Only Anecdotal

No numbers, just stories

Posts Tagged ‘love

Reminders

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Today was the first pickup day at Stearns Farm. I had completely forgotten how I had grown to love garlic scapes last year, but there they were, reminding me of how glorious they are!

Stearns Farm is a beautiful CSA in northern Framingham. I first knew of the farm from the mother of one of my daughter’s preschool friends, way back when. These friends lived on a nearby street, and told me all about the lovely flowers available there. I drove by several times, and then saw the opportunity to work for a share. It was the perfect opportunity for my son at the time, and I quickly fell in love with the community there. We joined as paying members last year, and bought in early this year.

Now, the vegetables and herbs and flowers and occasional berries are a highlight of my week. But even more precious to me are the gems of moments that have often caught me off guard. Last year, I recognized an old neighbor. I loved chatting with people: people working, people picking out their weekly share. And today, a woman called out to me, by name. She knew me, and reminded me of how we met.

I was working at the time as Options Counselor, in the position that originally inspired the creation of this blog. The woman told me that I had visited her aunt–it must have been over five years ago. Somehow, she knew my name, and remembered what I had said, and I remembered her face, and her kindness. I also remembered her aunt–who is doing well now, I am happy to say.

I do miss that work. I miss the job at the Consulate, too. I miss working (“working”) where I can not only interact with people, but where I can actually make a difference in their lives. It sounds trite. But I thrive where I can work through bureaucratic details in systems that in all their stupid awkwardness really are designed to make life better for people–as hard as they make it for anyone to figure out how. Figuring out how is my forté.  Most of all, I miss hearing people’s stories, and understanding what they need to fulfill their dreams, or just to live a beautifully ordinary sort of life. It was creative work, or I could think of it in creative ways as I cleared the brush and wove a way through the labyrinthine rules and structures of resources. When I felt an injustice could be remedied, I wrote about it–often, here–or I spoke about it, publicly. I always felt that naming a right makes it real: and something real to fight for. I felt honored by the trust and love in our communities, the individual people who both needed help and wanted to give it.

It is easy to wax poetic about work in the disability field, and the privilege to be paid for good work, with others working for human rights. When there were not enough resources for the many individuals I met, though, it was very hard to stay upbeat. When I could not manage financially for my family on the income I earned, it was even harder. The lack of possibilities to earn a sustainable iliving is exactly what made me leave that work.

So, I left. But every so often, in a grocery store, in the library, at Stearns Farm, I run into someone who knew me then, and I am reminded that there is a bigger world that loves beyond the greed and horrors we see so often in our society now. I am inspired to work toward this love, to love more, and to find a way to survive while doing it.

I write now to return to this generosity, to fuel it, and to remind myself that it is the most important thing I can do in my life right now.

 

Written by Only Anecdotal

19 Jun 2018 at 6:00pm

My Inspiration

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My mom died around midnight Saturday night.

She had been struggling for many years with a number of chronic conditions, all beginning with a diagnosis of rheumatoid arthritis in her forties. Over time, things became harder and harder, her lungs and heart weaker. She rallied forth, every time. She was strong, invincible I thought. But the cold she caught in a short-term rehabilitation unit was finally too much. An infection developed, and within two days, her kidneys failed. There were no heroic efforts to intubate or dialyze–my mom knew a long time ago that she never wanted those things. She talked to us for as long as she could, until she faded, and never awoke. I will always laugh as I think that she said she was sorry she would miss Downton Abbey this week.

My mom died an ideal death. The one blessing of losing my dad in 1985 was that it gave us plenty of time as a family to discuss death, and not to fear it. My dad had lung cancer, and was sentenced to certain death over three months before he actually died. In that time, we as a family spent our time in an endless cycle of work, dinner, hospital, home. Repeat. Several panics before the end–this is it–he pulled through, only to writhe in pain. I remember even as a twenty year old thinking that the fears of morphine addiction seemed ill-placed, as did the very arrogance that surgery on a dying man is a good idea. As I recall, we were never given a choice of what should happen, and if we were, we were probably still seduced by the notion of medical miracles. The last words I remember hearing from my dad are “It’s all right. It will be over soon.” He must have seen my frightened face, my anguish at the intensity of his suffering. I avoided all doctors and hospitals as much as possible–for years–until my own children were born.

I have spent an enormous amount of time in hospitals since then, in all sorts of situations. I have to say, I am most often impressed by the care and knowledge I see, and my mom had remarkably good care at the Cardiac Intensive Care Unit of St. Luke’s Hospital in Kansas City.

If the acute care of her final days was beyond excellent, the long-term care options preceding that time were filled with anxiety and frustration. Too little money to afford assisted living or private home care, she pieced things together, accepted mediocre services until they became more cumbersome to allow than to refuse. (The one exception was the man she found to drive her on errands. His name is Diego, and he could not have been kinder.) My mom worried, a lot, and she became sicker.

I was frustrated, because I am supposed to know my way around this. But then again, looking at the fantastic facilities where my mom died, considering the costs of those heroic efforts that many people do try, thinking of the enormous blessing that my mom’s Medicare and supplemental insurance will pay for it all… I imagine we can create long-term care services of similar quality. As we see the shift in the years to come from the sexy world of specialties and surgeries to primary care and prevention, we will feel the difference in our lives, all of our lives. We have to.

Written by Only Anecdotal

4 Feb 2013 at 5:26pm

Help!

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The theme this week is around people who need people. And while this is lovely in an ideal world, I have to say that in this one, these are not the luckiest people in the world.

These are not unfamiliar thoughts on this blog, as I have often discussed the woeful lack of community-based, long-term care services. If we did build a society in which we realized that people needing people is a natural, human instinct, we would not have built communities that value privacy and independence above the community itself. Twisted, wrong interpretations of mottoes we hold in our collective psyche: Live free or die. L’enfer c’est les autres. Our misery comes not from having to tolerate other people, but from our refusal to do so.

So, enter the assisted living. I have visited many an assisted living community, and I must say that they can be lovely. In most, I enter the lobby with the feeling that I have entered a grand hotel, often with happy hour, and brunch–with carving station. Also, mostly, with a homogenous population of a certain age and a certain income bracket… and a certain functionality, too. A little too poor, and it’s the end. A little too incontinent, and it’s time for the nursing home. I struggle with the notion of these restrictions, and also with the notion of yet another sequestering of a population in its own community.

Several years ago, I had the opportunity to participate in a three-weekend advocacy training sponsored by Massachusetts Families Organizing for Change. Tagged onto a fellowship that I had through the Leadership Education in Neurodevelopmental Disabilities (LEND) program, the experience was life-changing, particularly because of the people I met. But also because of the work we did. In one exercise, we sat as friends and family to design the ideal community for people with disabilities, for people we love. The first section involved looking at pictures of various houses. One was a typical colonial, not unlike my own house, with four windows, two up, two down, and a lovely little set of stairs leading to the front door. I saw that my mother would have enormous difficulty visiting, as she has trouble with stairs. So, we went on to discuss this, and so many other issues that come up. For wanderers, it would be such a relief never to have to worry about traffic or strangers, at least within a certain area. And what if we made it easy for service delivery, such as personal care? If people lived close together, it would eliminate transportation time and cost. If there were developmentally appropriate entertainment available, so much for the better. And so on. Before we knew it, we had created… Fernald.

Or something like it. Perhaps nicer, an assisted living sort of community, maybe. McLean Hospital, perhaps. But not the sort of community that has space for all of us, together. We anticipate the dangers of the outside world, and feel an enormous need to protect, to seclude, rather than to figure out ways to include and accept.

And so in our urgency, we reach that certain age–or someone we love does–and the time has come to find a place beyond the world and its children, its chaos and its property taxes, the hectic pace, the long walk to the mailbox in the snow, the laundry, the everyday.

We think of luxury in this way, an escape from the everyday responsibilities, but without this, without meaningful work, existence, can we remain whole and healthy? Or are we simply waiting for death?

In fact, I suppose we could argue that we are always waiting for death, but in reality I doubt that many in this country’s mainstream culture contemplate this notion at all, much less on a regular basis. And so we separate hints of it from ordinary life, this cultural obsession with youth, appearance of health, wealth… I fear that our desire to care, to help the needy, to seek solutions elsewhere, are all ways to separate ourselves, too, from the Other, the near-dead, the sick, the Us in them.

This week, I logged into my database to find an enormous number of consumers still flashing open files at me. I scrolled through the names, trying to remember the stories, and pictured some back porch, a kitchen table, a white dog, the scent of bacon and coffee still lingering from the morning, life, the stories, some waiting still to be told again, and lived, too, all distinct and yet the same in their foothold in this life, the one that we wish to tidy, to sanitize, to hold onto a heartbeat if not a heart.

I sat with three families in two days recently, and listened to the tremendous burdens they face as they attempt to care for their parents who cannot afford the luxury of assisted living. Is a nursing home the only solution? Not cheap, but at least feasible in the twisted funding structure of most state’s Medicaid programs, and their ever-present, post-Olmstead institutional bias. These frail family members no longer fit where they were, as they were, and yes, there are surely ways that they could, that we could fit intergenerational, inter-ability lives together, better. But for most of us, now, in a crisis, building a new world comes not so easily, not so affordably, not so quickly. We wish to include, but it is so much easier to protect.

Written by Only Anecdotal

27 Aug 2012 at 8:58pm