Guest post by Ivy Scherbarth. Ivy is a Colorado/Wyoming FACES Coordinator for PPMD and mom to Hazel, age 8, and Rain, age 6. Rain has Duchenne muscular dystrophy. Follow Ivy at her blog, Living Duchenne.
I am the sort of person who re-reads The Lord of the Rings every year. I generally like to read it in February, which though short, tends to feel interminable to me. The story of The Lord of the Rings is one of slogging on beyond all hope. It is a tonic and an admonition against depression and despair. It is a story-form meditation on different uses of power: sharing it, withholding it, resisting it, ignoring it, shaping it, wielding it. It is a story of how diversity and cooperation, even begrudging cooperation, can overcome a single, monolithic problem, despite the lack of hope, or even plausibility, of success. JRR Tolkien was a complex thinker and The Lord of the Rings is the expression of his lifetime of wisdom, but as he famously pointed out, it is "neither allegorical nor topical." Rather, its themes are endlessly applicable. Sometimes I like to point that applicability lens at my life with Duchenne.
I am thinking today about power.
When faced with the diagnosis of Duchenne, parents can often feel like the hobbits in Tolkien's epic: small, weak, provincial, and overwhelmed. I certainly did. I felt that, like Frodo, I had been suddenly thrust into a much larger, more dangerous and complicated world than I had ever lived in before. I felt that my delays in setting out on my journey had been a mistake. I felt like the road I had to travel was too long and too difficult to even contemplate, let alone to actually tread. I felt powerless in the face of my overwhelming burden, Duchenne.
Like Frodo, the people I have met along the way have aided, taught, and encouraged me in ways I didn't even know I needed. Some are powerful and great. Some seem almost magical in their ability to make progress against Duchenne. The research organizations, the fundraisers, the clinicians, the veterans, and the survivors-- each has a kind of power and energy different from the others, but complementary. I often find myself grateful for my fellow travelers and their diverse abilities and contributions in our mutual struggle against Duchenne.
But what about those times when the help that is required comes from a source which is difficult to admire or appreciate? How can we work with those individuals and institutions whom we find lacking in some crucial way? These may not be like Gollum exactly, who really was sneaky, untrustworthy, and ultimately, dangerous. Of course, we should protect our children from anything that carries a whiff of those dreadful traits. But what can we do about the doctor with the poor bedside manner? The clinic which lacks a crucial diagnostic machine? The school that just will not follow the IEP? These are times which require more of a parent than the personal powers of knowledge and self confidence. These are times when parents need the power to shape, to persuade, or to build. These may be times when the darker powers of manipulation and playing politics are called for.
Such ideas do not come naturally to me. I am a straightforward person who tends neither to notice nor to care much about social hierarchies or credentials. I don't understand politics. But, just as in Tolkien's world, not understanding the sources and struggles of power is neither excuse nor freedom from them.
I want to change aspects of some of the institutions that serve my son in his fight against Duchenne. I want to give my son the very best care in the world. I want all people with Duchenne to have all of their needs met. I wish that the One Ring had never come to me, or that the quest was already completed and successful. These thoughts are natural. But achieving the goals that might lead us toward a Duchenne-free world requires tremendous power.
I'm not sure I have any answers. I certainly wish that I could always lean on the near-mythical powers and advice of our Duchenne community equivalents of wizards, kings, and elves. But like Frodo and Sam, ultimately, when things are at their worst, all we can really do is slog on, to the end, however bitter, and then beyond. Interestingly, Frodo actually fails in his quest. He fails to destroy the One Ring. What saves Middle Earth from certain destruction is the unremitting, combined efforts of all the diverse resistors of ultimate evil, whatever their personal power or inner motivation might have been, even if at times during the journey we questioned their basic sense or even their humanity.