The oft heard quote by Marjorie Hinkley, “Life is what happens while we’re making other plans.”, has become much more meaningful to me this past year. I had grand plans laid in a neat little framework inside my mind, but factors infuriatingly beyond my control have laid waste to the entire person that I called me, and left me with someone who I am still trying to get to know.

I have been working as a clinical laboratory scientist at the Mayo Clinic in Rochester, Minnesota since summer of 2008 soon after my graduation from BYU. Alicia and I moved out here away from all family and bought a nice little house to spend the next chapter of our lives in. Alicia was pregnant with our second, and her work was going well. I was planning on taking on a master’s program I recently got accepted to in public health and epidemiology through the University of London. I have also been serving as the Young Men’s president in our tiny little branch out here in the corn fields. Things were going just the way we had planned and expected them to. Until my body decided it was going to take control of my entire universe.

In mid January, I got a case of strep throat that was going around. The day I went in to get an antibiotic I noticed a stabbing pain in my kidneys. Odd, I thought, that sort of thing shouldn’t happen until two or three weeks after a strep infection. I told the doc and left it at that. After faithfully taking my Amoxicillin for ten days my strep throat was gone, but I still felt a little weak and tired, as expected after a pathogenic assault on the immune system. With not much to worry about but getting back to the normal routine, I continued to push myself as usual. The difference was that I never really felt better. It was as if my body’s AC adapter had been knocked out of the electrical outlet by the infection and had never been plugged back in. My batteries were slowly being drained and not recharging as they normally had in my past.

At first I thought this must be the effects of Minnesota winters, but as weeks turned to months and the weather warmed, my list of symptoms grew to the size of the piles of snow in my front yard, which in this region was about as tall as I am. I was having bad headaches, aching painful muscles and joints, sore throat, swollen lymph nodes, loss of appetite, weight loss, fever, shortness of breath, chest pain, tingling and numbness in my extremities, but worst of all was just the fatigue. This was like nothing I’d ever experienced before. I felt like walking up the stairs was like climbing a mountain and walking out to get the mail was like running a marathon. I couldn’t even take a shower and get dressed without having to take a rest on my back. I was worried that something was very wrong with me.

At this point I consulted the medical professionals. Remember also that I work at the Mayo Clinic, arguably the world’s leading hospital for medical mysteries. The first doctor I saw told me I was a healthy 25-year-old and had classic heartburn. He sent me on my way armed with a prescription for over the counter Prilosec and I’m sure continued on to the next patient thinking that he had solved all my problems. I didn’t even bother with that, but immediately set up another appointment with another doctor. This time I got the response that I was probably just having some seasonal depression and needed to go on an antidepressant. HELLO!! I’m no psychologist, but I know enough to know that depression does not cause a fever, swollen lymph nodes, and many of my other symptoms. He was concerned enough to order some basic blood work though. All the tests ordered came back normal of course, so I could rest easy that I didn’t have leukemia or hepatitis or something like that, but I still didn’t know what was wrong with me. After more weeks of being ill, and more weeks of not knowing why, I finally had to stop going in to work. I just couldn’t do it anymore. I could barely do anything but get out of bed, roll out the door and sit at my computer for my shift and then return directly to my bed. I felt like I was a dead man walking, but barely able to do even that. I eventually picked up a cane at my doctor’s request. I was beginning to feel like a 90 year old trapped in a 25 year old body.

Another round of blood work revealed nothing, and another doctor told me in not so simple of terms that “It was all in [my] head!” I requested to see a psychologist to put an end to this conjecturing that I was having such varied and inexplicable symptoms due to my own faulty perception of the world around me. I knew that these symptoms were not caused by whatever these experts claim to be the cause of psychosomatic symptoms. After a thorough evaluation by the head shrink, nothing was found to even begin to explain my symptoms. Although I later found that he had given me the black label diagnoses of panic disorder and agoraphobia for reasons I have yet to comprehend. I continued to spiral downward with no thanks to the medical community. The psychologist put me on a medication that was supposed to treat a condition that I didn’t have, but I had to comply at this point or be seen as a difficult and uncooperative patient. I took the meds and soon began to have noticeably severe tremors and also developed a much more severe degree of muscle weakness, vertigo, and loss of coordination. The combination of these symptoms led me to walk like a pregnant woman on an ice rink. I was feeling more and more disabled and more and more like the medical community was failing me. I was seen once more by another doctor who suggested a visit with neurology, and ordered up an MRI of my entire CNS. At this point I was hoping and praying that the MRI would reveal something like multiple sclerosis or babesiosis. Alicia and I had both been doing tons of research on odd and rare diseases. Based on my own personal understanding of my body and my strange symptoms, I was able to tentatively rule out many diseases, but the one that I couldn’t convince myself was not possible was chronic fatigue syndrome (CFS). Someone had suggested this to me before, but I had never heard of it and assumed that CFS was exactly what it sounds like, and there was no way I had been so severely knocked out by the fake disease that lazy people claim to have. Well, as I read through countless medical journals about diseases matching my symptomology I became more and more convinced that CFS was real, and more importantly, that I had it. I read the list of symptoms at CFIDS.org and matched it up to my own list of symptoms and if I didn’t know better you’d think that I wrote the CFIDS list myself.

After going through round after round of test including Lyme disease two times, mono, Eppstein bar virus, thyroid, neurological examinations, hormone levels, and many more, I appear to have nothing medically wrong with me… or at least that is currently detectable with our knowledge. I have now piled up a stack of medical statements that easily total over $60,000. Good thing I work for the Mayo Clinic and they take care of their employees.

I have now been sick for roughly nine months, and I have yet to figure out my new body. I feel like I have an invisible line that changes position every day, and if I cross the line even just a little bit by doing too much physical or mental activity then I get kicked in the face a day or two later. They call that post exertional malaise. I won’t go into too many details about life with CFS here, but I will direct any interested reader to the CFIDS.org website, or the CDC.gov website to learn how awful this monster is. I often tell people that I would much rather have a terminal illness than this and they look at me like I’m crazy. I really feel that way most of the time. You can’t truly understand that unless you have lived with CFS before. I would not wish it upon my worst enemy. I am currently unable to work, I can barely walk, I can’t sit upright for very long, I am hypersensitive to all stimuli including temperature, light, noise, taste, smell, and touch. I don’t sleep well, and I am in constant pain. I have lost my identity as an individual and am still trying to figure this new me out, but hope that I get the old me back soon. I have a good attitude about the situation despite the tone of this article. I am just trying to portray what I am dealing with honestly and let others know what it’s like. I don’t need people to feel sorry for me, but I do want people to understand what I am dealing with and be supportive and aware of my limitations.

I must also mention that the one person who has been able to pretty much entirely understand me is my sweet wife Alicia. She has been so patient and understanding of my situation. She takes care of all my needs at the expense of her own. I couldn’t ask for a better companion. She has even been studying to take the LSAT in preparation for the long road that may be ahead for us. I don’t know what I would do without her.