I am sipping a locally made blueberry kombucha in the Cocoon, Hawley PA, and digesting a wonderful vacation. Owen has been at his Camp Loyaltown in the Catskills for ten days. I needed a vacation from him, and he may have needed one from me, by the end of June. I drove off into West Virgina to go camping with our youngest son Oskar, and left Edward to get Owen to his New York camp and join us later. (Edward was not sad to miss a camping outing.)
But what does my need of a vacation far from my special needs boy communicate to you, my dear readers? What is your take away?
I am digesting something at the end of this vacation – something involving the tension between privacy and inclusion. It is somehow connected to anger, but also to fear. It also has something to do with body fluids.
“Say something, I’m giving up on you…” plays over the coffee shop sound system as I reflect. I felt like I was giving up on Owen, a couple of times those last June weeks. It had been a rough month or so. Whether babies or elders or those whose bodies or minds function a-typically, care of specially needy people is exhausting. Messy.
But — what to do about that mess? Does my need to get away suggest to you dear reader that Owen is an undesirable experience, an unlovable entity, someone I wish I didnt know? A person whose mess should be kept out of the stream of normal life? Should he be permitted to bother folks, to invade their space with his behaviors?
In the week before vacation, I found myself sitting outside the glamorous camping store REI in DC. Owen had disgraced himself in (on) the camping display. We ran to the toilet, and took care of everything, except for the wet spot on the super duper camping mattress that he sat down on as he realized the flood was coming and he didn’t know how to tell me. I turned to find him looking surprised, gripping himself, pee pooling, and both of us helpless to anything to stop it. It’s embarrassing. It’s aggravating. I have no idea how it is for Owen. I do not handle these things well every time – I fuss. We had just been to the toilet before this. But some days are just like that for Owen.
What struck me was a disconnect between the colorful painted diagram on the ladies bathroom wall about pooping in the woods, and the manner of the shoppers and salespeople that day at REI. With the exception of one couple and their baby, people we met that day seemed uncomfortable with Owen, with his flapping plastic, and then his inappropriate urine. When I told the sales woman about our accident (I am unremediably honest) she seemed polite but rigid, nervous. The white around her irises kind of stood out. She was not exactly down with it, man.
Sitting safely outside at the metal tables and chairs, waiting for son Oskar to finish his purchases, I watched a lady with a dog on a leash enter the store, and felt bitter. To be fair, that dog probably has better bladder control than my son. And maybe it wasn’t as weird as it felt to me, in that moment. Doggy poop we can understand. But human beings that can’t control their the functions are frightening. We want an environment that we can keep perfect and beautiful and pure. Pure nature, uncontaminated by people who dont fit in.
Well, frankly, who wouldnt want all bladders and bowels controlled? I would bet a hundred dollars Owen would love to be able to control his. He tries to. The various mechanisms nervous system and muscular just dont always function right. And in spite of everything that he doesnt understand, he is highly aware of the humor in most crisis situation.
But what’s your take away, reader? What about the impact of those who do not conform on others? REI has its profit margin to consider and protect. I support profit margins, which allow businesses to exist at all, and employ people, and provide goods and services. I also believe in private property, even though I am in the care of someone who does not understand that concept.
As I watched the multi-colored mist rise above Niagara’s Horse Shoe Falls two nights ago, I reflected how to write about this, and found another thread to the story when I remembered my friend Sherry.
Sherry is the very put together and organized mother of Katie, a young lady with Rett Syndrome. Looking at Sherry, as I often do over Thursday Coffee, is an enjoyable experience. She matches. Her hair is beautifully cut, her colors and jewelry harmonize. She is generally an inspiration.
However, looking at Sherry you would probably never guess the steel she is made of. Sherry is totally calm in the face of poop. Life with Katie has given Sherry some difficult and hilarious poop stories, which she tells with just the right amount of humor and brevity. She knows, or perhaps Katie has taught her, the value of both beauty/ artifice, and of human-ness, in its beautiful and unbeautiful moments. She is a tenacious fighter for inclusion for her daughter, in schools, and in life. Regardless of what it takes, she has no intention of allowing her daughter to drift aside, isolated, out of the active stream of life. Sherry also knows when to take a break and go shopping.
“Every job has its bitch, Wys,” my high school friend Paige advised me years ago, explaining how she could work as a nurses’ assistant in elder care, emptying bed pans. “You just have to pick the bitch you can live with.” What about when the bitch picks you? “Every job has its Bliss, if you can find it,” my homeopathic doctor advised me gently, as he helped me crest waves of frustration and rage during early years caring for and trying to understand Owen.
Once when Owen was a drooly fellow with a constantly damp shirt front, we spent a Thanksgiving holiday with my sisters family. One of their friends arrived for a visit, and he kneeled on the rug telling us about the frustrating holiday morning he had had. Owen wandered downstairs, entered the room and before I could stop him, he bent over this vexed and kneeling stranger, and gave him a slobbery kiss on the temple.
I didnt know what to think. I grabbed Owen away, at least partly horrified. I apologized. I expected him to be tolerant but grossed out. The young father and husband ignored my embarrassment. He touched the wet spot on his forehead with awe. “I feel like I’ve been blessed,” he said.
What if every time a person like Owen interrupted my life or yours, we both saw this as a blessing? Can we imagine a messy, irritating, and inconvenient blessing? A message perhaps from a larger Energy Source, that permits us experiences from which we can grow? Or, if you prefer, what if everyone looked at each being (human, animal) they interacted with as someone by whom they may be blessed, if they were open to it. Where is the bliss in dealing with that cranky receptionist, the smelly old man ahead in line at CVS? If your life or your home had been blessed by one of these individuals rearranging its contents — what is there to take from that?
I am learning not to get in Owen’s way. I believe he has work to do, that has little or nothing to do with me and my embarrassment.
The centerpiece of this roadtrip vacation took Edward, Oskar, and me to northern Wisconsin for a clan reunion. During the week we sprinkled my Aunt Rachelle’s ashes on the hillside with ferns, birch, and pine. As we stood there I remembered my aunt telling the story of the autistic young man vacationing with his family next door who wandered over, fiddled with and disabled her elevator so that on arriving at the lake she could not get upstairs to go to bed. She spent the night in her wheelchair in the garage. No doubt this event brought up both anger and embarrassment at the time — depending which camp you were in — but I heard the digested version, which was full of humor. Owen shares his Great-Aunt Rachelle’s sense of the humor connected with crisis and upheaval. Maybe being wheelchair-bound herself gave my aunt (and uncle) perspective on the issue, who knows. But I so appreciated her laughter. Although phrased as a cautionary tale to me, mother of another such trouble maker, the subtext felt like “Oh well. It is upsetting. But crazy upsetting things happen.” Warm salve for psychic wounds.
Like my son, my aunt was a complex person, a challenge to those who loved her, a colorful, multilayered personality. I will always be grateful for her telling of story of the boy who broke her elevator, for her laughter.
So, what is my take away as I get ready to reclaim my son from his camp, and take up my life as his care-taker, acknowledging both the bitch and the bliss of it? Every experience has its bliss, if you can find it, and unlock it. And should some unasked-for force open your door and traipse in, rearranging your furniture, maybe you too are being blessed — in some slobbery, messy, complicated and inexplicable way?