Birthdays and other reasons for pause

September is always like the beginning of the year for me.  I guess I got into that feeling when I was in school and it seemed I was older, a younger self left behind, often with disdain.

It’s also the month of my birthday — and most years that’s a cause for celebration.  But I always slightly resented September weather — it’s “supposed” to be cooler, but here in Memphis we usually have summer heat until October.  After living in the cool wet Northwest for about a decade, though, I made my peace with September heat.  The wet weather there was exacerbating arthritis pain, so now I just enjoy an extra month of baking but hurting less.

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September is my daughter’s birthday, too.

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This year I didn’t get the birthday buoyancy I usually feel for just surviving and outliving an early prediction about my lifespan.

When I first got sick, back when I was 16, with seizures and weakening muscles, I was told I might have any number of degenerative diseases that could end my life by the time I was 30.  It was 1976, before there were MRIs and the kinds of tests that can diagnose disorders better.  I stopped having seizures in my mid-20s.  But my legs continued to weaken.  I had “possible multiple sclerosis,” or more often, the diagnosis was “abnormal.”  Then in my late 40s, they found a lesion on my spinal cord, and gave me the diagnosis of Transverse Myelitis, a rarish disease, but one that should be stable.

Only it wasn’t stable.  I lived for about a decade in denial of increasing weakness and body changes.  I blamed instability on my osteoarthritis.  I sometimes gave myself a hard time about not exercising, or eating poorly.  But when I did those things, I didn’t improve.

This last year, I got a full MRI work up and it was discovered my spinal cord was thinning and I have an even rarer disorder called “Hereditary Spastic Paraparalysis.”

Through it all, I’ve always imagined I’d be a partial user of a wheelchair, but would still be able walk some, around the house, get in and out of bathtubs, have some balance.  I would still get in and out of friends houses and restaurants with just a walker and a helping hand upstairs.  But that’s all fading a bit.  I keep falling.  The reality of my own delicacy has been as hard as the floor on which I contemplate the loss of independence.  I am an advocate of interdependence, we all need each other in many ways we take for granted, but still….

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I know I’ve talked about this on my blog before, but the upcoming birthday has made me melancholy.  I have bi-polar and feared a depression was settling in.  Then I feared it wasn’t, that I’d become a melancholy and anxious old woman.

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I didn’t plan a party or an art show.  In fact, I’ve been a little blocked about everything.

But I’ve got great friends and family.  I’ve spent the last week being taken out for meals, given presents, and given support.  I allowed myself to talk about my fears, my disappointment, my delusions.  And my friends, they listened and they gave me the best gift — their understanding.  Nobody has tried to undermine my mourning of my strength, they just subtly and emphatically proved that they’d be there for me.  There is a hand on my elbow when I’m in dangerous terrain.

I had felt like an abandoned scarecrow, like the crows had pecked me apart.  But sort of like in the Wizard of Oz, my friends put me back together, and got me back on that yellow brick road — even though we all know the Wizard is just a guy improvising his way through life like the rest of us.

It’s a lesson I learn over and over — that in spite of my fears, I have love in my life, and that kind of assistive device will carry me through anything.  I am rich beyond belief.  Each day there is some jewel out there shining for me, if only I keep my eyes focused outward.  I know that it’s impossible to do on my own, so learning to rely on others has been the biggest gift of it all.  To trust.  To love.

I am thankful for another year of being in this world with my friends and family.  And to all of my internet readers and supporters who listen and provide insight and share their own struggles.

Thank you.

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September 9th starts the new year for me 🙂

 

 

Older but No Wiser

Oh my friends we’re older but no wiser
For in our hearts our dreams are still the same.
–Gene Raskin

 

50 years ago
On September the 9th, I get to turn 52.  I say it that way because when I was about 16, I developed a mysterious neurological condition and my neurologist told me I might not live past 30.  I remained a medical enigma for most of my life, but my enigma didn’t develop into anything life shortening (so far).  When I was in my 40s, I found out I had an almost microscopic lesion on my spinal cord that was the cause of some of the major mystery, but my medical history still has many pages of studies that all conclude with the word “abnormal”.
One abnormality is that I’m extremely happy about getting older.  Every year after 30 is a gift.  I admit, there are dark days when life seems an overwhelming burden.  Wars, natural disasters, ongoing health problems, heart breaks, pain, violence, rudeness, grammar rules, bureaucracy, poverty, calories, politics — sometimes I just want to lie down and die – take that sweet eternal nap.  But I haven’t yet.  And I still get a huge sense of gratitude and wonder that I’m celebrating another year.  52!  Whee!
22? years ago
I’ve gotten to see my children grow up.  They are both approaching 30 and my life continues beyond me.  It was so very important me to have children and have that faith that life could go on.  It has and it does.  Imagine.  My life has been a roller coaster ride like everyone else’s, but I feel very fortunate each time I hit a peak, when life is full of potential and is as cool as an early Autumn day.
I LOVE getting older.  When I was younger, I was so worried about everything.  One worry I’ve noticed I’ve outgrown is how I look.  I used to cringe at pictures of myself.  I never felt like I looked good, to much face, too curly, too fat.  I had a very limited vocabulary for myself.  On the other hand, as a writer, I wanted a more expansive vocabulary for describing people, something outside the limits of beauty.  I wanted a language that didn’t include the word “ugly” as an option of describing a human being.
Because I had epilepsy at 16, I got involved with a lot of people who had disabilities and they were astonishingly strong and vibrant people.  A lot of us considered ourselves outsiders and visually unattractive.  But a lot of people who were healthy and practically “flawless”, especially girls and women, thought they were ugly.
30 years ago
I began to write in a way that didn’t describe physical characteristics, to the point where, sometimes I would be asked what race my characters were.  I wrote a lot about people who lived in poverty and it was amazing to me what racial characteristics people attached to universal behaviors.  I began to describe more directly, but I still wanted to write stories about the essential person, not their looks.
A map of wrinkles that enlivened his face, a scar that burst like a star on the dark sky of her face, a pillowy body that promised comfort, eyes that sparked beneath heavy lids – there were many ways words could be use to compassionately describe people without resorting to the stark concepts of beauty and ugliness.
In the last few years, this way with words has come back to haunt me.  For the first time in my life I feel good about the way I look – even though, conventionally speaking, I probably look worse than ever.  I’m particularly astonished to find that I no longer cringe at pictures that show my goddess belly or my bonus chin.
or my cat scan
Does this walker make me look fat?
I let the kids here at Bridge Meadows take my picture with my camera, and they always catch me at my worst angle, under the chin.  Which is how they usually see me and they like me anyway.  I’ve let them take pictures of me with my glasses crooked and my hair a fright.  Last week, the United Way was filming stories of people here, and I let them film me after exercise class with my hair a wreck and every ice cream induced lump showing in my leggings and tank top.

 

I still hear my younger hysterical self trying to stop me from these activities, but I tell her it’s alright and give her a pat and let the camera roll.  I love to dress up and accentuate myself, but I find I am compassionate and practically even loving with all of me now.
If I never get another present and don’t grow in any other way, this sense of self acceptance will be enough.  Life is too short not to enjoy one’s self or to waste time trying to live up to a concept of beauty so vague and tenuous we are all bound to fail.
I gave a painting to my 89 year old friend Juanita last night.  That negative voice popped up – we should stand up, I’ll look thinner.  Then I thought, why should I look thinner.  I am with a woman I love and admire who has lived 89 years.  I just smiled at the thought and let the camera click.
 I opened this essay with a quote from the song Those Were the Days.  I don’t know if self-acceptance is a part of being wise, to me it seems more about being happy — and that will do until some wisdom comes along.  Meanwhile, I plan to spend this year getting as many happy hugs as possible.
by photographer J E Underwood