FAST CAR is a Song About Caregiving

Driving home in a snowstorm today, the song Fast Car came on the radio. I can sing every word because I've loved it since Tracy Chapman first released it in 1988. But maybe I had never listened carefully to the words before. This is a song about craving escape from a prison of caregiving and poverty. It's also about feeling helpless and invisible. And yet there is hope in the words, too. 

You got a fast car
And I want a ticket to anywhere
Maybe we make a deal
Maybe together we can get somewhere

Any place is better
Starting from zero, got nothing to lose
Maybe we'll make something
Me, myself, I got nothing to prove

You got a fast car
And I got a plan to get us out of here
Been working at the convenience store
Managed to save just a little bit of money

Won't have to drive too far
Just across the border and into the city
And you and I can both get jobs
Finally see what it means to be living

See, my old man's got a problem
He lived with the bottle, that's the way it is
Said his body's too old for working
His body's too young to look like his

So, Mama went off and left him
She wanted more from life than he could give
I said, "Somebody's got to take care of him"
So, I quit school and that's what I did

You got a fast car
Is it fast enough so we could fly away?
Still gotta make a decision
Leave tonight, or live and die this way

So, I remember when we were driving, driving in your car
Speed so fast, I felt like I was drunk
City lights laid out before us
And your arm felt nice wrapped around my shoulder
And I, I had a feeling that I belonged
I, I had a feeling I could be someone, be someone, be someone

You got a fast car
We go cruising, entertain ourselves
You still ain't got a job
So I work in the market as a checkout girl

I know things will get better
You'll find work and I'll get promoted
And we'll move out of the shelter
Buy a bigger house, live in the suburbs

So, I remember when we were driving, driving in your car
Speed so fast, I felt like I was drunk
City lights lay out before us
And your arm felt nice wrapped around my shoulder
And I, I had a feeling that I belonged
I, I had a feeling I could be someone, be someone, be someone

You got a fast car
I got a job that pays all our bills
You stay out drinking late at the bar
See more of your friends than you do of your kids

I'd always hoped for better
Thought maybe together you and me'd find it
I got no plans, I ain't going nowhere
Take your fast car and keep on driving

So, I remember when we were driving, driving in your car
Speed so fast, I felt like I was drunk
City lights lay out before us
And your arm felt nice wrapped around my shoulder
And I, I had a feeling that I belonged
I, I had a feeling I could be someone, be someone, be someone

You got a fast car
Is it fast enough, so we could fly away?
You still gotta make a decision
Leave tonight, or live and die this way

Here is the original music video from 1988. It's a song that surely speaks to the hearts of caregivers, young and old, including those who decided to stay and those who chose to leave. 

BELONGING WHILE CAREGIVING: WHERE DO WE BELONG?

Photo by Geoffroy Hauwen on Unsplash

In the trenches of caregiving, we can feel very, very alone. We may never experience a sense of belonging except in that tiny world of our loved one's bedside (and possibly not even there). How can we feel belonging when our caring lives become so immersive and closed within the four walls of home or hospital? 

Lately I've been wondering if, when and how we feel belonging....

• In our own skin
• With our loved one
• In our family
• At work
• In our friend group
• In our faith group
• In our neighbourhood or community
• In caregiver groups

Do you feel belonging in these spaces? Try rating your sense of belonging (or how comfortable you feel) in each space. Rate your belonging on a scale of 0-3, 0 for no sense of belonging at all and 3 for Feel Very Comfortable and at Home in that space. 

What does your rating tell you about how to spend your time and energy within social spaces? What does your rating tell you about support that you might need in order to experience belonging? What are your barriers to belonging? What are your possibilities and opportunities? Comment to share your thoughts and feelings! 

The Natural Tribalism in Disability Parenting

A truth about disability parenting was revealed to me in two recent conversations. 

The first conversation was with an acquaintance - someone I don't see very often, but whom I care about very much. Like me, she's the mother of an adult child with disabilities but unlike me, she has had little support over the years. In combination with her own serious health concerns, my friend's path has not been an easy one. 

Yesterday we met and had a long chat. Tears were shed, hugs were freely given. We shared stories of the challenges and transitions we and our kids have experienced over the past year.

Today I met another friend who I don't see more than a couple of times a year. She too is the mother of a young man with disabilities who thrives with some support in the community. Her son has a meaningful, rich life and so does my friend, his mother. Today I mentioned that I'd run into the other Mom yesterday whom I assumed was a mutual friend, because we all live in the same community. It turned out that my friend today didn't know my other friend from yesterday's chat. But there was something else. 

I felt the difference between parents of severe disabilities and parents of children with more mild impairments. My friend who is the Mom of a son with milder challenges is one of the kindest people I know. She exudes natural healing and concern for others. It wasn't that she wasn't concerned for my other friend. She just didn't feel the kinship that I do. 

I recall writing a blog entry a couple of years ago titled For The Secret Club of Extreme Parenting and the opening paragraph read like this:
There is a secret club amongst caregivers.  Sometimes the experience of caregiving is so extreme, painful, dangerous and exhausting that it cannot easily be described to 'normal' friends and family.  And when that extreme experience constitutes family life over time.... years, even.... that is when caregivers become secretive.  They give up on explaining their lives. 

I was reminded today that there are tribes within tribes of caregiving. The extreme end of the caring spectrum is so different, so inexplicable that it's nearly impossible for anyone to comprehend it who is a stranger to it. But I also realized that's OK. We have each other and we belong to many tribes. I was also reminded that caring for someone with severe disabilities is very different from caring for someone whose needs are less apparent. And all of us on some days, just want to be called just kids and Moms, me included!  

Identity and Belonging by Robert Lepage: The Personal is Universal

Identity and belonging are subjects that caregivers grapple with everyday.  When we become caregivers, do we lose our ‘other’ selves?  When our beloved charge passes away, who are we then?  Either way, where do we caregiving families belong in society – how can we nurture and sustain a sense of authentic belonging when our lives are so different from others’?

Robert Lepage is a theatre director whose work probes questions of identity and belonging.  ‘Lipsynch’, a play I was lucky enough to see in London a few years ago, questions what happens when people lose their voice… or find it.  Many years ago, Jim and I saw an early production of, “The Seven Streams of the River Ota”, a play set in post-Hiroshima Japan in which Robert examined ideas of displacement, order and chaos.   Robert’s biographical “Far Side of the Moon” painfully and poignantly explored sibling relationships at the time of their mother's death.

Yesterday, Jim and I drove from Ottawa to Toronto to hear Robert Lepage give the 2014 Lafontaine-Baldwin Symposium Lecture, hosted by the Institute for Canadian Citizenship.  The co-founders of the Institute, Canada’s former Governor General, Adrienne Clarkson and John Ralston Saul, the author and President of PEN International greeted everyone warmly and personally.  (You might want to read Clarkson’s 2014 Massey Lectures, also on the subject of belonging.)

Jim and I knew intuitively that Robert Lepage would have something profound to say about identity and belonging – we knew that his message would have deep personal resonance, but importance for our sense of being Canadian, too.  And we were not mistaken.

Robert began his address by telling us about his own family.  Growing up in Quebec City, he and a younger sister spoke French.  But two older siblings had spent their formative years in Halifax, an English city.  So, the family was split on linguistic grounds and Robert felt a sense of belonging to Quebec and to his first language of French.  As a young child, Robert developed alopecia, a condition causing loss of hair.  Robert always felt like an outsider because of his physical difference.  But, one thing he didn’t feel was Canadian.  That is, until one day while travelling in Italy.   Robert noticed another young couple whose backpacks sported a small Canadian flag.  A friendly conversation amongst foreigners ensued, beginning with, “Hey, where in Canada are you from?”

Robert realized then that you have to leave your home, your comfort zone, in order to discover who you are and where your sense of belonging lies. 

In his world travels and artistic exploration of the self, Robert has discovered that our stories of home are the most universal.  Our sense of place grounds us and gives definition to our essential self.  But oh, there are other selves to be discovered too!  Robert described a concert violinist – world famous and highly accomplished – coming home to her family where everyone was expected to play fiddle music after dinner in the kitchen.  “Hmph!” her family scowled, shaking their heads.  “What kind of music is that? Our dear daughter is just no good at playing the old standards!”  And yet, that musician calls home her family.  She is known and loved for her personal history and her whole self, not just for her concerts and after-party conversation.

Our personal history shapes our identity and for caregivers, looking after loved ones becomes part of who we are.  Where do we belong in the world?  Robert Lepage challenges us to see the value in our personal stories and to comb our personal experience (for us, that means giving care) for universal meanings.  The ordinary IS extraordinary.

My book, 'The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving' is available from all major booksellers in the USA and Canada.

Use TYZE PERSONAL NETWORKS to coordinate sharing your caregiving responsibilities with family, friends and professionals.

Never Too Old to Belong

In my blog entry yesterday, I talked about the UK innovative housing initiative for vulnerable people called "NAAPS". Well, that organization was in the news again today. Linda Jackson writing for the Guardian, tells the stories of adults with development disabilities who are being moved from residential settings into family homes for the first time. For Stephen Gilbert and Nigel Webb, outings with a family to vintage car rallies, community swimming pools or a cinema are completely novel.

These two gentlemen are now part of the family in the home of Brian and Val Johns in Redruth, Cornwall. They have just begun swimming lessons in preparation for a family holiday to Majorca. The Johns are paid a weekly amount of money for the support that they offer Gilbert and Webb. But the benefits of living in an atmosphere of love and belonging far outweigh the payments made to the Johns (which are similar to those paid to foster parents).

Shared Lives, an agency of NAAPS was even able to place a middle aged rural woman with development disabilities with a farming family in Devon. What makes that story so remarkable, is that the woman refused to be placed without her beloved flock of geese. Now, everyone (including the geese) are happy on one Devon farm.

According to Alex Fox, CEO of NAAPS, the scheme is not widely used because it is poorly understood. Currently, there are just 10,000 Shared Lives carers in the UK. Hopefully, this will change in the future as more people discover the health and wellbeing benefits of living together and caring for one another.

Let's learn from NAAPS and Shared Lives. These programs embody the values that form the template for a caring society AND they save money. It is estimated that developing a Shared Lives project to support 85 people would cost 620,000 pounds, but save 13 million pounds in the long run.

Currently in Canada, residential housing placements (group homes) that receive public funding are oversubscribed with long waiting lists. The cost of private, for profit group homes is prohibitive for anyone, save those with large insurance settlements resulting from catastrophic accidents. Parents who are caring for their son or daughter with a disability for far too long are desperate for choices.

For one possible answer, let's look at NAAPS. www.naaps.co.uk