Monthly Archives: February 2010

I Miss My Freedom

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I am declaring war on my agoraphobia.

It controls me so powerfully I am ashamed to talk about it. For years, perhaps until just recently, I wondered if it was even real. It is. I can barely get out of the house.

Every night when I go to bed I promise myself I will go outside for a walk the next day. I almost never do. Taking the dogs out to the pen and going out to feed and water them are battles enough, staying out longer than the time it takes to complete those tasks feels like climbing Everest without oxygen. On the days I do get out, I go to the YMCA, library, meeting, speech, class I’m teaching or group I’m facilitating. With terribly rare exceptions, I never go outside just to be outside.

When I was a boy growing up my favorite refuge in the world was the woods. Walking in the woods, by this beautiful stream in Pearl River, New York was like living in the most wonderful fairy take imaginable.

I am surrounded by woods and streams and lakes where I live, all beautiful, breathtaking even, and agoraphobia, my enemy, drives a wedge between me and all this beauty.

I am declare war on this enemy, or, perhaps more accurately, renewing my declaration of war on this.

I miss the world outside my window. I miss the woods. I miss my freedom. I want it back.

__________________________

On Suicide

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I cannot hear or read about suicide without internally flinching. It is sad that life can be so painful, ending it seems the only way out.

High levels of suicides among veterans, the recently reported suicide of Alexander McQueen, the 40—year-old fashion designer, are reminders that  life happens to us whether we like it or not and sometimes the pain we experience stops us from seeing the hope that is there. The savagery of some marketing and media campaigns that wrongfully say wealth and fame is the way to happiness has misled many of us.

The phrase, the best things in life are free, the title of  a  song written by B.G. DeSylva, Lew Brown, and Ray Henderson for the 1927 musical "Good News", still holds true. My heart sings with joy at the call of a Red Tail Hawk, the feather touch of clouds on mountain range, or waking up in the morning. That’s right, waking up in the morning! What a gift! Another day!

Like many others, I’ve been touched by suicide. My birth-father committed suicide with a handgun before I got the chance to meet him; at age 23 my brother put a 22 caliber rifle to his head and pulled the trigger; at age 68, my mother, Virginia, surrounded herself with family pictures and with a mixture of drugs and alcohol, ended her life. Three of my childhood friends’ mothers committed suicide. While I will not name them, I can tell you I still love my three friends and I still love their mothers.

I would be disingenuous if I told you the idea of suicide never crossed my mind. When I was homeless many years ago the option briefly came to the surface. I remember walking on MacDonald Avenue in Brooklyn one brutal bone-chilling cold night with, once again, nowhere to go. I stopped walking and out loud said, “I give up.” I just stood there and again said, “I give up.” I wondered what exactly giving up meant? I mean when you are standing on a cold street with nowhere to go and you say I give up there are not a lot of options. Die, or keep walking. I kept walking.

Here are some things I can, in gentle tones, tell you:

  • Feeling hopeless does not mean there is no hope, it means you are having a hard time finding it; but it’s there.
  • Feeling like you have no options does not mean you have no options. They are there, and you have a right to know about them.
  • Feeling worthless does not mean you are worthless, it means you are having a hard time experiencing your worth. It’s there. Promise.

In other words, I beg of you, don’t give up.

Not giving up has given me many gifts in life. Including the gift of being able to write these words to you.

_______________________

Equal Rights Needs No Competition

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Groups promoting equal rights should never be in competition with each other. The fight for equal rights needs and deserves as many honest voices as it can get.

I am most directly involved with promoting the equal rights of people with brain injuries, with their right to live in the most integrated setting.

Fortunately in my state there are some solid voices involved in this fight. The Brain Injury Association of New York State is the leading advocacy organization in the state;  the Providers Alliance is comprised of companies and individuals who provide services so some who live with brain injuries are able to live in the community: the Kahrmann Consumer Advocacy Coalition is a statewide coalition founded by and run by survivors and their families;  the Brain Injury Coalition of Central New York is comprised of an extraordinary group of survivors, family members and health care professionals; the National Brain Injury Foundation in Utica brings hope and empowerment to survivors and their families; the Traumatic Brain Injury Services Coordinating Council (TBISCC) was formed by an act of the New York State Legislature to advise the Department of Health regarding service needs of persons who have sustained a traumatic brain injury, and the New York State Department of Health and the New York State Commission on Quality of Care and Advocacy for Persons with Disabilities.

Given a recent productive meeting between the KCAC and Mark Kissinger, deputy commissioner for the New York Department of Health and his staff,  along with my knowledge and experience of those in all of the aforementioned groups, New York State is blessed to have them all and very much needs them all. There is no such thing as too many groups working for the right of all survivors of brain injury to live as independently as possible in the most integrating setting as possible.

The KCAC will be meeting with the Mr. Kissinger and his staff again in the next few months and has already reached out to the Brain Injury Association of NY and the Providers Alliance for a meeting. Moreover, we are already talking with both the NBIF and the BIC of Central New York. What is true about those in all the groups mentioned in this missive – including the DOH for those who may doubt it – is everyone’s heart certainly appears to be in the right place.

I hope and pray all of us are wedded to my favorite definition of humility – humility isn’t thinking less of yourself, it is thinking less about yourself  – and  join together, work together, and urge each other on. If any of us get caught up in the destructive winds of competition and ego, we hinder the very thing we are all really about – equal rights.

This is not the life path I was on when I was shot in the head 1984. I was writing, driving a New York City cab, and pondering a career as a paramedic. But the squeeze of a teenage finger changed all that. And so here I am, connected to some wonderful people and some wonderful groups throughout this state.

And so we keep on moving, one day a time, humble and humbled up, which is at it should be. Life happens to us whether we like it or not. It does not go on forever, so let us all join together and work  heart and soul to make the world a better place for all people. And that includes each other.

_____________________

Anna, Emily & A Little Bit of Jazz

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They are like jazz. Two sisters with colorful personalities packed with formidable supplies of creativity, intelligence and courage, who are truly good and decent people.

I fell in love with their mother last year. She too is like jazz. When the jazz trio is together (and when they are not, come to think of it) the closeness between them is palpable and this is because they are safe being who they are with each other. Challenges faced are seen and treated as experiences to be managed and resolved, not as opportunities to judge, damage, control or abandon each other. The deep love between these three people flourishes because it rides the wave of acceptance.

No relationship of any kind can be a healthy one if the people in the relationship can’t be who they fully are in the relationship. When I watch Anna and Emily, the glow of the joy they experience with each other is so strong I’m pretty sure I can read by their light. When they’re with their mother the glow is so strong I can read by it, but need to wear sunglasses.

I know there may be some who flinch and recoil when they learn someone they’ve fallen in love with has children. Not me. Falling in love with their mother, Christine, was like discovering this extraordinary landscape in life. Discovering and meeting her two daughters was like discovering this extraordinary landscape has two beautiful lakes on it. I am a lucky and blessed man.

Emily is 24 and Anna is 20. These two young women are doing wonderfully in life, far more than I think they give themselves credit for.

I love them, their mother and jazz. It doesn’t get much better than that.

_____________________

Kahrmann Coalition Meets with NY DOH Officials

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In a wide ranging conversation marked by mutual respect and openness, representatives of the Kahrmann Consumer Advocacy Coalition met with Mark Kissinger, deputy commissioner for the New York State Department of Health, and members of his staff.

As founder of the KCAC, and one who will never blink when it comes to my support for the equal rights of all people, in this case, people with brain injuries and their families, today’s meeting very much appeared to be the beginning of what I suspect both sides hope will be an ongoing healthy dialogue.

The DOH said a newspaper article reporting that a hold had been put on the transfer of brain injury survivors consumers to licensed home care agencies was mistaken. While Kissinger and his staff  could not guarantee no consumers would wind up in nursing homes as a result of the transfer of services,  they assured us they were working on a daily basis with providers, focusing on each individual consumer, to make sure consumers are not going without the home and community support services they deserve. Moreover, the DOH said it is strongly discouraging nursing home admissions.

As for the timing of the late-December 2009 directive to providers requiring they transfer home community staff services to licensed home health care agencies in 30 days, Kissinger and his staff said waiver providers were told in 2006 that all agencies providing home and community services were required to be licensed home care agencies and, in 2007, were notified  of this requirement in writing. According the DOH, providers were directed to be in compliance by the end of September, 2009,  had that deadline extended to the end of December 2009, and then had that deadline extended another month.

A number of other possibilities were discussed, including, but not limited to:

  • Quarterly meetings between the KCAC and the DOH.
  • Quarterly meetings between the KCAC, the DOH and an alliance traumatic brain injury waiver health care providers.
  • Increase reimbursement rates for providers
  • The establishment of reimbursement for staff training relevant to the population being served.
  • Including KCAC members as unpaid participants on  DOH survey teams.
  • KCAC meeting consumers across the state in day programs offered by waiver providers.

As a civil rights advocate on all fronts: women, gay and lesbian, people with disabilities, blacks, Latinos, Jews, Muslims, and so on, and as one who lives with a brain injury, I, like many others, know only too well  what it is to be condescended to, or patronized. We were in no way treated like this by Mark Kissinger and his staff.  We were not condescended to or patronized, we were not rushed to end the meeting, and while all the answers were not every inch of what we hoped for, no question we asked was ducked or avoided. We were treated as equals. And that, no matter how you slice it, is good news.

Today was a good beginning for the relationship between the KCAC and the Department of Health. Next, we will be seeking to meet with the Providers Alliance and, of course, we look forward to a follow-up meeting with Mr. Kissinger and his staff.

______________________________