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A Year of Milestones: 2015

Maybe we all need the blind to read to us, especially if they are reading to us about us. (K reading to Scarlet from a book made about Scarlet)
Maybe we all need the blind to read to us, especially if they are reading to us about us. (K reading to Scarlet from a book made about Scarlet)

I have a habit of looking back at the end of a year and taking a moment to think about what was important in the year. Often things which seemed huge at the time seem much smaller with the gentle lapping of time’s waves. Other events which seem trivial loom large as their occurrence warns of an incoming avalanche.

With that said, here are my most salient memories of 2015. I turned 40, and I realized I have had MS symptoms for 10 years. Now just having MS for 10 years doesn’t seem like that big of a deal ten years into it. However, early on when I was dealing with head aches bad enough to make me pull over to the side of the road to puke or could not hold on to a soup cup for long enough to pay for it, my ability to still maintain a full time job and help my wife raise three medically fragile children would have seemed foolishly optimistic. So here I sit at 40 years old and having had ten years with MS, and I am planning to run the Yellowstone half marathon in June. It is my way to “rage against the dying of the light.”

When I think of big events of 2015 for me and my family, the events list start with the adoption of K. She has been with us so long, the formal adoption was almost taken for granted. She has been family almost her entire life, and we take it for granted at this point. Of course that is a sign of the truth of the statement in fact as well as in law that she is family.

For other family events, it is hard to come up with one bigger than the summer family reunion in Arkansas. For me, it is still amazing to see the family bonds strong enough to pull more than 75 people together from all over the world every five years. It feels like living in a story from the fifties because I don’t see or know of many of my friends still having big family reunions. It’s an invitation to be accepted into a family group larger than our nuclear family and close friends. For our kids, how great is it to get to know they are connected to so many people of different cultures who approach things differently? Still better, the family reunion was followed by a week with just uncles, aunts. grandparents and cousins. So their personal net of connections got cast out wide and then pulled back just a little to deepen the ties a bit closer on the family tree. The whole trip was a fascinating time to renew friendships and definitely one of my favorite highlights of the year.

Continuing on the family side, I was also lucky enough to chaperone each of my two oldest on their respective scout camping trips. It may seem silly to rate nights spent laying on the cold ground as highlights, but I enjoyed the time bonding with my kids and watching their interactions with their peers. I figure I am not that far away from a time when my kids will grow apart from me and not want me hanging around. After all, the “cool” dad role has a definite expiration date. So for the time being, I will enjoy the chance to tell stories around the camp fire and laugh as other kids are now old enough to know some of the myths I draw from to craft my stories.

Happy moment of found family 2015
Happy moment of found family 2015

On my work front, 2015 was rewarding, informative and depressing all at once. The project I manage lost 6 of it’s 4 employees during the most hectic part of the schedule before publication. No that is not a misprint or a mistake. We lost the replacements of 2 of the spots as well. When we published in September, there was another project manager and I along with two employees who began April 1st and 2nd. When I say rewarding, it is because we accomplished what most outside our group said could not be done for months leading up to publication. I was lucky to get good employees who quickly grasped what I was trying to teach and then were able to move forward. The depressing part was being given a rating of barely passable performance by new management who never understood what was involved in meeting our publication dates. So they praised us in public for accomplishing what most thought could not be done, and then in private they rated us as low as they could without having to justify the ratings. As a kicker, the other project manager was removed from our area in the weeks following publication. The upside is the rating has reenforced in my mind the need for cultivating an ability to appreciate accomplishments regardless of others’ opinions. I teach it to my kids, and this is just an example where I need to live what I teach.

Thankfully, if my job threatened to make me question my abilities to think critically to work towards a goal, my work with the American Board of Internal Medicine (ABIM) as patient’s advocate has been rewarding. It is fascinating for me to learn how they determine what a doctor should need to know after they have been practicing medicine for years. ABIM then gave me two great recognitions of my input. They extended my term of service on the board as my initial term was expiring, and they asked me to help them on another as they set up a conference promoting patient centered medicine. Not much makes me feel more appreciated than being asked to continue and then asked to do more.

Still, the highlight from a feeling of possibly having an impact on healthcare came when I was asked on a Wednesday afternoon in October if I would present at the FDA on the following Monday. The kicker was I had to have a presentation to them by Friday. Thankfully, the topic of the presentation was REMS: Understanding and Evaluating their Impact on the Health care Delivery System and Patient Access. It was an opportunity for me to talk about risk management from a patient’s perspective because I take a drug with a chance to leave me with a brain infection likely to cripple or kill me if I get it. Talking about numbers and what they mean is the type of conversation I frequently lead at work as we review data, and I had just written about our inability to really conceptualize large numbers. So I wrote up the presentation on Thursday night and gave a quick run through with my coworkers on Friday before submitting. On Monday, I gave my presentation and actually had some applause which shocked me. Having people come up to me for the remaining 2 days referring to me with “you’re the numbers guy right?” was a great shot in the arm. I was even contacted months later by another patient advocate who watched my testimony and was impressed enough to re-watch it before presenting to the FDA at the request of the MS Society. Giving that presentation was a high water mark for feeling my thoughts on our healthcare are respected even if I think they are often given more weight than they deserve.

My theme for this past good year could best be stated, “It feels good to be valued.”

There is a some times shy super hero inside us all. This is one of my favorite pictures from 2015.
There is a some times shy super hero inside us all. This is one of my favorite pictures from 2015.
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Family, family life, family reunion, family time, family vacation, life's most important question

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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