Managing Complex Change

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I’ve seen a couple other versions of this – one that included Data, which if missed would lead to incoherence, and one that included Consensus, which if missed would lead to sabotage. Interesting either way.

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Multipotentialites and Adversity

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We received some difficult news yesterday.

Our daughter underwent an MRI/MRA/MRV with general anesthesia and contrast on December 1st due to the presence of Port Wine Stains on her forehead and eyelids. The doctor called with the results, and the imaging confirmed the presence of abnormal blood vessels on the back left surface of her brain consistent with Sturge-Weber Syndrome. This puts her at a high risk for seizures and possibly other neurological/developmental issues – it is certainly not a guarantee, but we will have to monitor her closely going forward. The longer she goes without any symptoms, the better her chances are of avoiding the worst symptoms.

Digesting that information will take a while.

But as I pondered things this morning, it occurred to me that we have a lot to be grateful for. Our daughter hasn’t presented any symptoms yet…she is growing, developing, smiling, laughing, talking, rolling over, and all sort of other things that you might not expect from an eight-week-old. We have an amazing support system of friends, family members, and coworkers. And we are within driving distance of what seems to be the premier Sturge-Weber research and treatment center in the world.

On top of all of that, I am grateful to be a multipotentialite.

I wrote briefly about being a multipotentialite in my first Generalists vs. Specialists article. A multipotentialite, defined loosely, is someone who “has many different interests and creative pursuits in life.” You can read a lot more about multipotentialites over at Puttylike.

Being a multipotentialite has helped me deal with adversity many times, mainly because by nature I am adaptable. To use a metaphor, I find that my personality allows me to flow like water, often taking the path of least resistance, bending and turning when the course of life requires it, often rushing from one interest to the next, and sometimes pooling in one place for a little while. Sometimes the changes in my life are the result of my own choices and it’s tough enough to deal with those consequences sometimes. But in the case of this medical diagnosis we’ve been thrown an unexpected, undeserved, unwarranted curveball and I get the feeling that there are a lot of people who wouldn’t be able to adapt as well I am am able to.

A huge part of adaptability is learning, and like many multipotentialites I am at my best when diving into a new subject area. When we first left the hospital with our daughter, the pediatrician told us that the marks on her head were most likely not bruises after all and that visits to an ophthalmologist and neurologist were necessary. I immediately went hunting for information and that is when I first became aware of Sturge-Weber syndrome. Since then, I feel like I have been ahead of the game when attending doctor visits…I already know what they’re looking for, and why, and I can ask the right questions. When we got the news yesterday I spent another 24 hours researching and finding out everything I could about the disorder, who can help with it, and who else we could talk to. I’ve added Sturge-Weber Syndrome to my list of generalist interests very quickly. I think about people who might shy away from new information, or avoid having to consider all of the possibilities that could come along with a scary diagnosis…I can’t imagine being that afraid and not having the knowledge to adapt well.

I also think that being a multipotentialite allows me to see connections between ideas, therefore providing a glimpse at possibilities that others might miss. The more I focus on Sturge-Weber Syndrome and helping my daughter, the more ideas I generate about how best to support her, how best to support my girlfriend, and how best to support my older daughter. I think about ways that we can combine the expertise of our local doctors with the expertise that the specialists might bring to the table. I think about ways that friends, family, and coworkers can get involved. I think about the different courses of action and the various possibilities that exist, and in my head I am able to evaluate the choices we have in order to best meet everyone’s needs. I can’t imagine how difficult it must be to get through adversity without being able to visualize the paths ahead and combine their best qualities to discover the right way to proceed.

I am appreciative of all of the events in my life that have led to this point. If I wasn’t a generalist, I wouldn’t have my current job. Nor would I have the ability to supplement my full-time income with web design projects on the side. Nor would I have any interest in theater, through which we found some of my closest friends. I could go on and on, but in short I think it is safe to say that my diverse interests have combined to put me in the best possible position to help my family at this difficult time.

All things considered, I feel like instead of being driven by fear or trying to ignore difficult news and avoid confronting adversity I am able to adapt to life’s changes because I am a multipotentialite. I feel secure in my knowledge of what Sturge-Weber Syndrome is, how it will affect our daughter, what we can do to mitigate symptoms if they ever appear, and who is around us to help. I feel that security as a result of my diverse interests, my ability to make connections, and my passion for learning and mastering. I hope that others who may be going through tough times can tap into their multipotentialite powers so that they can also feel the same security in the face of trying times and change.

Motown Misery

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I am a bitter Detroit Lions fan. Let’s just get that out of the way right now – I’m pissed that 1) the Lions couldn’t complete their first season sweep of the Packers since ’91 and 2) that the Lions got screwed on a ticky-tacky facemasking call and 3) that Aaron Rodgers’ bonus-time Hail Mary found it’s way into his wide receiver’s hands for six points. I’m sick about it. We were up 20-0 and couldn’t close it out.

But on a more rational note I’m sad about the state of football, my favorite game in the world. Here’s my issue: football is one of the only sports, or maybe the only sport, that gives the offense a measurable advantage in the late minutes of each game. The game is regulated in such a way that wide receivers and quarterbacks are practically untouchable in late-game situations. The Lions have benefited from it and suffered from it just like everyone else. Of course, this benefits the league and the broadcasters because it means that fans have to watch the entire game, not just the first half or the first 40 minutes. A team can be up by 10, 15, even 20 points in the fourth quarter and still lose because defenders have to be so careful about how they cover, how they tackle, how they move around the field – a bump here or a grab there and suddenly the offense has moved 60 yards in a matter of seconds. And it happens over, and over, and over, and over. It’s not unusual anymore. Down by ten or less with a minute to play? No problem. Those comebacks are hardly miraculous anymore because it is so easy for offenses to score late in the game.

Last night’s game highlighted these issues. Detroit led 20-0 in the 3rd quarter. I knew that the lead wasn’t safe…even without rules that empower offenses, you don’t take even a three-score lead for granted. There’s a reason that the phrase “it’s not over ’til the fat lady sings” has been around for a long time. But it was the way that it all played out that highlights the league-wide problem. Green Bay scored a touchdown, then Detroit turned the ball over and Green Bay scored again. 20-14. I get it. That was Green Bay’s skill and the Lions’ ineptitude. The Lions get the ball and churn out a lengthy, time-consuming drive…and end it with a field goal. 23-14. A two-score game. Challenging to overcome, but certainly not impossible. Then Green Bay gets the ball with what, seven minutes to play, and drives down the field for their third touchdown of the day. That cut the lead to 23-21 with about three minutes to go. Detroit gets to a third-and-12 situation, converts, and has a fresh set of downs with 2:11 to go. At this point, the Lions simply need a first down and the game is over.

Instead, Detroit runs the ball three times and eats up all but 30 seconds of the clock. I understand the play-calling, but here’s the problem: 30 seconds is plenty of time in this day and age to score. Plenty. You can’t just hand the ball back to the offense and expect to shut them down. So Green Bay takes over at their own 21, throws two incomplete deep balls, and then runs the old hook-and-ladder. The Lions’ defender brings Rodgers down, but he bumps the facemask and is called for a 15-yard penalty. Time has expired. After 60 minutes of football, the Lions have won. But football’s rules benefit the offense. The rules are too sensitive and the officials gave Rodgers another shot at the end zone, this time from 15 yards closer. I saw three possible scenarios unfolding – either the Hail Mary would be incomplete or picked, it would be caught, or Green Bay would benefit from an interference call and get the ball again, this time from the 1-yard line.

As it happens, the pass was caught for a touchdown and the game ended. But I’d say there was about a 67% chance that Green Bay was going to get points either on or as a result of that extra play.

Do other sports have this issue? I don’t think so. Batters don’t have a ninth-inning advantage in baseball. Goalies don’t have to play with one hand tied behind their back in the third period. Can teams still score quickly? Do comeback still happen in other sports? Absolutely. But those results are fewer, more far between, and more often the result of skill as opposed to regulation.

So yeah, more than anything I am upset about the state of the game. I think it sucks that offenses are given such a large benefit from the rules. When I grew up, if your team was down by 20 in the final quarter it truly was a miracle if you won. It really was. But now, it’s almost expected. That takes away from the game…as a fan of the game, and as a fan of the Detroit Lions who got absolutely screwed last night. The system is rigged but it benefits the league so I don’t see it ever changing.

Port Wine Stains and Perfection

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Our little one is seven weeks old now. As I type this on my iPad she is nestled in my arms for an evening nap…I love all of the little noises that she makes while she snoozes. She is a wonderful addition to our family and I’m constantly amazed at the little miracle that she is.

I think she is perfect.

  

Of course, perfect is kind of a subjective thing, isn’t it? As perfect as I think she is, she has what many would say are some alarming flaws. You see those red marks on her head? They are called Port Wine Stains, or hemangioma. They are a capillary malformation, a genetic mutation that occurred while she was still in utero. Doctors know a little bit about what causes them – they occur in one out of every 300 children – and many people have successfully undergone laser surgery to have them lightened or removed completely. But the larger concern is regarding their depth. One out of every 20,000 babies develops Sturge-Weber syndrome where the hemangioma cause increased pressure on the eyes and brain, leading to glaucoma, seizures, developmental issues, and neurological disorders.

What we initially thought were bruises turned out to be these hemangioma, and as we prepared to leave the hospital with her we were told that she would need to see pediatric ophthalmologists and neurologists. It was a scary and not fun time for all of us as we looked up all of the worst-case scenarios and played them out in our minds.

Our first visit was to the ophthalmologist. She did some simple tests and concluded that the hemangioma did not cause any increased pressure or irritation of the nerves and vessels of the eyes. That was great news, but only half of the answers we were looking for. Our next visit was to the neurologist and unfortunately there were no simple tests that time. He recommended an MRI, MRA, and MRV (all types of imaging) to determine just how deep the hemangioma went and whether it posed any problems to the brain. So he sent off the request for the testing and we waited some more until the medical center called us to schedule.

We had our visit to Hershey Medical Center yesterday. We arrived at 9:30 and she wasn’t taken back for the imaging until shortly after noon. The procedure lasted about two hours and then they monitored her condition until 5 p.m. We finally got home around 6:30…it was a long and stressful day. Our little one received general anesthesia and contrast, and required a breathing tube during the testing. She was a “rock star” patient and hardly fussed for the doctors.

  

Now we wait a couple days before finding out the results and determining what our course of action is. We are hoping for the best, that she has no risk of neurological issues, but even if that is the case I am sure that she will be monitored over the next few years at least to make sure that nothing changes. And if she does show some indication of Sturge-Weber we will undoubtedly have to take more steps to mitigate the risk of seizures and developmental disorders.

But, like I said, she is still perfect to me. She is our little super hero, always wearing her mask, and she has a happy and spunky personality that I do not think will ever be changed by any health condition she may have. I can’t imagine her being different, not even a little bit.