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appreciate the good life, expectations, family life, family reunion, family time, good life, learning, life well lived, life with MS, midlife crisis, MS Medications, Multiple Sclerosis, patient centered healthcare, self esteem, Uncategorized, years worth of stories

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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Black Swan, good life, learning, MS, MS treatment, Multiple Sclerosis, story, Tysabri

1,001 Days in the Life of a Happy Turkey Story

nest

As I am listening to The Black Swan, The Impact of the Highly Improbable  by Nassim Nicholas Talebin my car on the way to work this past week, I keep finding myself engrossed in analyzing where I think the logic a novel way to look at the world and where I find the logic lacking.  I can not help it.   Being raised sitting at a dinner table with a physicist questioning every assertion I made as a know it all teen, I have been trained to question all logic presented to me.  As the title of the book implies, it is a book looking at the many instances when the one outlier event is more important than all of the preceding and following events.

One of his examples is the 1,001 days in the life of a turkey.  For the first 1,000 days of the Turkey’s life, the farmer is the good guy.  In fact, he might be the best guy in the whole world because every time the turkey sees the farmer means he is about to get fed.  Unfortunately for the turkey on the 1,001st day, the farmer has come to begin the Thanksgiving celebration preparations.  The 1,001st day is the black swan event for the turkey because it completely changes how the first 1,000 days should be viewed.  The farmer was not providing food because he wanted to make the turkey happy.  He was doing it to fatten him up.  Because the Thanksgiving massacre could not be foreseen by the Turkey with the knowledge/experience, it had and the result had such a large impact on the turkey’s life story, it met the author’s definition of a “Black Swan event.”

One of the central points in the book involves one of my favorite topics, perspective.  In the book, Taleb points out the problems with narratives as one of the things we should watch out for in our decision-making.  For days 1 to 1,000, the turkey’s view is highly reliable, and all of the other animals on the farm should be listening to him.  It is the 1,001st day that shows how wrong he was.  If one takes Taleb’s parable to heart, one would think the turkey better off never to trust the farmer’s food in the first place, and the other turkeys most certainly should not listen to the first turkey.  Instead, they should be mindful of the story of the 1,001st day.

I try to take this story to my MS treatments.  I have been on Tysabri for 7 years, and it has been a quality of life saver for me.  If one were to read (too much in my opinion) into the turkey story, one would be hearing all kinds of warning bells.  I will grant in the truest sense it would not be a black swan event because I can conceive of the possibility of getting PML (a potentially fatal brain infection).  Still, what if one simply lumps PML with all the other things known and unknown which may go wrong taking a drug for longer than the duration covered in any published study?   I do not pretend to know all that may go wrong.  When I want information of the unpublished variety on drug outcomes, I have only the stories of patients on sites like patientslikeme.com.

What I know is like the turkey during the first 1,000 days, I am currently happy and thriving.  When I started taking Tysabri, it was newly reintroduced to the market after being pulled for causing PML resulting in patients’ deaths.  Still, other treatments had failed to abate my increase in symptoms.  Therefore, my wife and I came to the decision, “Give me 5 good years over 30 crappy ones.”  Nobody is promised the 1,001st day.  For that matter, nobody is promised tomorrow.  In this light, I think the logic of worrying about the black swan events fails when confronted with a known medical condition for which there is no “cure.”

Now, I as I listen to the rest of the book, I am keeping in mind two facts:

First, nobody should stay on Tysabri for 7 or more years simply because I have survived.  To do so would be to fall for one of Taleb’s unseen biases.  Reading from all those who have thrived on the drug and deciding to go the Tysabri route for MS treatment with no further research is to ignore all those who would not write because the drug either didn’t work for them or killed them (preventing them from writing about it).  So deciding based on my blog and others like it may be and probably is unwise.

The second logical problem I keep running into is my minds need to create stories to better understand the why and how for things in my life.  I note even in a book that seems to decry the prevalence of storytelling, the entire book is full of one story after another to illustrate his points.  I think he is correct about the dangers of reading too much into stories because the “how and why” are all subject to the perspective of the storyteller.  As one of my teachers said in high school, the victors write the histories.  However, even they do not always know the truth behind why they won.

Still, without stories, we are left with only statistics.  Ironically, pure math misses as many truths as relying solely on story telling.  I will never forget arguing with my calculus teacher in college over the answer to her word problem as she insisted the answer was “The bus can carry 19 and 2/3 people.”  She marked my answer of 19 wrong insisting if I was going to round the number, I should have said 20.  I told her I knew of no “2/3 person” and in fact, I knew of no “partial people” since our country tried to cut ties to racially and gender motivated ways of counting people.  It was probably as much my attitude as my answer making her dismiss my answer as wrong refusing to give me credit.

So with this in mind, I come back to Tysabri and the turkey.  I continue to take it because it makes my life now better.  Sure, the odds seem to get a little worse with every new set of statistics, but those are numbers.  They don’t say anything about my ability to hold a full-time job, parent kids who need me, run a half marathon or any of a hundred other things I can now do which I probably could not if my former MS course had been unaltered.  I may have my 1,001st day in the life of a turkey, but it will be after having lived for the full 1,000 days.  I prefer this to the life of the turkey who chooses to live always hungry, always wanting.

I note Thanksgiving does not come at the 1,001st day of every Turkey’s life.  In my case, I hope Thanksgiving comes 2 months after I die comfortably in my sleep of old age having lived the life of a happy Turkey eating whatever my fate provided.

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