After high school, I attended and graduated from a class in machinist training through NASA. I worked for multiple machine shops throughout the years and ultimately became a journeyman machinist, CNC milling/CNC lathe programmer. In the late 1990s/early 2000s I started a company called ProFlight Boat Towers and Accessories which was basically the first company on the West Coast to put boat towers and all of the accessories that go with them into production. We sold to major boat factories, boat dealers, and direct to the public.

Since I was a small child I have always immersed myself in water sports. In my teens, I swam in the Junior Olympics, and in my late 50s I swam from Alcatraz to San Francisco. My father and I built my first car together when I was in high school and since then boating and hot rodding have been in my blood. When the economy turned in the early 2000s, I got into the swimming pool business, designing and selling new swimming pools. That knowledge then led me into the swimming pool remodeling business which is what I was doing at the onset of my battle with ME/CFS. Just prior to my incident I had lost over 125 pounds and we were hiking, wake surfing, fishing, doing hot rod shows, and exercising every weekend and throughout the week.

On November 24, 2020, my life changed. I was towing my fishing boat behind my truck on the freeway in commuter traffic at 55 mph. I had my best friend with me as a passenger in the truck and something went severely wrong. I said out loud “something’s wrong, grab the wheel” and I passed out. He grabbed the wheel, got us pulled over and ultimately got us to the emergency room. After being released from the emergency room that day it was 10 months of CT scans, MRI’s, EKG’s, EEG, blood tests, spinal fluid testing, etc.  As my neurologist provided me the results of some of the final tests, he stated to me that he had run out of options and it was time for me to “suck it up and return to work”. In short, that was the day I got mad, I filed grievances with my health insurance company which ultimately led my doctor to go to a grand round and present my case to other professionals, which in turn led to three other doctors providing my diagnosis of ME/CFS. My neurologist had never heard of this disease and because of the path we went down, he now has knowledge of this disease and will be able to help others.

The information provided on the BHC website is a huge part of my being able to deal with this disease. Mainly the ME/CFS Crash Survival Guide. I believe that this part of the disease (crashing) is the worst part and having somebody that put all of this information together for us as a guide/ tool is priceless.

After finding the Bateman Horne Center online, I have learned so much about how to manage my energy and pace myself. I cannot imagine not having this resource that’s part of my life. It has allowed me to not just communicate with others but educate others about ME/CFS. I would say that at least 99% of the people and medical professionals that any of us talk to think that they can relate to this disease because they are also tired/cranky/have headaches etc. and don’t feel good. But that’s just not the case at all. We, the ones living with ME/CFS know that if we have the energy we will have to educate the people we are talking to as soon as we hear them say “yeah, I’m really tired too”, or a doctor that tells you “you just need to get a little more rest and exercise more often”.

It’s been approximately 14 months since my diagnosis and I really don’t have a good grasp on any of this yet, it’s just so frustrating that your life can change overnight. ME/CFS is humbling and has taught me to be very thankful for everything that I do have and have been able to do throughout my life. ME/CFS makes you realize just how precious life is.

The support groups provided by BHC are extremely important to me not just as a tool but provides an avenue for me to communicate with others that have been affected by this disease and the professionals that treat/help us. I have told everybody in my life just how much I look forward to the zoom meetings provided by the Bateman Horn Center twice a month. I look forward to the interaction with the staff and all of the other people that are living with this disease who speak out in each meeting. There is always something to learn/take away from these meetings that can help you navigate the road you have ahead of you. Everybody’s experience is different but everybody has something to offer that can help you sooner or later.

Steven M. Wirfs
Ripon, California

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