Only Anecdotal

No numbers, just stories

Posts Tagged ‘patience

Twenty

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He was the first of my children to be born in Vermont, about five miles from the Canadian border. Less than a year into a new life in the Northeast Kingdom, we drove the hour in moonlight to a quiet hospital in the middle of the night, and my second boy was born.

I had no idea then how much my perception of the world would change within the next year–hadn’t it already with his brother? Doesn’t it always witha child?–but no. This was a child to make me throw my “What To Expect” books clear into the backyard snow the next winter. That quiet, sweet, beautiful boy did learn to walk, yes, taught by a horse when he was four (true story, yes a miracle). He learned some things, and not some things, and everything more slowly than those books said he was supposed to, more slowly than his brother, and his sisters, and he stayed young–as the developmental experts said. Say. He did not learn to talk, not yet, but still, over the years, he has told me so many things.

He told me of the important qualities to look for in people: love, strength, patience, honesty, connection. Not the loud, not the flash, not the big promise nor the fear. My son told me how to see, how to fight, how to love, how to choose, how to understand the smallest of things, and the quietest, and the most important.

When we think of the abrupt changes that can happen in a few words, a diagnosis, a guess, a realization that, alas, everyone else is growing up all around us, it is easy to think of what we did expect, what was supposed to be, sounds trite to say it, since we all eventually face some version of this, sometime in a life.  He is why I am who I am now, and on days like this, when I think of how far we have come, I have cake and open presents with him, and am glad to see him smile. I imagine life through his experience of it, and I hope/think it is a good life, so many changes, so much so hard to understand. It has been hard. No, I won’t lie about that. We face a future (yes, of course we think of it often)… well, didn’t we always face uncertainty and chaos?  Oh, my boy, I know that the best gift, today after all, is the one you have given to me. You give me hope.  Happy Birthday.

Written by Only Anecdotal

6 Mar 2017 at 9:32pm

Hot Summer Days

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This weekend was a lovely one, made all the nicer when I was able to see several friends. One group of us first met years ago, all of us divorced, and with children who have autism. We were talking Saturday evening about the paths we never expected, the challenges, the joys, the well-intentioned remarks from friends and family: “I just don’t know how you do it.” Well, you just do, and you learn. And most of all you accept it, this life. This full life, and the wonderful friends we meet in it.

Remembering the joy in our imperfect lives came at a good time for me, as last week was filled with the intensity I never used to see in summertime. In years past, referrals slowed, and people were more relaxed when I did see them. But this year, as most of the entire country is experiencing droughts and unbearable heatwaves, consumers I see are going through their own extreme situations.

I saw a man with a life-ending (not life-threatening, life-ending) illness. It is one of the rare cases where there is no wait period for Medicare for people on SSDI–and it is a rare situation where SSDI comes quickly, without appeal. In spite of this, he cannot access the medical equipment he desperately needs right now. And why? Because he moved from another state, and has applied and been assured he will get MassHealth Standard, but has been told he cannot have the equipment for sixty to ninety days, at which point, he probably will no longer be able to use it. Oh, and he cannot get a personal care attendant yet, either–that will probably take several weeks when he does have his insurance.

Another person was in a hospital, dying, if he has not died already sometime today. It all came about quite suddenly, and he was in the midst of making plans for his family’s future. It matters a lot in this case, you see: his biggest fear was leaving his adult son, who has mild developmental disabilities (read mild: not qualified for adult services).

Another man, also dying, is due to be discharged from short-term rehabilitation, but his family is exhausted from taking care of him. Their biggest need? a ramp–and sleep. Overnight services can be difficult to get without a substantial amount of money to spend, but not necessarily impossible. The ramp is not such a hard thing to get, but it, too, can be expensive. The man is probably eligible for programs that will help his family pay for what he needs, but paperwork takes time–and time is what he does not have.

All told, nineteen referrals later, I am left somewhat shaky and bereft, I admit. And then, I wonder what could change these sorts of situations. After all, people die. They die everyday, sometimes suddenly, sometimes quite slowly. But the biggest problem in all of this is our absolute refusal to contemplate death, especially when we are healthy. We have enough trouble discussing illnesses and accidents and disability, but death seems nearly imaginable.

It is a funny thing to consider. We have lived for a long time in a world where miracles happen–relative miracles when I think of the stories I heard from older relatives, from neighbors, from older people in rural Vermont when I lived there. Mothers dying in childbirth, their newborns then dying too without a mother’s milk. Pneumonia. Flu. Infections. Death seemed tragic, but not unfamiliar–and yet, even if we can prolong life now, it always ends. Are we just distracted? Have we figured out ways to see only what we want to see in our everyday lives? I wonder.

Morbid obsession is hardly the answer, but I wonder in the three situations I mentioned if the anxiety that the families are now facing would be the same if we were to embrace the finite joy of our lives, the possibility of abrupt changes, if we were to embrace the uncertainty that our lives always contain. The bureaucracy and confusion that these families are facing is very real., and particularly difficult in the face of serious illness–but also a very difficult system to change if the illnesses that precipitate the need for prompt services bring up subjects that we fear so much.

Of course, these families are reacting now with love, with grief, and with the best that they can give. But when a topic becomes impossible to discuss, it becomes isolating, as well. And this is truly frightening. It is the society in which we live that shuns death, that shields us from imperfection, or tries to make it pretty. I wonder if we would find it easier to discuss death if we felt the ugly and beautiful lives of those around us–the sick, the aging, the dying–not with pity, but with the true understanding that they are we.

Written by Only Anecdotal

23 Jul 2012 at 9:05pm