Everyone is in a race against the clock these days. Nowhere is that more the case though, than in this community. Dealing with Duchenne, on top of everything else life throws at you, can leave you feeling overwhelmed, inadequate, and exhausted. In their monthly co-blog, PPMD President Pat Furlong and Colorado FACES coordinator, Ivy Scherbarth discuss the ways we cope with this ticking clock while keeping our families happy, our son’s healthy, and our sanity in check. Read this month’s co-blog and share your thoughts.
The Duchenne Box
The Duchenne Box. The invisible pieces of our lives. The place where worries live, where the map of our life is designed, modified, changed, scaled up or down, the secrets hidden from others because they are impossible to explain, impossible for others to fully comprehend – the definition of Duchenne and all the strings that come along with it.
We all have such a box. It lives somewhere in the depths of our soul, the place we go to every day, every moment, the place we live once the word Duchenne enters our house.
There are days when the Duchenne box is impossible to conceal: an arbitrary visit to school, the children all running and your son behind (by what feels like miles), the clinic visit where changes are discussed and your knees shake uncontrollably, the kind neighbor with 'how are you?' and the expected response 'I'm fine' when you aren't.
Life feels heavy carrying around the burden of Duchenne, trying to manage the ordinary things, regular things, the things of life that have to happen in order to get through the day: breakfast, lunch, dinner, snacks, groceries, laundry, shopping, homework, errands and all that's attached to those activities, caring for, caring about, taking time, playing, smiling, drying tears, tenderness, making peace.
And in fulfilling all of the needs and wants of life, trying to find a safe place to tuck away that Duchenne box now and again, that place in your heart and mind, where you are able to let it rest, hide it, if only for a few seconds or minutes. Where you can see around or over the box and see the "sun," yourson that brightens your day – when he giggles for no reason at all, finds joy in a puddle left after a rainstorm, and loves with his whole heart.
Pat Furlong is the Founder and President of Parent Project Muscular Dystrophy. Follow Pat at her blog.
Getting It All Done
I know that it is not just me:
How is it that I cannot find time to take care of the basic needs of my family like grocery shopping, laundry, washing the dishes, and cleaning the house? How is it possible that I don't have time to do a five minute, once a week job like watering the plants? How is it possible to be this busy and yet still be constantly behindhand on everything I have to do?
In the old days, four years ago, before I knew the word Duchenne, I used to feel like I had plenty of time. I used to really believe in the virtues of taking a long view of things. I used to say, "Don't worry about this small thing that has happened to you. You could live to be 100 and you won't even remember this little disappointment." I used to expect to have grandchildren who would inherit the benefits of the hard work I do today. I was satisfied to be planting the seeds of great trees for them.
Time is not a thing I think of as being abundant anymore. I see our time as being sharply limited, horribly pinched by Duchenne. Nowadays, looking very far into the future means next month. I don't really expect to have any grandchildren. I don't want to think about living to be 100 because I don't want to think about how very many of those years will be after. You know, after, as in, you know.… I don't want to face a single minute of life on earth without my son being here to share in it! I am afraid to think about my kids growing up because nowadays I just don't have the old constant and unshakeable faith in that possible reality-- the reality where my son grows up and gets married and has kids of his own. A taking-the-future-for-granted life is over for me. I can't put a brave face on the deepest chambers of my heart so easily. And I can't just forget about all that angst and fear either. All I can do is kind of set it aside, in a special mental box labeled "Duchenne" and try to walk away from it for a while.
And that takes work. It takes time and energy and effort. You just can't see it happening from the outside. Moving on from the trauma of diagnosis is the kind of work that wears me out even though it is almost impossible to articulate why. Maybe trying to explain it is part of the reason it is so exhausting. It can be very hard to talk about the burden of the invisible, the deeply personal, and the cosmological. After the catastrophe of a Duchenne diagnosis, you have to reinvent the nature of the universe and the meaning of life for your new self. It can be very difficult to explain to an outsider why you're still having such a hard time pulling yourself together after years of working on it every day.
We are survivors of a completely invisible natural disaster. The moment of diagnosis is like the touch down of a tornado, destroying everything that sits directly in its path. Our dreams, our goals, our plans, our very selves are gone. But somehow it hasn't actually killed us, and so we have to find ways to rebuild. But rebuilding isn't quite it because we actually have to build anew. We are starting all over again from scratch. Like immigrants who have landed on a foreign shore, we have to learn a new language and customs, learn a new history, learn to advocate for ourselves, learn to accept ourselves as permanently separate or assimilate. Oh, and, I believe that I mentioned this important factor already? Our "immigration" process is completely secret because it all happens inside of our own heads. Our parents, childhood friends, neighbors, etc. have no idea that this has even happened to us unless it has also somehow happened to them. I cannot overstate the vast significance of the fact that no one can see what is happening inside of us. Somehow, having it be invisible makes the people around us, and even our own selves, want to dismiss it as insignificant. It's all in our heads, to be sure, but that doesn't mean it isn't really happening or somehow isn't very important.
That's an awful lot to think about while the business of life continues on around you, not only without pause, but in a horribly speeded up kind of way. Suddenly, we have a lot more incomprehensible draws on our precious time and energy while we simultaneously take on a tremendous amount of new practical work. We still have young children when we get the diagnosis. They didn't change at all. They still need us to reassure them and love them and tuck them in at night and make their lunches and remind them to put on a coat, for crying out loud. It makes me feel that not only am I Late(!) all the time but I am on the strictest and most horrible of literal deadlines. I have so much of the world to show to my son in so very, very little time! How can I give him the very best life when we all expect that life to be so short? And if you're like me, and feel compelled to finish your work before you play, the crisis of getting the groceries in becomes a reason to panic in itself. If I can't play with my son until I do the shopping and I can't shop until I write the list and I can't write the list until I have the mental space and I can't clear out the mental space until I have a solid cosmology and philosophical/spiritual basis for human existence in the face of Duchenne…!?!!
I feel like I am not only panicking, but I am also constantly distracted. Do people whose faith in God/life/reality remains steady in the face of Duchenne manage to get their houseplants watered before they are fatally desiccated? Are there people whose faith in God/life/reality remains steady in the face of Duchenne?
And what about those days when I just naturally wake up in the morning and I've somehow managed to get enough sleep and the sun is shining and I have nothing scheduled for the day and there are fresh strawberries waiting for my breakfast? Because those days happen too, just not as often as they used to. Those are days that take another kind of mental discipline altogether. Those are the days when our "Duchenne" box has to be shoved into a deeper, dustier corner in the attic of our minds. Those are days when we have to push ourselves to remember that our kids are still kids and they need us. Those are days when we have to make play a priority or we are robbing our children of what childhood is all about. Those are the days when we throw on some dirty clothes, pack the strawberries into a basket, squeeze our growing boy into the bike trailer and ride down to the river and sit under the new-leafed willows and get sand between our toes and in our sandwiches, and appear for a few hours in public to be relaxed, unhurried, and happy. If we're really lucky, we may actually even feel relaxed, unhurried, and happy for a while. Those are the days that we can give to our children as a gift, right now, wrapped in the ephemeral beauty and luxury of having plenty of time-- time to be, time to play, time to dream and grow, time to really live.
But then we have to come home again and make supper, and feed the cat, and wash the dishes, and bathe the kids, and throw a load of just underwear and socks into the washing machine (because we still haven't gotten the laundry done properly), and find the school lunch boxes, and look at the calendar, and write the grocery list, and be ready for the week to come, and collapse into bed at 10 or 11pm and hope against hope that we all wake up on Monday morning healthy and well rested enough to keep on keeping on the daily grind.
Looking at the calendar was in that list. What am I doing with my time besides worrying about the inchoate and ultimately unknowable? When I'm down at the river ignoring it all, just what am I taking a break from anyway? My calendar does not look like a cheerful Mother Goose rhyme, with a single task for each day (Monday wash, Tuesday iron, Wednesday mend, etc.) My calendar is full of things like doctor's appointments, PT, OT, swimming therapy, massage (for my Duchenne boy only-- never for me!), horseback riding therapy, marriage counselor, school psychologist. There's also all the "normal" stuff we do like work, school, music lessons, dance class, volunteer. And then there are those things that we just can't say no to doing just this once like look after my sister's pets for a few weeks while she's out of town, go to that informational evening about raising kids with disabilities, participate in that once-a-month friendly meet up group, spend a few minutes on a beloved hobby, attend that fundraiser for our local charity serving people with disabilities (they're serving us, after all), welcome a house guest for the weekend.
And then on top of those things, there are a few other projects we do relating to Duchenne. Do these sound familiar? Buy gear (like a wheelchair) and have it fitted for your son. Buy a van. Convert the van for accessibility. Design and build an accessible house or remodel an existing home. Move to the new, accessible house and/or live with construction guys in your remodel for 6 - 12 months. (Or, gasp, do the remodel, piecemeal, yourself!) Travel a couple of hours each way to the Neuromuscular Clinic 2 - 4 times a year. Participate in a clinical trial. Go to the PPMD Annual Conference. Organize and/or participate in at least one Run for Our Sons/Coach to Cure/MDA walkathon/Fill the Boot Campaign. Go to the PPMD Advocacy Conference. Lobby Congress. Participate in other fundraising events like wine tastings, golf tournaments, silent auctions. Go to FACES events. Nurse at least one child through major surgery and recovery, often more than one child and more than one surgery. Set up and/or update an IEP. Agitate for at least one public place you have to go to a lot to add accessibility features. Go on a Make-a-Wish trip. Make your own Make-a-Wish trip and go on that one too…
I'm not even going to write about our daily caregiving duties. Let's just discount for a minute all the time we spend with helping our sons get up, get dressed, get toileted, get clean, get stretched, get medicated, get fed. Let's not factor in how much time we spend organizing outside-of-the-family caregivers. Let's not even go into how long it takes to deal with irresponsible caregivers or gear that breaks down. And let's also put aside how much time we spend on researching DBMD issues or trying to find support on Facebook. And for pity's sake let's not talk about how much time we spend driving around town or who is looking after grandma.
So, how is it possible to be this busy and yet still be constantly behindhand on everything I have to do? Oh, wait. Maybe all that stuff we do because of Duchenne really is an unmanageable amount and I'm not just "mooning about" trying to figure out the meaning of life all the time. Maybe I'm in a panic because there really is too much going on.
Maybe this is the also partly the result of nothing feeling optional anymore. We used to talk about the differences between needs and wants; we could prioritize our lives to meet our needs and occasionally accommodate some of our wants. But with our Duchenne colored glasses on, we see all of the things we do as being necessary and essential, don't we? We are now in the untenable position of having to prioritize and make choices between needs and needs. Of course when everything is a need and our time and energies are limited, needs will slip through the cracks and go unmet. We are living our whole lives in crisis mode.
Different disability communities react to their situations in different ways. It is interesting to me to see that the DBMD trend is to grab life by the horns, hold on tight, and ride this monster to as many fun, exciting, life-affirming, and service oriented places we can make it go. This is a choice we are making as a community, this lifestyle of working and playing as hard as we can. I admire this choice in general but we could make other choices, and of course, some of us do. Maybe it is a matter of tweaking the schedule so that we can satisfy our need to make sense of it all, breathe, and then go get those groceries, not in a panic, but in a calm and efficient manner. Maybe, from time to time, we can make a quiet moment in which to contemplate. Or maybe sometimes it just all comes together in a great big mishmash, and we have one of those "aha" moments that give deeper meaning and a sense of belonging to our lives even in the midst of everything else that is going on. Maybe there's a reason why some grocery stores are open 24 hours a day and cactus makes such an attractive houseplant.
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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