21 Oct 2016, 5:06pm
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Disability

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Disability can be visited upon you suddenly and shockingly, as in the case of victims who survive a shooting or bombing, or accident victims of all types. Those who serve in the military continually put themselves at risk for disability and, sadly, with modern weaponry, it is all too common for them to have to face enormous physical changes and challenges.

Disability can also creep up on you, in expected and unexpected ways. In my own case, diagnosed with Multiple Sclerosis at age 32, I could perhaps have expected eventual disability. With nutrition, exercise, attitude, and family support, I managed to function much as a healthy person until my 25th year with MS. Now in my 33nd year post diagnosis, I have learned to live well as a significantly disabled person.

“My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit as well as physically.” – Stephen Hawking

 

There are many factors that figure into whether or not an individual is able to “live well” with the significant challenges of disability.  I consider attitude the principal quality that’s essential to crafting a life that is as close to what one would want as a non-disabled person. Focusing on what you are able to do, as the above quote advises, is crucial to not getting discouraged and feeling helpless A support system is the next key factor, and this must be carefully built-up by the disabled person as the folks you need will not automatically be present and available. You need to actively seek help (see Healing Links). If you do have a support system in place, you still must ask for what you need. A common misconception is thinking that people don’t care when what’s really going on is that they don’t know what it’s like to be you. They don’t know what you need, unless you tell them.

There is a fine line between being articulate about your disability and being a victim of it. Remember that “you have it, it doesn’t have you”. One way to walk this line well is to make use of adaptive devices. This allows people to see your efforts to maintain your independence and functionality, as well as helping you to feel included in activities enjoyed  by your neighbors, friends, and family. While your challenges will always be an issue for you, you might be surprised how often your disability is a non-issue for others when they see you acting with courage and perserverance on a daily basis.

 

santa monica

 

Disability is often a private struggle. It may be difficult to get in and out of bed, put on your clothing and footwear, prepare your meals, even chew and swallow. You may be at risk for falling, due to issues of sight, balance, coordination, or a host of other factors. Accepting this, you do your best to protect yourself. If you do take a tumble.you seek the best help in healing.

Simplifying your life, without sacrificing quality, is a crucial element in living with disability. An example of this in my life is travel, which my spouse and I love and do often. Because I travel with a mobility scooter, I have learned, whether it’s a weekend or a month-long trip, to share one 22″ duffle with my husband. I can live from 1/2 a suitcase in order to make all transitions (planes, trains, cabs, rental cars) easier for both of us. I can manage a small backpack with personal items on the scooter. The point is you have to decide what your priority is, in my case not giving up travel, and do what it takes to make that possible.

Another priority for me is movement. I have had to let some beloved sports go (tennis, skiing) but others I have made a part of my regular routine (swimming, yoga, Pilates, bicycling). In the case of cycling, which I never want to give up, I now use a motorized trike, and self power it for exercise when I feel strong enough.

Bicycling

Whether you are disabled yourself, or live with someone who struggles with limitations, I encourage you to imagine the best you and the best life you can despite those limitations. Carry On!

 

 

23 Mar 2015, 6:54pm
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Transitions

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From the moment the decision was made to sell our home and move across the country, to this moment as I sit in my new home to write, there was a span of nearly a year. What was accomplished in that year, essentially creating a whole new life, required considerable effort but no struggle. Struggle is a heavy thing, quite distinct from meeting goals and accomplishing tasks that tire us out. That’s effort. I already knew the difference between the two but to have experienced it “in living color” has been quite miraculous, almost magical.

It took two months to prepare our Western home to sell and another three months to get it sold. In that time I looked online for our new home, and was in touch with our Eastern realtor, almost constantly. Yet the space in which we are now happily ensconced did not show up on the market until two weeks before our home sold. The day we made an offer on it we received an offer on the home we needed to sell. That’s sometimes referred to as “God’s timing”. It may not be agreeable to us but it gets us where we want and need to be not a moment sooner than necessary.

For those of you less than comfortable with the “G-word”, this process is also called Synchrony. It’s not that my months of online research yielded nothing. When we saw the neighborhood and home where we wanted to spend (at least) the next decade, we recognized it and were able to take timely, and successful, actions to make it our own.

The past year represented a huge transition and involved lots of goodbyes and letting go of people and places. We took care to make the good-byes mindful and meaningful. The months of waiting for our house to sell were spent with cherished friends in memorable places.

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The surprise to me is that at no point was I scared to enter an uncertain future. That I have two loving companions, my husband and my dog,  is not to be discounted as I speak to this point. I respect the fact that when we journey alone fear is more likely to shadow us, even as we move forward. Most times we move forward anyway because our old life has become unsuitable, like a beloved, but no longer serviceable, pair of shoes.

The more transitions we have made in our lives, the easier it is to relax and trust when we find ourselves in yet another one. I’ve been telling people that our move involved a “ridiculous” amount of work. The rewards we’re now enjoying – proximity to family, new friends, a right-sized home, and a lovely neighborhood – make the travail to get here disappear in the rear view mirror.

The shift that triggered this major life change occurred at a deep level and rose to the surface with certainty only when it was time to act. I’m very grateful that we were paying attention to these inner promptings and had the courage and fortitude to follow through on them. Trust that “wherever you go, there you are”.  (Jon Kabat-Zinn)

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20 Aug 2014, 1:44pm
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Suicide

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There is an ongoing international conversation about Suicide and Depression sparked by the death this week of beloved comedian Robin Willams. Mental Health professionals and those who have suffered from severe depression or been touched by the suicide of a friend or family member welcome this openness about a topic that is often considered taboo. Certainly the phenomenon of airing feelings of grief and bewilderment on social media, which instantly can reach a worldwide audience, is changing the scope of our awareness in the aftermath of this high profile suicide. The fact that Robin William’s legacy is forever marked by laughter and fun, as evidenced by the clips of his remarkable comedic genius, makes his manner of death especially poignant.

Robin Williams as Mork

 

Self-harm in the form of suicide is on the rise in William’s age group, the Baby Boomer generation (which is mine as well- Williams and I were born just weeks apart in the same year). My reflections and attempts to understand his choice to end his own life are informed by my own struggles with aging, melancholy, and disability from Multiple Sclerosis. Then there is the professional in me who is focused on helping to prevent self-harm which begins with identifying who is at risk. I served on a Suicide Prevention Task Force (State of Connecticut), am trained in intervention with at risk persons, and have worked closely (in my role as a Chaplain) with depressed and suicidal individuals.  We each view this subject through our own unique lens, informed by life experience, temperament, genetic predisposition, spiritual background, and many other factors.

I don’t claim to understand clinical depression, being blessed not to have suffered from it myself. What I do understand is that it is an illness and that suicide is a serious public health problem.There are scores of people working tirelessly to research suicide with the aim of helping at risk people with timely intervention. Under Healing Links above (sub-category Suicide) I have provided a link to an article about one of the most innovative researchers in the field, Dr. Matthew Nock of Harvard. This NY Times article, with interviews with survivors of suicide attempts, sheds light on the topic in a way that I’m not equipped to do. I’ve also added a reference under Resources to a film (Off The Map) that depicts clinical depression, and a father who finds his way beyond it, in a startling  and moving portrait.

Off The Map

 

This is a topic so complex and multi-layered that I will need to write about it again. At that time I will  explore an area in which I can speak from experience and that relates to the legacy of complicated grief that the death of a loved one by their own hand leaves to survivors. This is in no way a judgement of the suicidal individual. When someone has well and truly lost the reverence for their own life none of us can judge that state of mind. Dr. Nock eloquently refers to it as a “dark alley of the soul”.

Many of us are inspired to live somehow differently in response to the death by suicide of someone as beloved as Robin Williams, or the death of a friend or family member. It is an opportunity for self-reflection and for reaching out to others in a focused way. In other words, paying attention. If nothing else, we can always, always, be kinder both to ourselves and to all we encounter in our daily lives.

Kindnesss

Expectations

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The Holidays are a good time to take up the topic of Expectations. We set ourselves up for disappointment time after time when it comes to family, friends, colleagues, and lovers, perhaps never more than during this season.  How does this work?   I’ll share my experience of ongoing liberation from Expectations, using the Holidays to highlight the process. Your celebrations can be as lovely, or more so, if you keep it simple.

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It’s okay to have a vision of how we want to celebrate the Holidays. Where I tripped myself up in the past is by having a script for how others should behave – husband, parent, children, siblings etc. And, when inevitably they did not play their part as I expected, I did one of several things. Sometimes I would over function and play their expected role as well as my own. I’m sure you can imagine how that ended – in exhaustion and resentment.  Other times I would cajole, argue, and entreat to try to get things to play out a particular way.  (Now, I feel tired just writing about this!)

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I expected active alcoholics to be sober for me, people who had awful experiences of Christmas to love it, myself to find the perfect gift for everyone  – and on and on. Now that I’m freeing myself from the burden of Expectations, I look forward to the holidays with optimism and delight. I’m safe in the knowledge that I won’t overdo it and that whomever I’m with, I will appreciate their presence and not focus on who isn’t there.

Can we plan a holiday season without Expectations? Not entirely, but we can set realistic goals for ourselves and grant others the right to opt in or out as their comfort level dictates. It starts with knowing what you are willing and able to do, where you want to be, and with whom you are comfortable interacting. The next step is to share this information, well ahead of time, with anyone who needs to know it. Realistic goals often means downsizing the scale of your decorating and gift-giving. You may find that you experience relief, not disappointment.

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Do you have the fortitude to say a firm and kindly no to others Expectations of you? If someone doesn’t want to participate in a holiday activity dear to your heart, can you accept their decision with grace?  Flexibility and the willingness to yield control are necessary to navigate the season with ease. I ask myself “How can I simplify this while honoring the traditions I cherish?”  One way is to yield the favorite family recipe to the next generation. In other words, allow others to help when they offer. Ask them if they haven’t offered.

Favorite family recipe

One of the unexpected benefits for me in letting go of Expectations has been time for spontaneous gatherings and room in my life for the unexpected joy.  I’m a lot more fun to be around because I’m not stressed and overwhelmed. Kindness and compassion need space to thrive. When we over-schedule, stress out, and hold everyone to an impossible standard where is the celebration in that?  If you feel yourself falling out of balance, chances are Expectations have crept in.  Joy is the theme of the season, shelve your Expectations, treasure your loved ones, radiate Joy.

Radiade Joy

30 Jul 2013, 11:32am
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Mistakes

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Having the opportunity, which I consider blessed, to work with dying people in the role of Chaplain, has given me  insight into the experience of mistakes, or sins if you will. We think in terms, of course, of a hierarchy of mistakes. Overindulging in a dessert is not in the same league as sleeping with your neighbor’s husband.

 

 photo credit – Steven Kreuch

It’s the latter category of mistake, and much worse, that rises up to haunt people on their deathbed. We do know right from wrong and when we have wronged another we will be uncomfortable until we have atoned, in whatever way is possible for us to do so.  Conscience is expressed as early as toddlerhood, as every mom and dad will confirm.

 photo credit – Maria Spinella

We can, and do, get away with denial, suppression, and other kinds of mental gymnastics for sometimes many decades. What I’m telling you most emphatically is that the deathbed (or car, or plane, or ambulance) is the place where the bill comes due. If we ignore it, in my educated opinion, it will come due again and again beyond this life in one form or another.

I’m not trying to induce guilt or shame here, quite the opposite. The operating system of the universe, and the human psyche as part of it, is founded on law. Believing that guilt and shame are the point, as some religious traditions do, is like thinking that hunger is the point rather than the nourishment of the body.

At one stage in my career, some of the dying patients I worked with had been brought to the hospital from a maximum-security prison. What came up for them as they faced death were sins like murder, drug dealing, child molesting, and other serious offenses to their fellowmen.

It was not uncommon for these individuals, the ones who had committed the most serious “mistakes”, to rationalize, minimize, blame the victim, or out-right deny their culpability. It was as though taking ownership of what they had done, and setting foot on a path toward redemption, was just too frightening. These situations called for a different style of ministry before we could even get to remorse. They needed to realize that their prison was of their own making.

 

Some souls had to tell their story often, with their versions challenged, until they came to a place where they were tuned into the pain of another, where they questioned their own thinking.  I got to see what people are like when they “turned on their own lightbulb.” This was new territory for them – taking responsibility for themselves, their thoughts, and actions.Some of them let grace in when their human tale was almost over. Sadly, some died in torment. This is what the metaphor “hell” describes.

By contrast, war veterans, who had been expected to kill as part of their job, felt remorse and torment readily; often it had stalked them for years. It was possible, once again by listening to the story, to lead them toward greater peace before death.

The twinges of conscience that we experience as guilt, or it’s deeper, darker cousin shame, are like the warning lights on your dashboard – ignore them at your peril.

photo credit – Maria Spinella

The point for us everyday folks is that recognition and acceptance, as soon as possible after the act, of our responsibility for atonement, will save us from most of our deathbed angst. As is taught in the 12 Step programs, making amends on a regular basis will keep our psychic home in order.

You always have the opportunity to listen to your true nature. When you take advantage of that, you’ll thrive. So make an intention, set aside time and space, to experience the peace of the examined life while you still have earthly time.

 

This is not to say you’ll run out of time. For all eternity you’ll be offered chances to change your thinking, your attitudes, your actions. Peace is within, why wait?

4 Jun 2013, 10:33am
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Perseverance

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I was ruminating for a week over an entirely different blog topic when I came across this quote and knew what I needed to write about.

” Do not disturb yourself by picturing your life as a whole; do not assemble in your mind the many and varied troubles which have come to you in the past and will come again in the future, but ask yourself with regard to every present difficulty: What is there in this that is unbearable and beyond endurance?”

Marcus Aurelius, Meditations

The quote was in an article in The Atlantic magazine by Jessica Francis Kane, author of acclaimed short-story collection This Close. Jessica Kane also wrote a novel, The Report,  and a collection of stories Bending Heaven. In the Atlantic column series, By Heart, Kane wrote of the importance of this quote to her life and her achievements. I can see why. These words are about to become important in my life. As Ms Kane did, I may write them on an  index card and affix it to my bathroom mirror.

As a writer, I can’t overstate the importance of Perseverance. In fact, whatever the creative endeavor, if this quality is not present, you won’t get it done. Apathy and lethargy are among the antonyms for perseverance but inertia, distraction, and procrastination (not listed) are my obstacles to “getting it done”. I’m never apathetic, in other words I always care. I don’t suffer from lethargy, which I think of as a disinclination to move at all.

But I will move as if through jello, put unimportant things first, and put off until tomorrow, then tomorrow, then tomorrow…

This is where the words of Marcus Aurelius come in. It’s the mind’s focus on “the story of me” and “my problems” that lead us into inertia, distraction, and procrastination. If we can clear the table, so to speak, of all the things in the way of  creative blossoming, what’s left  is the clarity and peace of mind that foster inventiveness, originality, and even brilliance. We can Persevere, move in a forward direction and never give up, whatever our dream may be.

I’ve made many dreams come true in my life. My current dream sometimes feels like it won’t come to fruition until pigs fly. Then I remember that all my big dreams felt like that while they were in the process of coming true.

Perhaps this farm was a family’s dream that they thought would never come true. (I’ve shopped there and it’s wonderful!)

Yes, dreams get broken, changed, even shattered. How can we know why things happen the way they do? We can’t. Yet if we believe in our work and Persevere, heart, mind, body, and spirit committed to the effort, incrementally we’ll see  our dream take shape. Along the way we may be re-directed many times, by rejection, criticism, failures. We must always be paying attention to discern the next right thing.

The writer Anne Lamott has a wildly popular non-fiction book called “Bird by Bird” (always on my bedside table) which is a reference to how we keep from being overwhelmed by obstacles to creativity, how we keep our focus on the task at hand. Her advice is the perfect counterpoint to the quote from Marcus Aurelius – a marriage between the practical and the spiritual. We focus first, getting out of our own way, and then inspiration emerges. It was there all the time.

 

 

 

30 Apr 2013, 11:15pm
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Tragedy

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“In the ensuing months, she thought much about the way in which a stranger can finger your life: this man, who knows nothing of her, nor she of him, until both arrive at the fatal grid reference, which has always lain in wait. And now the man is gone…

                                                                                                             Consequences by Penelope Lively

 

I’ve been reflecting on the Boston bombings and their aftermath in the 2 weeks since the attack on an American city and it’s people. Like most folks, I cannot get my mind around what might make two men so young act without conscience or any apparent remorse against the city where they had made their home.

 

 

I am well aware of hypocrisy, intrigue, incompetence, and stagnation – a laundry list of flaws in our American system. Yet, the avenues to respond to the acts by our government with which we do not agree are at our disposal at any time. Non-violent civil disobedience, strikes, referendums, blogs, editorials, class-action suits, documentary film making… All of these and many others have been used effectively to allow dissenting voices to be heard and, sometimes, if we’re persistent and courageous, change in a positive direction does occur.  Why might these two young men, one with a tiny daughter, choose extreme violence (and inevitable prison or death) to express their anger over the US wars in Iraq and Afghanistan?

 

Experts of all kinds are studying the trajectory of the lives of the suspects in the Boston bombings in the hopes of preventing future attacks from “self-radicalized” terrorists. A corollary to this is the question – How do we live our lives knowing we can’t be certain of safety anywhere, or at anytime? Are the cities of the world to live under a perpetually menacing cloud?

 

Photo credit – Pete Spurrier

For some in Boston, with their assumptive world shattered, activities will be curtailed and life will never be the same. Certainly, this is true for the families who lost a loved one and the people who were gravely injured. There are many ways in which random acts of violence or mere carelessness can irrevocably alter lives. That said, the festive quality of the targeted event and the horrific injuries focused the world’s attention on Boston. This is trauma of great magnitude, to the families of all concerned, victims and perpetrators.

 

The random traumatic events and situations that have occurred in my life, and they are many, I could not have predicted or defended against before the fact. Illness, predators, accidents, and consequences to me of someone eles’s behavior– to each of these I could only respond with the resources cultivated in me. It’s vital that I’ve always felt myself to be firmly seated in some community of fellow travelers. This began and ends with my family, both my family of origin and the family my husband and I created.

Beyond that I’ve been a part of a changing array of communities. Communities, like governments, are a flawed but necessary underpinning of human society. We all watched the people of Boston come together to respond to the wound it sustained on 4/15. Families, friends, leaders, and the public at large have been marshaling their resources to respond to what for some people will be a continuously evolving “new normal” as they recover and adapt to their injuries and losses.

 

The saying “It takes a village to raise a child” has been on my mind as I think of the young people growing up in the Boston of today. The way in which tragedy has united the people of this passionate city is essential to the post trauma recovery of all it’s people, most especially the young. Wherever you live, teach acceptance, neighborliness, and caring to the people in your daily life.  Young people are always looking for heroes. The ones they find in their own school, neighborhood, town, and city make the most difference in their lives. You really don’t know when and in what way you may one day need each other. Be a hero.

Photo credit – Aram Boghosian