I've had three major surgeries in the past year and I really, really, really don't recommend you try it, if you can avoid it. It's not even necessarily the surgeries themselves that are rough on me- it's the damned anesthesia, which really messed with my emotions and mood. I've started taking Gabapentin which is supposed to help with neuropathy and leveling out your mood, so hopefully that helps my chronic pain and post-surgery depression.
During the first surgery they caused trauma to my esophagus, so now I'm dealing with some reflux issues and hoarseness, as a result. It's always something, right?
But wait, that's not all! After the second surgery my oxygen saturation kept dropping and I ended up having to stay in the hospital overnight. Yup, I made it all the way through my fight with Aspergillosis without ever sleeping in the hospital, because I downright refused, even if it meant leaving there at midnight and coming back at 6 am. It only took a concerned wife to keep me there for one night, though. But hey, I got a decent meal and a bunch of popsicles out of it, even if neither of us were able to sleep very well.
I'm still working on getting my body back in order, but I know that these things are only temporary roadblocks on my path to feeling better and I'm doing my best to keep chugging along. I've made it this far, and I have no plans to stop now.
Wednesday, October 3, 2018
Wednesday, June 13, 2018
It runs in the family
Last year my dad got really sick and of course it was the result of a freak convergence of things that led to a crazy diagnosis and he's probably now in medical journals, too. Like father, like daughter.
Out of respect for his privacy I won't go into full details, but the basics are this: he caught West Nile Virus from a mosquito bite, which spread to his spinal column and caused inflammation that went to his brain causing encephalitis. The swelling in his brain caused a rare form of Guillain-Barré Syndrome called Miller Fisher Syndrome that paralyzed him. He was very sick and in the hospital and then a rehab facility, followed by months of out patient care and PT. He still suffers from some residual issues related to the nerve damage his illness caused, but he has resumed driving and working. I can't tell you how happy I was the day he could finally move the muscles in his face to smile again!
It was nerve wracking watching him suffer and watching my mom suffer as she watched him suffer. It put us all through the wringer, but I'm so glad that Kate and I were close by and could come up and help him and my mom.
I've always said I'm a lot like my dad, and while I never thought we would both end up getting rare illnesses, of course we did.
Out of respect for his privacy I won't go into full details, but the basics are this: he caught West Nile Virus from a mosquito bite, which spread to his spinal column and caused inflammation that went to his brain causing encephalitis. The swelling in his brain caused a rare form of Guillain-Barré Syndrome called Miller Fisher Syndrome that paralyzed him. He was very sick and in the hospital and then a rehab facility, followed by months of out patient care and PT. He still suffers from some residual issues related to the nerve damage his illness caused, but he has resumed driving and working. I can't tell you how happy I was the day he could finally move the muscles in his face to smile again!
It was nerve wracking watching him suffer and watching my mom suffer as she watched him suffer. It put us all through the wringer, but I'm so glad that Kate and I were close by and could come up and help him and my mom.
I've always said I'm a lot like my dad, and while I never thought we would both end up getting rare illnesses, of course we did.
Friday, June 8, 2018
Bionic Foot Graduation
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Hopefully, that was that last surgery. KNOCK ON WOOD. I'm just not in the mood for that kind of recovery anymore. I think I've paid my dues. I'm good for a lifetime. Or three.
I'm all healed up just in time for us to move, you know how we do. This time we're moving to Chicago, but first we're headed to LA for a month to put up a show. Of course, we'll be hitting a bunch of National Parks along the way. I'm ready to do some more hiking with my bionic foot!
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I still have an egg sized squishy bubble on the top of my foot that comes and goes. You can see the bottom and right perimeter of it pretty well in the photos here. My podiatrist said that it's directly to the right of where he put a half dozen screws and a 3 inch plate, so it's probably just residuals welling as that area adjusts to that extra hardware being there and is shifting some tissue around to accommodate for it. Fun stuff, I know. The new scar on top of my foot is already almost the same color as my scar from 2012.
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The ankle scars are still really dark, even the punctures. You can see a big one at the top, then a small incision, big incision, then all
those smaller puncture holes peppered along the bottom of my front ankle. I figured they were like syringe holes and would go away after a few days, but I guess not. Who knows how much digging around they had to do through those to pull all my ligaments around and they had to use a lot of deep thick stitches on the incisions since they sit right on a bone/joint.
Not bad, not bad.
Sunday, January 7, 2018
2017 Foot Surgery Update
You guys, I can bend my Franken-toe. I haven't been able to do that in YEARS!It looks like this surgery went really well and despite having some adverse reactions to the anesthesia and pain meds (vom city), things have gone a lot better than in the past.
I'm 10 weeks out and still working on re-building strength, but the pain is mostly gone. The bone is healing slower than they thought, but it's still on track, regardless. I'll start PT soon and plan to be ready to hike by the end of February when the Mrs. and I head to the PacNW redwoods.
As always, get in touch for photos of the really yucky stuff, but here are some progress pics.
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| A few weeks post-op |
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| About a month post-op |
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| My growing collection of hardware |
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| My wife matched my toes to my bruises and theywere perfectly timed for Halloween! |
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| My RN mom taking out my stitches |
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| About 2 months post-op |
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| The top of my foot continues to swell |
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| You can see all the entry points including the dot up top and the series of dots down below, where they pulled my ligaments and the big holes in the middle where they secured everything together. |
Monday, October 23, 2017
What Goes Around, Comes Around
Well, I was told this day would come. It's just a little sooner than I anticipated or was prophesied to me, but hey, I've hit my deductible for the year, anyway, and who knows if I'll even be able to afford healthcare next year, so what the hell. I'm having foot surgery! Wooo
About a year or so ago, all the feeling in my Frankentoe came back and at first it wasn't much of anything. It meant the 24/7 buzzing was pretty much gone, but at times would come back like my foot was falling asleep. No big deal. Then it started itching sometimes. Okay, that's fine. Then it started feeling crawly every so often. Still not a big deal at all. Then it started burning. Oh, hey, I remember this feeling. This is still fine. Then it started throbbing. I mean, I haven't felt it for 5 years, what's a little pain to make up for lost time, yeah? Then it started burning and crawling and throbbing all the time. And aching after I walking for more than an hour. And it was keeping me up at night. And giving me back problems. And just generally being a giant asshole.
So I started wearing compression socks every day, and getting Cortisone shots every other week, and I got new shoes and in-soles. And then I rolled my ankle for the billionth time and my podiatrist said that we were just slapping Band-aids on the problems.
Apparently my big toe bones are still not aligned properly and one of my sesamoids (a pair of little pea-sized bones on the bottom of your big toe that absorb all your weight when you walk) is rotated and not even touching the ground when I walk and the other one is taking all the weight when I walk and there is a ton of scar tissue built up where they previously shaved down my bones on the ball of my foot and my ankle also has a ton of scar tissue and my "ligaments are shot." That's a direct quote, btw
And if you have scar tissue and calluses on the ball of your foot, that means bones are rubbing together. And those bones should not be rubbing together. So that means things are mis-aligned. And for all I know, they've been mis-aligned for 5 years, because I couldn't fricking feel them. Or something slipped at some point. Again, hell if I know, I couldn't feel it. Maybe that's what caused me to start feeling things again, for all I know.
So they're going to go in and repair the big toe again. And while we're at, it fix the ligament tear from 2 years ago, and just go ahead and reinforce all the ligaments in that ankle, since they just keep going out, one by one.
And that's the latest chapter in this 10 year foot saga. I'm told this fix should last me "about 10 years," so expect an update about the next venture in about 7 years...
I'm hoping they can just 4-D print me a new foot by then using my own spit.
About a year or so ago, all the feeling in my Frankentoe came back and at first it wasn't much of anything. It meant the 24/7 buzzing was pretty much gone, but at times would come back like my foot was falling asleep. No big deal. Then it started itching sometimes. Okay, that's fine. Then it started feeling crawly every so often. Still not a big deal at all. Then it started burning. Oh, hey, I remember this feeling. This is still fine. Then it started throbbing. I mean, I haven't felt it for 5 years, what's a little pain to make up for lost time, yeah? Then it started burning and crawling and throbbing all the time. And aching after I walking for more than an hour. And it was keeping me up at night. And giving me back problems. And just generally being a giant asshole.
So I started wearing compression socks every day, and getting Cortisone shots every other week, and I got new shoes and in-soles. And then I rolled my ankle for the billionth time and my podiatrist said that we were just slapping Band-aids on the problems.
Apparently my big toe bones are still not aligned properly and one of my sesamoids (a pair of little pea-sized bones on the bottom of your big toe that absorb all your weight when you walk) is rotated and not even touching the ground when I walk and the other one is taking all the weight when I walk and there is a ton of scar tissue built up where they previously shaved down my bones on the ball of my foot and my ankle also has a ton of scar tissue and my "ligaments are shot." That's a direct quote, btw
And if you have scar tissue and calluses on the ball of your foot, that means bones are rubbing together. And those bones should not be rubbing together. So that means things are mis-aligned. And for all I know, they've been mis-aligned for 5 years, because I couldn't fricking feel them. Or something slipped at some point. Again, hell if I know, I couldn't feel it. Maybe that's what caused me to start feeling things again, for all I know.
So they're going to go in and repair the big toe again. And while we're at, it fix the ligament tear from 2 years ago, and just go ahead and reinforce all the ligaments in that ankle, since they just keep going out, one by one.
And that's the latest chapter in this 10 year foot saga. I'm told this fix should last me "about 10 years," so expect an update about the next venture in about 7 years...
I'm hoping they can just 4-D print me a new foot by then using my own spit.
Tuesday, May 30, 2017
Time just keeps on rolling
Well, hello there. It's been quite some time since I've written here. Heck, I don't know if anyone still follows this thing, or even uses Blogger, anymore, but it felt like a ripe time for an update.
A lot has happened since I last wrote two years ago. The biggest things are that:
-I left LA and moved to Austin.
-I am 7.5 years clean and sober.
-I've been repeatedly reminded that death strikes at random and life is way too short.
-I am almost 7 years since my diagnosis and 4.5 years without a reoccurrence.
-I got married last month.
It hasn't been easy, but it's been better than anything else, so far.
Leaving LA was hard. I put a lot of blood, sweat, tears, and soul into things there, most of which never turned out to be what was promised and most of which were wrapped up in someone else's ego. I got sick of the rat race and I could see myself starting to become like the people there who I didn't like, so I left. There's a drive to make something of yourself in LA, and very few ever reach whatever idea of success they want, and even the ones that do rarely seem to appreciate it. Most of the time the City of so called Angels causes people to forsake their time, energy, personal relationships, health, well-being, and sadly, their souls. Time and time again, I was presented with opportunities to sell pieces of my soul and there were definitely times that I took the bait without even realizing what I was doing. And I didn't want to be one of those people. I didn't want that kind of life. Don't get me wrong, I met some amazing people there and did some amazing things, but there's a desparation that comes from being in the Hollywood bubble and frankly it wasn't worth it to me. I was so bogged down by work and trying to make ends meet that I had to miss the funeral of my brother-in-law's father and the wedding of one of my very best friends. Mostly because the person running the theater that I worked for went on a coke bender and ran off with all money, leaving me holding the bag on his 16 years of poor business decisions and a lemon of a show, as the building and equipment were literally taken from under us. By then, I had started to unravel, so I took a hard look at my life in LA, weighed the pros and cons of staying, and then I hit the road. Sometimes you have to know when it's a good time to throw in the towel.
Luckily, a cute redhead decided she'd had her fill of LA, too, and she made plans to follow me. But before we left, my car was towed and one of my teeth fell out, both on the same day, and we both got raging bladder infections from not taking bathroom breaks during long rehearsals. We like to joke that the majority of our dates have been to doctor's offices.
The plan in August 2015 was for me to head to my hometown and lay low while I sorted through all my childhood memories and memorabilia (and also a bunch of useless crap-why do we save that stuff?) in my childhood bedroom. My parents had informed me that the statute of limitations on them storing my stuff had expired, so it was the perfect opportunity to do an inventory of all the things I'd left behind after high school and the things I'd stashed there since. The discovery of my childhood writings and diaries yielded some good laughs and I set them aside to later be used in the show Mortified.
After 6 weeks, my then girlfriend arrived. I had previously wanted to head to Atlanta, but she suggested we try Austin first. I got jobs at a coffee shop/restaurant and a children's theatre and my girlfriend got a job at a bakery and at another children's theatre. A few friends let us crash with them while we looked for a place of our own and we've been in Austin ever since. I even had a celebratory root canal right when we got to town!
Sadly, shortly before my girlfriend arrived in Texas, my long-time friend Allen Patterson died, six months after his diagnosis. You may remember Allen from this post. If you don't remember, you should go back and read it. (No, really, go and read it) I'd known Allen for most of my life. He was one of the most important people in helping shape who I am and someone who encouraged me to question everything. He was an incredibly funny, smart, kind, and opinionated person and was a witty and hilarious story-teller. His family and friends have put together a collection of some of his stories that are now available here.
A week later, my childhood friend's dad, Kirk, died of a massive heart attack. Kirk was a firefighter who showed a bunch of us kids how to rappel off the training ropes on the side of the firestation and let us take over his house every weekend to go swimming, watch movies, and destroy his kitchen. He would gladly drive us to the climbing gym, sno-cone stand, Blockbuster Video, or anywhere else we wanted to go, until we were old enough to drive ourselves. I can only ever remember a couple of times when he wasn't smiling, and that's only because we deservedly needed a stern talking to, and he was a good ole Mississippi boy who believed in respectfully putting people in their place, if they needed it- and we often did. Kirk was one of the nicest, happiest, most devoted husband and father I have ever known.
I find solace in knowing that Allen and Kirk, who were good friends and musical buddies, are out there somewhere jamming on their guitars and trading reminiscences of growing up in Mississippi.
After crashing with friends for a few months, we settled in Austin in what turned out to be a too-good-to-be-true 2-bedroom that was lacking in heat, but we also found a kitten on Christmas Day, who has turned out to be fluffier than anyone could have ever foretold and whose blue eyes helped us name her Bluebonnet. After suffering through a very cold winter and running up the electric bill with continuously running space heaters, and the heated blanket calling it quits, we broke our lease and found a suitable 1-bedroom nearby where our kitten could safely grow up and we could walk around without getting frostbite.
At some point during the very cold winter of 2015-2016, I discovered several enlightening things:
A) Something called "Cedar Fever" which is basically severe flu-like symptoms, that made me think that the fungus had come back and I was dying, but is actually just crazy intense allergies to juniper trees. Apparently it's a thing in Austin. Apparently people just shrug it off here. This is so not okay.
B) Austin is a town that likes to re-write (I use that term so very loosely) plays and musicals and thinks that's no big deal, so my girlfriend and I both stopped working with the theatres that had hired us and have pretty quickly worked our way through the short list of Austin theatre companies to find the very few that are legit.
C) I WILL find the dumbest way to get hurt, and do it famously. I managed to cut open my elbow on a piece of glass while taking the trash out at the restaurant, thus ending my short-lived career as a dishwasher/vegetable chopper. (I still make a mean salad, though)
D) Texas basically gives no rights to tenants or employees, since it's a "right to work" state and owners/employers can run their businesses however they damn well please. Don't like it? Go work someplace else! All those other places also rule in favor of the employer overlord and cheapskate boss? Then, leave the state! Businesses aren't even required to give breaks. Coming from California, the land of rights for everyone, it's been shocking to see how abuse of power is normalized in Texas!
So, in March we went back to good ole California to see the screening of a short-version of a documentary I helped produce and visited all my friends in The San Francisco Bay Area, which was a much needed soul boost. I am still so thankful for my chosen family. They have saved my life so many times, in so many ways, and I love them dearly.
I went to California again a month later, this time to LA, to work at the Daytime Emmys. While I was there I learned that one of my friends, Sarah Pankey had been murdered. I cut my LA trip short and was able to make it back to Fort Worth for her funeral. Of all the deaths these past few years, Sarah's has hit me the hardest. I met Sarah when I was in college. She was a co-worker of one of my best friends and when I came home to visit we would all hang out and be young and dumb together. We were both troublemakers and she was stubborn like me. When Sarah married the cousin of one her co-workers and they moved to Las Vegas after I moved to California, I would visit her and we would do things like get tattoos, drive around singing at the top our lungs, and day drink at Lake Mead. A few years ago, she and her husband moved back to Texas. When I followed a couple years later, they had divorced and she had moved back to Fort Worth. I was still reeling from the insane things that had happened in LA before I left, low on money, and eager for my girlfriend to arrive, so I didn't call her when I was in town. I will always regret that I didn't keep up with her after the divorce and see how she was, that I didn't stop by and see her, and that when she died, we hadn't been in touch in almost a year. Sarah didn't have an easy life and she made mistakes like the rest of us, but that girl wore her heart on her sleeve and she lived fiercely. She's the one who took me to her tattoo guy to get "Life is either a daring adventure or nothing at all" tattooed on my back (And when the tattoo guy ended up throwing in freeform stars that I didn't ask for or want, she sternly talked him down to half price) and just like how for Allen, I don't play it safe, for her, I try to keep living on the edge.
So, I proposed to my girlfriend with my Great Grandmother's ring. And she pulled a ring out of her purse, because she had been planning to propose the following week. And we promised to not let anything hold us back from living our lives to the fullest. Because life is too damn short and there's no point in wasting any time.
My fiancee's cousin was put on hospice with terminal cancer soon after that, so she went to Portland to spend time with him and her family before he passed.
Then my friend LR came to Austin. She literally ran away with the circus several years ago when we were both living in San Francisco and I've made sure to sync up with her once or twice a year to see her and the show. We got to test out Austin's kayaking together and my fiancee and I got to see the Ringling circus one last time before it closed for good.
In the summer of 2016, my fiancee got hired to direct Avenue Q in New York for a month and I started working for a local petting zoo, taking care of the animals and bringing hedgehogs, bearded dragons, rabbits, and other animals to Farmer's Markets and birthday parties. While working on an outdoor production I rolled my ankle, but it bounced back pretty quickly and I tweaked my back when someone rear-ended me, but with the help of a chiropractor and some good meds, it's slowly improving.
That fall, my fiancee did a cabaret show and performed at monthly musical theatre open mic nights and I was Set Designer/Builder and Technical Director at an area University. We also spent a lot of time with my family and old friends and went to represent the short version of the documentary I produced at a film festival in my hometown. It's fun when things come full circle like that.
In October, Tom Stanczyk, an LA actor/writer/director and a person who was always willing to lend a hand, a bit of advice, a tornado of laughter, a kind word, and/or a hug was struck by a car in Hollywood and died. That someone so generous, so passionate, so loving, could be hurt so badly and left to die, still brings me to tears. Tom was one of those people who had few enemies and legions of friends. I'll always remember how open and talented he was and I'm so glad that we were able to work together for a little bit.
To round out 2017, my fiancee had a gig on New Year's Eve singing at a speakeasy champagne party and we made plans to put up more of our own work after the wedding.
January of this year was hard-hitting. Our 10 year old cat, Tomato, that my fiancee had for her 20's died. We took him and our other cat to the vet for a routine check-up and shots and he just fell over and died as the three of us watched. The vet was right there and tried to revive him, but he was gone. We thought we had at least 5 more years with him, but we say that his final gift to us was that he died at the vet, with her right there, so we know that there is nothing we could have done to save him. It was still really hard.
A week after Tomato died, I flew to the East Coast to say goodbye to my Grandpa who was dying of cancer. I told you it's been a rough 2 years! I was able to spend 5 days in Rhode Island and Connecticut with my aunts, uncles, and cousins and spent a lot of time sitting with him. We told him stories, asked him questions, sang to him, read to him, and prayed over him. I was able to be with him his last few good days, when he was alert and eating, and able to sit up and talk to me and hold my hand. When I left he squeezed my hands, kissed my cheeks, and told me he loved me and I did the same. He died quietly the following week, as my uncle sat with him and talked to him. I'm really glad I got to spend those last moments with him and I know, even despite the cancer taking over his body, he was still lucid and his stubborn, witty, and friendly self right up to the end, leaving on his own terms.
After I got back from the East Coast I performed in Mortified the Show in February, reading excerpts from my childhood diaries live on stage. They really liked my piece, so it should be on the Mortified podcast soon. It had been a long time since I performed on stage, so it was pretty fun to stretch my stage legs and put myself outside my comfort zone. I even befriended most of the other performers and we all went and saw the most recent show after ours together!
Recently my friends Allie, who I knew in LA, and LR, who I knew in San Francisco, were diagnosed with cancer. For Allie it a reoccurrence of cancer she's been in remission from for years and for LR it was a sudden diagnosis followed by immediate surgery. LR recently joined a circus in Japan and is currently undergoing treatment there, but luckily her mom was able to come join her. Allie is surrounded by some really good friends and Stephen Tyler from Aerosmith even covered to cost of her getting a wig cut and styled (hey, it's LA). They're both incredibly strong and kind women, with so many people who love them, and I know they're fighters.
And to bring things up to date, I got married in April. I wish I could say it was the happiest day of my life and everything was beautiful, but it wasn't. There were a handful of people who were very heavily involved with things who put a huge damper on the weekend and we are still really disappointed, hurt, and angry about a lot of what happened that day. However, there were also some really beautiful moments and 95% of the other people were lovely and helpful and happy for us. We are starting to be able to focus on the good moments, but we've needed a month to be sad about the bad stuff. We're married, though, and now realizing how much paperwork is involved with that, but hopefully soon we'll be able to slip into that "Honeymoon Phase" everyone keeps talking about.
My wife and I both just started new "money" jobs, me as a salesperson at a camping/hobby store (first time in retail, woo) and she as a cocktail waitress (fancy) at a restaurant, and I was promoted to zoo manager at my other job. Now that the wedding is over we can focus on our passion projects. We began a production company last year that is almost ready to launch and we have several things in the works. We're hoping to get at least one thing, hopefully two up by the end of the year. Two of my wife's friends were just nominated for a bucketload of Tonys, so we're feeling inspired to get our stuff going! We're also applying for anything and everything artistic that crosses our path.
I can eat almost anything these days, but I still limit my mammal meat and dairy and I need to be better about how much gluten and sugar I'm eating (I think I've sufficiently made up for lost time by now). I still don't eat mushrooms or soy and I'm barely coming around to almonds and plain house salads after eating way too many of them for way too long. My wife is a Veggan (she eats eggs and some seafood), so she has really helped me expand my diet. She is a wiz at creating recipes with things that are good for me, substituting veggies and legumes for meat and dairy, in ways that actually taste good!
My foot, hip, knee, and back still hurt almost every day, but I can get around pretty well and I've even gotten back on the climbing wall a few times. My thumb calls in sick quite a bit these days, but my wife is happy to write things for me or button my shirts and I've been able to paint, albeit, a little at a time. Also, we have a pool now and I've been to the beach a few times. It's really nice to float and move in the water. It really helps alleviate my pain. I know it goes against what people think, but I hardly ever swam in California. Hardly anyone had pools and it was usually way too cold to swim, anyway. The ocean was always freezing.
I have alright health care now and even though I'll be paying off my old medical debt for a while, we were able to scrape together money for the wedding and were even able to send me to the dentist the week before the wedding when one of my crowns broke. My trusty truck Trina is still chugging along, but she's come out of things more worse for wear than I have, that's for sure. She spends most of her days sitting out front and is currently serving as storage for all the wedding stuff (who wants to buy 100 plates and 200 glasses?!) we're trying to offload on Craigslist.
I still don't know why some people die and some people don't. Or why I'm back in Texas, again. Or where else I would want to go. Or what I want to be when I grow up. Or how some people get elected to public office. Or when is the best time to eat an avocado. Or who actually reads this blog. But, I'm still trying to better myself and I'm learning and doing all I can, while I can. I'm exhausted, but I'm hopeful, and my soul is the best it's ever been and I'm still working on my physical self. And like usual, I think it would be really great if nobody else I love died for a while.
Until the next post... Be well. Be happy. Don't be safe!
A lot has happened since I last wrote two years ago. The biggest things are that:
-I left LA and moved to Austin.
-I am 7.5 years clean and sober.
-I've been repeatedly reminded that death strikes at random and life is way too short.
-I am almost 7 years since my diagnosis and 4.5 years without a reoccurrence.
-I got married last month.
It hasn't been easy, but it's been better than anything else, so far.
Leaving LA was hard. I put a lot of blood, sweat, tears, and soul into things there, most of which never turned out to be what was promised and most of which were wrapped up in someone else's ego. I got sick of the rat race and I could see myself starting to become like the people there who I didn't like, so I left. There's a drive to make something of yourself in LA, and very few ever reach whatever idea of success they want, and even the ones that do rarely seem to appreciate it. Most of the time the City of so called Angels causes people to forsake their time, energy, personal relationships, health, well-being, and sadly, their souls. Time and time again, I was presented with opportunities to sell pieces of my soul and there were definitely times that I took the bait without even realizing what I was doing. And I didn't want to be one of those people. I didn't want that kind of life. Don't get me wrong, I met some amazing people there and did some amazing things, but there's a desparation that comes from being in the Hollywood bubble and frankly it wasn't worth it to me. I was so bogged down by work and trying to make ends meet that I had to miss the funeral of my brother-in-law's father and the wedding of one of my very best friends. Mostly because the person running the theater that I worked for went on a coke bender and ran off with all money, leaving me holding the bag on his 16 years of poor business decisions and a lemon of a show, as the building and equipment were literally taken from under us. By then, I had started to unravel, so I took a hard look at my life in LA, weighed the pros and cons of staying, and then I hit the road. Sometimes you have to know when it's a good time to throw in the towel.
Luckily, a cute redhead decided she'd had her fill of LA, too, and she made plans to follow me. But before we left, my car was towed and one of my teeth fell out, both on the same day, and we both got raging bladder infections from not taking bathroom breaks during long rehearsals. We like to joke that the majority of our dates have been to doctor's offices.
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| This is what I smelled like in high school |
After 6 weeks, my then girlfriend arrived. I had previously wanted to head to Atlanta, but she suggested we try Austin first. I got jobs at a coffee shop/restaurant and a children's theatre and my girlfriend got a job at a bakery and at another children's theatre. A few friends let us crash with them while we looked for a place of our own and we've been in Austin ever since. I even had a celebratory root canal right when we got to town!
Sadly, shortly before my girlfriend arrived in Texas, my long-time friend Allen Patterson died, six months after his diagnosis. You may remember Allen from this post. If you don't remember, you should go back and read it. (No, really, go and read it) I'd known Allen for most of my life. He was one of the most important people in helping shape who I am and someone who encouraged me to question everything. He was an incredibly funny, smart, kind, and opinionated person and was a witty and hilarious story-teller. His family and friends have put together a collection of some of his stories that are now available here.
A week later, my childhood friend's dad, Kirk, died of a massive heart attack. Kirk was a firefighter who showed a bunch of us kids how to rappel off the training ropes on the side of the firestation and let us take over his house every weekend to go swimming, watch movies, and destroy his kitchen. He would gladly drive us to the climbing gym, sno-cone stand, Blockbuster Video, or anywhere else we wanted to go, until we were old enough to drive ourselves. I can only ever remember a couple of times when he wasn't smiling, and that's only because we deservedly needed a stern talking to, and he was a good ole Mississippi boy who believed in respectfully putting people in their place, if they needed it- and we often did. Kirk was one of the nicest, happiest, most devoted husband and father I have ever known.
I find solace in knowing that Allen and Kirk, who were good friends and musical buddies, are out there somewhere jamming on their guitars and trading reminiscences of growing up in Mississippi.
After crashing with friends for a few months, we settled in Austin in what turned out to be a too-good-to-be-true 2-bedroom that was lacking in heat, but we also found a kitten on Christmas Day, who has turned out to be fluffier than anyone could have ever foretold and whose blue eyes helped us name her Bluebonnet. After suffering through a very cold winter and running up the electric bill with continuously running space heaters, and the heated blanket calling it quits, we broke our lease and found a suitable 1-bedroom nearby where our kitten could safely grow up and we could walk around without getting frostbite.
At some point during the very cold winter of 2015-2016, I discovered several enlightening things:
A) Something called "Cedar Fever" which is basically severe flu-like symptoms, that made me think that the fungus had come back and I was dying, but is actually just crazy intense allergies to juniper trees. Apparently it's a thing in Austin. Apparently people just shrug it off here. This is so not okay.
B) Austin is a town that likes to re-write (I use that term so very loosely) plays and musicals and thinks that's no big deal, so my girlfriend and I both stopped working with the theatres that had hired us and have pretty quickly worked our way through the short list of Austin theatre companies to find the very few that are legit.
D) Texas basically gives no rights to tenants or employees, since it's a "right to work" state and owners/employers can run their businesses however they damn well please. Don't like it? Go work someplace else! All those other places also rule in favor of the employer overlord and cheapskate boss? Then, leave the state! Businesses aren't even required to give breaks. Coming from California, the land of rights for everyone, it's been shocking to see how abuse of power is normalized in Texas!
So, in March we went back to good ole California to see the screening of a short-version of a documentary I helped produce and visited all my friends in The San Francisco Bay Area, which was a much needed soul boost. I am still so thankful for my chosen family. They have saved my life so many times, in so many ways, and I love them dearly.
I went to California again a month later, this time to LA, to work at the Daytime Emmys. While I was there I learned that one of my friends, Sarah Pankey had been murdered. I cut my LA trip short and was able to make it back to Fort Worth for her funeral. Of all the deaths these past few years, Sarah's has hit me the hardest. I met Sarah when I was in college. She was a co-worker of one of my best friends and when I came home to visit we would all hang out and be young and dumb together. We were both troublemakers and she was stubborn like me. When Sarah married the cousin of one her co-workers and they moved to Las Vegas after I moved to California, I would visit her and we would do things like get tattoos, drive around singing at the top our lungs, and day drink at Lake Mead. A few years ago, she and her husband moved back to Texas. When I followed a couple years later, they had divorced and she had moved back to Fort Worth. I was still reeling from the insane things that had happened in LA before I left, low on money, and eager for my girlfriend to arrive, so I didn't call her when I was in town. I will always regret that I didn't keep up with her after the divorce and see how she was, that I didn't stop by and see her, and that when she died, we hadn't been in touch in almost a year. Sarah didn't have an easy life and she made mistakes like the rest of us, but that girl wore her heart on her sleeve and she lived fiercely. She's the one who took me to her tattoo guy to get "Life is either a daring adventure or nothing at all" tattooed on my back (And when the tattoo guy ended up throwing in freeform stars that I didn't ask for or want, she sternly talked him down to half price) and just like how for Allen, I don't play it safe, for her, I try to keep living on the edge.
So, I proposed to my girlfriend with my Great Grandmother's ring. And she pulled a ring out of her purse, because she had been planning to propose the following week. And we promised to not let anything hold us back from living our lives to the fullest. Because life is too damn short and there's no point in wasting any time.
My fiancee's cousin was put on hospice with terminal cancer soon after that, so she went to Portland to spend time with him and her family before he passed.
Then my friend LR came to Austin. She literally ran away with the circus several years ago when we were both living in San Francisco and I've made sure to sync up with her once or twice a year to see her and the show. We got to test out Austin's kayaking together and my fiancee and I got to see the Ringling circus one last time before it closed for good.
In the summer of 2016, my fiancee got hired to direct Avenue Q in New York for a month and I started working for a local petting zoo, taking care of the animals and bringing hedgehogs, bearded dragons, rabbits, and other animals to Farmer's Markets and birthday parties. While working on an outdoor production I rolled my ankle, but it bounced back pretty quickly and I tweaked my back when someone rear-ended me, but with the help of a chiropractor and some good meds, it's slowly improving.
That fall, my fiancee did a cabaret show and performed at monthly musical theatre open mic nights and I was Set Designer/Builder and Technical Director at an area University. We also spent a lot of time with my family and old friends and went to represent the short version of the documentary I produced at a film festival in my hometown. It's fun when things come full circle like that.
In October, Tom Stanczyk, an LA actor/writer/director and a person who was always willing to lend a hand, a bit of advice, a tornado of laughter, a kind word, and/or a hug was struck by a car in Hollywood and died. That someone so generous, so passionate, so loving, could be hurt so badly and left to die, still brings me to tears. Tom was one of those people who had few enemies and legions of friends. I'll always remember how open and talented he was and I'm so glad that we were able to work together for a little bit.
To round out 2017, my fiancee had a gig on New Year's Eve singing at a speakeasy champagne party and we made plans to put up more of our own work after the wedding.
January of this year was hard-hitting. Our 10 year old cat, Tomato, that my fiancee had for her 20's died. We took him and our other cat to the vet for a routine check-up and shots and he just fell over and died as the three of us watched. The vet was right there and tried to revive him, but he was gone. We thought we had at least 5 more years with him, but we say that his final gift to us was that he died at the vet, with her right there, so we know that there is nothing we could have done to save him. It was still really hard.
A week after Tomato died, I flew to the East Coast to say goodbye to my Grandpa who was dying of cancer. I told you it's been a rough 2 years! I was able to spend 5 days in Rhode Island and Connecticut with my aunts, uncles, and cousins and spent a lot of time sitting with him. We told him stories, asked him questions, sang to him, read to him, and prayed over him. I was able to be with him his last few good days, when he was alert and eating, and able to sit up and talk to me and hold my hand. When I left he squeezed my hands, kissed my cheeks, and told me he loved me and I did the same. He died quietly the following week, as my uncle sat with him and talked to him. I'm really glad I got to spend those last moments with him and I know, even despite the cancer taking over his body, he was still lucid and his stubborn, witty, and friendly self right up to the end, leaving on his own terms.
After I got back from the East Coast I performed in Mortified the Show in February, reading excerpts from my childhood diaries live on stage. They really liked my piece, so it should be on the Mortified podcast soon. It had been a long time since I performed on stage, so it was pretty fun to stretch my stage legs and put myself outside my comfort zone. I even befriended most of the other performers and we all went and saw the most recent show after ours together!Recently my friends Allie, who I knew in LA, and LR, who I knew in San Francisco, were diagnosed with cancer. For Allie it a reoccurrence of cancer she's been in remission from for years and for LR it was a sudden diagnosis followed by immediate surgery. LR recently joined a circus in Japan and is currently undergoing treatment there, but luckily her mom was able to come join her. Allie is surrounded by some really good friends and Stephen Tyler from Aerosmith even covered to cost of her getting a wig cut and styled (hey, it's LA). They're both incredibly strong and kind women, with so many people who love them, and I know they're fighters.
And to bring things up to date, I got married in April. I wish I could say it was the happiest day of my life and everything was beautiful, but it wasn't. There were a handful of people who were very heavily involved with things who put a huge damper on the weekend and we are still really disappointed, hurt, and angry about a lot of what happened that day. However, there were also some really beautiful moments and 95% of the other people were lovely and helpful and happy for us. We are starting to be able to focus on the good moments, but we've needed a month to be sad about the bad stuff. We're married, though, and now realizing how much paperwork is involved with that, but hopefully soon we'll be able to slip into that "Honeymoon Phase" everyone keeps talking about.
My wife and I both just started new "money" jobs, me as a salesperson at a camping/hobby store (first time in retail, woo) and she as a cocktail waitress (fancy) at a restaurant, and I was promoted to zoo manager at my other job. Now that the wedding is over we can focus on our passion projects. We began a production company last year that is almost ready to launch and we have several things in the works. We're hoping to get at least one thing, hopefully two up by the end of the year. Two of my wife's friends were just nominated for a bucketload of Tonys, so we're feeling inspired to get our stuff going! We're also applying for anything and everything artistic that crosses our path.
I can eat almost anything these days, but I still limit my mammal meat and dairy and I need to be better about how much gluten and sugar I'm eating (I think I've sufficiently made up for lost time by now). I still don't eat mushrooms or soy and I'm barely coming around to almonds and plain house salads after eating way too many of them for way too long. My wife is a Veggan (she eats eggs and some seafood), so she has really helped me expand my diet. She is a wiz at creating recipes with things that are good for me, substituting veggies and legumes for meat and dairy, in ways that actually taste good!
My foot, hip, knee, and back still hurt almost every day, but I can get around pretty well and I've even gotten back on the climbing wall a few times. My thumb calls in sick quite a bit these days, but my wife is happy to write things for me or button my shirts and I've been able to paint, albeit, a little at a time. Also, we have a pool now and I've been to the beach a few times. It's really nice to float and move in the water. It really helps alleviate my pain. I know it goes against what people think, but I hardly ever swam in California. Hardly anyone had pools and it was usually way too cold to swim, anyway. The ocean was always freezing.
I have alright health care now and even though I'll be paying off my old medical debt for a while, we were able to scrape together money for the wedding and were even able to send me to the dentist the week before the wedding when one of my crowns broke. My trusty truck Trina is still chugging along, but she's come out of things more worse for wear than I have, that's for sure. She spends most of her days sitting out front and is currently serving as storage for all the wedding stuff (who wants to buy 100 plates and 200 glasses?!) we're trying to offload on Craigslist.
I still don't know why some people die and some people don't. Or why I'm back in Texas, again. Or where else I would want to go. Or what I want to be when I grow up. Or how some people get elected to public office. Or when is the best time to eat an avocado. Or who actually reads this blog. But, I'm still trying to better myself and I'm learning and doing all I can, while I can. I'm exhausted, but I'm hopeful, and my soul is the best it's ever been and I'm still working on my physical self. And like usual, I think it would be really great if nobody else I love died for a while.
Until the next post... Be well. Be happy. Don't be safe!
Tuesday, June 9, 2015
She kept me fed and dancing
In the fall of 2012, I said goodbye to my best friend, my favorite person in the whole world, a person I loved more than I thought it was possible to love someone. And that love is why we needed to part ways. We were holding each other back from the lives waiting for us and so we needed to continue on our journeys separately in order to get to where we needed to be. We were truly a living example of loving someone enough to let them go. It was one of the hardest thing I've ever done.
“People think a soul mate is your perfect fit, and that's what everyone wants. But a true soul mate is a mirror, the person who shows you everything that is holding you back, the person who brings you to your own attention so you can change your life.
A true soul mate is probably the most important person you'll ever meet, because they tear down your walls and smack you awake. But to live with a soul mate forever? Nah. Too painful. Soul mates, they come into your life just to reveal another layer of yourself to you, and then leave.
A soul mates purpose is to shake you up, tear apart your ego a little bit, show you your obstacles and addictions, break your heart open so new light can get in, make you so desperate and out of control that you have to transform your life...” -Elizabeth Gilbert, Eat, Pray, Love
I don't even know if I believe in soul mates, but if they exist, then she one of those persons for me. She challenged me, and pissed me off, and was the most stubborn person I have ever met in my entire life (coming from me, that's saying a lot). She didn't take my shit, she cracked me wide open, she built me up, she helped me patch my broken places. She "got" me and I "got" her. She showed me my weak spots and helped me flex my strengths. And I did the same for her. She transformed my life. And then, it became painful. For both of us. And so she needed to leave. And it was hard. And messy. And drawn out. It's hard to make a clean break from someone you love so much. There are so many layers to separate, so many connections to untie.
Before I got sick, one of our favorite things was to try new foods. If it was a weird new snack or candy at the gas station, I was all over it. If there was a list of foods to try, she ate her way through it. If there was a street fair or food festival, we were all about it. We lived to eat in San Francisco. Then, I got sick, and she came up with Bren-friendly things I could eat, and explored new restaurants with me. In those years with her, I don't think I was ever hungry when I was with her. My heart and stomach were full.
She is a mover and a shaker and she kept me dancing, moving, doing. Whether it was dancing in clubs or in the streets, hiking mountains, walking the city in our barefeet, popping wheelies in my wheelchair, exploring abandoned ruins over the ocean on my crutches, or many adventures in my car, we were always on the go, and she never let me sit on my ass for long, whether I could walk, or not.
But we made each other crazy and we could never find a happy medium. I was always hungry for more from our relationship and she danced around it. Eventually the weight became too much for us too carry.
There is this great blog started by Larry Smith called Six Word Memoir/Story. You may know Larry as Piper's boyfriend from 'Orange is the New Black,' but I know him from 'Smith Magazine' and have followed his stuff for years, long before I ever knew of OITNB. I even had one of my stories make it into the top 6 for 'Six Words That Changed My Story': "Hi, I'm Bren; I'm an addict."
She was there through the bottom of my addiction and the start of my recovery. She was a catalyst for the beginning of my recovery and then my recovery was a catalyst for making huge changes in my life, which meant time away from her. Sometimes when you're cleaning house, you have to make a bigger mess first, before you can put things back in order.
Often, I think to myself what my Six Word Memoir would be for any given day. Reoccurring memoirs are along the lines of "Proving Murphy's Law does really exist" and "Life is an adventure or nothing" and "Like Dad says, 'It's always something.'"
Today, my memoir is "She kept me fed and dancing," because for the last 8 years, no matter if we were best friends, or trying to date, or breaking up, or taking time apart, or friends again, no matter where I have gone, or what I have done, she gave me fuel and kept me moving. And she will continue to do so. She always told me "wherever you go, there you are." And wherever I go, she'll be there, too. Because she is a part of me. Every time I see a coconut, or take a hike, or get lost, I send her love and light. Every time I hear a song she loved, or make a snow angel, or stick my toes in the ocean, I think of her. Every time I miss her, I know it's because we had so much fun together and because I love her so much. Those are things that never go away. We carry them with us, as imprints on our being.
"You are my person. You will always be my person." -Grey's Anatomy
Yesterday was one of those "National 'Whatever' Days" on social media, where everyone eats donuts or celebrates something. This one was 'National Best Friend Day' and the moment I saw the posts on my feed my thoughts flew to her. I think of her often, things remind me of her or there are things I want to tell her, but she's been on my mind a lot lately, for no reason in particular. Yesterday, she was at the forefront of my mind. I thought about texting her and then recanted, going back and forth for a while before finally deciding that if she's on my mind, I should tell her so and wish her well. Turns out I'd been on her mind lately, too. We had a nice exchange and I'm glad I reached out.
She's still a part of my life. She's still my favorite person. She's still my best friend. I still love her more than I thought it was possible to love someone. But we still need more time. We're still becoming who we need to be. Our goodbye is still leading to new beginnings.
I am hopeful that, one day, life will lead us back to a hello. But until then, wherever I go, she'll still be there, a reminder on my heart to always keep dancing and hungering for more.
“People think a soul mate is your perfect fit, and that's what everyone wants. But a true soul mate is a mirror, the person who shows you everything that is holding you back, the person who brings you to your own attention so you can change your life.
A true soul mate is probably the most important person you'll ever meet, because they tear down your walls and smack you awake. But to live with a soul mate forever? Nah. Too painful. Soul mates, they come into your life just to reveal another layer of yourself to you, and then leave.
A soul mates purpose is to shake you up, tear apart your ego a little bit, show you your obstacles and addictions, break your heart open so new light can get in, make you so desperate and out of control that you have to transform your life...” -Elizabeth Gilbert, Eat, Pray, Love
I don't even know if I believe in soul mates, but if they exist, then she one of those persons for me. She challenged me, and pissed me off, and was the most stubborn person I have ever met in my entire life (coming from me, that's saying a lot). She didn't take my shit, she cracked me wide open, she built me up, she helped me patch my broken places. She "got" me and I "got" her. She showed me my weak spots and helped me flex my strengths. And I did the same for her. She transformed my life. And then, it became painful. For both of us. And so she needed to leave. And it was hard. And messy. And drawn out. It's hard to make a clean break from someone you love so much. There are so many layers to separate, so many connections to untie.
Before I got sick, one of our favorite things was to try new foods. If it was a weird new snack or candy at the gas station, I was all over it. If there was a list of foods to try, she ate her way through it. If there was a street fair or food festival, we were all about it. We lived to eat in San Francisco. Then, I got sick, and she came up with Bren-friendly things I could eat, and explored new restaurants with me. In those years with her, I don't think I was ever hungry when I was with her. My heart and stomach were full.
She is a mover and a shaker and she kept me dancing, moving, doing. Whether it was dancing in clubs or in the streets, hiking mountains, walking the city in our barefeet, popping wheelies in my wheelchair, exploring abandoned ruins over the ocean on my crutches, or many adventures in my car, we were always on the go, and she never let me sit on my ass for long, whether I could walk, or not.
But we made each other crazy and we could never find a happy medium. I was always hungry for more from our relationship and she danced around it. Eventually the weight became too much for us too carry.
There is this great blog started by Larry Smith called Six Word Memoir/Story. You may know Larry as Piper's boyfriend from 'Orange is the New Black,' but I know him from 'Smith Magazine' and have followed his stuff for years, long before I ever knew of OITNB. I even had one of my stories make it into the top 6 for 'Six Words That Changed My Story': "Hi, I'm Bren; I'm an addict."
She was there through the bottom of my addiction and the start of my recovery. She was a catalyst for the beginning of my recovery and then my recovery was a catalyst for making huge changes in my life, which meant time away from her. Sometimes when you're cleaning house, you have to make a bigger mess first, before you can put things back in order.
Often, I think to myself what my Six Word Memoir would be for any given day. Reoccurring memoirs are along the lines of "Proving Murphy's Law does really exist" and "Life is an adventure or nothing" and "Like Dad says, 'It's always something.'"
Today, my memoir is "She kept me fed and dancing," because for the last 8 years, no matter if we were best friends, or trying to date, or breaking up, or taking time apart, or friends again, no matter where I have gone, or what I have done, she gave me fuel and kept me moving. And she will continue to do so. She always told me "wherever you go, there you are." And wherever I go, she'll be there, too. Because she is a part of me. Every time I see a coconut, or take a hike, or get lost, I send her love and light. Every time I hear a song she loved, or make a snow angel, or stick my toes in the ocean, I think of her. Every time I miss her, I know it's because we had so much fun together and because I love her so much. Those are things that never go away. We carry them with us, as imprints on our being.
"You are my person. You will always be my person." -Grey's Anatomy
Yesterday was one of those "National 'Whatever' Days" on social media, where everyone eats donuts or celebrates something. This one was 'National Best Friend Day' and the moment I saw the posts on my feed my thoughts flew to her. I think of her often, things remind me of her or there are things I want to tell her, but she's been on my mind a lot lately, for no reason in particular. Yesterday, she was at the forefront of my mind. I thought about texting her and then recanted, going back and forth for a while before finally deciding that if she's on my mind, I should tell her so and wish her well. Turns out I'd been on her mind lately, too. We had a nice exchange and I'm glad I reached out.
She's still a part of my life. She's still my favorite person. She's still my best friend. I still love her more than I thought it was possible to love someone. But we still need more time. We're still becoming who we need to be. Our goodbye is still leading to new beginnings.
I am hopeful that, one day, life will lead us back to a hello. But until then, wherever I go, she'll still be there, a reminder on my heart to always keep dancing and hungering for more.
Friday, May 22, 2015
I'm here.
Five years isn't so long in the grand scheme of things, but for me, the past five years feel like a whole lifetime. And they have been, in multiple ways. While others are looking forward to the holiday weekend and planning what they're going to eat, I'm thinking back on the journey that's brought me here and all I've been through since I was diagnosed with Aspergillosis five years ago.
I made this blog mainly due to the fact that I got sick and tired of explaining to everyone why I was so sick and tired, what was going on with my health, blah-blah-blah; and also to document my experiences. So, I started writing about 5 weeks into my treatment, mainly about what I was eating and updates on my various procedures and ailments. I opted not to go into much detail about the 2-3 months before that, or the physical and emotional (cuz I was really good at being "fine" all the time) trials I had endured/was enduring, mostly because it was too real, too raw at that time.
However, lately being on the other side of things, and watching others I know struggling either with chronic or terminal illnesses, or grief, or pyschosocial issues, or just life in general, I realize I did a disservice to myself and others going through similar experiences by not painting a full picture of what was happening or the severity of it- something I've been great at doing my entire life.
I'm able to be more forthright now, and the topic of my health has come up a few times recently with people who A) Knew me at the time but had no idea what was going on or how serious it was. B) Know me now and want to know why I still count my spoons every day. C) People who knew me then but think I'm magically cured and "fine" now.
Maybe one day I'll write a book and give a well-rounded and thorough depiction about my journey with good ole Aspergillus, or maybe I'll make a film about it someday, but in the meantime, here comes the ugly foreward and beautiful afterward, and there's a whole lot more to it than just me getting a weird illness.
In 2009, I was unhappy with my life, I was drinking myself to sleep every night, and through every weekend. I was incapable of making changes to improve the situation, I was co-dependent on my friends, and I was going through the motions at a job that made me miserable. At the suggestion of a couple loved ones, I stopped drinking, started going to therapy, and joined Alcoholics Anonymous.
Through therapy and AA, I starting facing my childhood molestation, depression, suicidal thoughts, drug addiction, sexual identity, adolescent sexual assaults, anxiety, behavioral issues, etc. and doing the work to repair the damage those issues had inflicted on me and the damage my reactions to them had inflicted on others and my life.
As a result of working to improve my life and myself, in February 2010, I decided to try skiiing for the first time, during which I unexpectedly decided that skiing upright is old news and skiing on your face is the new way to go. What at the time seemed like a minor spill and a scraped nose, turned out to be second degree burns to the bridge and side of my nose that was the cornerstone of a foundation I'd laid to attract a rare and deadly illness.
By mid-March, my nose was inflamed and infected, so I was prescribed antibiotics, which seemed to do nothing for a nose that continued to get sunburned, increasingly oozy, and more disgusting. Because I had been drinking for so long, to suddenly stop caused trauma to my body. My history of anxiety and gastrointestinal issues had causes trauma to my body. Because I was dealing with not drinking and my anxiety by eating high amounts of sugar and dairy caused trauma to my body. Because I had an open wound on my face that wouldn't heal my body was vulnerable. Combine a vulnerable body, under extreme trauma, with prior gastro issues, unhealthy eating, and an open wound, with antibiotics and you've just laid the groundwork for Candida to take hold, which is exactly what happened.
I developed a chronic yeast infection that entered my bloodstream and went systemic, growing in my intestinal tract, nose wound, and appearing as red, raw, rashes on my hands and feet. I was then put on medication to treat the Candidasis, which seemed to help.
By late-March, my nose seemed to getting better, but my energy level suddenly dropped, and the rashes on my hands and feet, and in my lady business became much worse.
By April, I was experiencing joint pain, shortness of breath and coughing up large amounts of mucus. I was told I had a cold because my immune system was fighting the Candida. Things still seemed under control at this point, but what I learned later is that the symptoms were a result of the Aspergillosis growing in my soft tissue.
In mid-April I began shitting blood and my nose got worse again, turning black. Before I could get an appointment with a doctor, I began developing chronic headaches and vomiting blood. I was told it was a result of my IBS reacting to the medication, my nose turning black was because it was scabbing, which was a good sign, and the headaches were a result of stress and being ill for this long.
You know that feeling when you exhale really deeply and someone quickly wraps your lungs tightly in duct tape, so you can never fully catch your breath? That's never happened to you? Okay, well, that was me at that point. I also was incapable of asking for help or letting people in on what was going on. They noticed anyway, but I still tried to be "fine" and not let on how much I was struggling, a trait I'd developed to survive up to that point.
By May, my energy level dropped dramatically and I was rapidly losing weight, which is understandable when you're shitting and vomiting blood daily. At this point I also began coughing up bloody jellyfish. After rounds of tests, I'm told I have bronchitis, but my blood tests didn't indicate anything abnormal, and to rest and give it time. Then the nosebleeds started.
By this point the Aspergillosis is in my brain, spinal column, lungs, intestines, joints, skin, and nasal cavity. In mid-May I started bleeding from my eyes and that's when I freaked the fuck out. The specialists called in the special-specialists, all the tests that cost more than a car were run, I'm stuck with every IV they can get under my skin, and I'm sent home for Memorial Weekend, being told it's probably just an extreme case of Candida and told to avoid sugar. I don't listen and eat BBQ and pie and end up in the ER when my asshole won't stop bleeding.
I am finally given my diagnosis of Aspergillosis and begin treatment, which consists of a two-week colon cleanse, four to six hour long IV treatments three days a week, about 500 different pills a day, and a strict diet of water and vegetables.
This continued through that summer and I slowly started getting better, while the weight continued to fall off. I began to learn to cook under the guidelines of my diet. I continued to work on my issues in AA and therapy and I fought with everything I had. Everything felt like a slow motion movie throughout that time, but frame by frame I kept the story going.
I got a new job that I liked that summer, where they grew an array of organic vegetables and fruit that I could eat, I switched to new oral meds that didn't make me feel like I was schizophrenic, and I began to adjust my attitude and accept life accordingly, even taking back up some of my normal activities like hiking.
I tried to make amends to people I'd wronged and correct my bad habits, I traveled and did the things I wanted to do, I gave away most of my things, I did my best to let people know what they meant to me. I made bucket lists and wrote out wills. I got my ducks in a row, just in case. I lived like I was dying.
The rest of the story picks up in this blog, and it was far from smooth sailing from there. There were a lot of ups and downs, surgeries, organs failing, clinical trials, physical torture (therapy), blood treatments, homelessness, most of the details of which were touched on in the previous entries, even if they weren't fully fleshed out.
There were many days that I thought I was going to die and there were days that I prayed to. And I don't know why I didn't. And life just kept on going. And I was swept along with it.
By October 2012, I was run-down, beat up, and done. I didn't have much fight left in me. I was sick and tired of being sick and tired and I decided to leave San Francisco and go to Texas to spend time with my family. In a way, I was giving up and going home to die. Then I lost two people who meant the world to me and it didn't kill me. And I was told that my health was good enough to stop receiving the heightened treatments I'd been undergoing. And something inside ignited. I went home for a bit and rested, got to know my baby niece, and decided if life was going to sweep me along, I may as well leave the fishbowl of my hometown and jump into the pond.
In January 2013 I headed to Los Angeles and started laying down the framework for a whole new life. Because what else can you do after you've lived like you were dying and then discovered that you weren't going to die? What else is there to be afraid of when you've already lost everything? How dare I give up when I'm still here?
People in my life have died these past few years. A lot of them. And with each one, the more my appreciation for life grows and the less fucks I give about things like swearing, or what people think of me, or what's in the tabloids, or what society says I should be doing, or what I'm wearing, or material possessions, or any of the shit that bogs us down.
Just last week a huge influence on my life, Tom Stoker, died, and another, Allen Patterson, was given a terminal prognosis. Both of these men taught me more than I can ever express, and both of them were able to be present at what Allen calls "a pre-funeral" where their lives were celebrated with those who love them. I wish we had more opportunities to celebrate our lives like that. I wish it didn't take the threat of death to make it happen. I wish we didn't waste so much time.
Allen posted this in his blog:
"But folk, please don't ever, ever, ever waste your time in being too safe.
You know that idea you have of a better way to fix broken windshields? Do it. Start that business. That book you've always wanted to write? Those earrings you want to start designing to sell online?
Do it now. Yeah, people might laugh. Who cares? There will always be people willing to wait in line to laugh at your ambitions. Let them be the ones to be safe.
Whether you know it or not, you too, are working with a short clock.
If you can to one thing right now for me or for yourself, don't be safe."
So if I've learned anything from the past five years and if I can impart any wisdom to you, it's this: LIFE IS SO DAMN SHORT. FOR FUCK'S SAKE, JUST DO WHAT MAKES YOU HAPPY!
Which is exactly what I've been trying to do since moving to LA, and why I haven't been posting on this page much. I've been out there doing what makes me happy.
And it hasn't been all sunshine and roses- I've gotten sick, and I've re-injured my foot, and I've had jobs I hated, and shit has happened, but I've been happy and mostly healthy, because I decided I still had more fight in me. Because I stopped holding things in and I tried new things and I met new people and let go of others. Because I faced my demons and owned up to my mistakes and try to correct my wrongs. Because I realized that no matter what life kicks in your face, if you're still alive, it's not too late. Because life is too short and too precious to waste. So, if you aren't happy, it's not too late; talk to someone, change something, look for the silver linings.
I'm working on projects that challenge me, and creating things, and spending time with people I enjoy being around, and learning from people who inspire me, and helping people who do good things, and I'm working hard, and I'm letting loose, and I'm getting shit done, and I'm loving it all.
And I still can't eat everything I want, and sometimes I try and it gives me diarrhea, and I get annoyed when people ask me why I can't eat ice cream today even though they saw me eat it a month ago, and my back and hip hurts all the time, and I still have a bee in my toe, and if I get even as much as a cut or a sore throat I get scared, and I can't write or draw for more than like 30 minutes a day because my thumb goes numb, and I have to sit or lay in bed for at least 12 hours a day (but more often 16) and if I don't I need two days to recover, and my humor is too dark for most people, and that's all okay, because I'm here. I'm alive. It's not too late. I'm not playing it safe.
I made this blog mainly due to the fact that I got sick and tired of explaining to everyone why I was so sick and tired, what was going on with my health, blah-blah-blah; and also to document my experiences. So, I started writing about 5 weeks into my treatment, mainly about what I was eating and updates on my various procedures and ailments. I opted not to go into much detail about the 2-3 months before that, or the physical and emotional (cuz I was really good at being "fine" all the time) trials I had endured/was enduring, mostly because it was too real, too raw at that time.
However, lately being on the other side of things, and watching others I know struggling either with chronic or terminal illnesses, or grief, or pyschosocial issues, or just life in general, I realize I did a disservice to myself and others going through similar experiences by not painting a full picture of what was happening or the severity of it- something I've been great at doing my entire life.
I'm able to be more forthright now, and the topic of my health has come up a few times recently with people who A) Knew me at the time but had no idea what was going on or how serious it was. B) Know me now and want to know why I still count my spoons every day. C) People who knew me then but think I'm magically cured and "fine" now.
Maybe one day I'll write a book and give a well-rounded and thorough depiction about my journey with good ole Aspergillus, or maybe I'll make a film about it someday, but in the meantime, here comes the ugly foreward and beautiful afterward, and there's a whole lot more to it than just me getting a weird illness.
In 2009, I was unhappy with my life, I was drinking myself to sleep every night, and through every weekend. I was incapable of making changes to improve the situation, I was co-dependent on my friends, and I was going through the motions at a job that made me miserable. At the suggestion of a couple loved ones, I stopped drinking, started going to therapy, and joined Alcoholics Anonymous.
Through therapy and AA, I starting facing my childhood molestation, depression, suicidal thoughts, drug addiction, sexual identity, adolescent sexual assaults, anxiety, behavioral issues, etc. and doing the work to repair the damage those issues had inflicted on me and the damage my reactions to them had inflicted on others and my life.
As a result of working to improve my life and myself, in February 2010, I decided to try skiiing for the first time, during which I unexpectedly decided that skiing upright is old news and skiing on your face is the new way to go. What at the time seemed like a minor spill and a scraped nose, turned out to be second degree burns to the bridge and side of my nose that was the cornerstone of a foundation I'd laid to attract a rare and deadly illness.
By mid-March, my nose was inflamed and infected, so I was prescribed antibiotics, which seemed to do nothing for a nose that continued to get sunburned, increasingly oozy, and more disgusting. Because I had been drinking for so long, to suddenly stop caused trauma to my body. My history of anxiety and gastrointestinal issues had causes trauma to my body. Because I was dealing with not drinking and my anxiety by eating high amounts of sugar and dairy caused trauma to my body. Because I had an open wound on my face that wouldn't heal my body was vulnerable. Combine a vulnerable body, under extreme trauma, with prior gastro issues, unhealthy eating, and an open wound, with antibiotics and you've just laid the groundwork for Candida to take hold, which is exactly what happened.
I developed a chronic yeast infection that entered my bloodstream and went systemic, growing in my intestinal tract, nose wound, and appearing as red, raw, rashes on my hands and feet. I was then put on medication to treat the Candidasis, which seemed to help.
By late-March, my nose seemed to getting better, but my energy level suddenly dropped, and the rashes on my hands and feet, and in my lady business became much worse.
By April, I was experiencing joint pain, shortness of breath and coughing up large amounts of mucus. I was told I had a cold because my immune system was fighting the Candida. Things still seemed under control at this point, but what I learned later is that the symptoms were a result of the Aspergillosis growing in my soft tissue.
In mid-April I began shitting blood and my nose got worse again, turning black. Before I could get an appointment with a doctor, I began developing chronic headaches and vomiting blood. I was told it was a result of my IBS reacting to the medication, my nose turning black was because it was scabbing, which was a good sign, and the headaches were a result of stress and being ill for this long.
You know that feeling when you exhale really deeply and someone quickly wraps your lungs tightly in duct tape, so you can never fully catch your breath? That's never happened to you? Okay, well, that was me at that point. I also was incapable of asking for help or letting people in on what was going on. They noticed anyway, but I still tried to be "fine" and not let on how much I was struggling, a trait I'd developed to survive up to that point.
By May, my energy level dropped dramatically and I was rapidly losing weight, which is understandable when you're shitting and vomiting blood daily. At this point I also began coughing up bloody jellyfish. After rounds of tests, I'm told I have bronchitis, but my blood tests didn't indicate anything abnormal, and to rest and give it time. Then the nosebleeds started.
By this point the Aspergillosis is in my brain, spinal column, lungs, intestines, joints, skin, and nasal cavity. In mid-May I started bleeding from my eyes and that's when I freaked the fuck out. The specialists called in the special-specialists, all the tests that cost more than a car were run, I'm stuck with every IV they can get under my skin, and I'm sent home for Memorial Weekend, being told it's probably just an extreme case of Candida and told to avoid sugar. I don't listen and eat BBQ and pie and end up in the ER when my asshole won't stop bleeding.
I am finally given my diagnosis of Aspergillosis and begin treatment, which consists of a two-week colon cleanse, four to six hour long IV treatments three days a week, about 500 different pills a day, and a strict diet of water and vegetables.
This continued through that summer and I slowly started getting better, while the weight continued to fall off. I began to learn to cook under the guidelines of my diet. I continued to work on my issues in AA and therapy and I fought with everything I had. Everything felt like a slow motion movie throughout that time, but frame by frame I kept the story going.
I got a new job that I liked that summer, where they grew an array of organic vegetables and fruit that I could eat, I switched to new oral meds that didn't make me feel like I was schizophrenic, and I began to adjust my attitude and accept life accordingly, even taking back up some of my normal activities like hiking.
I tried to make amends to people I'd wronged and correct my bad habits, I traveled and did the things I wanted to do, I gave away most of my things, I did my best to let people know what they meant to me. I made bucket lists and wrote out wills. I got my ducks in a row, just in case. I lived like I was dying.
The rest of the story picks up in this blog, and it was far from smooth sailing from there. There were a lot of ups and downs, surgeries, organs failing, clinical trials, physical torture (therapy), blood treatments, homelessness, most of the details of which were touched on in the previous entries, even if they weren't fully fleshed out.
There were many days that I thought I was going to die and there were days that I prayed to. And I don't know why I didn't. And life just kept on going. And I was swept along with it.
By October 2012, I was run-down, beat up, and done. I didn't have much fight left in me. I was sick and tired of being sick and tired and I decided to leave San Francisco and go to Texas to spend time with my family. In a way, I was giving up and going home to die. Then I lost two people who meant the world to me and it didn't kill me. And I was told that my health was good enough to stop receiving the heightened treatments I'd been undergoing. And something inside ignited. I went home for a bit and rested, got to know my baby niece, and decided if life was going to sweep me along, I may as well leave the fishbowl of my hometown and jump into the pond.
In January 2013 I headed to Los Angeles and started laying down the framework for a whole new life. Because what else can you do after you've lived like you were dying and then discovered that you weren't going to die? What else is there to be afraid of when you've already lost everything? How dare I give up when I'm still here?
People in my life have died these past few years. A lot of them. And with each one, the more my appreciation for life grows and the less fucks I give about things like swearing, or what people think of me, or what's in the tabloids, or what society says I should be doing, or what I'm wearing, or material possessions, or any of the shit that bogs us down.
Just last week a huge influence on my life, Tom Stoker, died, and another, Allen Patterson, was given a terminal prognosis. Both of these men taught me more than I can ever express, and both of them were able to be present at what Allen calls "a pre-funeral" where their lives were celebrated with those who love them. I wish we had more opportunities to celebrate our lives like that. I wish it didn't take the threat of death to make it happen. I wish we didn't waste so much time.
Allen posted this in his blog:
"But folk, please don't ever, ever, ever waste your time in being too safe.
You know that idea you have of a better way to fix broken windshields? Do it. Start that business. That book you've always wanted to write? Those earrings you want to start designing to sell online?
Do it now. Yeah, people might laugh. Who cares? There will always be people willing to wait in line to laugh at your ambitions. Let them be the ones to be safe.
Whether you know it or not, you too, are working with a short clock.
If you can to one thing right now for me or for yourself, don't be safe."
So if I've learned anything from the past five years and if I can impart any wisdom to you, it's this: LIFE IS SO DAMN SHORT. FOR FUCK'S SAKE, JUST DO WHAT MAKES YOU HAPPY!
Which is exactly what I've been trying to do since moving to LA, and why I haven't been posting on this page much. I've been out there doing what makes me happy.
And it hasn't been all sunshine and roses- I've gotten sick, and I've re-injured my foot, and I've had jobs I hated, and shit has happened, but I've been happy and mostly healthy, because I decided I still had more fight in me. Because I stopped holding things in and I tried new things and I met new people and let go of others. Because I faced my demons and owned up to my mistakes and try to correct my wrongs. Because I realized that no matter what life kicks in your face, if you're still alive, it's not too late. Because life is too short and too precious to waste. So, if you aren't happy, it's not too late; talk to someone, change something, look for the silver linings.
I'm working on projects that challenge me, and creating things, and spending time with people I enjoy being around, and learning from people who inspire me, and helping people who do good things, and I'm working hard, and I'm letting loose, and I'm getting shit done, and I'm loving it all.
And I still can't eat everything I want, and sometimes I try and it gives me diarrhea, and I get annoyed when people ask me why I can't eat ice cream today even though they saw me eat it a month ago, and my back and hip hurts all the time, and I still have a bee in my toe, and if I get even as much as a cut or a sore throat I get scared, and I can't write or draw for more than like 30 minutes a day because my thumb goes numb, and I have to sit or lay in bed for at least 12 hours a day (but more often 16) and if I don't I need two days to recover, and my humor is too dark for most people, and that's all okay, because I'm here. I'm alive. It's not too late. I'm not playing it safe.
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| Loving Life on my 30th Birthday! |
Friday, April 10, 2015
Something To Write Home About
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| But how nice is my new brace compared to the old gross one? |
...or a blog about.
I've really got to stop jinxing myself, right?! So, as luck would have it (typical), in February, after rejoicing in this blog about not going to the hospital for all of 2014, joking with friends about how we should go to the Texas State Fair and bring my scooter for old times sake, and gloating that I didn't need to wear a brace anymore over an email from the company that makes my ankle braces stating I was due for a new one... I'm back in a brace and on crutches and making up for missed socializing at the local orthopedic unit.
My ankle may be jacked (in a bad way), but so are my arms (in a good way) so my gun show is bringing all the girls to the yard, at least.
Turns out, I cannot fly, or walk on air, but I like to learn things the hard way, so I unwittingly had to test out that theory. In the middle of a crowded bar. In front of TWO casts of shows I was working on. In the middle of an extremely busy period of my life. It's how I do.
And my prize was torn ligaments in my ankle and a bump on my head! Not the golden goose I've earned in the past, but the most excitement my body has seen in a while, by far.Yes, I had to order another ankle brace. A silver lining is that with it I can't actually put my foot in my mouth!
But, hey, if this is the worst I've got going for me right now, I'll take it. It's not even a big deal that I caught a sinus and respiratory infection at the same time, either. I just keep thinking to myself that this is nothing and it's been one hundred thousand times worse than this and WOW, look how far I've come and how good it's been for a while now, and if it takes a spill down some dark stairs to remind me how fucking rad my life is, I'll roll with it.
And roll with it, I shall, while eating my words about being back in a scooter.
While playing croquet with friends for my 30th birthday.
While getting shit done, as always.
P.S. This stuff is UH. Maze. Zing!
Monday, February 9, 2015
Return of Saturn
Some inspirational junk about turning thirty and the planets aligning and other bullshit.
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