[humanser] Blind Women - A Review of 2 Books

[JD Townsend]

BOOKS.  Young, Stricken and Determined to Fight.  By KATHERINE 
BOUTON.  Katherine Bouton is the author of 'Shouting Won't Help,' 
a memoir of adult-onset hearing loss.  

When they were given 
diagnoses of progressive degenerative diseases -- coincidentally, 
each of them at age 19 -- the authors of these two books reacted 
as almost any young person would, with denial.

But denial can't be sustained in the face of deterioration, and 
soon enough they both took practical steps to deal with their 
ailments -- in Rebecca Alexander's case, Type 3 Usher syndrome, 
which robs the patient of eyesight and hearing; in Nicole C.  
Kear's, retinitis pigmentosa, which inexorably leads to 
blindness.  Fortunately, those steps included writing a memoir..

Ms.  Kear is a writer by profession, and 'Now I See You' is a 
funny, sassy, yet poignant story.  Ms.  Alexander is a 
psychotherapist; 'Not Fade Away' benefits from the insights 
gained in her training and practice, though sometimes she seems 
to willfully ignore certain things about herself.

Her story can be biblical in its tribulations.  By the age of 12, 
she is already going blind.  At 19, her deafness is confirmed.  
Her parents get a divorce, which devastates her.  She develops a 
severe eating disorder.  Her twin brother, Daniel, has bipolar 
disorder and doesn't respond to treatment.  Her boyfriend gets 
cancer.  She has tinnitus that takes the form of auditory 
hallucinations: a woman screaming at night, a jackhammer.

In spite of all this -- or maybe because of it -- she is driven 
to succeed in everything.  She pushes herself to grueling 
physical feats: As a teenager at summer camp, she sets off at 3 
a.m.  for a five-mile swim across a lake.  In her early 20s, she 
trains for a weeklong AIDS-benefit bike ride from San Francisco 
to Los Angeles.

She runs marathons and teaches spin classes.  She goes to Machu 
Picchu with her mother and climbs the treacherous Inca Trail: 'My 
lack of peripheral vision made it easy to block out the deadly 
fall that you could take on either side.

She pushes herself professionally as well.  She gets a double 
M.A.  from Columbia in psychology and public health.  She trains 
as a psychoanalyst and sets up a successful private practice.  As 
her former boyfriend Alan Pinto (now recovered from cancer and 
still her best friend), tells New York magazine, 'I think she 
keeps going 100 miles an hour to not have to process it all.

Or as Ms.  Alexander, 35, writes in her memoir: 'If there's one 
thing you absolutely need with a disability like mine, it's 
resilience.  I'm not talking about strong will and zest for life, 
either -- but pure physical resilience.  When you are going blind 
and deaf you are basically an accident waiting to happen.

And happen they did.  Just before she left for college, she fell 
out of her second-story bedroom window, mistaking it in the dark 
-- and a drunken stupor -- for the door to the bathroom.  She 
broke virtually every bone in her body in the 27-foot fall onto a 
flagstone terrace, except for her neck and her head.  The 
accident -- and her recovery, which left her with a limp -- 
taught her 'something integral to who I am today,' she writes, 
'the perseverance I would need every day of my life.

Family and friends are essential.  Both her mother and her 
stepmother, Polly, are unfailingly supportive, as is a younger 
brother, Peter.  Polly gives her a wall calendar to help her keep 
track of medical appointments.  'Even that small gesture from 
her, having me be the keeper and organizer of my own schedule, 
was important to me,' Ms.  Alexander writes.  'So little was in 
my power.

A cochlear implant ensures that she will never be deaf.  But even 
after countless hours of listening therapy, the sound is 'a bit 
distorted and will never sound like natural hearing to me.  
Still, she continues, 'it is much more crisp and clear than the 
hearing I get with the help of a hearing aid.  As someone who has 
also struggled with a cochlear implant, I think Ms.  Alexander 
may someday find that it sounds like natural hearing.  The brain 
is endlessly adaptable.

Toward the end of the book, she talks about her hesitation to 
have children -- her worry that she couldn't take care of them or 
that they might feel the need to take care of her.  She might 
want to read Nicole Kear's book.  Ms.  Kear, 37, has raised three 
children as she's gone progressively blind, making accommodations 
-- cleaning out clutter, using a cane -- but never, as far as I 
can tell, being a burden.

These two authors are remarkable women, overcoming almost 
inconceivable difficulty at a very young age.  Their stories are 
inspiring.  But as Ms.  Alexander says, what choice is there? 
'People often tell me I'm an inspiration,' she writes.  'I'm 
never sure what to say.

The same thought recurs during one of the obtuse encounters that 
are a wearying part of daily life.  When she explains to a 
station agent that her dog is a service dog, he replies, 'You 
don't look like a disabled person.

'At this point, I'm never sure what to say,' she writes.  'Um, 
thanks?

Not Fade Away:  A Memoir of Senses Lost and  Found.  By Rebecca 
Alexander  with Sascha Alper.  Gotham  Books, 308 pages.  $27.;  
Now I See You:  A Memoir..  By Nicole C.  Kear.  St.  Martin's 
Press.  275 pages .  $25.99.

JD Townsend, LCSW
Helping the light dependent to see.
-------------- next part --------------
A non-text attachment was scrubbed...
Name: JDTownsend.vcf
Type: text/x-vcard
Size: 83 bytes
Desc: not available
URL: <http://nfbnet.org/pipermail/humanser_nfbnet.org/attachments/20141024/6c117126/attachment.vcf>