Julie’s Bio: The long story

Don't try this at home!

BUB

I was born in York, NE, the youngest of seven children.  My parents, Bill and Jean Desch, were probably not expecting me, but oh well.  Two of my older siblings, my sister Kathy and my brother, Tom had been diagnosed with cystic fibrosis prior to my birth, so I was immediately given the gold standard diagnostic test, a sweat chloride measurement.  Sure enough, I was number 3 of 7 to have the disease.  Since both my parents were obviously carriers (CF is an autosomal recessive disorder), the odds should have been 1:4.  I guess our family had a bit of bad luck.  When I was a baby, one of my sibs (I don’t know which one) couldn’t pronounce “baby,” and my name became “Bub.”

Growing up, my main health issues were gastrointestinal in nature.  I always had stomachaches…painful and embarrassing, as I was frequently late for school because I couldn’t get off the toilet in time.  I remember being made to take Cotazyme or Viokase (pancreatic enzymes), but they never seemed to work.  Of course, my dietary choices back then were pretty pitiful…The Golden Point (a greasy drive-in), Long John Silver’s, Kentucky Fried Chicken and King’s Food Host (another greasy, but sit down restaurant) were my mainstays.  Looking back, I think anyone––even fully pancreatic sufficient folks––would have had daily stomachaches if they ate what I did.

Fortunately, my lungs didn’t really give me much trouble growing up.  I did catch colds frequently, and when I did get sick, I would have to stay home from school for at least a week.  I was a nerd back then (I hear that I still am)…a very good student, but also very obsessed with getting good grades.  So, I would get my homework brought to me by a friend every day I missed school, and kept getting A’s.  I was a pretty shy and withdrawn kid, especially in elementary school, so I really didn’t mind staying home when I was sick.  I read voraciously, and enjoyed the alone time.

My older siblings did not share my luck regarding the effects of CF on their lungs.  They were frequently quite sick.  They had to sleep in “mist tents” (something I never had the pleasure to experience), and did routine chest PT several times a day.  I remember hiding and covering my ears so that I wouldn’t hear them cough.  It was very distressing to hear how hard and intense their coughing spells would be.  I was ashamed to be grossed out, but I really was…in addition to being very afraid they were going to die.

My parents did an amazing job just getting us all through those times, but it was very difficult for both of them.  When I was five, my mother had her first major depressive episode, and from that point on, she lived with severe chronic depression and anxiety.  My father divided his time between his business  (a family owned monument company) and taking care of my mother and us, so his hands were full.  As a result, I was really raised by my older siblings, especially the two with CF. My brother Tom used to pick me up from school at lunch and take me out to eat when my mom was too sick for me to go home.  My sister, Kathy, took care of me like I was her daughter.  She understood me in ways I didn’t understand myself.  The sister next to me in age, Mary, was my guardian…she made sure that nobody was going to hurt me…but she didn’t really like me tagging around with her and her friends.  So when Kathy and Tom went off to college, I raised myself.

If this sounds like a “poor me” story, it’s not.  From my current perspective, I see now that I developed at a very young age the trait that has kept me going strong all of these 51 years…I am resilient.  I get knocked down…but I get up again.  If I had not grown up with the family and circumstances I did, my life might not have worked out so well.

THE SHELL BREAKS

Finally, in junior high, I began to break out of my shell.  I started hanging out with a core group of friends that made me see that life didn’t have to be so serious.  I still got my good grades, but I began to have some fun.  I began to develop some self-esteem as I got into various team sports.  I began to date boys!

I can’t stress enough how my friends saved me from myself back then.  We hung out through high school, and even college together (in Nebraska of course).  And, we have stayed in touch through the years.  To this day, we get together every few years––gathering in Texas (of all places)–– for the annual (not really, but we call it that) Frieds’ Club.  Yes, I know it’s misspelled…it’s supposed to be.

I didn’t really talk about my CF much back then.  In fact, I learned that if I didn’t eat much, I wouldn’t have stomachaches!  Bad idea from a CF standpoint, but it really helped me socially to not have to deal with that issue.  Don’t try this at home.
I lead as normal a teenage life as I could, and I did a very good job convincing myself that CF was not an issue.

LOOKS LIKE IT’S THE UNIVERSITY OF NEBRASKA!

There was a rule in our family when it came to college.  Mom and Dad would pay only if you stayed within 500 miles of home.  Since I didn’t have much cash saved, I went to UNL.  For some reason, it was my freshman year in college when I became comfortable enough to actually tell people that I had this weird thing called cystic fibrosis.  I developed some really close friends in my sorority, and was very open with them.  It was still pretty easy for me, because I was very healthy, so it didn’t mean much.

It was in college that I became a true fitness fanatic.  I got into running so much, that when it was -50 wind chill (a standard winter day in Lincoln, NE), I would go to the “mushroom gardens” to run.  This was the fond name given to the stinky, dank indoor track located underneath the football stadium.  My friend Jody and I held an exercise class in the basement of our sorority at 6 am every morning!  Finally, as a senior, I started to get very serious about weight lifting, and have been since.

I met my husband-to-be as a junior, and we were married my senior year.  It was Scott who encouraged me to think about medical school.  I loved all of science and math, but was really into chemistry, especially biochemistry.  Initially, I thought I would get a PhD in biochemistry, and then teach and do research in cystic fibrosis.  Scott said, “Well, if you’re going into CF research, why not get an M.D?  The idea flourished, and I applied to several schools.

THE HARDEST CHOICE OF MY LIFE

Kathy was very sick.  In truth, she had been for years.  I can remember one time distinctly when she had to have a portion of a lung removed and we were told she wouldn’t likely live beyond another year.  But, several years later, she was still kicking! However, she was fading.  Right around the time I had to choose between medical schools, she was in the hospital again.  It was clear to all of us that she wasn’t going to live long.  There was no such thing as a lung transplant then.

I was fortunate to have the option of Harvard, Stanford, Michigan or Omaha for medical school.  My plan had cemented:  I would get my degree and go somewhere where CF research was big.  It would help if I went to a medical school where CF research was already big.  Stanford was that place.  It had an MD/PhD program, which seemed perfect for my plan.  Harvard was….Harvard.  Michigan was… cold.  And Omaha was… where Kathy was….

I went to her hospital room by myself, and told her how torn I was.  She was so great…she just said, “Julie, you have to go.”  There was no doubt in her voice or in her eyes.  I pledged to myself that day, and to her, that I would make a difference in the lives of people with CF. I didn’t know how…certainly, the reality of what has happened since was nowhere on my radar then.  On that day, I set out to be a scientist…not a pathologist, trainer, writer and coach…and certainly not a mother!

MEDICAL SCHOOL

Can you say culture shock?  Moving from Lincoln, NE to Palo Alto, CA was a trip on so many levels!  First, the monthly rent was 5 times higher than what we paid back home.  Second, I was surrounded by people very different from me––culturally, racially, you name it––for the first time in my life.  When I first met my classmates, I was completely intimidated.  These people were brilliant!  It seemed like they were all either Ivy leaguers or from Stanford.  Meanwhile, I filled the “white girl from the Midwest” quota.  Shy anyway, I felt like I was in way over my head.  Thank God, my then-husband was an extremely social creature, or I would have crawled in a hole and done nothing but study.

The first semester was a blur, largely because Kathy died about a month before classes actually started, and while I was physically there in Palo Alto with my 86 classmates for those first few months, psychologically I was a mess.  I went through the motions…met people, went to class and studied like a fiend while I was quietly having an existential crisis.  I felt horrible guilt, because although I made it back to NE in time to be with my sister while she died, I had missed most of the last three months of her life…probably the hardest ones.  I was grieving her death while I was experiencing another death––that of my lifelong defense mechanism––denial.  All the while, I was trying to fit in to a class of whiz kids, feeling like a complete “poser.”  Depression wielded its ugly face, and at the Christmas break, I became a dropout for the second time in my life (the first…Humpty Dumpty Preschool…but that’s another story).  I walked right into my mentor’s office and quit his lab, and then I walked into the Associate Dean’s office and quit school.  I had no intention of spending the rest of my short—I was certain–– life as a miserable medical student!

Fortunately, over break I realized that I was completely stressed out, and should not be making any major life decisions in that state.  I agreed to go back for one more quarter, and just see what happened.  I chose to focus only on classes, and not go back to the lab where I had been working.

What happened was that I fell in love with neuroanotomy, pathology, physiology and biochemistry.  A nerd is a nerd is a nerd, after all.  I allowed myself to do what I loved to do, learn about things that intrigued me, and my depression lifted.  I also discovered a different laboratory, the CF Research Lab, where my new mentor, Dr. Jeff Wine, allowed me to work on the subject near and dear to my heart, cystic fibrosis.  I was finally doing what I set out to do.  And, I ran.  I ran a lot…  Somehow, doing so allowed me to realize that I was still ok.  Death was not imminent.  I came out of the fog.

THIS DOCTOR THING IS KIND OF FUN

When I look back on med school now, I realize that it was a blast.  Other than passing tests, I had no significant responsibilities.  I loved to study, and it turned out that the whiz kids were really pretty nice, and that I wasn’t as out of my league as I had thought (I was simply boring). I was completely fascinated by pathology¬¬––the study of what goes wrong with the body.  Clearly, my major coping mechanism had changed dramatically from denial to intellectualization.  I wanted to understand everything.  It was a great way of getting away from the emotions resulting from having a fatal illness. Instead, I focused all of my energy toward understanding the problem.

I continued in the CF lab, and when it came time to think about specialties, pathology was a slam-dunk.  My plan at this time was to become an “expert” in lung pathology (of course).  The only part of my training I did not enjoy was the autopsy training.  There is just no way to make doing autopsies pleasant.  Yes, it could be interesting.  Pleasant?  No way.

My personal tipping point away from lung pathology and, for awhile, even from CF entirely, came the day I had to perform an autopsy on a man I knew who was roughly my age…a CF patient…a very visible guy in the CF community…who lay very dead on the gurney in front of me.  I was “up” (residents took turns doing the posts that were requested).  The attending told me cautiously that this could be tough for me, and it would be ok to give it to someone else.  But, there was no way I was going to do that.  That would mean I was weak…

I still remember it, and I remember the nightmares I had for months afterwards, where I would dream of doing my own autopsy.  That case changed my life.  It became clear to me then, that I was not ready to “do” CF as a career.  In fact, I may never be.

MY (SHORT) CAREER PRACTICING MEDICINE

I did specialize, not in lung pathology, but in skin pathology.  I worked at a ‘real’ job doing general surgical pathology and specializing in skin pathology in San Francisco for five years.  The work was great.  The stress was killer.  I started to get sick more frequently.  I needed IV antibiotics for the first time in my life.

After much soul searching, I decided to stop working when our first child was born.  I was to focus on my health, and focus on mothering.

Did I stop too soon?  I ask myself that now and then, and have determined that the reason I am still here and still so healthy is that by not working, I have been able to focus on doing what I need to do, every day, to keep my CF in check.  So, while it may seem to some that I could have worked longer, I did what I knew was right.  The result is that I have been able to spend some quality years with my sons when they were young, and when I was still relatively healthy.

I’M BIG, I’M STRONG, I’M MOMMY!

I’ll never forget the day my oldest son, around two years old at the time, looked at me after I had expressed reservations about doing something and said, “You’re big!  You’re strong!  You’re Mommy!”  There is nothing like a cheerleader.  Seriously, motherhood has been the best experience of my life.  Many worried about whether it was a good idea or not, but in my mind, adopting my kids was the best decision I have ever made.  In a very real sense, I feel that I must continue being big and strong, because I am Mommy!  These two little rugrats (not so little now) depend on me.  They motivate me.  Now when I run, I know why I am doing it…and when I get lazy I remember, “Oh yeah…I need to be there at that college graduation!”  Then off I go.

Parenting has definitely not been easy, though.  When the oldest was three and the youngest was 18 months old, I found myself unexpectedly a single mother.  Not exactly what I had signed up for!  But such is life.  What I learned from that experience was that stress does indeed affect my health.  That winter my health was the worst of my life up until that point.  I lost weight, seemed to always have kiddie-krud, slept very little, and required two rounds of IV antibiotics.  While it certainly wasn’t the first time I felt severe stress, it was the first time the stress made me sick, literally.  It was a good lesson to learn…one I try to emphasize with my clients now.  Stress can be an ugly monster, unless dealt with effectively.

MOMMY BECOMES COACH

So how does a former anatomic pathologist, whose sole contact with her “patient” is through a microscopic lens, become a wellness coach, where effective interpersonal relationship sets the context for her client’s success?

When my youngest entered school, and I remembered I had a promise to keep, my next step became clear to me.  I knew how important my lifelong passion for fitness had been in keeping me alive and relatively well up until this point.  There was no doubt in my mind that although my genotype might have suggested that I should be six feet under at this ripe old age of 45, I was thriving.  My lung function had seemed to plateau after my retirement, largely because I worked at staying healthy every day.  I had been an avid exerciser all of my life, and if anything, I became even more dedicated to fitness by becoming a certified personal trainer simply because I wanted to learn more about fitness.  I became regimented about my treatments.  I started doing Tobi.  I got the VEST, and used it.  When hypertonic saline proved of value, I started it twice a day.  When NAC started to show promise, I began to take it three times a day.  When my stress level started to get out of hand the next time, I began a meditation practice.  When I lost five pounds during the winters, I followed a weight-training regimen, and gained ten.  Simply put, I learned from experience what works.  It turns out that what works is work, starting with daily exercise.

This is how my purpose became clear to me.  I decided that my next job in life (other than motherhood, which is ongoing), was to write, to speak, and to coach others with CF and other chronic illnesses how to stay on top of their game; how to achieve their own optimal wellness, despite their illness.  The path seemed to open in front of me.  Wellness coaching as a fledgling offshoot of life coaching at this point, but as soon as I read about what it was, I knew it was what I needed to become.  I became certified by Wellcoaches Corporation, the best in the business, and proceeded to form a non-profit entity, New Day Wellness, through which I could provide coaching at low cost, and minimal overhead.  I began writing a Wellness column for the CF Roundtable, a quarterly publication for USACFA (United States Adult Cystic Fibrosis Association).

Then, the idea of blogging hit me like a storm.  Here is where I can spread my message.  Here is hopefully where I can reach those who might want coaching.

This, in 3223 words or less, is how Sick and Happy was born.

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