Posts Tagged ‘tragedy’
Marathon
As the helicopters and police cheers roads gathered here In Framinghaam, it was thrilling, as it always is, to watch the racers speed past.
This year, of course, is different. It will never be the same. .
A life can be so radically altered in a heartbeat. We all know it, and yet we do not. We do not want to believe that evil is behind it, certainly. And yet, sometimes it is.
I think now about the families, the wounded, those who saw too much, those who lost so much. Strength, and love… We need this, need it so much in this world.
Tragedy
We are all shaken by the tragedy in Newtown, Connecticut. It is unfathomable to most people that anyone in a peaceful society could walk into a school–an elementary school, no less–and start killing.
But are we such a peaceful society? I am troubled enormously as I read the comments on any online news site, for nearly any story, anonymous opinions that I always suspect reveal the true opinions of their writers. Blame: a mental illness is to blame, a divorce is to blame, a gun is to blame. Truth: tragedy from many aspects, resulting in the loss of so many innocent lives. Tragedy to be the family of any of the victims, including the shooter himself.
Liza Long wrote her own response to the shootings in the Blue Review. It is a brave account of what it is to be the mother of a child with mental illness. It is a brave piece, or perhaps a foolish one, as Long will no doubt know years from now, as her son grows, as her name (and his) continue to be attached to the article she wrote.
To allow oneself to be identified as a parent of a child with a mental illness requires a certain faith in the world: faith that others will be understanding and accepting, that they believe in recovery and in the safety that will remain in the community even when people with mental illnesses live within it. Even when we know that they live within it. Events like the shooting in Newtown, Connecticut, only reinforce the notion that we indeed are not safe. The question is why.
The truth is that even within medical communities, mental illness is treated differently, stigmatized, separated. It is not unusual in the hospitals I visit that the staff from the main hospital do not even know the staff from the locked psychiatric units that are beneath the same roof.
Mental illness attracts our attention, and our fear.
Our fear stands in the way of reaching out, too often. We resent the effort it takes to understand, much less to accept.
Our fear leads to cruelty, I fear–the sort of cruelty that then creates even more barriers to treatment. If treatment is hell, after all, a person is best off staying clear of it…
I do not know why Adam Lanza chose to kill 26 innocent people, 20 children. I shudder to imagine the mind that envisions such horror and enacts it. Maybe I never want to understand. I can imagine that understanding was needed perhaps years ago.
I do know about the many families that live in constant fear that a loved one will finally break down completely, that the Psychiatric Emergency Services were wrong when they determined that the loved one is not a threat to him/herself or others, that the 72-hour stay is over, that the family will soon become victims, that the said loved one will wrap a car around a tree or jump off a bridge or become a heroin addict or steal or harm or God forbid kill someone. I do know about the families that I see too often, families who watch as the chaos takes over while the violins play in the background, families who believe they are a guardianship away from effective treatment.. sometimes. Assuming there actually is effective treatment.
I wish I could point to the advances that come to mind: the Rosie D. case in Massachusetts, which resulted in the creation of the Children’s Behavioral Health Initiative. To mental health parity. To increased awareness in general.
But sadly, from my weary place here in Massachusetts, I see still more restrictions, everywhere: CBHI only for MassHealth consumers. Mental health providers woefully low in numbers, and for those direct staff, so often underpaid, so often inexperienced if initially enthusiastic, so often burned out. Inefficient procedures for hospitalization. Near-impossible eligibility for DMH services. Some great champions in mental health, yessir. But too few. And too much harm already done to erase the fear of those with mental illnesses who have sought treatment, and found instead a prison, real or under the guise of healthcare.
I have not even mentioned the weapons. Oh dear God, those weapons. Why? Who needs assault machinery in a suburban neighborhood? Who needs to arm an army from the basement of a home? Why do we make it so easy to buy something that has no other use at all but to kill?
Like most people, I imagine, I felt sick at the thought of the parents, their nightmare. I wish I had answers, quick solutions, a magic wand. But where would I even point it? I know that we cannot build the supports necessary to prevent these sorts of tragedies without a great deal of work–early work, before things happen (call it prevention)–belief, training, money. And will.
I hope we will. I hope we can.
Hot Summer Days
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.
French Literature
When asked about my background, I can note the fellowship in disability policy, or the work toward my master’s in public administration, the grant writing, and the years of personal and professional experience in working with the bureaucracy that surrounds special education and health care. Or I can mention that my intended profession was to write, and to study, teach, and research literature. Yes, I did that, and at times it seems like a lifetime away. I finished my master’s in French literature and then moved to comparative literature for my doctorate. I wrote, and was moving up in the literary world, and things were going quite well until… Well, this is the story of so many people who either become sick or disabled themselves, or have family members who do. Truth be told, it is a lifetime away. In my case, it was my child who needed me more than any scholarly attempts at deciphering Borges, so whether I knew it or not, my course was set from that time on. Juggling only works for a while when the situation is serious, when appointments and anxiety set a whole new trajectory for our lives.
In my case, we were lucky in the early days, with enough financial resources to support my not working, the medical costs, the transportation costs, the human costs of fighting to get what my child needed. But things could only continue this way for a while. Add a child, or two, or three, add a diagnosis, and a divorce, and the financial consequences of the time spent fighting rather than working, I know the challenges, the loss of dignity waiting in a welfare line (even if they no longer call it that). I know what it feels like to be so close to the edge. And I also know that I am incredibly lucky not to have fallen off.
The last week seemed an exercise in remembering the lessons I learned myself, as I met with family after family on the brink. One man told me that he had been crying himself to sleep in the hospital every night. His own disability had been difficult, but when his wife was hurt and unable to work, the challenges grew: the battles with her employer, the application to Social Security, the continued expenses–previously sustainable… And a way of life that the family had worked hard to achieve was quickly disappearing.
This was only one family, in the beginning stages of such devastation, but I see them all the time. I wanted to tell the man that he is not alone, but I am not sure that the news of so many people being swallowed by financial ruin in the face of disability is a reassurance. I think of Victor Hugo, Jean Valjean appearing in my referrals not occasionally, but often. I have met people who confess to me that they have stolen food, or money to buy medication for a child. Some have gone to jail for it, and find themselves living in hotel rooms, seeking endlessly for help. But a simple background check usually makes both housing and employment nearly impossible to find. When I see situations like this, day after day after bleeding day, I can only respond to the question about my relevant education to say that French literature was entirely appropriate to prepare for this.
Truth is, I wish I had answers for the families I see. Sometimes I can find some resource that helps people, or can fight a little harder, know the person to call. And most of the time, the strength of human spirit amazes me. I can continue to build a community and to learn, but most of all, it is the human element in all of us, the stories, that have the most chance of affecting policy and change. I hope so.
It Won’t Happen to Me
Then they came for me
and there was no one left to speak out for me. (Martin Niemöller)
Last week was a rough one in the trenches. I had a short week, but found myself shaking my head again and again at the distinct tragedies I was watching.
Now, everything I write here is based on my own experiences, and not on any sort of surveys or data I have collected over time. But usually, I find later that the trends I see are real (most recently, my obsession with outpatient observation status increasing in hospitals over the last three years was substantiated).
But I have to say, judging from the sheer number of people I see, and from the increasingly dire circumstances they find themselves in, the healthcare crisis has hit levels I never imagined.
I think it is far worse than most people think, because most of the people who are in real trouble are completely invisible. Or, more exactly, they are inside, and isolated, either in hospitals or nursing homes, or in their own homes–provided they still have homes–which they rarely leave. Or they are in shelters, hidden because they are in places that no one wants to go. It is sure that we all know someone–a family member, friend or just an acquaintance–who has lost everything after an illness or disability. The problem is only getting worse.
I write today, on the eve of a Supreme Court decision, with a great feeling to continue the advocacy. But at the same time, I am aware of the Cassandra effect. Do we believe that this is real? Do we want to?
Only Anecdotal 