“Do what you can when you can until you can’t. Then rest easy knowing the haggard look of the man in the mirror has been well earned.”
It’s funny because these are words I tell myself all the time when I look in the mirror and try to accept the parts of me I wish were air brushed away. Most of the time, I think I accept a reasonably accurate view of myself. Still, I do all of this with years growing up knowing who I am. I know my parents, and I recognize them in so many parts of how I live. I know where I got my protestant work ethic, and I recognize the roots of my ever questioning of assumptions. I see the roots of my drive.
For my children, I suspect this will always be harder. While they may come to accept themselves, I have no illusion it will be as easy for them. For example, every few months we have a conversation with O after he says his birth parents are dead. We do not know this and have no way to find out. Still, it is touching when he releases a balloon into the sky for his “dead” parents or grandparents to let them know he is thinking of them.
Every now and then we have one of those humorous moments when we are hit over the head with our kids’ efforts to define their place/group in society. This week’s moment was a dinner conversation between A (oldest daughter) and J (my wife):
“Mom, am I half-African and half-American?”
J: “No”.
A: “Then why do they call me African-American?”
I can only hope A comes to realize she is all American and all African-American over time along with everything else that she uses to define herself. Her definition is hers to make. Maybe with acceptance, she will no longer obsessively pick at her hands. Maybe then, she will find peaceful sleep at the end of her insomnia. Sadly, such a day seems so far away.
If you said this was a picture of a girl at bed time who will take 3 more hours to go to sleep, then you win the prize. At least her new dog has learned her role in the night is to jump in bed and try to teach A how to sleep.
First food at new house straight from A’s hand in an effort to win Peppa’s heart.
Hope begins with a belief in an ever-changing world. It requires us to imagine a state of being other than we currently experience. Now some days, hope is a wish for things to stay the same, like the first time seeing a look of affection in a lover’s face. Some times hope is for a change in our existence, even if the chances of such a change happening is slight. I think of the lottery, aka, “the stupid person’s tax” as a prime example of such hopes. Some times our situations lead to hopes of both types simultaneously. Every time I refuse to wish away the pain of my MS, it is because of hope. I hope the feeling of pain means I might one day feel as much pleasure as my current pains. Of course, this hope is also a fear of change as my real fear is losing all sensation. Therefore, my refusal to wish away the pain is in part a hope for beneficial change and a fear of a change that would preclude the better alternative.
Still, all hope is rooted in a belief in the world’s change. I will always remember my two lunches five years ago with Michael, the homeless man who had no concept of what would make his life better. (Michael). He remembered having a family, but both times did not even think of having them around again as something that would make his life better. He was not particularly unhappy as I would expect somebody without hope to be, but this is instructive too. Those who have truly lost hope can no longer imagine “better.” So long as one knows the opposite, despair, one knows what is missing. The truly hopeless lose the concept of change. For Michael, “the world is good because the word is good, and the word is good because God is good.” That mantra was his guiding philosophy as he lived on the street, and a concept of change was nowhere in it.
I think of this some days as I ponder the question of “acceptance.” Should I just accept the limitations my MS places on my life? So often, I read and hear of MS patients having to grieve for, but ultimately accept, their new limitations. I know the psych 101 answer always has acceptance as the last stage of a healthy grieving process, but I keep coming back to it as the warning sign above the gates of Hell in Virgil’s Divine Comedy, “Abandon all hope, ye who enter here.” For me, acceptance of “what is” means giving up hope for a better alternative than what I currently face.
Acceptance is forgetting the possible alternative experiences and no longer acting on their possibilities. Yes, often the efforts are a complete waste. They probably seem foolish risks to many as the outcomes are easily predicted. The costs of abandoning hope may be more subtle, but are they any less?
As parents, I often think hope is one of those things for which we are most responsible when it comes to teaching our children. My oldest daughter still hopes to do many of the things her friends find easy, like monkey bars or math or… These are things with which the smart bet would be she would probably struggle. Still, I look with pride every time I see her falling from the monkey bars or using a number line. When she came to us, we did not know if she could grow to be more than a blob, but now she is a nine-year-old girl nervously making her way through life as best she can. If she tries and fails but continues to try, who is to say she will not succeed in some of things she wants to do that seemed impossible.
For months, we knew our neighbor’s dog with which A had slept for the past 10 months would be leaving us. The anxiety attacks she has had lately have been escalating, and in truth, she had reason. Two colonoscopies/endoscopy procedures and a ton of laxative meds in the last couple of months to try to determine the source of and treat her slow motility is a lot to endure. Even before our neighbors dog went back to her owners, A began asking for a dog of her own, who would love her and could rely on her. Her hope was to have the best bond with a new dog. Of course, we let her pick the dog, so there was no shoebox of poo. In a moment of humor to me, she did bring up the story in conversation. Part one of her hope, to get a new dog, has been realized. Part 2, to be well bonded with the dog, is a work in progress.
It seems crazy to bring the canine census in our home back to three, but there is much we are willing to do to preserve the hope and mental well-being of family. I have no desire to see any of us retrace Virgil’s trip through the gate.
One birthday wish came true. A got a new dog to sleep with her by night and train by day.
As a side note for all those dealing with either their own disability or a family member’s disability, there is a new web site dedicated to promoting places with good access and services for the disabled. http://www.disabledonthego.com/
It will only be as good and useful as we make it, but how many of us dealing with disability wish we knew ahead of time about possible destinations?
