My Business Story: How I Transformed Disability and Despair into a Career as a Professional Writer

My Business Story:

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How I Transformed Disability and Despair into a Career as a Professional Writer

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It’s a blog post I have been dreading writing. I never wanted to write it; I still don’t want to. It’s taken almost three years of convincing by other people, the few who really know my story, for me to finally put my words down on paper. I’m doing so in the hope that it will provide inspiration to anybody facing a new disability who needs a dose of inspiration.

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Everything, everything in my life was normal until about five years ago. I worked. I was productive. I was the life of the party. And then everything changed…

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In late 2006, following several years of many unusual illnesses and hospitalizations, I was referred for many blood tests, a lumbar-puncture (“spinal-tap”), and bone-marrow biopsies. I was diagnosed with CVID, a very rare, genetic immune disorder (not AIDS, not a virus; I have nothing that can be caught). CVID affects approximately 1 in every 75,000 people. There is a part of the human bone-marrow which produces life-saving antibodies; in my case, like a light-switch, it shut off forever. Despite IVIG, the in-hospital treatment, experts say survival-rate is about 60% for 20 years and life-expectancy averages about 14 years following diagnosis. I’ve already used up five or six of those. Eventually a germ, bacteria or parasite that the average person readily fights off, will kill you. The key is to avoid those people and germs.

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More recently, I was diagnosed with Sweet’s Syndrome, an even rarer, but completely unrelated, blood disorder which affects about 1 in every 200,000 people. I am, it’s still hard for me to fathom, only the second documented case in medical literature to have these two rare disorders at the same time.

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My case-history, the documentation and progression of these two rare disorders, which will be appearing very soon in a medical journal, can, in the meantime, be found on an informational website I have created: cvidandsweetssyndrome.

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 From Despair and Depression to Published Writer:

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From the time that my doctors knew something was very wrong until the commencement of treatment, a period of almost four months ensued. The bi-monthly in-hospital treatments cost an insurance company approximately $5,000 per month. That’s every month for life (thankfully I only pay a couple of hundred of dollars each month). No insurance company welcomes that type of news. It was four months of fighting the system…and four months of sitting at home in almost complete isolation…isolation from anybody with any type of germs that could land me in hospital, or worse.

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For the first few weeks of those four months, I watched a lot of shit on TV…and sank into depression. I could not return to my previous job. Or any job around crowds of people. Ever. What would I do?

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What I did was something I had never done before:

 

I began to write. At first it was just putting my feelings and emotions to pen and paper. It was cathartic. It was healing. It passed the time: the endless hours, days, weeks and months.

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Then it became stories. Silly stories at first. I had no experience as a writer. I was going by instinct. If, as the old saying goes, “Necessity is the mother of invention,” I truly believe that boredom and almost complete isolation were the catalyst for creativity. 

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I became better and more adept with more and more practice and experience and began to combine things like a love of history with my new-found hobby.

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In 2007, I wrote and on a whim submitted a work of historical fiction to the journal Review Americana. “Life After Death in the Bronx” was chosen for publication and appeared in the Fall 2008 edition. “On Splitting Atoms and a Burgundy Dress,” a piece of historical fiction telling the story of two American GIs who were present during 1950s-era atomic tests in the Nevada desert, was submitted shortly after and appeared in the Spring 2009 edition.

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Later, as my thoughts turned poetic, it was “Self-Esteem, by-Proxy: On How Your Downfall Quells My Angst.” This work of poetry, written in 2007, sat on my desk for a year before I submitted it to the Literary Review. Had I known it was a journal which has featured 22 winners of the Nobel Prize in Literature, I never would have submitted it. I never deemed it worthy of appearing in anybody’s print. Things progressed with full-length features in the Jerusalem Post, Israel’s largest English-language daily. All I knew is that I, who had no real experience as a writer, was addicted!

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Had I stumbled upon something?

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 From a Hobby to a Career:

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The natural, next-step was expanding my hobby and trying to build a career out of it. I knew there existed a world of people who needed things like speeches, resumés, corporate bios and articles. But I had no experience other than my literary pursuits. I knew I would need a portfolio and testimonials, but with no experience, who would give me a chance?

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So I advertised my services. And when the phone failed to ring and my inbox remained empty, an idea was born: I would work for free for anyone who would allow me to use the finished pieces in my portfolio and who would pen a testimonial at the project’s end.

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Slowly, very slowly, things materialized. I built that portfolio and a base of testimonials. A small business was formed, and today I am a business writer and business blogger.

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I have managed to turn lemons into lemonade. And somehow, I was able to turn despair, depression and disability into a career, an income, and perhaps most importantly, happiness and a sense of professional purpose and worth. I will never be able to work in a standard workplace; it’s far too dangerous. But with the skills I have acquired through experience, I have the tools to stand on my own two feet. If you experience hearing problems, find a Scottsdale hearing aid center. Give yourself a chance.

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On a personal note: We’ve all heard statistics before. I know a man who in 1982, diagnosed with a deadly form of cancer was given six months to live; he’s still alive. I’ve heard the prognosis for what I have. But I’m active. I hike for hours outdoors every day, rain or shine. I run. I exercise. I frolic in the nearby woods with our dogs for hours on end. I have a wife who loves me. I’m 6-foot tall and weigh 210 lbs, not quite wasting away like I should be. And I’m out to prove those damn statistics wrong!

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I would like to take this opportunity to offer a public “Thank You!” to the special medical professionals who have treated me with care, respect and expertise for the past six years:

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     Professor Amos Etzioni, Director of Meyer Children’s Hospital, Haifa, Chief of the Dept. of Immunology at Rambam Medical Center, Haifa, and a world-renowned expert in the fields of Immunology and Immune-Deficiency.

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       And Professors Ora Paltiel and Neta Goldschmidt of the Department of Hematology, the Sharett Institute, Hadassah Medical Center, Jerusalem, Israel.

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  The Immune Deficiency Foundation is the premiere world-wide organization in providing support and information to patients with Primary Immune-Deficiency, their families, and in advocacy.

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Yonatan Maisel lives in Jerusalem, Israel with his wife and family.