guest post from my friend, Sandra Miller

The day my friend  T. called me to tell me about Annie’s stroke, I was sitting on my front step in the California sunshine, lacing up my running shoes.   I will always remember the conversation.  T. described the horror of Annie’s bandaged head after the  craniotomy “She hardly looks human,” she choked.  The words were like a cold fistful of jelly in the face, and for a long time there was no sound between us but our shared sobbing.  There are hundreds if not thousands of people all over  the world who have a similar story of the fear of losing her, and the hole it created was like something in space, black, infinite, swallowing all light as it collapsed in on itself. 

There are all kinds of things you think when something so cataclysmic happens to someone you love.  I’ll save that for another guest post, maybe.  For now, I’m going to fast forward five years: my husband and I are planning a house party for the July 4^th weekend,  in the wine country.  We’re not much good at planning (to put it mildly) so the evite that was meant to go out no later than March 1^st arrived in the email boxes of friends and family in mid-June.   I was delighted that Annie said yes and disappointed that her  husband wouldn’t join. Right away Bob sent me a list of all the things Annie would need help with.  I was unperturbed – my theory was, Annie is a big girl. She knows what she needs, and she knows how to ask for it, so we’d be fine.

And we were. The most difficult part was before the trip. Annie contacted me daily – sometimes multiply – for details about the house and grounds.  Understandably, she wanted to know exactly what she was getting herself into.  My long work day, plus the two hour time difference, made it difficult for us to connect voice to voice. We exchanged a lot of messages with very little information – a telecomedy of errors, if you will.  Annie got insistent, I got crabby, she got snippy, I got pissy , but we got it planned, and on July 2^nd Annie rolled up to the house with my friends K. and M, drenched in sweat (M couldn’t’ figure out how to work it the convertible top OR the air conditioner) but none the worse for worry.

I did not give anyone any details of Annie’s condition other than “My friend Annie is flying in from Austin. She had a stroke and it sucks that she has to walk with a cane now – she’ll need some help navigating the grass.”  I figured it was up to Annie to decide what and how much to say about the stroke.  In her blog Annie  marveled at how normally everyone treated her; it could be because everyone in San Francisco is a crunchy-liberal compassionate commie, but I think it’s because Annie is all in all pretty easy to like. The stroke has not changed everything, after all.

In his blog, Bob (Annie’s caregiver husband) mentions that in the past, he avoided handicapped people, didn’t want to open a dialogue with them, afraid where it might lead.  I confess I had the same attitude, more or less, until I moved to San Francisco. I joined a writing group, and the first night we met, there was a blind girl , K., sitting  in the corner with a guide dog at her feet. She was not only blind, but, I later found, suffered from Marfan’s Syndrome. I had never seen anyone so frail-looking.  During the session she read one of her stories, and though I deeply admired her writing, I didn’t really speak to her.   After a few sessions the host turned to me one night and said “Can you take K home?”   

“I don’t think so,” I said to him nervously, as she cocked her head.  “I have a Miata, there isn’t much room.” 

“We can manage,” K. told me in a straightforward, no-nonsense way , and I blushed with embarrassment at my passive attempt to evade  her or take any responsibility for her.  She folded her long frame into the Miata bucket seat, her dog curled neatly at her feet, and on the ride home I found out all kinds of things: how she lost her mom as a teenager, her Ivy League  degree, her hyper-literacy and her  crazy acerbic wit.  Also her love of fashion.   She was so much more than her blindness, or the frailties of her body.  I’m glad I was pushed  into overcoming my nervous aversion to interacting with someone who is handicapped.  Apparently, I’d been missing out on knowing some pretty cool individuals.

When Annie asked me, “was it harder or easier than Bob and I led you to believe?”  I had to think about that for a bit.  It wasn’t ‘hard’ per se to assist Annie  with her physical needs, i.e. she needs help in the shower – it’s a fact, and the best way to deal with such facts, I’ve found is to just deal with them.   Keeping an eye out to make sure she had someone on hand to help her to the pool, across the yard, etc  was just one of those things we have to do now. 

The thought haunts me  that it could just as easily be me in that wheelchair with that cane, recovering from a stroke – it’s a thought that has a way of softening the edges of the tasks that accompany hanging out with Annie.

What I found hardest to deal with was the emotional impact of seeing her day-to-day, minute-by-minute reality.  Watching her do everything with one hand,  plotting every step –  I am acutely aware that ‘helping out’ isn’t the same as living with it as my reality.   It hurt my heart to hear Annie’s constant apologizing and thanking those who are helping her.  Thank you thank you thank you, she’d say, almost chant, when R. waked her from the pool to the house. It made me mad  - at the stroke, at  the effing unfairness of it all. 

Sorry- sorry! she’d repeat when L. and I lifted her into the pool.  Exasperated, L said to her, not unkindly “Can we all just agree that you’re glad for the help and  we’re happy to help you, and stop with the apologizing already!”  

“Ok,”  Annie said, to her credit sounding only a little apologetic. 

I hated the constant apologizing because it was a reminder – as much as her stiff foot and limp arm are reminders – which things have irrevocably changed for my friend.  I wanted Annie to feel ‘normal’;  sure the stroke has changed her, but I don’t’ want her to feel that the resultant incapacitations have defined her.  It’s a selfish thing to want, I recognize that – as much about me  wanting to feel reassured that all is well in Annie’s world as it is about Annie herself.  It’s appalling sometimes, to try and stare down your own ego. 

When I heard Annie apologizing yet again as someone assisted her to the dining patio, it was a bald reminder of her emotional vulnerability, and my own aching helplessness in the face of it.  Maybe the stroke and its aftermath don’t even have much to do with it – after all, it’s not a place our friendship took us before the stroke, being vulnerable with each other.   We were too busy travelling at high speed through our experiences together - - working in Japan, partying in Santa Fe, running in the Grand Canyon.  

 Now, post-stroke, we find ourselves navigating quieter waters.  I picture us in a rowboat, side by side (me on the left) learning a new rhythm to our friendship a we pull through waters that are quieter than the frothy rapids of our 30s and 40s, but no less deep.