The Tate story.

Paul and I went to a benefit concert for my friend Alexis Tate.  Both Lex and her husband Dan have been friends of mine for quite some time. We all met through the Utah State piano program.  Dan gave beautiful opening remarks before the concert began.  Here is the Tate story.

The next most difficult thing to suffering relentless pain is the helplessness of watching such pain tear into the person you most love.  Over the past two and a half years I have watched Alexis go from whipping out a portrait in two hours to not being able to write a grocery list without afterward having to lie down for several hours.  I’ve watched her go from learning a Chopin etude in a weekend to not being able to play the piano for 20 seconds without it sending her into such pain that she is up all night. She was once a top student-- her piano professor told her that she was one of the most talented students he had ever taught, her German professor wanted her to be a German major, her English professor wanted her to be an English major, and her art history teacher wanted her to become an art critic.  She had to leave school a year and a half ago, no longer able to write or sit through her classes.  She now spends most of her day in bed.  She usually needs to spend 18-20 hours lying down each day in order to feel well enough to be up and about for the remainder of the day.  Her pain has spread from her hands into her arms, neck, face, head, and back, and it continues to spread.  The only thing that helps to keep it at bay is lying down.  Her big event each day is going on a walk or occasionally accompanying me to the grocery store.

Everyday I wish that I could give Alexis my own health.  She has more talent in her left thumb than I will ever have.  Alexis is the most creative person I know.  She’s also the most tactile.  Before her illness set in there was never a time when she was not creating something with her hands.  I can’t imagine a person more allergic to resting most of the day.  This illness has therefore not only caused her tremendous physical pain but also terrible grief.  And because she is an extraordinarily exuberant person and doesn’t easily slip into self-pity, she has also been very unseen and misunderstood.  Until you see her drop a dish, fail at attempting to open a tube of toothpaste, or go months with only an hour or two of sleep each night due to pain, it is hard to to see from the outside that anything is wrong.  Compound that with the drudgery of well over a hundred and fifty visits to neurologists, rheumatologists, neuromuscular specialists, pain specialists, physicians, acupuncturists, chiropractors, physical therapists, and on and on, most of which have proven unhelpful, and you begin to get a glimpse of how difficult this has been for her. 

After two and a half years, Alexis has been diagnosed with Lyme disease. When Alexis was first diagnosed a month ago my only response was: “Finally!!!  Finally we won’t be shooting in the dark!”  And everything added up.  To begin with, Alexis vividly remembers getting what we now know to be Lyme’s characteristic “bull’s eye rash” not once but twice: the first time here in Logan in the early fall of 2008, shortly before her hands started hurting; and then again in the mountains of Northern California in the summer of 2009, shortly before her pain began spreading from her hands into the rest of her upper body.  Secondly, Alexis has over 30 symptoms of Lyme, not only degenerative neuropathic pain, but heart irregularities, joint pain, Reflex sympathetic dystrophy, insomnia, thyroid disease, fatigue, muscle pain, and on and on.  Finally, Alexis’ blood work indicates Lyme.

But honestly as the month has worn on I have had increasingly schizophrenic thoughts about the diagnosis.  The more I research Lyme, the more I realize how problematic of a diagnosis this is.  Lyme is a ghost of a disease.  It is so difficult to pin down that there is more disagreement about Lyme within the medical community than probably any other disease.  It is possible to get false positives or negatives on blood tests, and Lyme can mimic over 350 other conditions, from MS to Parkinson’s to Chronic Fatigue to Lupus to ALS.  Alexis has been misdiagnosed again and again with various auto-immune diseases and degenerative diseases that we’ve later had to rule out as her symptoms have worsened in unexpected ways and new symptoms have manifested.  Is it possible that this diagnosis will take the same course?  The maddening truth is that I don’t know.  And neither do doctors seem to know.  After seeing over 40 different medical professionals, we’ve learned to take medical opinion with a five pound bag of salt.  This is what I do know: that Alexis is worsening at an accelerating rate every day; that if her current doctor is right and Lyme is the cause of all of this, then she isn’t responding as expected to treatment; and that if this disease continues on its current course, then within a few years she will at best be completely bed bound, possibly for the rest of her life.      

I've had a bit of a breakdown these past few days and realized that if Alexis’ current treatment doesn’t begin to shift something in the next month or two, then I have to do whatever it takes to get Alexis to the Mayo Clinic, something I should have done long ago.  We have already spent over $20,000 on medical expenses, and whatever road lies ahead, the costs will be very steep.  If she continues on with her current treatment, we will be spending six to seven hundred dollars every week for many months.  If the doctors at Mayo point us in a better direction, we will take things from there.  I understand that these are very difficult times for many of us.  Any support you can give is very deeply appreciated.

The most vivid memory I have of Alexis is watching her do a river dance for me in the piano lobby foyer in between teaching YC students.  She really is one of the most high energy people I have known.  Watching her digress so rapidly has been incredibly perplexing.  But because I knew her before she got sick, it was obvious to me that she was in severe pain.  

I need to appreciate my ability to get out of bed and twist off my cap of tooth paste.  I need to appreciate my ability to take care of Sherpa, teach my students every day, and sweep my kitchen floor.  I have to appreciate that my stresses are over beginning the masters program or not being able to figure out what to cook for dinner.  Thank you, Dan and Alexis, for helping me to appreciate.