Getting it all done and figuring out what needs to be done first. Everyone, whether you are dealing with Duchenne or not, feels the pressure of time and faces a daunting, ever-growing to-do list. But when you’re dealing with a disorder like Duchenne, that clock ticks louder. In their monthly co-blog, PPMD President Pat Furlong and Colorado FACES coordinator, Ivy Scherbarth try to sort through priorities and what in our lives deserves more of our time and energy. Please take a moment after you read this month’s co-blog to share your insights about priorities.
What do you hear?
Master Po: Close your eyes. What do you hear?
Young Caine: I hear the water, I hear the birds.
Po: Do you hear your own heartbeat?
Po: Do you hear the grasshopper which is at your feet?
Caine: Old man, how is it that you hear these things?
Po: Young man, how is it that you do not?
(From Kung Fu, an American television series in the early ‘70s)
Priorities. What are we missing? What are we neglecting in our attempt to do it all?
Life is a funny thing, everyone stretched so thin, pulled like taffy over and over, often to the breaking point, across a variety of needs, requirements, duties, dreams, wishes, desires. Some important and not so important, some depend on the loudest voice at a given moment or many times the silent tug of your heart. The arithmetic of regular lives, lives before something happens, life before Duchenne.
It’s strange. I have no memory of life before Duchenne. I think those days must have been carefree, relaxed, fun. At least the word Duchenne did not begin and end every sentence, every thought, every experience. When the word Duchenne enters the equation, the adding, subtracting, multiplication, the arithmetic of our lives changes dramatically. The measure different, as we work against a predicted timeline, with increased needs, escalating schedules and spiraling demands. The ways we measure, the priorities we establish are our own, for each family, neither based on Pubmed or Facebook, our own reality.
It is a personal choice, the right choice and necessarily very individualized for each of us. We have the option of burying ourselves in the busyness of life, of schedules, of commitments, of making change or trying to find an appropriate balance for ourselves and our family, an N=1 state of equilibrium, a steadiness that works for just our family.
But…close your eyes. What do you hear, grasshopper?
Pat Furlong is the Founder and President of Parent Project Muscular Dystrophy. Follow Pat at her blog.
Prioritizing between Needs and Needs
If I thought this were my last day to live, rather than someplace around the middle of a much longer stretch of time, for right or for wrong, I would make different choices with how I spend my time. If I really believed that this were my last day on earth, I bet I wouldn't build anything or make anything or strive in any way. I wouldn't write an essay or plant a tree or raise money for Duchenne research. As an approach to life, the short term, "last day" style of living seems both unsettled and unwise to me. That road does not create happy long term prospects, grasshopper. On the other hand, if I spend all of my time thinking of the long term, planning, planting, building, making, striving, doing, then I am living at the expense of short term things that carry real value like playing, dreaming, sleeping, cuddling, goofing around, and doing nothing. My children need me to both work and play. I need to get things done and still have enough energy to keep going tomorrow. Ok, sensei, we agree that balance must be found on the middle path, with time enough for both busyness and quiet. But somehow I can know this in my mind, even be striving for that kind of happy medium, and yet still be pulled too far on the pendulum swing between extremes. I am oscillating between needs and needs.
My initial reaction to the Duchenne diagnosis was to hurry up! If we've only got a few years together we'd better make the most of it right now! I love my son and I love our world and I want to show him everything wonderful immediately! But I am increasingly feeling the need to retreat from this position. I can't continue living my life in crisis mode indefinitely. We have to somehow carve out appropriate spaces for managing our lives. The fact is that we simply can't do it all. If we want to live full and happy and meaningful and virtuous and passionate lives (compressed by Duchenne), we are going to have to create clear goals and get organized. We are going to have to delegate. We are going to have to let some things slip by untried. I find it hard to accept these ideas of slowing down and asking for help and saying no. I want to feel powerful and successful on behalf of my son in our fight against Duchenne's gravitational pull. Feeling busy and active is a natural way to compensate for my equally natural feelings of powerlessness and failure in the face of Duchenne's irresistible heaviness. Yet there must be a harmony to be reached even here, a way to float while we fall, like planets orbiting the inexorable reality of life with Duchenne.
When we first assumed our responsibilities as parents of a kid with Duchenne, my family and I found the increased demands on our time and energies to be oppressive. Our whole lifestyle changed from a laid-back, do-less-love-more inward focus kind of place to a busy, do-more-a-lot-more outward oriented race against the DMD clock. We hated and blamed The Schedule, filled to the brim with doctors, therapies, activism, appointments, and events. But now that we've been living with and managing The Schedule for a few years, we have gradually come to rely on and even to lean into it. The Schedule props us up when we would otherwise not know what to do. It distracts us and comforts us from our fears and our failures. It fences us in, which is good when it encourages us to feel that we're safe and not flying in every direction at once, and much less good when we're feeling like we are trapped in a tight spot.
The Schedule forces me to work hard at being organized and efficient. We plan just about everything that can be planned. We discuss the work that needs to get done. We evaluate just exactly how far we can push ourselves. We keep a big calendar that shows our weekly and monthly plans. We've got our daily rhythm. We plan our meals. We schedule our grocery shopping and coordinate our errands by timing and location. We try to maintain good habits that help us along-- things like hanging up our coats and hats, and putting things away when we're done using them. If I happen to have 5 minutes free, I do a 5 minute job. These things are great if they are done in service to our loftier goals but we need to remember to use our time well and wisely, rather than merely efficiently.
One of the blessings/curses of Duchenne is that we are living a conscious life. Essentially, conscious living means taking a worldview where everything is an opportunity and a choice. We are forced to decide for ourselves the meaning of our lives and the virtues that create and enable a good life. Time and money management and the hard choices that come with them are part of the deal. I find myself having to evaluate the merits of almost everything I do. I must choose between washing the dishes right now or reading a story to my children. We all know that, in terms of real human value-- spiritual value-- spending time with our kids is "more important" than washing up, and yet, if we don't wash up, we face real and ugly consequences including not having the time to spend with our kids because we have to wash up! We all know from experience that the longer we let the chores pile up, the harder they are to do. We have to ask ourselves which need is more important to us at this moment, the physical need for a safe and vermin-free home or the psycho-social needs met by paying attention to our kids?
This need to choose between needs becomes even more challenging when the consequences appear to be more severe. If it comes down to choosing between losing sleep or losing our job, it is easy to reach for the coffee pot. But how can we even begin to evaluate which need should come first when it's an unanswerable question? Which do we choose when we have to either fix the van or fix the wheelchair? What about when it's muscle clinic versus a sibling's eyeglasses? How do we choose between the music lessons that bring joy to his life or the physical therapy that extends it?
We can't possibly make "The Right Choice." There isn't a single, obvious, right choice that can be made. We have to just grit our teeth and make a choice, any choice, though preferably a choice that doesn't compromise our values to the breaking point. Preferably, we can make a choice that allows our lives to meander in and out of the middle way between quality and quantity, between hurrying and delaying, between the short term and the long.
For me, some general principles have emerged. I'm beginning to be able to synthesize new values, taking some things from my life before Duchenne and some from my initial reaction to the diagnosis. These are the ideals that I look to for guidance: People before things. Family before career. The inner life before the outer. The small and the personal before the great and universal. Food before medicine, water before food, air before water; that is, first breathe, then nourish, then heal. Those things which move us all toward comfort, safety, and peace. Truth. Love. Service. Joy.
Prioritizing is the process by which we fit the puzzle pieces of our lives together. Only this puzzle doesn't have a set picture on the box. We are creating the picture of our lives as we go along. Each piece offers us the opportunity to evaluate and ask ourselves which choice better serves the life I am trying to create, the good life, the life that is right for me. If it doesn't serve you, don't do it. Sometimes finishing the chores serves us better than playing and sometimes playing is the better choice. Sometimes the best thing we can do for our children is to take care of our own needs first. Perhaps everything is important, but in each given moment, not everything best serves our best life. Sometimes, maybe even most of the time, the best that we can do is try to make good choices in the moment, let our planning serve our living, hope that our children will understand and forgive us someday, and just let the rest go.
Ivy Scherbarth is a Colorado/Wyoming FACES Coordinator for PPMD. Follow Ivy at her blog, My Son, My Rain: A personal, biased account of one family living with Duchenne Muscular Dystrophy.
Pat Furlong, Founding President, CEO
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