Tag Archives: behavioral health

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???

My grant! It was ROUND!

Imagine for a moment that the world really had been flat when Columbus decided to sail around it. He’d have literally fallen off the face of the Earth.

His trip took a long time and I can’t imagine that cell service reached that far meaning that contact with home was non-existent. As such, people probably thought that he did fall off the face of the Earth.

Last Thursday, I said yes to a real big grant with a very short timeline.

And as you may have noticed, I sailed my ship right off the face of the Earth.

Or so you thought!

But like the world, my grant was round, and here I am! Back among the living! (Just a little tired…)

Sigh of relief though. That was a doozy! The grant still isn’t technically out the door and I’ve spent most of the day today making minor tweaks and changes and edits and such, but for the most part, it’s ready to go. Monday is the official deadline, and on Monday, “send” shall be clicked. Huzzah!

In the meantime, I had a total It’s a Wonderful Life moment. My house was a MESS! I almost took before and after cleaning pictures last night… but it was simply too horrifying to even be funny. We had crossed the line. (See! I matter! I really do!)

My gmail inbox has 55 unread emails– and that’s after deleting the junk! (Huge apologies if I’ve been ignoring you!)

Insane Inbox

I have an episode of Downton Abbey on the DVR (what that whaaaaat?!).

(It's the Masterpiece Classic one. Permission to judge.)
(It’s the Masterpiece Classic one. Permission to judge.)

My nail polish is flaking off to a pathetic point and I haven’t even had the time to pick at it. (But I love picking at it!!)

Nail Polish

And I haven’t posted on Under the Tapestry in over a week!!!

No Posts

Oy. None of this is ok. Thank goodness for this upcoming weekend!

But there are some reasons why the insane hours and the seriously mentally taxing work (and not just mentally! I hurt my finger on a staple! writing can be physically taxing too!) was completely worth it… there were some silver linings, if you will.

First, I learned A LOT. About A LOT.

Unfamiliar funding mechanism, unfamiliar topic, unfamiliar PI. But not anymore.

I could write another HRSA grant, and I could do it well. (Fingers crossed HRSA thinks it’s written as well as I think it is.) Especially given more time. Because seriously, I could have used more time. A lot more time.

The topic– fascinating!! I have a personal interest in improving access to behavioral health services (because remember, I’ve kind of cra-a-azy) and I think the proposed project offers a really wonderful way to do that in our community. Very easy to get on board. Not as easy to learn the material. But I read and read and read (and googled and googled and googled) and I’ve come out the other side with a much better understanding of the role that different types of health professionals can play in behavioral healthcare as well as how the different pieces of the organization I work for can fit together to make that happen. Fascinating stuff!

And the PI… she was wonderful. Truly a dream to work with. She’s passionate about what she does and really understands how to make care better for patients. And that’s why she does what she does and why I wanted to help her do more of it. She makes all those hours worth it… and will continue to do so as I cash in on some favors I’m owed to help advance some other program grants I’ve been toying around with. (Mr. Burns-style excellent.)

So, yes, I am tired. And my poor husband is starved near to death. But we survived it. And I’d do it again in a heartbeat, even if it meant there was another week where we couldn’t chat.

(That’s not to say I haven’t missed you, because I have! And dearly!)

Anyway, I’ve sailed back to you, little lovelies! Back to Earth, back to normal, back to our regularly scheduled programming. Yay!!