My son and I had always been avid readers. Believe it or not, he could read by the time he was 2 years old.
Tho’ I had spent much of my nursing career working with children with all kinds of disabilites it never occurred to me in that one day my athletic son would be so depandant and legally blind.
No matter the dreams and plans we have for our lives life can turn on dime for anyone. David , who had never had a sick day in life (true) was diagnosised with Multiple Schlerosis in 2002. Optic Neuritis from the MS has caused him to become legally blind and parapalegic.
(We joke about about him sitting on his butt all day, not lifting a finger to help his old mom. I get a kick out of people’s initial reaction when I pause before revealed his is now parapalegic.)
No, he is not brave or courageous.I’m not either. We are like oil and water on many issues.
As a mother to this 41 year old man, we adapt.
We learn to accept and go on. Sometimes with a big to-do, to be quite honest and grounded in the reality of living with such severe disabilities and still have a briliant mind.
Recently, I signed us up for Books for the Blind.
Actors read books on tape. The tapes are sent to people with visual impariments to enjoy listening as we wish. Then we return the tapes in mail.
Below is what the machine looks like. It is very simple to operate.
David seemed resistant to listening to something besides LOUD music.
I decided to play the tapes alone in my room..
I had signed up for the books on tape, myself, because of my own visual issues. (You noticed my tyos, didn’t you? ) My eyes could longer tolerate reading the small print on most books.
Feeling quite alone wiht my talkin book something remarkable happened with my first book, You Before Me by Jojo Moyes.
Maybe it was fate that my stuborn man in the wheelchair could hear the book being read over his choice of loud noice. “Mom, what are you listening to? Can I listen with you?”
“It’s a love story, but I don’t hink think it’s mushy!”
That is not the most remarkable thing. (Sh-h-h, I knew that when he thought something was his idea_
( Know any one like this?) I do (wink) and it so happens that charater who is the patient has many things in common with my son.
As it turns out the book You Before Me is about a man, Will, with quadrapalegia post a truamtic accident. His only mobility is a wheelchair. His mother hires the protagonist, Lou Clark for 6 months to be his day companion, Lou is very chatty! (Another character did the skilled nursing care.)
Later, Lou finds out her highly paid unskilled job is a sort of suicide watch attendant. Will plans on commiting suicide at the end of 6 months. Who could possibly be prepared to keep a paralyzed person happily entertained when you have no idea what they are thinking_
_except maybe how to be contrary.
I will just say that the man in the wheelchair in the book is not so very differnt from my man in the wheelchair. Author, Jojo Moyes must have some direct knowledge with someone who has learned to live with impaired mobility because my man relates to the characters dialog to a T!
(FYI: I am struggling to learn how to state a stininkin’ situation in a politically correct way: PC.)
I wonder IF I would or IF I would not have picked this book out to read to my son, by myself. It was selected for me_ I think fate.
I know that many people shy away from awkward subjects like disabilities.
People can have silly thinking that whne you are around people with some kind of disability that can only talk about pleasant things that have nothing to do with a person’s disability. Let me clear something up..
Yes, if someone using a wheelchair you CAN talk about the fact that you enjoy running.
YES, if you are with a person with poor vison you CAN say the word “see”!
Me Above You is a love story, I think most people would enjoy. But, for the 2 of us, getting involved in the characters lives is so refreshingly endearing that we had hardy laughs at certain awkward movements that the character Lou had stressed over.
Below is list of of hilarious awkward moments. I’m curious as to how you will react when you read our list. Feel free to email me at Malika@malikabourne.com I promise I won’t repeat what you say.
1. “What if I have to wipe his bottom?” (The word bottom in real English-English accent is so fun to mimmic when I have to wipe My man’s bottom.)
2. Lou’s boyfriend, Patrick, worried that Lou would see Will’s ____. ( I know you are thinking of that same body part.
3. Lou had to learn how to change over and empty Will’s Catheter. ( Have you ever seen the look on people’s faces when they see a urine-filled leg bag poking out of pants leg?)
4. Will would never have a sexual relationship, again. ( I know you wondered, but you were too polite to ask, right?)
5. Lou decides to make Will get out of his home. He had been isolated far too long. She drives a special van with Will in his wheelchair to a horse race track. It never occured to her that was d-i-s-a-b-l-e-d parking. Did you know how many bumps there in a pavement?
Let me tell you that if you drive every where you have no idea how many barriers to moliblity there are when you have to get somewhere in a wheelchair. It not ever a joy ride for the fun of it.
Will’s wheelchair gets stuck in the mud: no one would help.
So, Lou did what she had to do. (Been there-done that). Lou, found a group of former soldiers-drunk ones -that she had filpped off earlier. She claims Will was a wounded veteran from the Iraqui War, ” No one will help a wounded veteran.”
The roudy group of vets simply picked up the the wheelchair to carry it to the van. Lou had to kiss on the lips all the men, (with their beer breath) to thank them.
E-w-w! Probably, I would not go that far. I simply look at people and give them orders that they will pitch or I’ll block their way until they do what we need. I AM the No Non-cents Nanna, afterall.
Gratefully, we live in an area with active and retired military men and women who are always ready and willing to piched in to help with NO questions asked. As the proud mother of an Iraqui War Veteran, we military mothers have always had a rule to help those in need. We hope that someone else’s mother is helping our soldier in time of need.
No, my son was not the soldier; his youngest sister was.
To sum up: We have a few more hours to listen before we hear the end of the book. David has fallen asleep in his hospital bed. I reluctantly turned off the Talking Book to save the rest of the story for tommorow.
Now it is your turn..
Have your read the book You Above Me?
How did you react to my above questions? They are personal issues for many. Could you do those private things for someone that you loved?
I am Malika Bourne the No Non-cents Nanna encouraging you to make good choices.
edited 4/2/15 239
Source: No Non-cents Nannas Blog