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.