A Multiple
Sclerosis Blogger who uses poetry as her medium recently wrote
…the career you left
how much money you have spent
the friends that you miss…
In
the ‘now’, MS symptoms of memory loss and cognitive impairment cloud Patti’s
thinking of …
While
I can remember for us both, can anyone really remember the intangibles of life
for another?
Maybe
our time with MS is better told as then and now?
Then
there were only two main types of MS, now there are four.
When
Patti was hospitalized with her first major MS exacerbation US troops were busy
invading Panama while Iran and Iraq warred between themselves in the Middle
East.
Our
story preceded disease modifying drugs for MS. None existed then, today there
are 6. Patti’s neuro tried to get her into the original Betaseron FDA trials
however she was rejected as ‘too progressed’ – she had foot drop.
Someone
named Bush has been President of the United States for 12 of the 22 years I
have been a MS caregiver.
Our
MS story predated the home computer age. We went to our local public library to
read the New England Journal of Medicine to research and learn about MS.
Then
the National MS Society called the debut of their major fundraising program the
“MS Walk”, now it’s called “Walk MS”.
Over the 22 years they have raised $623 million nationwide.
Then “Rain
Man” won the Oscar as best picture, this year, “The King’s Speech” - interesting
bookends of challenges as art.
Then
we could take scenic drives through Fall foliage, now with progression of MS
visual impairment – well we just enjoy it differently …
… on
wheelchair accessible trails with ‘someone’ throwing piles of leaves into the
air so they fall around us.
“In daylights, in sunsets
In midnights, in cups of coffee
In inches, in miles
In laughter, in strife
In five hundred twenty-five thousand six hundred minutes
How do you measure a year in the life?”
“Seasons of Love” RENT
Caregivingly Yours, Patrick Leer
videos: www.youtube.com/daddyleer
web site: caregivinglyyours.com
I wonder who that is that throws the leaves to scattered among the two of you :)
ReplyDeleteIt is interesting to put it into a time perspective like this. So much progress in some things with research/meds, but so few progress in other things.
Make sure one doesn't scatter poison ivy :)
enjoy the fall before winter descends (sounds ominious, doesn't it?)
betty
I love, love, love that picture of you and Patti. Thanks for mentioning my poem. Reading your history of Patti's MS made me remember mine. A lot has changed. The one big change I am grateful for is the internet.
ReplyDeleteThis is as usual an interesting post as you think back through the years and put it so beautifully into words.
ReplyDeleteA picture says a thousand words!
ReplyDeleteyou are such a sweetheart. you remind me of my alex, but i hope he never has to go that far with the caretaking and i hope i figure out alternatives as well. what, i don't know.
ReplyDeletei so love that picture of the two of you.