How Author Gary McPherson Turned his Rare Disease into a Breakthrough Thriller

How Author Gary McPherson Turned his Rare Disease into a Breakthrough Thriller
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While facing his own ongoing battle with a rare autoimmune disease, Gary McPherson explores the complexities of inherited genetic traits in his debut novel, “Joshua and the Shadow of Death” — the first book of the new Berserker Series. The story delves into the widespread impact of one man’s suicide and examines the human psyche following trauma, specifically addressing separation anxiety, hyperactivity, and berserker (blind rage) syndrome. I checked in with McPherson about his breakthrough thriller and how his personal adoption story with Behcet’s disease inspired his upcoming novel.

  1. Your novel discusses the idea of a beast within — while this isn’t necessarily a “beast” in the cartoon sense, the beast in your novel has to do with mental health issues. How did you research some of the issues you address –– such as the impact of suicide? Did you consult mental health professionals?

My original major in college was Social Work, so some of the psychology comes from my time in school and from working as a youth minister with high-risk kids in New Mexico. Also, I have three sons who are veterans, and all three have been deployed to the Middle East. Over the years I have kept up with what our veterans have been going through with this long conflict. I have read about multiple suicides and the cases around them. Honestly, there is no answer to suicide. Depression and desperation can make people feel trapped, and if they are unable or unwilling to seek help, they may follow through. This is part of Joshua’s quandary throughout the story. He does not understand why his close friend would not reach out to him.

  1. I know it took you until you were 32 years old to be diagnosed, but do you think that the medical community has improved in its diagnosis of rare genetic diseases? What would happen if you were a kid growing up now? Do you think you would have been diagnosed sooner?

As a broad statement, the medical community has improved its identification of many rare diseases and also in confirming conditions it had a hard time proving in the past. Speaking specifically for Behcet’s, not much has changed. The disease is very rare: there are only around 25,000 patients in the U.S. with it. While genetics can help identify the European vs. Asian strain of the disease, it is still largely identified by its symptoms. Although I had many of the symptoms at different times, it was not until I diagnosed with Uveitis, along with having mouth ulcers and some other symptoms, that I was successfully diagnosed. It is normally the last thing the doctors look for, regardless of tests, unless multiple symptoms happen to appear together. Although I hope it would not take thirty-two years today to be diagnosed, it would likely take a long time.

  1. Can you tell us about your experience with genome mapping and how that led to your understanding of your disease?

My experience with genome mapping was limited to giving many vials of blood for the lab. Before the tests came back, I was able to get my biological mother’s health and family history. However, could not, or would not, identify the biological father. So, the mapping was focused on the HLA-B serotype and my paternal genetics, which ties back to a region in or around Turkey. I was told at the time that this serotype does not mean a patient has active Behcet’s, but that it is present in patients with the disease.

  1. It seems like there are more and more tests that diagnose potential for certain genetic diseases. But even with these advancements, I’m sure there are still hurdles for patients to cross. What do the challenges look like now? Do you have any advice for people battling an unknown illness, trying to get answers?

The biggest hurdle for most of us is not the disease, or even finding the label of the disease. The most difficult part is talking with doctors who think your problems are in your head or something crazy, like herpes. Unfortunately, insurance companies and some doctors seem to think that there are no unknown diseases. I prefer a doctor who is honest and tells me they don’t know what I have than one that tries to force a hexagon into a round hole. I was diagnosed with Fibromyalgia about eight years age, and although information for this disease is readily available, I had a doctor for social security tell me six years ago that Fibro was a woman’s disease and there was no way my other three doctors were correct.

  1. You were able to find out more about your biological history through the adoption agency. Do most adoption agencies offer access to this kind of information? What advice do you have for those who have been adopted and don’t have access to this kind of genetic information?

I believe the information you can receive by an adoption agency depends on state laws and the agency. My parents used the Children’s Home Society. As a result, I have a lifetime caseworker. I only have to call their office in Sacramento, identify myself, and they will give me any information they have on record.  I am not sure what services a child adopted via a state agency, either via a foster program or other such even would be able to find.

  1. Did finding out more about your biological parents change how you identified with yourself?

No and yes. I like to joke that my parents are Scotch German, and biologically I am half Dane and part Turk, so I am in the market for a country to invade. All joking aside, I will say it was special to find out my mother emigrated from Denmark. There are very few Americans that are not first/second generation immigrants that are half of any race or country. While traveling across southern India on vacation, I was often mistaken for German; I was even identified as German on Lufthansa. That was fun until the flight attendant tried to speak to me in German. I knew how to speak Spanish growing up, but not German. Our friends from Germany said most Danes resemble people from northern Germany, so it was not shocking. However beyond the novelty of being misidentified, it did not change anything for me. At the end of the day, I am my parents’ son, and for me no genetic test will change that viewpoint.

  1. Can you take us back to the moment when you found out there was a name to your symptoms (Behcet’s)? Were you relieved? Angry? Did it change anything in how you approached your own health?

The diagnosis came in stages. The first time I heard it I was legally blind from Uveitis. Although it was 1997, I was well versed in the early Internet after working at Microsoft from the early to mid-90’s. I knew how to connect to medical universities and lookup research papers they had available. By the time I ended up in the rheumatologist’s office where he gave me the news and said it was possibly fatal, I had researched all the information. I had even brought him printouts on studies being done during that time with different drugs. This may sound funny after saying that, but it was still good to hear that final confirmation. I think he expected me to be upset, but I was relieved. I felt like I could stop worrying about what I might have or not have. I call it a miracle. I thought I had the disease figured out, and then a few years later the pain started. It has slowly grown and gotten worse as my age and the disease intersect. I am at peace with Behcet’s, but living with the effects often requires a readjustment to a new normal in my life, and that is a hard thing to learn to do.

  1. Describe some of the coping tactics you’ve developed to continue doing things you love, even when your disease might make it difficult. For example, it’s sometimes difficult for you to type. How do you get your thoughts down? How has your approach to writing changed?

I moved into writing partly due to my current condition. I was in IT as a developer and manager for twenty-seven years. That career field requires long days, nights, weekends, and often holidays. I knew I would no longer be able to maintain that pace. My writing practices follow an old farming phrase: “You need to make hay while the sun shines.” I usually write in the mornings between eight and noon. By afternoon, my hands and back hurt too much to work on my stories. Now instead of following that schedule five or six days a week, I am able to follow it three to four days a week. On my off days I will write myself reminders and notes about my stories that come to mind while I am not typing.

Thank you, Gary, for your candor about your personal journey, and how those real-life experiences inspired the upcoming Berserker Series. “Joshua and the Shadow of Death,” the first book of the series, will be available October 30. Visit him at https://gmacwriter.com/ to learn more

 


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