There comes a time in every person’s life when they adopt what they come to believe about themselves. At some point in my childhood, I had been told enough that I was the fat kid that I adopted the narrative. But this story is not about childhood trauma or the dangers of being teased. It is true that at some point, I decided I was the fat kid. But if the story had remained there, I would not be telling it, and you might never have any interest in reading it.
First, I was diagnosed with diabetes. In 1973, I attended the Philmont Boy Scout experience in New Mexico. It was amazing. For 10 days, I backpacked about 80 miles over and around mountains. Carrying at times a 60-pound pack, I felt I had grown up a great deal. I loved it so much that I wanted to return the following year in 1974 for two experiences. I intended to backpack for around 25 days and total about 150 miles. I knew it would be tough. So, when I got back in 1973, I started training immediately.
I also started feeling something else. For the first time in my life, I began to have an aching back. I had good reason. My back started hurting just as I was increasing the load in my training pack. At one point, I was carrying around 80 pounds of bricks and other debris to mimic a full pack on the trail. I treated my back with ice and lying flat on a wood floor.
I was no longer the fat kid. I was losing weight, and my muscles were getting tighter. It did not matter what I ate; the pounds would fall off. It made sense. I was 16, was very active at this point, and of course, the testosterone was raging. I was growing into a man. Except more was going on.
In June 1974, I was diagnosed with type 1 diabetes. By the time I was diagnosed, I had lost around 25 pounds, and I was exhausted. (As a side note, I was on vacation with my family at Walt Disney World at the time. No offense to Disney, but it proves that Disney World is not always the happiest place on Earth.) I was released from the hospital on my 17th birthday. Once I started insulin, I almost instantly gained 20 pounds back. I also got to complete my 25-day adventure that summer.
In my second year at Philmont, my back ached with terrible pain. I lay down each night on the ground inside my sleeping bag and felt some relief. Each morning I awoke stiff, and I took several minutes to stretch and bend. Each day was difficult, and it got worse as I went on. But I made it through. I carried around my entire life in a backpack with a frame and figured an aching back made sense.
I also gained weight over that summer. The reason I gained weight so fast was simple. It was insulin. Insulin is a hormone, and its purpose is to metabolize and regulate glucose. Without insulin, glucose is not metabolized, and cells in the body are starved for energy. In my case, my body had been starved at the very same time it was growing. It was like a two-part punch. My body was demanding more glucose during a time when I could not process glucose. In June of 1974, I weighed 185 pounds, and by the time I graduated from high school in May 1975, I weighed 212 pounds.
It is essential to stop here for a minute and explain that type 1 diabetes is an autoimmune disease. In my case, diabetes at age 17 offered a preview of the immune system dysregulation I would experience later on due to ankylosing spondylitis (AS).
As I got older, I continued to gain weight. When I finished college, I was around 225 pounds. I thought of myself as slightly overweight, but not so much so that I couldn’t stabilize if I made an effort. I might have been able to stabilize it, but I did not.
Instead, I began my career in a job that required me to sit most of the day. I started to gain weight in large chunks. I did not exercise, so my blood sugar started to rise. The more it rose, the more insulin I took, and the more weight I gained. If it sounds like a terrible cycle, that’s because it was. As I gained weight, my joints ached even more. As early as 1985, I could feel once again that awful pain in my back. I attributed it to weight gain, and to some extent, it must have been.
Finally, in 2000, I reached out to my endocrinologist about the pain I was experiencing. He referred me to a rheumatologist, who diagnosed me with rheumatoid arthritis. I was relieved. Finally, I had an answer for the awful joint and back pain that was making my life so difficult. I started taking Remicade and felt almost instant relief.
By the time I was 40, I weighed 325 pounds. I learned that I needed heart surgery to correct an AV fistula (an abnormal connection between an artery and a vein). It was a congenital anomaly I had since birth, but my weight likely exacerbated it. The larger I got, the harder my heart was working, and the more this minor issue became a big deal.
The doctor who did the surgery was reluctant because of my weight. He said, “Look, you are beyond what I would ever operate on. I have upper limits for heart surgery. I will agree to do it, but if you show up here weighing more than you do now, I will not.” I made it under the surgeon’s weight limit, and had the surgery.
In 2008, I was forced out of my job. I won’t elaborate but suffice it to say that it was a good decision by my employer. By 2007, Rituxan was no longer helping me as much as I needed, and the new medications my doctors prescribed were not working at all. In rapid succession, I tried and failed four more biologic medications between 2008 and 2013.
I also returned to college. See, I was no longer going to work, so that’s what I did to feel productive and like I still mattered. Heck yes, let’s get a doctorate. I love going to school and everything about it. It took five years, but I enjoyed every minute of the work, interactions, and learning.
However, by the time I graduated, I weighed 370 pounds. The truth was that even walking out to get the mail was drudgery. I worried that I might not make it up the little hill of my driveway. When my surgeon replaced my hip in 2013, he ended my penchant for bike riding. He said that if I wanted to ride a bicycle, I would need to ride a three-wheel adult tricycle. If you have ever ridden a three-wheel contraption, you know it’s nothing like a bicycle. It turns unevenly, you can’t go fast, and getting up a hill is less than fun. I was not fond of it.
In early 2014 I finished my dissertation and got ready for my annual visit with my cardiologist. I knew what I would hear. “Lose weight” was our constant topic of discussion. I could almost say it before she started. But in addition to her talk about losing weight, I had a concern. It seemed I could barely breathe even with minor exertion, and worse still, I could feel the thoracic bone in my chest shift and pop when I moved. It was uncomfortable. She referred me to a rather abrupt and unkind pulmonologist for a review.
It turned out I had a broken sternum, and I was sent back to the thoracic surgeon. My return visit was not great. He confirmed that yes, my thoracic bone had broken. All the glue and wires he used to patch it back together in 2006 were no longer holding. Then he put me on the spot. He said he could not repair my chest unless I lost at least 100 pounds.
I felt like I had just been told to climb Mt. Everest. At first, I got angry. Incredibly angry. Did he not understand the pain I was feeling? On reflection, I’m sure that he did. Fortunately, in the next few days, I had a regularly scheduled appointment with my endocrinologist. I discussed various options with him, including bariatric surgery, and he said his office offered a highly restricted food plan under the control of an endocrinologist.
My goal was to lose at least 100 pounds and to do it as quickly as possible. I gave myself one year, but I wanted it to be sooner. My diet consisted of either a solid energy bar or some difficult-to-drink shakes. My total calorie consumption was no more than 1,200 calories per day.
I started to exercise more, too. I began to ride my three-wheel adult tricycle (something my hip surgeon insisted on) more often. I worked hard to keep to my diet.
After 10 months, I returned to my thoracic surgeon’s office, having lost 90 pounds. He agreed to do the surgery. As I was recovering from the thoracic surgery, I was alarmed to find that I had gained 15 pounds. I had come so far, and I did not want to give up my progress. That was when I began Weight Watchers (now WW). Since starting in 2015, I have lost an additional 70 pounds. It has been a long, arduous road—with no straight lines.
This is where I must stop the story again to explain something. I have terrific support at home. I would never have been able to do this alone. My wife (we have been married for 44 years) also joined WW, and we do it together. Sheryl regained her lifetime WW membership status and has kept it. She is a great inspiration for me. But inspiration or not, I would not have lost a single pound without her support.
In 2015, one year after the thoracic surgery, I was diagnosed with AS. My back had always hurt, but the pain in my surgical hip had grown so intense that I could barely tolerate it. I went to see my orthopedic surgeon. “No, it’s not your hip,” he said. “It’s your spine.” That year I had a lumbar laminectomy, and I started to feel a little better. During that surgery, the doctor saw the ravages of AS, and thus I gained my third chronic disease diagnosis.
In 2020, I had spinal surgery to correct severe kyphosis. I am still in recovery from that surgery. Looking back, I can remember my mother telling me to stand up straight as a teenager. By the time I had the kyphosis surgery, I was leaning forward so far that I was in danger of falling with every step. No doubt, the early signs of AS were present in 1973 as I was walking around with those bricks in my backpack. But who knew?
Today people often tell me that I look great. I agree. But there are two things I know. First, it has taken six years to lose as much weight as I have, and second, I will constantly be losing weight, throughout my life. I doubt there will ever be an end, or a “good enough.” After all, no matter how much I lose, I will always be that fat kid.
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