Living with Invisible Disability - 1

 Isn’t it more interesting to skip around the details of our life stories, to tell the part that seems important right now, without the need for strict chronological order?

Today’s story is about invisible disability, mine, but perhaps it could be similar to 

yours. 

The short version begins many years ago with a car accident, two months after I got married.  We were going to Macy’s to exchange gifts.  Another driver turned her car left without stopping or looking, and hit our car in the intersection.  I was left with neck and back pain, eventually taking time off work because it kept getting worse, returning to work, and continuing to work, with more or less pain, for many years as a family practice physician.  Eventually, over a period of years, the pain in my low back kept worsening, until finally, I couldn’t work as a family physician any more.  After a while, I created a transition into a different kind of practice, in which I can use a reclining chair to sit more comfortably, and offer counseling to those who see me, usually people who live with illness, stress, or medical conditions.  I feel incredibly fortunate and grateful that I can still use my experience as a family doctor and also my personal experience as a patient.

There are so many of us who have an invisible disability, something that disrupts our lives and causes discomfort or pain, that nobody can tell is there.  Sometimes people who are very close to us, family and friends, don’t “get it.”  They hear us talk, they know the facts, we tell them the things we can no longer do, but it just doesn’t seem real.  Seeing is believing.  I have talked with a number of people about how painful that can be, experienced it as well. 

We find support from those who see us truly and completely, often our partners who live with us and help us, and from each other.

What qualities does it take to make a good life with a disability, invisible or visible?  How do those qualities relate to our search for the hero?  Where can we find our inner courage, fortitude, and perseverance, and how can we accept ourselves on the days those qualities seem out of reach?  Is a sense of humor heroic?

I’d appreciate your comments…

Ay Chihuahua!

Meet Laverne.  She’s a nine year old Chihuahua, and she is now ours.  Yes, my horizons have expanded beyond Labradors despite every expectation of my own or, for that matter, that of anyone I know. 

I am well known to be a dog person, and have been all my life, moving from the Collie of my childhood (Lad) to my first Labrador (Chaos), born from my friend’s dog and not quite the right color for a Lab.  My next Labrador, Samba, was well-bred and gentle, and by then I knew that if you are to be a dog breeder, you must be very responsible to improve the breed as much as possible.  Samba was the perfect mother, and I kept her daughter Cuica, and then Cuica’s granddaughter Clave.  Though I really wanted to get a puppy when Clave was 10, because of my chronic back disability, I couldn’t do all the bending and picking up that comes with a puppy, so it didn’t happen.  After Clave died, we turned to Rescue, and we adopted our next Labrador, our chocolate, Grace. 

 

Cats came into my life when our daughter was 2.  We adopted 2 Abyssinian sisters, Penny and Poppy.  Our daughter, Clave, and the 2 cats were all the same age.  Penny died some years ago, but Poppy is going strong and is about to turn 16.  Two years ago our daughter asked for a kitten for her upcoming birthday, so Mimsy came into our home.  So I am a dog and cat person.

However, I have never been a Chihuahua person.  I couldn’t even imagine it.  So how does a “big dog” person end up with a Chihuahua?

Understanding this transition requires knowing something about our daughter, like Poppy, almost 16 years old.  She is passionate about animals, all of them.  She believes with all her heart in animal Rescue.  As part of her high school, she has been working as an intern at the local animal shelter, and this summer, as I wrote previously in The Summer of Impending Loss, has fostered a kitten (so far not adopted).  At the shelter, she was attracted to a small dog in the shelter with her sister.  The two Chihuahuas were named by the shelter “Laverne” and “Shirley”, after the TV show.  Now, Laverne was being fostered and our daughter asked if we could adopt her.  She presented us with a careful and well-written set of arguments why this would be good for her and for our family.  We agreed to meet the dog.  She was brought over to our house by her foster, who turned out to be an old friend of mine, and someone our daughter knows from the shelter.  We were unexpectedly charmed by this very tiny dog who has her own dignity and is calm and affectionate, and not at all yappy. 

So that is how we are now a family with a Chihuahua.  I feel as though my acceptance muscles have been stretched wider than her 5 lb. frame accounts for.  My friend who fostered her told me that she adopts dogs from the shelter that would have difficulty finding homes because they are old or blind or both.  I admire my friend and my daughter for their open hearts, their love of animals and willingness to take them into their (our!) homes, and the hard work that this entails.

In thinking about the qualities of heroes, I wonder about love.  We are impelled to many acts of courage and selflessness by love.  Animal Rescue is driven by love, but it takes many other qualities to rescue and care for animals.  It requires that we set our own needs aside to care for the needs of others who are different from ourselves, that we find the special inner vision which allows us to see each life as significant, and most of all, reverence for and fostering of life itself.

He’s Gone

This was written right after our son left for his gap year in Israel, at the end of August.

My son is gone, having offered himself, arms stretching up to be caught by the enormous silver bird which will fly him to Israel.  His room is more than empty, it is void.  He considerately put all his things in the closet and drawers.  There is nothing on the walls, and only my old copy, loaned to him last year, of “The Folksinger’s Guitar Guide” on the shelves.  I appreciated his consideration until the moment when I opened the door, stared at the blank walls, and felt the pain of loss shoot into my gut and twist, thinking “oh no, I made a terrible mistake – I should have had him keep his things out so it would still look like his room.”

Anticipation of pain is not anything like feeling the pain.  Expecting to feel sad, I was surprised to feel devastated.  Telling myself that he’s alive and well, happy and excited, that I’m lucky in these and so many ways, didn’t help.

So many of my friends - my family - have already sent their young men and women off to college, to travel, to work, to live close-by, to live across the world.  Their support and their wisdom wrapped around me, holding me through the first few days which have been the hardest.

There are books and movies and poetry and songs about young people starting   their journeys into the future.  We don’t hear so much about the journeys of their parents, left behind to face a road that changed while they weren’t looking, suddenly facing a different direction with no signposts or maps.

Now I am half on that different road, with one gone and the other here.  And I am looking in a different way at parents who have traveled this road before me.  With children, everything is, in some way, related to their presence.  When they have gone, and we are without them, the empty spaces in our homes reflect those in our lives and hearts.  Eventually, after years of focus on getting our children to the next step, and the next after that, we begin to think about our own future. 

Joseph Campbell has written extensively on the mythic journey of the Hero, through a series of stages from the “call to adventure” through trials and important meetings with guides, to a supreme ordeal that changes the Hero forever, ultimately leading to return with inner powers and rewards.   When our young people set out on their own, they, too, experience a “call to adventure” which leads them into the lives they ultimately make for themselves. 

This stage of the journey for parents is also impelled by a “call to adventure,” but the “call” does not come to us.   As the ones left behind, how do we move beyond loss to envision a different direction for our lives?  What qualities can we find inside ourselves that help us to choose a direction and start moving?  How is the hero inside the parent different from that of the youth? 

The Summer of Impending Loss

As the weather warmed this week in October, I was thinking again about the summer.  This was written 8/27/11, a few days before our son left home for a gap year in Israel.

 This has been the last summer our son was going to be with us, before leaving the family to go to a gap year in Israel and follow his life.  At the same time, our daughter fostered a kitten all summer long, destined to leave her for another home. Every moment of this summer has been bittersweet, knowing that things would change forever at its end.  It has also been full, with many long deep talks, and with four of us hanging out around the dinner table until late, enjoying each others’ company. Just as I stand this morning in my bathroom eking out the last drops of hair gel to save every bit, I know that these last 3 days with my son are totally precious; I can’t ever buy any more of these moments, and the ones in the future will never be the same.  My daughter and I are united in the anticipation of loss. My husband turns away from it as much as possible to support us all.  He spends time with our son watching “Die Hard with a Vengeance.” They plan to bake challah together the last day. For our son it has been the summer of anticipation of a different kind, that of freedom, adventure, exploration, adulthood.  He can hardly wait to go, and his imagination explodes with fireworks of possibilities.

For those of us who remain here, in the family home, we are already drawing closer to each other, getting used to plans that are for three instead of four.  We have redistricted the lines of responsibilities.  We remind him to leave his room clean and spare, so it can be used for…something.  We watch him look at everything with the eyes of one who is leaving, we watch him with eyes of the ones who are left. 

I remember leaving my mother, my family, to go to college.  I could hardly wait.  The short distance from the San Fernando Valley of Los Angeles to Berkeley seemed so satisfyingly far away.  The unknown was sweet and enticing. 

Many years later my mother told me how she made herself wait until I was on the airplane before she cried.

Now my mother lives ten minutes away.  She will be with us when my son has gone, coming over for Shabbat meals on Friday nights, asking what we have heard from him.  I will turn on my computer to show her his blog from Israel.  We will all talk on Skype, but he will not be here to make me feel small against his chest when he hugs me goodnight.

Continuing the Path: Highways and Byways

Do you remember when girls were overtly discouraged from choosing careers in science?  I never thought it was happening to me.  I just thought I was bad at science - struggling with poor grades in high school chemistry (completely forgetting I had just completed biology with the highest grade in the class!).  And if I couldn’t “do science”, I couldn’t be a doctor.  How many of you had an experience like that?  

How many of you, as I did, returned many years later to something that you loved, or perhaps went on a different path completely?  Many of us discovered eventually that we could do science, or whatever it was we had been told we were no good at.  What was it for you?  For me, I was shocked, when, after graduating from U.C. Berkeley in anthropology, and then living for a year in an anarchist collective (getting work typing manuscripts for professors), I figured out that I wanted to be a doctor, after all.  Two years of pre-med science and four years of medical school later, I was deliriously happy to graduate from medical school.  I was a doctor.

I’d appreciate comments with your experiences…

Reflections

There are times when we stop doing and focus on being.  We spend time with ourselves looking inward instead of outward.  For physicians this is unlike most of our lives, in which attention, focused primarily on the needs of others, drives us in an often hectic schedule in which any reflection must be fitted into other activities.  

 

Thus we have short times for thinking when we are driving, as we walk from one room to another, as we eat lunch, or in the moments of blessed peace in the bathroom.  When we do think, it is still likely about others, about our work as detectives in figuring out just what is wrong and how can we fix it.  Sometimes we wonder if we are doing the right thing, or if there is anything else we can do, or if we have made a mistake.  Sometimes we agonize over a mistake. 

 

Physicians are trained, sometimes severely, to not think about ourselves.  In training, we learn to turn away from our own needs for sleep, food, exercise, emotional support, and time for reflection.  We are supposed to be available to work long hours (the number of hours is now regulated, which was not the case when I was in training) no matter what we personally feel.  In one extreme example, when I was an intern, the senior resident on call took care of the emergency room in the small community hospital, and the back-up physician was a faculty member who was on call to come in to the hospital when he was needed.  One night when I was on call, I went into the resident lounge and saw the senior resident sitting on the sofa with an IV in his arm and a bag of fluid dripping into his vein.  He was ill with a stomach virus and was so dehydrated that he needed the IV fluid to be able to stand up.  I was shocked and asked why he was doing that, and was told that the particular faculty physician (who felt that residents should work under any circumstances) refused to come in to the hospital, and had told him to use IV fluids and go back to work.  The senior resident felt that he had no choice but to do what he was told and kept working.  In this way, we acquire the habit of putting our own needs last.

We learn that to serve others, we do not think about ourselves and turn our lives to “doing.”  We are tremendously busy; it takes a lot of everything we have to care for our patients.   And yet we have so much to think about.  When we do stop, and be with ourselves, it takes time to move the focus in, to sit with our breathing and feel the boundaries that delineate who is “me”. 

When I stop to think of myself as body-mind-spirit-together, to consider “me”, I create and reinforce a pattern of self-care that spreads out to nurture the wholeness in those around me, including my patients.  I believe that when we can see the wholeness in people, and let them see that we see them, they are strengthened and can more readily find their own wholeness.  Here is where healing begins.

Another way to think about this is the airplane analogy (one of my favorites - it may come up again).  Every time you get on an airplane, you are told that in an emergency, if oxygen masks are released, you are supposed to put your own mask on first, before helping the person next to you. 

Many traditions help people stop their usual activity and go inward to care for their wholeness, sometimes during particular holidays, others suggesting more frequent practices.   Many people find times for reflection that are unrelated to any traditional practice, and can range from quiet time going fishing, running, doing music or arts or crafts, cooking, or sitting in the sun.  I find quiet time for myself in music, meditation, and increasingly, in writing.

In my tradition, this is the Jewish New Year, Rosh Hashanah, the day the world was born, and the Days of Awe, Yom Kippur, in which we stop everything to be with ourselves.  This is the time of reflection, when each of us asks ourselves “How did I do last year? Where did I stay on track?  Where did I miss the path?  What do I need to do in order to find the trail and start again?  Where am I going?”  And as a physician, “How can I be aligned with the path of service and still care completely for myself?”

And so I am reflecting also on the qualities of heroism, and what we do when we focus our attention inside. The physician is considered a hero for saving lives.  But most of us don’t save lives in that dramatic way every day.  I wonder if this process is part of what allows us to continue to persevere, to move through our lives with courage, to act from selflessness that actually is based on self-knowledge of our own wholeness.