walked in the room and I knew that they knew.
00:30:36
Speaker
Yeah. And yeah, what do you say? In this moment, as you're realizing what they're coming to the realization of, how does that color your definition of family further?
00:30:52
Speaker
What do you learn about family at that point? There was a lot of guilt, but there was never any kind of blame. It was, we're going to get you whatever help you need.
00:31:03
Speaker
It didn't magically fix itself overnight, truly, if it had not been for my family, friends and people that God had put around me. I don't know that I would have dug out of it the way that I did.
00:31:16
Speaker
Something that still had clung to me somehow to my brain was a sense of, okay, I made a deal. And I had done everything I had possibly could to not be here anymore.
00:31:29
Speaker
After a time of working through things and stuff, I finally got to the point where i was like, okay, if I'm going to have to live this life, I guess there's a reason for me to be here.
00:31:39
Speaker
And there's some kind of purpose to this. So I'm going to do my best, find that, and try to live life, whatever it looks like, in the best way I can.
00:31:52
Speaker
Sit tight and we'll be right back after this short break.
00:32:03
Speaker
Championship Sunday, final hole. Our leader stands over his bag. This is the moment that separates champions from everyone else.
00:32:14
Speaker
He reaches in, pulls out the familiar companions. Anxiety, fear, defensiveness. The old tools. But watch this, the head shake.
00:32:26
Speaker
The gentle return to the bag. Now what's he searching for? Ah, yes, he's found it. GoodPainCo.com emerges like a trusted cat This champion knows that real growth happens when we lean into difficulty, not away from it.
00:32:44
Speaker
He's walking the green now, listening to internal podcasts about resilience, referencing newsletter wisdom about trusting the process, the setup, vulnerability in his stance, no armor, no pretense.
00:33:00
Speaker
Just authentic presence with the challenge. Stroke, smooth, confident, and it's tracking. It's tracking. Yes, pure magic.
00:33:14
Speaker
And what's he launching into the crowd? Digital shares, podcast reviews, newsletter subscriptions, the gift that keeps giving. Join the journey at goodpainco.com.
00:33:26
Speaker
Subscribe, share, review. Because champions aren't made by avoiding pain. They're forged by choosing to grow through it. Well done, sir.
00:33:38
Speaker
Welcome back to the rest of the episode.
00:33:47
Speaker
Starting with age 12, you're going through the ups and downs of holding out hope, having those dashed, holding out hope again, having them dashed. And then you recommit to, for better or worse, try to figure it out.
00:33:59
Speaker
And now there's some avenues that open up, like college. What's that mindset shift that you had? After I got the ostomy done, my ostomy nurse came to me and she was like, you know, there are a lot of kids that were like you.
00:34:14
Speaker
had everything that they thought was going to be a fix made out to be, oh my God, this is going to be a living hell. You're now six months, a year in. like How would you possibly feel about maybe talking to other people your age like that are going to have the surgery done?
00:34:30
Speaker
And that was the first moment where I think I i felt like I could have some purpose out of all of this was, okay, maybe I can help somebody else.
00:34:42
Speaker
So there was a group of about 15 of us that were in the hospital all the time together. My best friend Brennan died. had cystic fibrosis and that was a big blow. And then um my friend Lauren.
00:34:54
Speaker
When I met Lauren, um she really became My inspiration, like because I, i had very much was still in my on the other side of things, but like in my pity party time and finding out, you know, the life she'd had to live from birth. She had a very, very rare digestive disease as well. And actually I'd had an older brother who had it as well. And he had passed away.
00:35:18
Speaker
She was born a few years later. she was actually a year older than me. And TPN and lipids were just starting to be used more. often but they were at their absolute most toxic levels.
00:35:30
Speaker
Our mom and dad, you know, they were like, yo, you lost this kid. Like, you know, never. hit There's no way another one. And then she had it too. Just to see the bravery and the joy and with which she faced every day really made me take a look in the mirror and was like, hey, dude, what's your problem? If she can do this, like, why can't you?
00:35:50
Speaker
I, again, give a lot of credit to my family and the doctors I had because they very much were of the mindset of if he can still do it and feels like he can do it, let him do it.
00:36:05
Speaker
Whether it was sport, whatever, they were like, there's not a tube that can get ripped out. There's not anything that can happen that we can't fix. If it's important to him, let him have it There were days where I'd literally get out of the hospital in the morning and I'd literally play in a game that night. yeah You had a community that rallied around you to start creating the conditions under which you could start participating. That sense of isolation started to... i think I started to let people in again. And Lauren was really the breaking point for a lot of my walls.
00:36:41
Speaker
Losing her was really the catalyst and the cure both at the same time, because when I lost her, I felt so guilty because I was in the hospital and couldn't be there for her and couldn't be there for her.
00:36:54
Speaker
She had gotten a call for her second transplant. She was in the hospital and died on the table. I couldn't go to the funeral. I couldn't do anything. i was in the hospital myself, really sick.
00:37:06
Speaker
The guilt that I carried also greatly influenced that breaking point. Everybody will hear your story. They hear the diagnosis. They hear the medical and the clinical pieces.
00:37:18
Speaker
What you just said, though, was... Yeah, everybody sees me carrying those things, but there's these other things that aren't as visible, like the guilt, those burdens. And everybody would see your diagnosis and say, he didn't he didn't get to to choose this, but also we don't get to choose this.
00:37:36
Speaker
And I put on a really good front for the longest time, losing her and then ah suicide attempts and everything. And then the memory of her was truly the catalyst that her and the others that I had lost. And it got to the point to where I was the only one of us left alive out of that group of us that were friends.
00:37:57
Speaker
It almost became a I got to live and they didn't. And there was a solid period there where there was serious like survivor's guilt of, okay, why why me? Like, why why why did I get to make it?
00:38:12
Speaker
And they didn't. Why am I getting to do these things? And they didn't. And I carried that guilt for a really long time until I finally was able to look at it from a different viewpoint of,
00:38:27
Speaker
I got to live. and They didn't. I am going to live for them and try to have the best life I can have, however long it may be, whatever it may look like.
Survivor's Guilt and Purpose
00:38:40
Speaker
I am going to try to face this with the bravery that they face their darkest hours with. And I never saw Lauren flinch.
00:38:53
Speaker
Ever. I'm sure she had her moments and times where she didn't know what to do. And I can't imagine she didn't. What was supposed to be me helping someone else ended up...
00:39:08
Speaker
like And it's the irony of all ironies because like her death was the catalyst and part of what broke me. But at the same time, her memory and of others was what ended up really anchoring me back to actually living and not just surviving and trying to find out what life would look like living.
00:39:38
Speaker
with this disease and diagnosis and yeah things like that. And I definitely had my years where I went overboard um and did a lot of dumb college kid stuff.
00:39:52
Speaker
And, but I had a really amazing doctor who was one of the two doctors on campus, had a crisis period, ended up in the hospital and, He was the doc that came to see me back when doctors still sell patients in hospitals and words like hospitalist or anything. He was like, look, I don't believe anything happens for an accident. I think we were meant to meet.
00:40:15
Speaker
I think I was meant to be here. You can't keep living like this. This isn't living or surviving. he was like, so I don't care how long it takes us. We will find whatever regiment of meds and things that it takes for you to be able to have as normal. of a life as you can possibly have for as long as you can have it.
00:40:37
Speaker
And had it not been for him, i i don't know where I'd be today. Every step of the way, every time I needed it there was someone or something that would step in and be that tether to keep holding on.
00:40:55
Speaker
And it took us about six months to a year. And we finally like landed on a decent regiment of things. And it also meant me behaving and listening and not acting like a college kid and really taking things seriously.
00:41:13
Speaker
ah In my family, we, you know, for years, we prayed for a miracle. You know, we prayed, OK, please, God, like, healing and while that never happened and this may not click for some people but i I can only give you like my viewpoint of it living it but But we view it as my miracle. Like I got years we were told that I would never have.
00:41:40
Speaker
I got to live and experience life and do things. I made mistakes. I made good decisions. got to have all of those life experiences.
00:41:54
Speaker
Bad decisions, too. Definitely made some of those and ah quite a few of them. You know, it's all part of growing up. I finally got to a place where i accepted things for what they were and made the best life I could.
00:42:11
Speaker
But it wasn't me on my own. If it had not been for my family and friends and people that were every step of the way in my life.
00:42:22
Speaker
And again, that is not to say, and by and this is something I have tried to stress in my videos. i Like, because I do struggle with imposter syndrome, like a lot of the time where it's like, I mean, if you could only see in my head some days, like how hard and bad it really is.
00:42:43
Speaker
i can truly say like every step of the way, maybe not when I wanted it, maybe not in my timing. It's very clear that patience is not my strong suit. And it's something that has been a lifelong learning thing.
00:42:57
Speaker
and Those were, you know, miracle years is what we call them. Because I got to like live and have a life. It gave me years that I didn't think I would have. But about four years ago, we were excited about the end of COVID and me getting to go back out again. and just started to notice like I was staying really exhausted all the time was craving ice chips anything super duper crunchy that's a warning sign or symptom of anemia craving that kind of texture in your mouth and so I called my primary care doctor and was just like hey something's not right we need to look into what's going on and so they did a bunch of lab work and they were like yeah you're
00:43:43
Speaker
crazy anemic, like we're going to need to give you some blood. and We definitely need to figure out like what's happened. And and at the time i was still eating. it was just the anemic side of things that had started. And it was maybe two, three, four months after that I started noticing like when I would eat, but like it was either going straight through me or I would be a lot of symptoms that I'd not had started to stack up again.
00:44:11
Speaker
It was about a year later. i had lost about 60 pounds and was having like massive water retention, lymphedema issues, things like that. We tried everything, all of the non-invasive major life-changing things that we could.
00:44:28
Speaker
my body was just not tolerating things. so And at that time, like I would try at least once a week to eat something. Instead of it getting better, it was actually getting worse and getting even harder.
00:44:44
Speaker
And i was like, okay, this is this isn't the normal white ah like episode or crisis. Something's really not right here.
00:44:55
Speaker
Other things started compounding on top of that, and instead of it being like a dropping and oh we fix this or drop and we fix that. It all just started to decline.
00:45:07
Speaker
You've gone through this arc where you have the initial realization of what's happening when you're 12, 13 and that exploration. You're realizing all the interconnection between things and what that means for the choices that you're going to make, the life you're going to get to lead. And then you get to some form of a normal where it's manageable.
00:45:28
Speaker
And then you have another dip and and more and more you're moving towards this balance of living life where you can do sports, you can eat food and more and more of your time and attention is being given to just managing the interconnected systems within your body.
Physical Decline and Diagnosis
00:45:48
Speaker
What is that experience like? The hardest thing for me was giving up cooking. It had been quiet quite a while since I had been able to be as athletic as I was um when I was younger.
00:46:01
Speaker
That was natural wear and tear from being sick for so long and things like that. But the one thing I could still do and still did every day was cook. The last big meal I ever made was three Thanksgiving's ago. And I'll never forget like that was that day like i could We had a Friendsgiving and um like I made all the food and got done cooking everything.
00:46:26
Speaker
Everybody else is like eating. And I went and literally sat down on the couch. The the next thing I know, somebody's waking me up. And I've been asleep for two hours on the couch while everybody else ate and had dinner.
00:46:37
Speaker
That was ah tough pill to swallow was like, I can't do this anymore. My body's just not going to let me do it. Then it went from that to I could be up and about for maybe 30 to 45 minutes before i had to go sit down somewhere. And then that declined to the point of if I wanted to be up at all, I had to use a cane because I was falling a lot piece by piece.
00:47:03
Speaker
All of the things that I had grown accustomed to were slowly being taken away. My doctor was like, you know, you really should consider going on hospice.
00:47:15
Speaker
So I did. i was in hospice care for eight months and that was a really, really hard decision to make and had quite a few appointments with the team of docs, different docs that managed my care. Everybody kind of gave the same answer. We've done all we can do.
00:47:32
Speaker
Obviously at that time, we had no idea the curveball that was getting ready to be dropped. April ah last year. So last week in March, one of my closest brothers in the world always comes out. He's from San Francisco.
00:47:48
Speaker
We met in the sneaker world and became fast friends. And the last day he was here, I started to have this very bizarre numbness and tingling in my shin.
00:47:59
Speaker
At first, I was like, oh, it's just a lymphedema. You know, I'm not going to worry about it. went to the airport, dropped him off on the way back home, to get that and i realized that it wasn't just my shins but it was now like my entire calves and my feet were feeling weird like ah like my feet were asleep like i'd been sitting in the wrong position too long the next day i let my nurse know she came out looked at things said what we thought at the time know i think it's just lymphedema symptoms
00:48:34
Speaker
It just steadily kept progressing. Small local town ER r had absolutely no idea what to do And eventually it got to the point April thirteen um My brother had come down because I couldn't be left by myself because at that point I had lost um it use of my legs.
00:48:55
Speaker
And was numb just about up to the bottom of my sternum. um And so essentially, just to give you an idea of what I was doing, so just to get to the restroom. So my brother literally would put my arms around him, around his neck.
00:49:16
Speaker
And then I would lock my fingers and then he would slowly raise up and lift me up. And then once I was upright, he'd turn around really quickly and then push my knees in to kind of lock my legs in place.
00:49:33
Speaker
And then I would shuffle behind him to the bathroom. And then I would lean and grab on and have him behind me holding the shirt, holding my shirt to help hold me up. And that was that entire day of that Sunday, the 14th.
00:49:52
Speaker
And then that evening, we went to do it. was like, I need to go. And he came over to do it and went to lock my knees. And it was just like there was nothing there. And I just clapped backwards on the bed.
00:50:03
Speaker
And he was like, and okay, this is definitely not lymphedema, man. like We got to do something. Got on the road and we made it about 20 minutes, 20, 30 minutes.
00:50:18
Speaker
And the other symptom that I was having that was really becoming an issue was my blood pressure bottoming out. And so my blood pressure started to bottom out. and I was like, hey, I need, we got to pull off. Like I got check my blood pressure. And so we pulled off and my blood pressure is 79 over 41. So we got back highway.
00:50:39
Speaker
um so we got back on the highway Went straight there. They were waiting on me, took me straight back. I mean, it's the fastest I've ever an ER move. and I mean, they were taking things very, very, very seriously.
00:50:52
Speaker
Within 30 minutes, I had already seen three physicians and they were coming in and testing reflex points up my body. After about 30 minutes, seeing three of them, the last one came back in and he was like, we all got the same exact results. You have absolutely no reflex reaction from the soles of your feet to your chest area. You are completely, totally paralyzed. We have an idea of what's going on, but we don't want to get ahead of ourselves. So we've asked for a neurology cons consult. At about 5 a.m., the neurologist came in. He sat down and he was like, so I'm 99% sure that you have Guillain-Barre.
00:51:30
Speaker
Now, he was like, the only issue with that is the only way to 100% tell if you have Guillain-Barre is to do a spinal tap and test your spinal fluid.
00:51:41
Speaker
And he was like, I really don't want to put you through that. If you want to be 100% sure, we can do it. I'll leave that up to you. He was like, i am willing. more than confident enough that it is what it is, that I'm ready to start the IVID treatment, which is the antibody treatment that they use for the Enveray to try to stop it.
00:52:05
Speaker
And he was like, we really need to stop this like now. because right now the real main concern is your breathing as a right mob hasn't gotten to your diaphragm yet but it is within an inch maybe two inches away of being in the danger zone so you focus on your breathing if anything changes and he was late and what i mean by anything i mean i could literally walk out of your room right now i go downstairs to my morning cup of coffee 30 minutes from now i'm going to see a blue light on the ceiling because you're going to code
00:52:36
Speaker
because your diaphragm has stopped working. Everything goes from there. He was like, so I need you to understand like how quickly this is going to turn on a dime if it does. On that part that you're describing right now, going back to even what he, the offer that he had in terms of trying to get as close as possible to 100% certainty that the diagnosis was Guillain-Barre.
00:52:59
Speaker
You've been through a number of these processes and you're dealing with the diagnostic capabilities of some physicians who you've experienced in the past have gotten it just dead wrong. And then this guy who's looking at the evidence that he can observe without the support of the hard and fast data of a spinal tap and your managing time and what he just described to you as we want to move to action as quickly as possible from a care protocol perspective.
Navigating Crisis and Rehabilitation
00:53:29
Speaker
How does that relationship to that level of certainty and trust in the physician that's in front of you dance in making the decision on whether you get a spinal tap or not? Over time, yeah yeah you kind of develop almost like a sixth sense about doctors um and egos.
00:53:47
Speaker
Is this a guy that's just like coming in here and looking at me as, oh, you know, I'm going to fix this kid or this now adult? and It'll be all about me or is this about the patient?
00:53:59
Speaker
And you really start to pick up a radar on that. He was very humble, but yet confident in what he knew. Didn't talk down to me at all. In fact, treated me almost as a peer.
00:54:14
Speaker
And that was something that I had kind of come to appreciate from certain physicians that had seen my life history and things where they didn't talk to me like I was somebody just off the street that had never experienced anything. i was like, if you are...
00:54:30
Speaker
at that level of surety and it's this seriousness. I should point out, ah being on hospice, you automatically have a DNR. That's part of the deal. The issue with that was my mom and dad are 9,000 miles away out on the other side of the world.
00:54:44
Speaker
I literally, on the way to the hospital, I'm calling them, hey I don't know if I'm dying. I don't know what this is, but we're literally saying our goodbyes just in case.
00:54:56
Speaker
I imagine things are going to start moving really quickly, which they did. Try to get here as fast as you can. I'm going to see youre my best to try to get the DNR suspended to give you guys time to get here.
00:55:08
Speaker
We'll go from there. Lots of crying, lots of tears. Now i have this physician telling me, I want you to focus on your breathing. How do you feel about a DNR? I want to rescind the DNR anyway because I want to give my parents time to get here if things do continue to go south.
00:55:24
Speaker
My dad has prostate cancer. He unfortunately could not leave immediately. mom could. What I didn't know at the time was as soon as we hung up on the phone, my mom and dad immediately were buying airline tickets for my mom.
00:55:39
Speaker
She was on a plane within two hours and she had just had a pacemaker put in. i rescinded the DNR until could, you family could get there. And I was like, and then, you know, we'll go from there. But I want at least to be able to to have the opportunity for you know to say my goodbyes and he was like good deal so we'll send the dnr until we're able to get family here and we'll see what happens with the iv id i was like perfect beyond beret basically what it does it destroys the myelin which are your nerve communicators um and
00:56:20
Speaker
Once that's destroyed, it's no different than your brain and your spine being severed. The myelin has something called the myelin sheath that covers it up so that it that the signal stays intact. Well, in in cases of seizures and brainstorming activity...
00:56:38
Speaker
They will do something called phenol injections that erode the myelin sheath and expose the myelin, which carries that electrical impulse and signal. It'll expose it so it disperses.
00:56:50
Speaker
And essentially what you're saying is is that Guillain-Barre degrades the the myelin itself. The wire that could carry the signals basically is non-existent. So the brain could be sending out signals, but there's no highway for it to get the signal to the parts of the body.
00:57:05
Speaker
It's no different than your spinal cord had been severed, you know, right there at the point of your sternum. The unfortunate reality of it, even if we manage to stop this where it is with the IVIG, that doesn't fix the damage that's already been done.
00:57:27
Speaker
Once those myelin are gone, they're gone. What do you now know about Guillain-Barre and what has HIP brought you to today? Yeah, so it's been a year and four months. So we found out pretty quickly that the medical system, unfortunately, the way things are set up is not friendly for people that are quote unquote facing pain.
00:57:52
Speaker
the end of things, whether it be months, whether it be a couple of years, whatever it may be, ah you get treated completely differently.
00:58:04
Speaker
So I was in the hospital for exactly a month with the Guillain-Barre. and when I went into the hospital, I was told, you know, hospice, you'll go right back on when you get out. Like everything will stay the same.
00:58:17
Speaker
and on your Your level of care will be obviously have to be more because you'll need around the clock care now But I had two social workers literally fighting around the clock trying to get me into a rehab facility.
00:58:31
Speaker
Every single place was turning us down turning us down because of me being on the IV nutrition and management. And they were like, we don't do that.
00:58:44
Speaker
We essentially hit the wall after about 10 days where we had to make the decision okay, what do we do? I became a massive problem for the healthcare system.
00:58:58
Speaker
So as all these doors are closing... what's the What's the door that's left for you? Oh, man. Yeah, it was ah it was a hard pill to swallow.
00:59:09
Speaker
um But the final pill, like the final plan was go somewhere that's one level. And flat. um And my mom and dad's home in Lynchburg, which was about two and a half hours south of where I was in the hospital, where I'd gone to college and things and had lived earlier in life.
00:59:32
Speaker
It's just the one level and open floor plan. And they were like, you know, that will be the best case scenario. If we can get you to the point of physical therapy, occupational therapy, um you're going to need as much of that open space as possible um in order to rehabilitate.
00:59:55
Speaker
But as far as what that rehabilitation looks like, we have no idea. Yeah. All bets are off um because of what you already are dealing with. And so we are now a year and four months post Guillain-Barre. Yeah.
01:00:13
Speaker
um I have been bed bound for the last 16 months. I can feel, I've gotten about 20% or so feeling of my muscle tissue back.
01:00:28
Speaker
um But beyond that, it's still completely numb. We really missed that major puzzle piece that was needed.
01:00:39
Speaker
you know, physical therapy and occupational therapy came in and they were like, look, when we come in you are normally coming out of that rehab facility where you have just spent the last three months plus doing very intensive, everyday, specialized therapies.
01:01:00
Speaker
And so we're literally trying to start from scratch with you. It's just not possible to do. A lot of people don't understand this is is that in certain paths for recovery, interventional windows matter. If you don't intervene at the right time along that timeline, then the chances of recovery disappear. They don't come back.
01:01:22
Speaker
um That's not how biologically and anatomically... things work. So for you guys, even that battle of trying to get into the space, that's time that is moving away from you that you cannot recover.
01:01:37
Speaker
you can't you You might be able to do a lot of things with with money and effort, but one thing you cannot do is get time back. That really started to become apparent.
01:01:48
Speaker
you know As each month went by, we started to notice as well that I was losing weight again, which being on the IV nutrition should not be happening. And they kept upping my calories and the weight kept dropping.
01:02:02
Speaker
And as of right now, So when I went into the hospital with the Guillain-Barre, I weighed 255 pounds. And as of right now, my weight fluctuates anywhere between 100 and 110 pounds. And you're six foot six, you said. And I'm six foot six. Yeah. Yeah.
01:02:20
Speaker
So it's basically, you know, skin stretched as tightly as, came I mean, I've got multiple places where thankfully there aren't any pressure wounds right now, but I've got pads on them because we're trying to prevent them.
Sharing the Story and Helping Others
01:02:36
Speaker
um You know, that's a constant struggle having to be moved and turned and all of these things, you know, now that like my limbs are locked and Even turning me as excruciatingly painful.
01:02:52
Speaker
When your body is working the way it should, oftentimes it's it's like a public utilities commission. As long as things are on, you don't even notice that they're working well. It's when they stop working that you start understanding that the body is an ecosystem that requires when you sit down or when your elbow is just resting on something,
01:03:11
Speaker
there's soft tissue, there's hard tissue, there are different things that are bolstering that amount of pressure that is on that point. And as you move those things away that normally would be there, that pressure has a different impact on your body than it does on somebody else.
01:03:29
Speaker
It's funny you should mention the elbows as an example because with the loss of my core control, if I don't have my elbows anchored I'm slowly drifting over the course of this conversation because i don't have control over my core muscles.
01:03:49
Speaker
So at night, whenever I manage to doze off or fall asleep, it never fails. I'll wake up. completely slumped over. And we've tried all kinds of different things to try to keep me centered and things. And as long as someone's in here, my mom or dad, they usually are getting in bed two, three in the morning and back up again at eight, nine at the latest and then rotating it out. All of that. Yeah. I have nurse that comes out and, you know, does lab work and stuff for the IV nutrition and,
01:04:22
Speaker
It's, you know, physical therapy, occupational therapy. I no longer have anymore um because it's just hit the point of no return. As certain aspects of support within your body start to move away... you have had to augment or on on parts of your body as padding starts moving away, you have the cornstarch pillows or the Z-Flow pillows that you use to prop them up and you you have to start augmenting that.
01:04:48
Speaker
These are all things that, again, before you did for yourself. But now as the body starts saying, I don't have the same ecosystem and I need more support,
01:05:00
Speaker
You now have a system around you socially that other people are having to step in to do those things that you used to be able to do for yourself.
01:05:10
Speaker
How is that a picture of community for you and what it looks like and that it's not pretty all the time? I am unbelievably grateful for the people that have been put into my life.
01:05:28
Speaker
But what I will say, level for me personally, the level of guilt and things that you fight and deal with because everybody's lives have had to be put on hold because me.
01:05:46
Speaker
me there's not anyone to take care of me 24 7 unless my mom is here or a family member steps in both of my parents have health issues themselves that are chronic illnesses that require treatment and so they have to fly back to Hawaii where they live and do ministry now, get treatment and then come back. So that's been a constant give and take of, you know, well which family member can slide in for this week or two weeks or three weeks.
01:06:23
Speaker
So mom can go back and go and have her doctor's appointments that she has to have or my dad can go back and get the treatments he needs to have. and then come back.
01:06:34
Speaker
And so it's just a constant going around the circle of who's available, who can go pick up meds, who can't go pick up meds, who can do this, who can do that.
01:06:44
Speaker
And it's all reliant upon other people. And that doesn't even mention the financial aspect of things and the weight of trying to manage everything with the funds that are given via disability and things like that.
01:07:05
Speaker
The reality is it's just not even remotely what is necessary. That brings us to the decision you made to make a platform. Walk us through that decision and what you ended up coming to.
01:07:18
Speaker
i' very much am a people person. I love people. I am isolated 95% of the time with whoever is here as my caretaker. And that's it. That might sound like, you know, oh my gosh, like why aren't other people coming to visit him and stuff? And it's like...
01:07:33
Speaker
5% of the time having other people here, that's even that is amazing. I'm six hours round trip away from most of my close friends at a minimum.
01:07:46
Speaker
I'm about 10 hours round trip away from most family members. So people coming and visiting and being here when they can or when needed, it's hard even for them.
01:08:00
Speaker
to be here and it's a sacrifice for them and so i really started to struggle with like i've got to find some kind of purpose something i can do to try to make sense of everything that's happened over the last 29 years of my life and i used to think that when i got sick as a kid the disease that is now slow drip taking me out over time.
01:08:30
Speaker
i used to think that that was the battle. I see it completely differently now. Had I not gone through all of that then, there is absolutely no way i would have made it through the last four years with my sanity intact.
01:08:46
Speaker
Like I mentioned in the last session where we were talking about friends that had passed on and stuff and you know, wanting to live for them, you know, that continues to be an inspiration. But I started to feel led. Again, I've talked about my faith.
01:09:04
Speaker
um And that is a guiding compass, not to say I do not have major questions. And God and I don't go back and forth on the regular.
01:09:16
Speaker
And that's a pretty common thing. So I do not in any way, shape or form want to like present myself as like somebody that thinks they have it all figured out and everything's hunky dory. We're throwing a party here every day. Happy, joy, joy. No.
01:09:32
Speaker
Not remotely. that is That's just not reality. Every day is a battle. Every day is a struggle. You learn to take things 24 hours at a time. And if that's too much, then it's 12 hours or six hours.
01:09:46
Speaker
Some days it's an hour. It's literally, okay, I just get through the next 60 minutes and then I got to do it again. And then I do it again. And that's how you get through some days.
01:09:58
Speaker
So I started to really struggle with like a sense of purpose of disconnection of not feeling like I was being able to give anything back that I was like taking so much time, you know, financial support, people donating things.
01:10:15
Speaker
And it was like, I'm constantly being the siphon. In order for me to be able to mentally deal with this, I've got to be able to give back somehow.
01:10:27
Speaker
People have no idea what it's like. There's not a week that goes by where we're not putting out fires of getting medications covered, getting medications ordered, getting things paid for, getting things not paid for.
01:10:42
Speaker
oh my goodness, there's this supply chain issue of this because they got a hurricane in this place. So now we've got to pivot and do this this way or this that way.
01:10:52
Speaker
Beyond the physical of literally like my body slowly declining, on top of it is the mental battle every single day of what meds am I not going to be able to get this week? What are we going to have to substitute with? I mean, I literally have personal phone numbers of my hands-on daily positions that aren't specialists just because of the need for that level of being able to reach out be like, hey, this fell through. This didn't get where it needed to go.
01:11:24
Speaker
What do we do here? Where do we pivot? How do we fix this? That situation has come up two or three times where I've bought literally because of Medicare or Medicaid or a simple as a signature didn't get where it needed to go.
01:11:39
Speaker
And I've lost home health care twice now. And we've had to manage and use again friends, community to bridge that gap until we can get things fixed. But the level of mental stress while all that's going on is unbelievable.
01:11:56
Speaker
ah Long story short, I came to the conclusion that I really felt like I needed to tell my story publicly. i have never been shy about sharing, but I've been very shy about people seeing my upper body to the point of like, I literally would not be seen without at least a t shirt on. period If you had told me 17 months ago, that 13 months later, I would start this video platform on Facebook and Instagram, telling my life story, fully transparent, like scars, everything there for everyone to see, I would have told you you were out of your mind.
01:12:43
Speaker
The courage has been provided, has given me the opportunity to tell my story and have people are out there that are going through their own battles.
01:12:56
Speaker
The conclusion that I've come to is that everyone has their battles. Every single human being alive has their daily battles. Mine is just a little more visible and in your face than the next person.
01:13:11
Speaker
But more often than not, those invisible battles are just as hard, sometimes even harder than the things we see is the things we don't see. So I really wanted to start this channel page on my story to hopefully have it out there for people that are going through whatever they're going to Because I can tell you in the last year, I've struggled with loneliness.
01:13:35
Speaker
abandonment, feeling forgotten, feeling like no one sees me, all of those things you feel at different points in different times. And that is a universal common human thread that we all face and all feel at different points in our lives depending on the extenuating circumstances that we're going through.
01:13:58
Speaker
Me sharing my story via these three-minute reels has given me a sense of purpose and meaning and something that I know even whenever the time does come for me, those will still be here.
01:14:17
Speaker
That's not going away. And it'll continue to live on far beyond me. We're about at the point now to where like week to week, I'm noticing, know, things are getting harder.
01:14:31
Speaker
Two, three weeks ago, I could do pretty easily. It's just the nature of the beast. I just had my birthday ah Sunday, turned 42. Definitely a birthday that I never expected to see, but I did.
01:14:44
Speaker
And it was wonderful. i am totally 100% whooped.
01:14:50
Speaker
Even two days later, but that's okay. Like we're we're getting through it and we're dealing. It's just one day at a time. Control what you can control. My pastor has been a really close friend and counselor. I was really struggling like with that loss of control.
01:15:08
Speaker
He was like most human beings, we have far less control over our lives than we think we do. We just like to think we have that control until we put in the position, say, where you are. We're were forced to realize, okay, yeah I really do not have the control that I think I do.
01:15:24
Speaker
But the one thing we do have control over is how we react to the things that we do not have control over. it And so that is my steady, constant mantra in my mind.
01:15:36
Speaker
that's pretty much where we're at. That pretty much brings me to like literally today in this moment, right? This second control what I can control.
01:15:47
Speaker
And there's a certain level of comfort in that. There's also a certain level of terror. It's terrifying. Right. And I'd be an absolute liar if I said it wasn't. Again, it's just that you kind of have to find that steady, given tape.
01:16:03
Speaker
I'm grateful that I woke up and I'm breathing and I'm still here. When I see that sun coming up, okay, all right. have one more day. have no idea what this day is going to hold.
01:16:14
Speaker
I'm here to see it.
01:16:18
Speaker
Thank you for sitting with us in this conversation, for bringing your own story, your own questions, and your own hard-won wisdom to what we're building together. If you want to keep this going, subscribe to Good Pain on Apple Podcasts or Spotify, where you can also leave us a review that helps others find their way to these conversations.
01:16:37
Speaker
And for weekly doses of conversations that go beyond quick fixes or surface-level advice, subscribe to our Kindling newsletter at goodpainco.com. Good Bain is recorded in Colorado on Arapahoe, Ute, and Cheyenne Ancestral Alliance.
01:16:53
Speaker
And let's remember, we are not alone in this. Our struggle is not our shame. Whatever we are carrying today, we don't have to carry it alone. We will see you next time.