I’ve been seeing this picture every time I turn on my laptop since it’s been my desktop background for many months.
It’s a gem, isn’t it?
However, it’s more than just one of my favorite images from a pool photo shoot last year with my friend, Bryan Allo (he’s awesome, by the way).
Several months ago, when I first made this my desktop background, I found peace and power in its resignation. A sort of calm strength as I resigned myself to sinking deeper into my life as a poor, disabled person without much agency over my future. I saw it as a letting go – an acceptance of my hard life and a determination to maintain grace despite sinking.
I knew I would keep dreaming, doing, being. But I also knew there would be no housing stability. No living wage. No permanence in my independence. I knew my future was only as strong as my frugality to maintain a facade of stability for as long as my dollars lasted over and above the meager Social Security Disability income that didn’t match my survival budget.
I was holding my breath here. Holding my breath so I could maintain a pose for the outside world to see my hold-it-togetherness, something I’ve gotten quite good at while being impoverished.
I created a bubble in this chasm of water, for the camera. A mimicking of my life: showing people a calm, serene, “I’m fine!” moment.
Isn’t that really all that modeling is, after all? A mimicking of life, a pretend aura? A flicker of truth shielded by a perfected faux-reality?
But I realize now I was holding my breath not for the time it would take to hit the bottom, but for the bursting of my lungs when I exploded in disbelief and joy at the dawn of the new year, 2019.
January 24th. The day I learned I would be buying a house. After years of being told I couldn’t, I suddenly was. (Read about that in my last post)
Now I look at this picture and I see an egg waiting to hatch. I see perfection held together, offering a glimpse of incubation. I see strength and light, and I see a body slowly expanding, growing into itself and outward into the light. I see a holding together and a breaking forth. And surety and fearlessness.
I see me.
A [soon-to-be] new homeowner (pending keys) who everyone doubted. I see exactly how I feel: confident, a little bit “I told you so, just watch me now,” ready to leap and also waiting to sit in my throne.
I see a commanding metamorphosis in process, perpetually.
I see what happens when there’s a reason to hope.
If you found hope in this post too, please consider supporting my writing with a $3 tip at Ko-fi.com/BeingCharis. Your support will help me renovate my new fixer-home.
BeingCharis 
I’ve seen your posts about the new house on Instagram- congratulations, that’s incredible!! The housing market is insane enough without having to also worry about balancing medical costs so buying a home is such a huge feat!!! Good luck with the new journey 🙂
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Thank you, Erin! Yes, I was extremely fortunate to find a house in a very expensive and explosive market. It was worth all the work over 3 years to get here.
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I just completed your gift of a Gold Ko-fi account. I hope it helps you with generating more gifts, and it was a privilege to do so. Best wishes and I look forward to your future blogs. Best of luck with the new house too. Sincerely, Budd & Mary Geiger 😇
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Budd, again, thank you so much. You’re so thoughtful and generous. I said as much in my previous reply to your other comment, but I can’t thank you enough. – Charis
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My fingers don’t also do as my brain asks. I started writing this email, but it somehow got sent before I could finish it. I’m sorry for the error in sending it incomplete the first time….
Hi Charis, my name is Budd Geiger. I too am an AS warrior who ❤️’s your blog and is inspired by your honest and heartfelt writing about things in which you open your heart and soul for us (your many subscribers) to gain knowledge, information about things that most people don’t know or understand, and insight on what it is like to live life with the cards you are dealt. I have childhood onset AS. I began suffering symptoms before the age of 10. I suffered a blow out of my left knee while playing in my childhood soccer league at age 11. Unfortunately, as is normal for those of us who began symtomps in early childhood, the Drs were always able to explain away my symptoms with some typical and common explanation. It wasn’t until I began being rushed to the ER a couple times a year with excruciating abdominal/back pain that the Drs started labeling the short episodes as “growing pains”. At the age of 15 I had a job as a busboy at the nicest fine dining establishment near my home in Seminole, FL. I started my first job busing tables at a tiny Italian restaraunt in Coral Gables FL at the age of 10 when my Mom, who worked only a couple months at the restaurant, called me one night and said that both the busboys who worked there had “no showed” for work on a BUSY Friday night. I rode my bike there in under 10 minutes, and as a result of covering the entire restaraunt VERY WELL (all by myself) for all 5 waitresses on duty, I made over $25 in tip outs that first night. I also received an offer of an almostfor full time job if my Mother was okay with it, and my grades stayed high in the private school I attended. My Father was an attorney, and he was General Counsel for a Life Insurance company based in Coral Gables, FL. At the age of 14, my family had relocated to the Tampa Bay Area of Florida for a new job my Father had accepted as General Counsel of a MUCH larger Insurance Company. I soon found that job at the “fine dining” restaraunt at age 14 where I was making approximately half of what my Father was earning as a Corporate Attorney. Shortly after I turned 15, I forced my parents to let me buy a small bike (125 cc). I forced them by threatening to imancipate myself since I made far more than I would ever need to live on my own. The 125 cc bike was legal for me to drive with only my restricted license which I was able to legally get at age 15 in the state of Florida back in 1982. Sadly, I was in an accident in which I was hit by a car at over 55 mph that almost took my life, and which left me paralyzed in my right arm (I was right handed) only 59 days after my 15th birthday. I was in a coma for months, and I endured extensive surgeries to set the 17 broken bones in my right arm. It wasn’t until I was finally removed from my final cast, and had the hardware removed from my right arm, that the Drs finally realized that I had damaged/stretched/torn the nerves for my right arm from my clerical spine and was diagnosed with a brachial plexus injury. It was the spinal taps with the use of dye that enabled Drs to make that diagnosis. Unfortunately, it was those same spinal taps, known as mialagrams, that became the blame for all my AS symptoms that continued to grow more frequent and painful as my lumbar spine began to hurt me worse each flare that followed. It would be years before the Drs finally led me to a Rheumatologist who finally gave me my AS diagnosis. I didn’t give in to my disabilities, and I worked hard to work my way up to an Executive level at the Insurance Company I worked at after getting married by age 21, and having a family of two sons with my wonderful and supportive wife. She too worked hard at an Insurance Company, and when I finally found my self unable to work my 60 hour work week that my position as Director of Oporations demanded, she worked even harder to receive promotion after promotion to earn enough to take care of our family as I began my adventure of taking years of Biologics. Enbral, Humira, Remicade, and then finally Xeljanz which game me an allergic reaction that almost took my life and left me with pneumonia and a body filled with more steroids than I thought it was humanly possibly to have taken. The following year was the start of a full year of remission for me. Sadly it was followed by a diagnosis of Psoriatic Arthritis PsA on top of my returning AS symptoms which they blamed on the years of taking biologics. I learned later that I was far from alone in developing PsA after years of taking biological medications, especially Humira which I took for over 6 years of the 10 years of combined use of the 4 different biological I took. My wife had also developed degenerative disc disease, and she was unfortunately on her own journey in becoming disabled. We had our retirement accounts which we had built up during our years of work. I bought a small arcade, and eventually closed it to open a larger one in a new location. I’ve built it up to the point that we will gross close to, and possibly even more than $1 million dollars in 2019. We have bought ourselves a small home with cash, and we are setting ourselves up for a comfortable retirement because we have been blessed with the ability to own our own business. We couldn’t have the retirement we planned and dreamed about when we were younger and healthier if not for the smart decisions we made with our retirement accounts.. I would not say we are wealthy by any means in this economy, however, we are quite blessed to have a successful business that we have watched grow to something bigger and better than we had prayed for. I signed up for an account at Ko-fi, and I upgraded it to a gold membership to support you and others who use the platform to help in a small way to enable them to blog, or do whatever it is they do. I’d very much be honored to upgrade you to a GOLD account. It would be a better gift than buying you a coffee, and it will enable you to accept recurring donations to help you continue to blog. It also will let you customize things any way you choose. I hope you will allow me to gift that to you. It is the least I feel I can do to help you since you write about so many things that are near and dear to my heart, as well as all to familiar. Thanks, Budd & Mary Geiger
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Budd, dear Budd (and Mary!), what an amazing story you have shared here with me and with whoever comes across it! You have so generously given me the gift of Ko-fo Gold, which I am absolutely overwhelmed by (and will use it well, no doubt!); but even more than that you shared your larger life story here with me. It is such a gift for me to have been able to create such a space where people open up and share pieces of themselves they otherwise might not have shared.
I see a lot of my grit in your life of not giving up, or vice versa (your grit in my life of not giving up!).
Ankylosing Spondylitis will indeed be a household name before I’m done with my work here. And you quite possibly just made that reality all the more possible in less time with the reach that Ko-fi can have. Bless you (whatever that means for you) always. – Charis
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Hi Charis, my name is Budd Geiger. I too am an AS warrior who ❤️’s your blog and is inspired by your honest and heartfelt writing about things in which you open your heart and soul for us (your many subscribers) to gain knowledge, information about things that most people don’t know or understand, and insight on what it is like to live life with the cards you are dealt. I have childhood onset AS. I began suffering symptoms before the age of 10. I suffered a blow out of my left knee while playing in my childhood soccer league at age 11. Unfortunately, as is normal for those of us who began symtomps in early childhood, the Drs were always able to explain away my symptoms with some typical and common explanation. It wasn’t until I began being rushed to the ER a couple times a year with excruciating abdominal/back pain that the Drs started labeling the short episodes as “growing pains”. At the age of 15 I had a job as a busboy at the nicest fine dining establishment near my home in Seminole, FL. I started my first job busing tables at a tiny Italian restaraunt in Coral Gables FL at the age of 10 when my Mom, who worked only a couple months at the restaurant, called me one night and said that both the busboys who worked there had “no showed” for work on a BUSY Friday night. I rode my bike there in under 10 minutes, and as a result of covering the entire restaraunt VERY WELL (all by myself) for all 5 waitresses on duty, I made over $25 in tip outs that first night. I also received an offer of an almostfor full time job if my Mother was okay with it, and my grades stayed high in the private school I attended. My Father was an attorney, and he was General Counsel for a Life Insurance company based in Coral Gables, FL. At the age of 14, my family had relocated to the Tampa Bay Area of Florida for a new job my Father had accepted as General Counsel of a MUCH larger Insurance Company. I soon found that job at the “fine dining” restaraunt at age 14 where I was making approximately half of what my Father was earning as a Corporate Attorney. Shortly after I turned 15, I forced my parents to let me buy a small bike (125 cc). I forced them by threatening to imancipate myself since I made far more than I would ever need to live on my own. The 125 cc bike was legal for me to drive with only my restricted license which I was able to legally get at age 15 in the state of Florida back in 1982. Sadly, I was in an accident in which I was hit by a car at over 55 mph that almost took my life, and which left me paralyzed in my right arm (I was right handed) only 59 days after my 15th birthday. I was in a coma for months, and I endured extensive surgeries to set the 17 broken bones in my right arm. It wasn’t until I was finally removed from my final cast, and had the hardware removed from my right arm, that the Drs finally realized that I had damaged/stretched/torn the nerves for my right arm from my clerical spine and was diagnosed with a brachial plexus injury. It was the spinal taps with the use of dye that enabled Drs to make that diagnosis. Unfortunately, it was those same spinal taps, known as mialagrams, that became the blame for all my AS symptoms that continued to grow more frequent and painful as my lumbar spine began to hurt me worse each flare that followed. It would be years before the Drs finally led me to a Rheumatologist who finally gave me my AS diagnosis. I didn’t give in to my disabilities, and I worked hard to work my way up to an Executive level at the Insurance Company I worked at after getting married by age 21, and having a family of two sons with my wonderful and supportive wife. She too worked hard at an Insurance Company, and when I finally found my self unable to work my 60 hour work week that my position as Director of Oporations demanded, she worked even harder to receive promotion after promotion to earn enough to take care of our family as I began my adventure of taking years of Biologics. Enbral, Humira, Remicade, and then finally Xeljanz which game me an allergic reaction that almost took my life and left me with pneumonia and a body filled with more steroids than I thought it was humanly possibly to have taken.Towards disabilitThe following year was the start of a full year of remission for me. Sadly it was followed by a diagnosis of Psoriatic Arthritis PsA on top of my returning AS symptoms which they blamed on the years of taking biologics. I learned later that I was far from alone in developing PsA after years of taking biological medications, especially Humira which I took for over 6 years of the 10 years of combined use of the 4 different biological I took. My wife had also developed degenerative disc disease, and she was unfortunately on her own journey
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