Who Am I?

For what puzzle is this a piece and what part of the picture does it show?
For what puzzle is this a piece and what part of the picture does it show?

After a month off from writing due to a family vacation, my not feeling well, and a stressful crunch time at work, I am finally able to finish the post I started on vacation during a family reunion. In fairness, much of this was composed before the trip in my mind as I justified why I was taking time off from work at a crunch time in our production schedule. In the end, it all came down to needing my kids to feel like a part of the larger family and to know family acceptance from more than just our nuclear family. I frequently read how adopted children have a harder time feeling acceptance, and I know from experience how easy it is to feel like you spend time on the outside due to medical conditions. To the extent I can help it, I want my kids to know acceptance and feel a part of our family, all of it.

At some point in our childhood, we all begin to get a sense of who we are. We get this from a multitude of places. Some are good and reliable, while others are as fickle as a teenaged whispered joke poking at our sensitive spots. As parents, one of the first things we try to give our kids is love and attention, to give them the strength to overcome some of life’s trials. We teach them they are worth our time and affection, and if both parents and kids are lucky, they come to believe it. They gain a sense of belonging needed by all of us, and family becomes one of our first identities.

After a family picture, many of the just photographed prepared to jump in the pool.
After a family picture, many of the just photographed prepared to jump in the pool.

It is toward this end that I have a running gag with my kids. I ask them, “Guess what?” and the answer is always either “I love you” or “I still love you” depending on whether I have just asked them to “Guess what” or “Guess what else.” Of course, every time they ask me to “Guess what” I always say “You love me?” Since kids say that all the time to me, they often mean what’s on their mind which is not our running gag. A sometimes says, “No I’m talking about X” which leads me to “You don’t love me…” and a dejected face which lead to her comforting me before I directed us back to the reason for her talking to me. O caught on fast, and he now says, “Yes, I love you, and I just saw X.” The point of the gag which has been running for years now, is to in-bed within their mind the assumption of loving bonds defining our relationships.

Still, knowing their relationship with our nuclear family well is kind of like knowing how their piece of the puzzle fits with the pieces around it. But how does that set of pieces fit within the larger puzzle of humanity? We are but one small block of pieces within the society they will experience. So how does our nuclear family fit in within bigger groups. Our family knows how we interact with friends because they see it every day, but is our family bigger than the five of us? OK, they know their grand parents, but are there more? Are we a part of a bigger set of pieces across the puzzle?

The knowledge of a family bigger than those people seen on a regular basis was the greatest gift of the family reunion held last month and every 5 years prior. Our kids got to meet and interact with cousins from the other side of the United States and across the Atlantic Ocean. Watching them learn how others think and play was absolutely amazing. Letting them see others with completely different problems allowed them to put their issues in a new perspective. On the trip and since, A has had a completely different view of her eating restrictions because she knows she can eat more than her aunt who is diabetic. Suddenly our problems are just problems like everyone has, even if they are different.

Then seeing some of their nieces get their hair done like they do was comforting too. Suddenly there were cool older family members asking to have their hair braided with all the discomfort they know too well. Seeing something you do all the time imitated, even if it is something you are forced into doing, is a powerful bond. I don’t know that A recognized it as such, but there is a certain equality in a relationship where all sides try to imitate things they like about each other. With A frequently going her own way due to difficulty keeping up in speed of imagination or physical activity, having shared experience helps.

J spent a lot of time doing young girls' and women's hair so they could be like A & K.
J spent a lot of time doing young girls’ and women’s hair so they could be like A & K.

Of course, our kids are still kids, so these insights come in fits and starts, but it is a step in the direction of maturity.

Thank you A & L. Your gift helped us all go and enjoy time together. Your help made the trip possible for us.

A is not the only one who learned from others how best to thrive with their medical condition.  I have so much to learn from men like John.
A is not the only one who learned from others how best to thrive with their medical condition. I have so much to learn from men like John.

I took a picture of the Arkansas Hot Springs' sunset almost every night.
I took a picture of the Arkansas Hot Springs’ sunset almost every night.

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We Need a Champion We Can Trust

Some days I am amazed at all of the help we have gotten with A through the years.
Some days I am amazed at all of the help we have gotten with A through the years.

In the past two weeks, I have sat through a class on building trust with an organization and a round table discussion between the president of the American Board of Internal Medicine and a broad cross section of patient, consumer and purchaser organizations . At first, I did not link the two topics in my head until somebody at the round table described what patients want from their doctors as “someone who will champion me and my needs.”

When I heard this, I thought it summed up why I thought so highly of my favorite doctors. Of course, I want them to know all of the latest best practices, but as a patient I have little means to ascertain whether I am getting good or bad service in terms of medical quality. What I really need is somebody whom I can trust to do the multitude of little things to make me buy in to a plan of action to improve my health. Nothing builds trust faster with me than knowing the doctor will see my needs met, even when I know I am imposing a huge burden, sometimes bigger than I feel comfortable requesting.

When I think of doctors for whom I have the highest regard, I think of our children’s primary care doctor. Early in our fostering, my wife took our oldest to see her. Not only did she read through the medical history (2 big, full binders), she asked probing questions, followed up with requests for medications, gave needed referrals, and finally she filled out a huge application with a long letter detailing A’s medical history in an effort to get A into REM. REM is a program for rare and expensive case management. That A was ultimately denied did not matter. Her effort identified her as a champion, as somebody who had our kid’s interest in mind. As she has run for public office in recent years, it’s with a heavy heart we always vote for her. We vote for her because she is a champion, but we cringe at the thought of losing her energy and time as a doctor. She is one of the people I think of when I think of a quote from Andrew Bridge in Hope’s Boy,

“Some people are born for battles. Their bravery endures, regardless of frailty or strength. They are the ones we look to and our admiring hearts tell us, ‘They’ll know what to do.’ They are the great winners and losers of history. We remember them less for their outcomes than for their glorious acts. And, with the gentle wash of time, they become our heroes.”

When I think about my neurologists whom I have trusted, I think about why I trusted them. I trusted them because I felt my experience mattered to them. I felt as if they listened rather than heard what I said. They answered my questions and coaxed out what I valued in my treatments and life. I was and am willing to risk greater harm in order to preserve my abilities and life today. The best doctors have listened and have been responsive when I asked for help, and in turn I try not to ask often (a point of contention between me and my wife who thinks I need to ask more).

As I reflect back on the trust class and ABIM’s goal of requiring certified doctors to look at their own practices with a critical eye towards improving patient care, I come back to the comment from the round table. We patients want our doctors to champion our healthcare with us. In order for a patient to feel this bond, we have to feel trust.

I will readily admit much of healthcare today is set against the formation of this trust. Doctors have very limited time with each patient. The paperwork and administrative functions they and their staff are called to do by government, insurance and other organizations seems daunting. As a patient, all I can say is I am asking for a champion and a champion’s time/attention. I know I ask for a lot, always have. I just try not to ask often.

When thinking about how I would want the medical profession to change and how we as patients could measure a doctor’s trustworthiness which includes both intent and ability, I realized there are a few things I need to feel my doctor knows to do and how. I want them to know not only what treatments I may need, but how to chose amongst options and how to obtain needed treatments. The best have been ones who know how to make this easiest for me in terms of money and time, like the doctor who suggested I contact the pharmaceutical company for copay assistance. I want doctors to know how to be approachable. For some this comes easy, but I have certainly seen those for whom it is hard. I want a medical profession where criticism is seen as opportunity for improvement and thus constantly sought at all levels. The openness to being eternal students is critical. We can all improve

There is a kid’s riddle, “What do you call the person who graduated last in their class at Medical school?” The answer is, of course, “doctor.” In my ideal world, the follow-up question would be what do you call them and all the others who graduated ahead of them?” The answer should be just as obvious, “students.”

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Our Family's Stories of Growing Up

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