Tag Archives: job

A science project with a missing piece. Where are my shoes?

My sister-in-law Kayla, Sister Athletic Trainer, is an absolute genius at puzzles.

I don’t mean that Kayla likes puzzles, although I suspect she does. I mean that she is literally a puzzle genius. She can walk by a table holding a 12,000 piece puzzle entitled “sky on a cloudy day” and find at least 6 pairs of matching pieces before I can even figure out which way to orient the picture on the box.

I am not being facetious.

Maybe Kayla has just had a lot of practice. She has spent three of our last 11 week long cottage vacations doing puzzles as she recovered from major knee surgery (as good as she is at puzzles, she’s not exactly awesome at keeping her own ligaments from tearing). Maybe it’s a gift from God or something. (Drop Dead Gorgeous reference… anyone?) I don’t know. But she’s real good.

At the moment, I feel like I’m staring at a complicated and beautiful puzzle and all that I have left is one particularly challenging bush or patch of sky or something. Once I get a couple pieces in place, the whole dang thing is going to fall together, but I can’t figure out where to start and I am le frustrated! (The “le” is intentional– I’m pretending that the word frustrated is French.)

Here’s what’s up:

In my job (like my real J-O-B) I work as a scientific research writer, which basically means that I help clinicians and scientists to write grants and manuscripts (and yes, sometimes even eulogies and other speeches and such) about whatever scientific endeavor they favor at the moment. I’ve worked on tons of different things. It’s awesome, really, because as much as I dig STDs, 6 years of nothing but gonorrhea and chlamydia got to be a little bit much. I’m not that into it. In my current job, I get to learn about new and interesting things all the time– oncology, genetics, bioinformatics, cerebral palsy, Alzheimer’s disease, chronic kidney disease, pancreas divisum, diabetes, neuroprostheses, patient navigation, and the list goes on. It’s awesome… like being in school minus the grades plus a real salary. Life is good.

Because I really love science and because nerdiness is my life, not just my job, I get quite invested in the things I do. And it’s all that much easier to get sucked in when I work with really passionate investigators… and so many of these investigators, just wow. These clinicians see a problem in their practice and come to us to either study the problem or solve the problem, and it’s inspiring. I have three projects swirling around in the back of my mind all the time right now. And there’s something about them that’s similar, they are related, they are somehow the answer to one another’s problems, but I can’t figure it out. That’s my puzzle. And it’s becoming my obsession. How can I make these things work together for the good of patients? I won’t know until I can fill in the sky!

Not long ago, I worked with a pediatric nephrologist and learned about Bardet-Biedl syndrome (BBS)– a rare genetic disorder that results in cilia malfunction and many consequent symptoms affecting nearly every organ system in the body. Because the disease is so rare, finding care for these kids, especially coordinated care with specialists who truly understand the disease, has always been a major problem for BBS families. Recognizing that challenge, Dr. Haws started The Treatment Center for BBS at the Marshfield Clinic to provide coordinated, comprehensive care for patients around the country… and even around the world. It is the only BBS clinic in North America and has already served 16 individuals from 14 different families in its 3 clinics to date. I helped Dr. Haws capture survey results from providers and families that participated in the clinics and the comments from the grateful families were overwhelming. I was particularly struck by the woman who blogs here at 71toes.com (polydactyly is a common symptom of BBS and her family of 7 was no exception– how clever!) as she documented her family’s participation in the clinic. So cool!

Coordinated care for kids with special medical needs… it’s a thing that’s done well for many kids at Marshfield Clinic. But what about kids in the foster care system?

I have also spent a lot of time working closely with the medical director of the Marshfield Child Advocacy Center. She is totally committed to creating a Foster Care Medical Home (FCMH) for kids in the foster care system in Central Wisconsin. Medical homes are a really effective and interesting way to make sure that healthcare needs are met in a timely, consistent, and patient-centered manner and it’s something Marshfield Clinic has really embraced in recent years resulting in huge cost savings as well as huge reductions in the need for emergency care and hospital readmissions. We don’t have one for kids in the foster care system, though, and they likely really need it. At the moment, I’m working with Dr. Iniguez to complete an American Academy of Pediatrics planning grant for the FCMH and we just completed our third of four focus groups with foster care providers and past participants. Holy… wow! These families. I mean, I was into it before, I thought it was a great idea… now? I’m smitten! I want this to succeed, to help these families, so very, very badly! I am committed. But how? Where do we find the funding? Whose going to coordinate the care? Can it be like the BBS clinic?

And finally, behavioral health. I told you about my big fat $1.5 million HRSA grant? The one that kept me from blogging for over a week, right? What I didn’t tell you was this: due to a “misinterpretation” of the guidelines, the grant was triaged without being reviewed. WTF, right? I know, I’m furious, but trying to be cool about it… because the program is just way too important to let die now. Yes, it was a big mistake. No, I was not at fault (thank goodness, right?!). But dang, do I ever feel responsible… disappointed… dejected even. It was unpleasant news for everyone involved. And now we’re looking for another way. Another way to bring behavioral health services to patients in the primary care setting who desperately need them, but cannot get them due to the provider shortages we face in our area. How does this fit in? Well, you know who else desperately needs behavioral health services but can’t get them? Kids in the foster care system. These kids benefit tremendously from the notion of trauma-informed care… care that keeps in mind, always, that these kids have been through a really stressful, really awful situation and that those traumas subconsciously inform their every single action.

So, in conclusion, I feel like there’s something there… an invisible thread weaving its way through these projects and constantly tickling the back of my mind. It alerts me to the fact that there’s something in common, some answer that I’m overlooking, some person who needs to be contacted or informed or something. I just can’t find what that something is at the moment. I am missing a vital piece of the puzzle– I’ve got to find my special purpose! (The Jerk, yes?)


Two winters ago, my husband’s grandfather set up a card table in the living room and worked on a puzzle all winter to keep himself occupied while it was so cold. He did a bigillion piece puzzle or something and it had a lot of sky in it. Lots and lots of plain, blue pieces spread out on the table. And when he got to the very end? One was missing.

There was one piece of sky that was blank.

And it stayed blank for a while.

Until one day, Ed, my grandfather-in-law, bent down to put his shoe on and found a puzzle piece in it. It was in his shoe! Right there! All along! He snapped it in and the puzzle was complete.

I’ll find the piece. I’ll make the connection. We’ll make the foster kids a medical home and extend behavioral services to the population that needs it.

Where are my shoes?

Better yet… where is my sister-in-law???

Silver Lining: No Mice

Have you ever gone to grad school?  If not, the most important thing to know about it is this: all you want, from pretty much the second you start, is to be done.  And the closer you get to the end, the further away it seems.  You spend an inordinate amount of time in the middle of the proverbial tunnel, unable to see the light at the end, and too far in to see the light at the beginning.  I can’t even tell you how many “last” experiments I had.  So, so, so many “last” experiments.  So, so, so many mice.  I have absolutely no desire to ever see, hear, smell, or touch another mouse so long as I live.  (Or taste.  I don’t want to taste one either, but that’s not something I ever tried anyway.  Figured I ought to throw it in for the sake of five-senses-completeness.)  However, when I was nearing the end and I was gearing up for another one of my “last” experiments, all I wanted were those little ladies to come in so that I could get started… and subsequently get finished, and fast!!

Right before Thanksgiving of 2011, I was expecting a big old shipment of genetically modified mice and I was pumped.  Ready to go, even though it meant working through the holiday.  No biggie.  My then boyfriend, now husband, was already safe and sound in Wisconsin, ready to watch some football without me, and that was fine.  So, day before Thanksgiving I find out: NO. MICE.  None.  Not-a-one.  I flipped… my… lid…  I immediately got on the phone to the hubs and, no preface, just said, “Fly me to Wisconsin.  Immediately.”  A few hours later, I was at Reagan Airport and a few hours after that I was in Wisconsin, ready to eat turkey and pie and mourn the loss of the mice I never even had in addition to the loss of my impending graduation.  Woe was me.  I was practically drowning in anger and self-pity.  It was not a beautiful thing.

While in Wisconsin, one is customarily expected to drink.  Like a fish.  And upon a previous trip to Green Bay (you know, the holy land), we discovered Captain’s Walk winery and the best white wine I have ever had the pleasure of meeting.  (Disclaimer: I am definitely not a wine connoisseur and have been known to enjoy what those who are would call swill.  But it suits my taste, and that’s what really matters when you’re the one drinking it, right?)  So as long as we were in the Sconi-land, we thought we’d head on down to the local grocery store (Festival Foods—best name ever, it’s a party every time I shop!) to pick up a bottle (or two, or whatever… it’s really good).

So, the day after Thanksgiving, my in-laws-to-be took us out for a traditional Friday fish fry at the Belvedere Supper Club (my favorite!!), to Festival Foods for wine to smuggle back to Maryland, and then we stopped at the Marshfield Rotary Winter Wonderland to see the Christmas lights (another favorite of mine!).  On the way, we passed the Marshfield Clinic and I thought to myself, “Hey, self, perhaps we ought to check out the Marshfield Clinic online and see what kinds of employment opportunities there might be for a girl like me someday.  Someone who knows a lot about mice and lot about STDs and knows her way around science pretty well.”  Turns out, they were looking for a Scientific Research Writer, which I didn’t even know was a job that existed and I applied.  I interviewed on Valentine’s day 2012 and they must have been hit by one of Cupid’s arrows because they offered me a job and I started in April.

So let’s recap, shall we.  No mice.  Wisconsin.  Graduation (finally).  J-o-b job.  Silver lining.

All that rage, anger, the self-pity, and the anxiety over a situation that was quite literally out of my control.  Worth it?  Absolutely not.  Necessary?  Maybe.  It’s not realistic to expect that the idea of a future silver lining or a blessing in disguise related to a crappy situation negates the crappiness of the present moment.  But cumulatively, every struggle has a purpose and for me, life is better when I spend less time raging about the struggle and more time searching for the silver linings in the clouds.