Kay's Facebook blog, Kay's Shining Stars, reveals a brilliant mind, sharp wit, attention to detail and a bedrock attitude about rolling with whatever life hands you. For Kay, life literally rolls.
She spends a good part of her day in a power chair with everything at her fingertips...except that Kay no longer has the use of her limbs. No sweat; Kay is a problem solver:
"For the past year+ I've gotten along by duct taping a long stylus to a ball cap. I look like a giant bug as I use my "stinger" to peck out texts and fully utilize my iPad, in spite of my non functioning fingers."
"It is highly unlikely that I will get the chance to visit my hometown again. But I visit it often in my dreams, and I like to daydream of a bike ride about town visiting my favorite landmarks and recalling precious memories. I can't go home home, but home comes to me. Here are my hometown Shining Stars who continue to show up to offer support every Walk to Defeat ALS. Love you guys."Readers of my series on living beyond disabilities, discovered what Kay views as one mission of her blog: "It's all about awareness." The Coach believes it is also important to recognize the humanity of those who inspire; they have the right to express a spectrum of emotions. This is exactly what I (and her hundreds of followers) love about Kay's Shining Stars: she tells it like it is! But don't expect to read something dismal: Kay may be living with an incurable disease but she is not spending her days 'dying'! She maintains hundreds of friendships-- those 'Shining Stars'-- each brightening in Kay's universe of love.
With permission, I am reblogging one of Kay's awesome posts:
Maybe you remember the episode of Seinfeld with the "low talker" who no one can understand and it ends with Jerry wearing the "puffy shirt" to an important event. Very funny. But now that I am a low AND slow talker communication issues are a real challenge and not so funny.
I really miss being in the thick of a robust, entertaining conversation, Interjecting interesting, witty or annoying tidbits to keep the conversation rolling or telling my own usually enhanced story. Now I've become more or less an observer. By the time my oh so witty comment can be formed by the muscles of my tongue and mouth, the conversation has moved on. This was super frustrating when it first started happening, but now I'm getting better at sitting back and soaking it all in. This is actually a skill that most of us should practice more frequently as you learn so much this way.
But I'm much better in quiet one on one situations.
|Kay wears her brilliant humor|
Here are some tips for talking with people like me. By the way, it is almost always well meaning strangers who make these errors.
Listen carefully, stand close, and make eye contact.
Repeating things is very hard and takes so much energy. You will likely have to do some lip reading. I've stopped repeating things when people say, hmm or what, which happens all the time now. And guess what, mostly the listener does grasp the gist of what I tried to say or it really wasn't important enough to repeat anyway.
Do not asśume that my ślow voice means I'm mentally challenged.
It makes me craźy when you address my caregiver or talk to me aś you would a small child.
Please use your normal voice, volume and vocabulary.
I do realize the woman at the hospital was just trying to be helpful last week when she said in a sing song voice, "Do you want some juice, sweetie?" Before I could reply, no just ice, she repeated loudly and slowly, "Do. You . Want. Some. Juice. Sweetie?" Now I'm just sounding ungrateful, and I'm really not, but part of me wants to SCREAM when this happens. "NO I DONT WANT YOUR STUPID EFFING JUICE CUP. I WANT TO WALK. I WANT TO RUN. I WANT TO RIDE MY BIKE. I WANT TO HUG MY CHILDREN. I WANT TO SIP A FINE WINE. I WANT TO LEISURELY ENJOY A MEAL. I WANT SOME SHRED OF PRIVACY. I WANT MY LIFE BACK. BUT WHAT I REALLY REALLY DONT WANT IS THAT STUPID JUICE CUP!!!"
But I said nothing, drank the juice and whispered thank you to the nice lady.
At least no one has tried to put me in a puffy shirt, but this happens a lot these days.
Thank you, Kay, for letting us laugh as we grow in awareness!
To refresh your awareness with other inspiring people, readers may wish to visit my posts:
Part 1 Debunking Stereotypes
Part 2 Getting By or Growing Great
Part 3 Enjoy Your Journey
To read more about supporting someone with a terminal illness:
Ask the Coach: What to Write to a Friend with Terminal Illness
Thank you for caring!