Only Anecdotal

No numbers, just stories

Posts Tagged ‘communication

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

Communication

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The last week in the consumer trenches has felt like an exercise in unknotting strands of random advice, help, and procedures, trying to figure out just what has happened, and what is going on now.

A disabled woman is left stranded as her doting husband reverses roles from caregiver to care-receiver. The woman is alone, though not completely helpless, but she misses him so much–and vice versa–that life stops for each one of them when they are apart. In her house, I can only imagine all that he has actually been doing for such a long time, but finding trustworthy help in the home has been a more stressful process than going without it.

Another woman is telling me bits and pieces of difficulty not related to the major surgery that has made the bits and pieces now incredibly relevant. As I listen to her, and she tells her story again, I begin to wonder why this surgery happened in the first place–it was preventative, and not expected to significantly lengthen or improve her life. Or if she really did need some sort of intervention, why this particular procedure? She tells me that a year ago she was mowing her own lawn, and now says that she would never have gone to the hospital that fateful day if she had known. She was told at the time that there was no choice, and no time to wait. But there always is a choice; an informed one would have been fair to her.

Another person is trying to negotiate a balance between mental health systems and substance abuse systems, with very little success. One disregards the other–a familiar story. Insurance is denied for the things that might help the most, and I am left wondering how on earth a fairly young person–post-IDEA–could have made it through the school system without anyone doing something. And yet, he was passing his classes; he was not violently disruptive. It happens all the time.

In all of these situations, the people involved–consumer, client, patient–were all very well aware of how they felt, and what they believed they needed and wanted. In none of these situations were they able to get it, and to be honest, none was doing very well.

Many people have told me that getting older is difficult because so many people you love die, because your body refuses at times to cooperate, because the rest of the world stops listening. I am fairly sure this is all true, but I think it is true of many people who find themselves in the vulnerable situation of illness, disability, or actually, any sort of vulnerability. We will all find ourselves in these situations at some point of our lives.

I have found myself more and more frustrated at the level of advocacy we expect people to exercise when they are in these vulnerable situations–an entire education on Healthcare 101, or Social Services 101… no, make that 501. It is not enough to understand the mere basics. But for what? I find people everyday who have services, but no sense of why they come or who sends them–and the worst situation: what happened, when things fall apart. I have spent hours during the last week on the phone with various pieces of puzzles in people’s lives–trying to get some sort of response, but often to no avail. It is not even enough to be vigilant, sometimes. But without that vigilance, most people end up in far worse predicaments. What a shame that we cannot be clear and try to do our best to make sure people are heard and get what they need, what they are paying for.

In the end, assumptions and best practices may result in confusion, accidents, overdoses, high anxiety, death. Tragedy, preventable if for want of better customer service, and more honest, unbiased, balanced communication.

 

 

Written by Only Anecdotal

1 Oct 2012 at 9:46pm