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.

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?