Sunday, March 8, 2009

MS Awareness Week: Nellie’s Wishes

This is the final day of MS Awareness Week. Thank you to those of you who have read my posts and gained some understanding. Thank you to those of you who have shared warm and supportive comments.

I am so blessed to know a myriad of fascinating people who also happen to have Multiple Sclerosis. I have friends literally all over the world, each one smart, funny and brave, coping with their illness in their own unique way. We all have stumbles of self pity and despair, but for the most part I see wisdom and grace as they deal with this shitty hand that life has dealt them.

One of these people I have met relatively recently through my blog. I believe of all the PWMS that I know, she is the one who has knowingly battled it the longest. She is a young 76 and was diagnosed when she was in her thirties.

She has been married, raised four sons and several step children, she has worked and lived a generally full life. She is a wise-cracking spitfire, sharp and sardonic, empathetic and warm.

We live on opposite sides of the country and she is the same age as my father. We have a remarkable number of things in common, besides the whole MS thing. She is one of those people that you meet sometimes and you just click right away with a sense of joy at finding a kindred spirit.

So I asked her, what perspective can you give us after living with the Monster for more than forty years? What are YOUR wishes? This is her response:


Wish the guys would still think I had a sexy walk.
Wish the neighbors didn’t think I drink because
I sometimes stagger.
Wish the kids at school hadn’t asked my kids, ‘what’s wrong with your Mom?’.
Wish I had a paycheck, a job, a way to make money while flat on my back some days.

Wish I had a van, with a lift to take my wheelchair further than the corner store.
Wish I could go to the mall just to window shop, buy some makeup, something cheerful.
Wish I could sit in a restaurant without having my cane either trip someone or fall on the
Wish I had the money for a cab to the doctor’s office when I’m too sick to drive but too well for an ambulance.

Wish I could dress up and wear high heels…feel pretty again.
Wish I could have a nice hair-do instead of one that’s ‘easy to care for’.
Wish I could see well enough to read a magazine or book without seeing double.

Wish I had friends that just popped in to help change the bed or take out the trash occasionally.

Wish the doctor didn’t stare at me like that when I walk down the hallway.
Wish I had the energy for a shower and to get dressed every single day.
Wish I could make a lunch date a week in advance without wondering if I’ll be able to make it that day.
Ditto for any plans for a future date, vacation, a
ppointment, hair cut, movie, etc.

Wish people would let me cry occasionally without feeling they had to ‘fix things’.
Wish eight hours sleep didn’t feel like only two and one-half hours.
Wish spending so much time sitting didn’t ruin my hourglass figure.

Wish people didn’t just stop calling me when I have to often break dates.

Wish my kids didn’t ask me if I’d thought about which Nursing Home I’d like.
Wish my kids didn’t tell me I should move closer to them (or in with them) and lose the few contacts I have.
Wish my wheelchair tires didn’t track in mud.

Wish I didn’t have to stay indoors alone on cold, rainy, or snowy days that last for weeks and weeks.

Wish I didn't worry about what the new meds w
ere doing to the rest of my body.
Wish I wasn't so afraid of what would become of me once I can’t get around at all.
Wish I’d saved more money or had unlimited wealth to hire honest health care workers.
Wish someone would just come and take this all away…it gets much too heavy at times.

Wish I’d known about support groups online and how important they are.
Wish Internet service was at a reduced rate (or
free) to handicapped folks that can’t get around.
Wish electric rates were reduced for those with power chairs and breathing devices that need plugging in each night.
Wish incontinence products were supplied by Medicare.

Wish I could still dance, even with the Wii.
Wish going to the dentist didn’t cause my body to
jerk with spasms.
Wish I could still do my own nails without getting polish all over my fingers.
Wish I could still sew…threading a needle is impossible.

Wish I could still stand at my easel and paint with wild abandon.
Wish I could be with my loved ones when they are taken to the hospital.
Wish I could have sex with reckless glee withou
t fear of peeing the bed.
Wish, when I stumble for words, others wouldn’t look away, then leave as soon as possible.

Wish I could have long discussions without losing the thread of it so quickly.
Wish I didn’t have to write down things IMMEDIATELY after hearing them for fear they are lost forever.
Wish I knew if ever I have the faint aroma of urine.

Wish I knew if I was still lovable.

That is IT. That captures MS, in forty four lines.

Thank you for the gift of your experience Nellie.

And yes, you are, without a doubt, still eminently lovable.


caregivingdaughter said...

Hi, you have received an award on my blog!

Proud Mom said...
This comment has been removed by the author.
Proud Mom said...

Dear Marie, Thank you for sharing Nellie's wishes. I swear I could probably hear my brother saying the exact same words, although his pride is much too strong.

The wishes that stung me the most were:

Wish the neighbors didn’t think [he] drinks because [he] sometimes staggers.

Wish the kids at school hadn’t asked [me], ‘what’s wrong with your [brother]?’.

I love your blog, Marie, not only because you make me laugh, and make me appreciate my "good" life, but because you are teaching me what I always needed to know about MS.

Hugs ~ Lisa

Marie said...

Oh, thank you so much for the award, caregivingdaughter!!

Lisa, I am so grateful for your heartfelt responses!!

Thank you to all of you also who are reading but not commenting. Hang in there. Keep reading. And one of these days, pipe up! We would love to hear from you!

Sheila said...

Nellie's wishes are wonderful - so poignant. Mind you, at 76 I too will wish the guys would still think I had a sexy walk. :) She sounds a wonderful, and as you say, a very lovable person.

*sparkle* said...

"i wish i could be with my loved ones when they are taken to the hospital"

this one resonates with me ~ the way i am no longer the daughter that leads the family in all things ~ including how to care for each other.

thank you so much for this, nellie and marie!
...and for all you do for others who live with MS!

blessings bee yours!

Marie said...

Sheila: Heck, I wish the guys still thought I had a sexy walk at 54!! But at 5'3" I have never been able to pull that one off. lol I think Nellie is one in a million. I am lucky to know her and so grateful to her for her sharing.

Sparkle: Thank you for your sweet comment!!

weeble99 said...

Nellie's wishes are so honest and true. Some of them made me very sad, some of them made me feel very grateful.

Thank you for sharing Nellie's wishes.