The Beanbag and the Baseline
Summary: In the series premiere of My Solo MS Journey, we travel back to "Ancient History"—Chicago, 2009. Timothy Brien shares the unlikely story of his diagnosis, which didn't start with a limp or blurred vision, but with a trip to the VA to investigate ED. Discover how a search for pituitary issues led to the discovery of three dime-sized lesions and changed everything while he was living on a friend’s beanbag chair and starting a new job.
In This Episode:
- The VA Discovery: How a routine investigation into ED led to an unexpected MRI.
- The "Dime-Sized" Reality: Hearing the news about three lesions for the first time.
- Life in Transition: Navigating a life-altering diagnosis while living on a beanbag chair and starting a job at the Illinois unemployment office.
- The Fear of Knowing: Dealing with the internal battle of wanting to run away from the doctors.
This episode includes personal discussion of chronic illness, mental health, medical treatment, and the lived experience of multiple sclerosis. Listener discretion is advised.
Website: www.mysolomsjourney.com
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Produced by: TKB Podcast Studio
Thank you for listening to My Solo MS Journey. This is a deeply personal documentary of Timothy Brien's journey with Relapsing Remitting MS. The views expressed are Timothy's alone and are not meant as medical advice. This production is made possible by TKB Podcast Studio, where we help you lead through the noise with quiet professionalism. For more information on TKB Podcast Studio, go to www.tkbpodcaststudio.com to discover what we can do for you.
Transcript
Welcome to episode one of my solo Ms.
Speaker A:Journey.
Speaker A: We're gonna go back to: Speaker A:This is what I call ancient history, because in the world of MS, 17 years feels like a lifetime ago.
Speaker A:And back then, I didn't feel like a warrior.
Speaker A:I just felt like a guy who's trying to get his fe underneath him.
Speaker A:So there I am in Chicago.
Speaker A:I was staying with a former student of mine from college.
Speaker A:Living on a beanbag wasn't the most glamorous time in my life, but there I was.
Speaker A:I had just gotten out of a really bad relationship of three years, and I had nowhere to go.
Speaker A:And I had convinced this student that New York wasn't the place to be.
Speaker A:Chicago is where real actors go.
Speaker A:So he had, you know, moved out there and got a roommate.
Speaker A:And I just left my roommate and needed a place to crash, and there I was.
Speaker A:And I think the first thing that I noticed was that I was experiencing ed.
Speaker A:Now, keep in mind, at that time, I'm in my 30s, and probably right around my mid-30s, and that happens to guys sometimes.
Speaker A:And that could have been because of the stress that I was living under, having two roommates that partied all the time, and, you know, me just getting out of a bad relationship.
Speaker A:And, you know, there I am with a master's degree, living essentially on a beanbag chair.
Speaker A:Not even a couch, but a beanbag chair.
Speaker A:So I decided to go to the VA, since I'm a veteran, 2 years, 10 months, 10 days, 12 hours, 15 minutes in the Air Force, and have them check me out.
Speaker A:So they did that.
Speaker A:And this is the time that I was also joining up with some veteran organizations, some veteran arts organizations, and really, you know, getting some of the mental stability that I needed in order to live amongst civilians.
Speaker A:And when I went and talked to that VA doc, of course it was a woman.
Speaker A:You guys can go ahead and groan right along there with me or pat me on the shoulder and go, oh, poor guy.
Speaker A:You got to tell a woman that you're having ed.
Speaker A:And, yeah, she was attractive, and she was successful and she was making money.
Speaker A:So she decided to kind of take a look at my pituitary gland, and that's when I had my first MRI.
Speaker A:Now, since that time, I've had multiple MRIs, so for me, it's not a huge deal, but when you go into an mri, and I forget if that one specifically was doing contrast or not, but when you go into an MRI, all the other MRIs I've had have been with and without contrast.
Speaker A:They stick a needle in you and you go in, in this tube and you have to hold steady.
Speaker A:The other thing too is to make sure that your head holds steady, they put this cage around your head.
Speaker A:So you're going in this tube that's much like a coffin with a cage.
Speaker A:So that way you can't move your head.
Speaker A:And I think it was then that I discovered I'm a bit claustrophobic.
Speaker A:At that time, I was 6 foot 2, I still am, and I was probably 230 pounds, a little bit heavier these days.
Speaker A:But yeah, it was a tight, cramped space.
Speaker A:We did it early in the morning and they put earplugs in my ears and they asked me what kind of music I was wanting to listen to while doing that.
Speaker A:I just said, throw in some rock, I don't care.
Speaker A:And that's when the noises started and the banging and a little bit of the panic that happens when you sit in an MRI machine.
Speaker A:I don't remember again if it was with and without contrast, but that hour in that tube was not fun is an understatement.
Speaker A:It was something that I don't wish on anybody, but that's what happened.
Speaker A:So I went home after that.
Speaker A:I was on the L and got this weird feeling about my body.
Speaker A:And I still get it to this day whenever I do an mri.
Speaker A:But just things didn't seem right.
Speaker A:Things were buzzing around me, and I'm looking around like a crazy person on the L, which is typical.
Speaker A:And I went home, probably had a few beers, maybe a couple of mixed drinks at the bar.
Speaker A:And then I tried to go to sleep because I had to be at work the next day.
Speaker A:Sleep was really difficult that night because being in a MRI again feels like being in a coffin.
Speaker A:And that whole night I was just in absolute horror and hell torture, because that was my first mri.
Speaker A:And MRI results don't come back quickly.
Speaker A:Well, back then they didn't.
Speaker A:And from the va they didn't.
Speaker A:So we had to schedule a meeting to figure out, you know, what was going on with my brain.
Speaker A:And again, we were looking at the pituitary gland.
Speaker A:So a couple of weeks passed.
Speaker A:I got my appointment.
Speaker A:Remember, this is the va, this isn't.
Speaker A:They're not doing this fast.
Speaker A:And so we're sitting there, myself and this, you know, pretty doctor who knows that I have ED and I'm not going to make any time with.
Speaker A:And she says, well, you know, we didn't find anything wrong with your pituitary gland, but we did find three lesions that are about the size of a dime.
Speaker A:And I asked, what the hell is a lesion?
Speaker A:And she said, well, that's a part of your brain that you've had, you know, some trauma to or some injury to.
Speaker A:It's not working.
Speaker A:And immediately I'm thinking, oh, my God, you know, maybe it's the weed or maybe it's, you know, somebody dropped acid on me or something like that.
Speaker A:And for me, that was, you know, my internal explanation.
Speaker A:Again, I am not a doctor, nor do I play one on TV or on this podcast.
Speaker A:But she said, no, that's possible Ms. And she asked me if I had been exerting any symptoms of Ms. Now, again, I'm not a doctor, but I didn't know what the symptoms of Ms.
Speaker A:Were.
Speaker A:I wasn't slurring any speech.
Speaker A:My cognitive facilities seemed to be all there unless I was drunk or high, but that's normal.
Speaker A:I didn't have any foot dropped.
Speaker A:My left hand, which I injured in the Air Force, and why I was no longer in the Air Force, was probably suffering from carpal tunnel.
Speaker A:But I didn't know what that was at the time either.
Speaker A:I just knew that, you know, it was feeling dull in spots.
Speaker A:And.
Speaker A:And I told her about that, and she said, well, that's when she brought out, well, that could be carpal tunnel.
Speaker A:It may not be Ms. She said, well, Ms. Usually hits women about in their 30s or 40s.
Speaker A:You're not a woman.
Speaker A:You're, you know, in your 30s, approaching 40.
Speaker A:So I wouldn't worry too much about it, but I would, you know, check in with us every so often.
Speaker A:And that experience was so mortifying that I didn't bother to check in with them more often.
Speaker A:So I am walking around Chicago and walking around life knowing that I have these lesions in my head, not knowing why, not knowing what they're going to be leading into, not knowing how to check them other than to go into this big coffin tomb, loud machine that's very cramped and is not the most pleasant experience in the world.
Speaker A:And so I let it go for the rest of ancient history.
Speaker A:And that's where I was at at that time in my life.
Speaker A:So I guess I was relieved that it wasn't something to do with my pituitary glands.
Speaker A:I didn't have to get any hormone shots.
Speaker A:I believe they also checked my testosterone levels and saw that they were low, and that could be caused by stress.
Speaker A:But, you know, the lesions, I was like, the VA doesn't know what they're talking about.
Speaker A:You know, they just recently approved penicillin to fight infections.
Speaker A:So I Didn't want to believe them.
Speaker A:I didn't want to think that they might know what they're talking about.
Speaker A:It's a lot easier to ignore it, especially since I wasn't having the classic symptoms of ms, which I don't really know what they are necessarily accepting that I might have.
Speaker A:Ms. Was a dark hole.
Speaker A:I didn't want to go down.
Speaker A:And if you're in that hole right now, I want to let you know it's okay.
Speaker A:It's okay to be terrified.
Speaker A:It's okay to be scared, to actually find out that you have the diagnosis.
Speaker A:You know, I could have stayed in that beanbag chair forever if I wanted to.
Speaker A:And, you know, maybe it would have been easier, Maybe it wouldn't have done anything different for me, but if I would have stayed in that beanbag chair, that fear would have stayed with me as well.
Speaker A:So I'm glad I got out of that beanbag chair and sitting here again in my man cave with the computer on and lights on, talking to you.
Speaker A:So I guess at the end of these episodes, what I want to do is kind of talk to myself.
Speaker A:So I hope you don't mind if I talk to myself for a couple of moments here.
Speaker A: But sitting here in: Speaker A:I would have said, get out of that beanbag chair quicker.
Speaker A:Follow through with the docs, find out if you actually do have ms, because there are treatments that can help.
Speaker A:You know, at that time, I was getting ready to start a job at the unemployment office.
Speaker A:And a couple years later, I had a co worker that did have Ms. And I talked to her about it, and she wanted to slap me in the face and say, hey, listen, get this checked out.
Speaker A:As a matter of fact, I think she probably did.
Speaker A:And, you know, at that meeting, I would step in and say to myself, listen to her.
Speaker A:She knows what she's talking about.
Speaker A:She has Ms. She can help you.
Speaker A:And I didn't want to hear about that.
Speaker A:I didn't want to end up like her now with a walker, wheelchair, taking shots.
Speaker A:I didn't want that.
Speaker A:It was easier for me to stay on that beanbag chair.
Speaker A:And that's where I stayed for a number of years.
Speaker A:Here's the thing.
Speaker A:The doctors.
Speaker A:If you.
Speaker A:If you miss your appointment, the doctors are not going to call you and go, hey, listen, you need to get this done.
Speaker A:They're not.
Speaker A:They have other patients that they're dealing with.
Speaker A:You need to do that for you.
Speaker A:You need to do that.
Speaker A:So that way you can get the help that you need.
Speaker A:They didn't call me.
Speaker A:They didn't call me.
Speaker A:I thought if they really cared they'd call me or if they're really serious about this, they'll call me back.
Speaker A:They never did.
Speaker A:They went on to the next patient and I'm not angry at them for that.
Speaker A:They have to go on to the next patient.
Speaker A:Next patient could have Ms. And want to get treatment and do something about it.
Speaker A:But they didn't call me and I didn't get off that bean back for years afterwards.
Speaker A:This is my solo Ms.
Speaker A:Journey.
Speaker A:My name is Tim Bryant.
Speaker A:I want to thank you for joining me on this first episode.
Speaker A:If you want to get all the episodes, you can go to mysolomsjourney.com Initially this is planned for nine episodes.
Speaker A:It may go longer because my journey hasn't stopped.
Speaker A:And I want to thank you for coming along this journey with me.
Speaker A:Sam.
