28 February 2017

(My) Patient Leadership in Health Care

They say my grandmother used wait on the stoop of the family’s crackerbox house in Southside Chicago and watch as my father walked to school to see if he would get in a fight before he got to the end of the block. The eldest son of a Polish steel mill worker who dropped out of high school, my father was on the wrestling team and cleaned the inside of tanker trains. But he was smart. He liked science and math, went to college on a scholarship, majored in economics, and went on to Cornell Law School.

As a lawyer, he represented the incarcerated’s rights at the state department of corrections, practiced defense in the state supreme court, and became chief legal counsel at one of the state’s 16 public universities. He helped build houses with Habitat for Humanity, served midnight breakfast to college students during exam week, and tutored his daughter who did not inherit his aptitude for science and math. He taught constitutional law and never once found himself on the wrong side of the law save for a speeding ticket or two. Upon his retirement, he was vice chancellor of technology transfer as well as chief legal counsel and one of the university’s most senior and respected staff members. One could say he did all right.

He did all right by mom and me too. Ever a man of his word, if dad said he was working late, he was. He saved for family vacations by eating a sandwich at his desk for lunch everyday. He kept the official score book at my softball games, sitting on the bleachers in his suit and tie, and bought, arranged, and delivered 40 long-stem roses to my mom on her 40th birthday.

My father’s faults I’ve come to understand more as I’ve grown older — not simply what they are (any teenager will tell you what’s wrong with her parents), but why they exist, how they influenced me, and which ones I too carry. He gets angry when he’s scared and feels out of control. He’s somewhat emotionally awkward and expresses affection by trying to foresee all possible problems, caution against them, and devise a plan to prevent them whether he knows what he’s talking about or not.

I don’t have his temper. Being in situations in which my life has been on the line taught me a lot about what’s really worth getting worked up over. I am more spontaneous, often to his ire.

He became more than his humble hand foretold, and he achieved that goal while always taking the ethical path. For that I admire him greatly. For instilling that same sense of ethics in me, I am thankful. And it is his grit, his drive, his call to service, his belief in doing what is good and right that have become my own.

From age 24 to 31, I underwent triple bypass surgery, suffered a stroke, lost my left kidney, had four brain aneurysms repaired, and survived a gastric rupture before I was diagnosed with a rare variant of a rare disease called intimal fibromuscular dysplasia. Its cause is unknown. There is no treatment. Such things might crush some people. I, on the other hand, persisted.

Throughout my period of survival, I learned so much both practical and personal, and I found a calling in patient advocacy. I became an advocate because I could use my pain for the good of others.

As my leadership role grew, I felt I lost my place as a member of my patient community. It seemed that I could not ask those who looked up to me for the support I needed. My professional distance actually isolated me from what had drawn me into advocacy — my fellow patients. 

The kind of leader I want to be has a heart, and honestly I lost touch with mine. Putting my head over my heart had been critical to my survival — a learned coping mechanism. Similarly, my style of leadership came to be, at least outwardly, impenetrable. I strove to be judicious and fair, analytical and unflinching. I cultivated that well, so well that somewhere along the way I began to lead only with my head, and I sequestered away my heart such that it could not betray me.

It was a fellow patient willing to give me a proper shaking by my emotional shoulders who brought me to the realization that in order to be a good leader, I can not lead only from my head, and that the opposite is not to lead only from my heart. I am pursing training so that I may learn to balance both, re-establishing fellowship to rekindle the passion I know lies within me, and kindling the belief that I can become the leader I’ve never had — the kind I would follow into battle, the kind with whom others hope to work, the kind who teaches others how to be good leaders too. 

29 December 2016

Everything Is What You Make It

Lead. Be kind. Help others.

Help one another. Help someone you know. Help someone you don't know. Help someone in a small way. Help someone in a big way. Help a person, help a place, help a thing.

And then celebrate it and share it.

We need some good news. We need to set the tone for 2017. And we have power to control it. We have the power to be better than decent and spread it around. As we do so, we demonstrate to others how we want to be treated.

Perhaps my request is simplistic and hokey. Or perhaps believing it to be so is indicative of the current state of things — that somehow we've come to see being kind as a silly waste of time. There's a culture of "I'm going to get what's mine" that has pervaded our lives. It comes from competition. It comes from struggling to achieve in an environment that champions acquirement more than generosity. We do not need all the things. We are not lesser people because we do not have all the things. And having all the things does not make us better people.

But help — helping and receiving help — has enriched my life in so many ways. It's all that they say about paying it forward and more.

No, we won't turn the world into one great big snuggly ball of love and goodwill overnight. We can start small and make kindness and helping others something that we do day after day after day until it is a habit that comes naturally. I believe that we can do it.

I have to believe that we can do it because I'm so tired of all the bad news. It grows, feeds upon itself, becomes normalized from our Facebook feeds and 24-hour news shows into our daily actions. We don't have have opposable thumbs and free will so that we can be horrible to one another. We are capable of great things. And, like it or not, we are all leaders because someone is always watching and learning from our actions. What kind of lessons do you want to be remembered for teaching?

Now... pass it on.



29 March 2016

Running The Boston Marathon — Together

Running for Rare pairs up runners and rare disease community members to raise rare disease awareness and raise funds for the the National Organization for Rare Disorders, Inc. (NORD) and National Institutes of Health (NIH) Undiagnosed Diseases Program. 
As a fibromuscular dysplasia patient, I have been fortunate to be a patient partner for two years now — first with Jessi Colund in 2015 and now with Martha Staples. I am humbled to be a source of inspiration for these women who have put in mile after mile and will be at the starting line for the 120th Boston Marathon bright and early on April 18, 2016.  
I am not a runner. I never have been, and I don't anticipate I ever will be. A physiatrist friend of mine is recommending I start a program of "vigorous walking" for five minutes a day for four to seven days and then doubling that to 10 minutes a day. He wants my heart rate up. I told him that unloading my groceries gets my heart rate up. It's a matter of stubborn chicken and stubborn egg. If I exercised more, perhaps I wouldn't tire so easily, but I tire so easily, so I don't want to exercise more. A.K.A. — it's hard, I don't want to do it, please wave a magic wand. When I invent the magic wand, I'll be sure to let you know. 

Martha and I have been getting to know one another through email, Facebook, and phone calls, and we wanted to share a bit about ourselves and our partnership with those who may also be runners or rare disease patients. 

Name: Martha Stapels
Age: 39
Job: Principal Scientist (Chemist who analyzes proteins)
Years Running: 4 years in grad school, 10 year hiatus, 4 years since, so 8 years total
Years with Running for Rare: 2 years
Longest Run to Date: 28 Miles!!!
Marathons Already Completed: 5 (Portland, OR 2002, Baystate 2014, Boston 2015, Grandma’s 2015, and Marine Corps 2015)
Why Are You Running: To raise money and awareness about rare diseases and to inspire my kids to dare to try hard things.
1) Tell me about a time when you wanted to give up — but didn't — and what it was that drove you onward.
There is always a point in a long run that I want to give up. I try to think about strong runners who inspire me, my kids, my friends, my family, my patient partner, my running coach. Honestly, doing scientific research is very similar to running a marathon. It’s a long slow process and more often than not, things don’t work the first time. Being part of a team helps, and trying to move things forward every day is the only way to make progress. Thinking of who you’re working (or running) for really helps when you want to give up.
2) What is your personal motto?
Courage without fear
3) For what in your life are you most grateful?
I have two beautiful, smart, amazing, healthy, funny kids.
4) What are three songs that make you feel good no matter what?
5) Assume have have unlimited resources and no limitations of any kind (time, money, distance, companionship, family/child care, etc). What would you most like to do?
Travel and run all over the world. Experience all of the beautiful beaches. Take my kids to see amazing waterfalls.


Name: Sarah E. Kucharski
Age: 35
Job: Coordinator of ePatient Programs at Stanford Medicine X; independent consultant
Years Running: 0
Years with Running for Rare: 2 years
Longest Run to Date: I ran the mile back in grade school for the Presidential Fitness Test.
Marathons Already Completed: 0
Why Are You a R4R Patient Partner: The physical and mental fortitude it takes to run just amazes me. I admire runners' drive to carry on past the pain. Such ability is something I hear echoed in the rare disease community, as so many patients have no cure and no treatment but persevere.
1) Tell me about a time when you wanted to give up — but didn't — and what it was that drove you onward.
After I had a stroke at age 27 and was working part-time, I decided to go to grad school. My program required one science course. The course offered at the time was online and about biorhythms. The professor was out for the semester and had left teaching to an assistant. I'm a good student. When I — and a majority of other students — failed the first few assignments, it was clear that something was amiss, but to make matters worse we only received our failing grades after the course's drop date. Even though offered an exception to the drop date, I was in a bind. Another science offering for the program wouldn't be until two semesters away and thus delay my graduation. I used my frustration and anger as a catalyst. I studied, learned how to speak the language the TA wanted, helped other students as much as possible, and learned from others. I resented that the material in and of itself wasn't that hard and that the TA wasn't grading on whether students understood the material — just whether they could regurgitate what they had been told. In the end, I passed the class with an A, and followed up with administration to improve the course and the program overall for future students. 
2) What is your personal motto?
"Many times in your life you may feel that you are failing, but ultimately you will express yourself, and that expression will justify your life." — from Irvine Stone's Lust for Life
3) For what in your life are you most grateful?
I absolutely treasure my parents. They are my advisors, my confidants, my friends. I admire them for their values and the strength and courage they have shown in being MY parents. While being such incredible supporters, they also have allowed themselves to be emotionally vulnerable, which has helped us get to know one another as individuals. 
4) What are three songs that make you feel good no matter what?
5) Assume have have unlimited resources and no limitations of any kind (time, money, distance, companionship, family/child care, etc). What would you most like to do?
I've been working on a bucket list for several years. I've been fortunate to check off many things on that list, while some have been scratched off for other reasons and new things added. The top three things on that list are 1) pet a tiger 2) get more than a magazine article published — preferably a book 3) write a book. 


Help me recognize Martha's dedication and efforts to make a difference in the rare disease community by making a donation to her fundraising page, available via Crowdrise.com at http://bit.ly/1TbgUbE.

16 April 2015

Owning Up — Or — I Know How Nicholas Sparks Feels

Speeches, soundbites, video clips, indelible images — memories mapped to become mementos in and of themselves. What if we don’t want to remember? What if we need no reminder to be unable to forget?

Two and a half years ago, I stood on a public stage and put my marriage on a pedestal, a shining example of how patients and caregivers should be together. Every word was true. For all intents and purposes and for what it was worth, our relationship was far from the worst, which makes it harder to pinpoint exactly how, when and why it failed.

Neither points fingers or at least we know the adage — “point one finger at me and three more point back at you.” We did pretty damn well. We could have done things better. We made assumptions. We didn’t allow for change. And now we no longer live together.

It’s been five months since the separation, and it will be another seven months before a judge will grant a divorce. (The South likes to make such things more difficult than they already are.) We’ve agreed to do together as much of our coming apart as we can, which has confounded loan agents and real estate attorneys, but neither of us knows how to go through something hard without the other one. It is… complicated.

I am mad at him. I am mad for him.
My husband and I are divorcing. My friend is losing his wife. 
The only redemption comes in that two friends do not have to lose one another. 

At least not yet.
At least not yet.

Because he knows me. And I know him. 
Because we have learned so much from all we have gone through together as husband and wife, caregiver and patient. 
Because the very things that made us strong as individuals — independence, persistence, doggedness — were detrimental to us as a couple. 
Because we did the best we could. 
Because we deserve a happy ending. 

Which we don’t know what looks like yet.

He’s been painting what was once our bedroom — rose and warm gold covered over with dark mustard and "greige." He says it’s beachy. I say it’s nautical. We know we both drifted away.