My Wonderful Neice
 

She lost her battle with MS in Aug. of 03...one of the unlucky 2 percent who don't survive this. Pam was a talented painter, and writer. Some of you may have known her...meet Pam.

"And you thought pMS was bad....

It's been a week and a day since I was told the preliminary diagnosis.
M.S.
It sounds like some ironic payback for radical feminist ideals
But it's Multiple Sclerosis.
A name which still appears to be spelled wrong, no matter how many time I write it.

It's a label laced with doomfilled images of wheelchairs and dependency.
A pair of words that conjurs up loss and grief and so many fears I am unable
to name them all.

And yet after having devoured two rather comprehensive books on the subject; turning 35 years of my personal life perspective around,
and weighing my words with the dozen or so friends I've shared the news with..
I find that despite an understandable case of shell shock,
I'm actually in pretty good shape. Whatever that may mean from moment to moment.

No one who loves me enough to be honest will tell you that I am anything other than a control freak.
So it cannot be anything less than a humbling experience to now find myself linked inexorably with a disease that, if nothing else , is known for its unpredictable nature.

Right now I am numb from my chest down.
Though I have regained some feeling in my thighs.
My feet and fingers burn with the simple exertions of walking, standing and
writing.
Tomorrow I may be fine.
Tomorrow I may not be able to walk.

This is a test. This is only a test of your central nervous system.
If this were an actual emergency you would be instructed to...
What? Panic?

The M.S. and I are partners now. It may, if I am lucky enough to go into a long remission, become a silent partner. But it's here with me.
I feel the need to be introduced.
I crave some opportunity for influence with this interloper.
But this is where my journey really begins.

This is where I meet myself in the loss of control.
This is where the mystical quality we call strength solidifies into something
positive and I get to built my character some more. Oh goodie.
Is this also where I get to throw dishes?

Pamela Ogden Sparks Novenber 28, 1997


http://www.peaceandenergy.org/

shared with permission from her mother...my sister.

Thanks, Alffe, what a lovely girl. Ironically, the second I saw the first few pics, I knew precisely where they were taken. I've had mine taken there many times.

I've also lost two friends to this and saw it too closely for comfort. Ironically, one was my friend, Judi, I had known her 10 years before my own dx, and it was then another 10 until hers. She's already gone.

Ruth was 42, she went awfully fast.

I'm going downhill very quickly now and am in a reckless abandon mode to do everything I ever imagined as fast as I possibly can. It's hard to think about it, and I often wonder if "this" time will be the "last" time. I am determined and committed to grabbing every ounce of life that I can.

I sincerely hope that I am completely wrong.:o

You grab away lady...everyone remembers a whirlwind! :hug:

Thank you so much Alffe. She was a beautiful, and obviously quite talented woman.

I think this is what a lot of us fear. I know I do. One year ago I was working 50-60 hours a week on the fast track to a managerial position that included travel. I was in a state of flux for about 16 years with subtle and not so subtle symptoms occasionally.

Last April the bottom dropped out. I was no longer able to live in my lovely state of ignorance.

Now, I've been unable to work since November. I purchased my first second hand scooter because I can no longer walk for any length of time. Sometimes I think deep down that this isn't a flare and that it isn't going to get any better. I am truly petrified. I drive on rare occasions lately because I just can't be trusted to make the proper judgements.

I feel like I'm missing out on everything. I'm trying to adjust to the new "normal". I don't like it one bit.

Thank you so much for sharing Pam's story. It is touching in every way.:hug::hug:

Thank you for sharing your beautiful niece with us. How exquisitely she expressed herself!

Alffe, thank you for sharing your neice and her story :hug:

{{{ Hugs }}}
 

YOU are special too for sharing this very special woman in your life. Now you can say, she touch ME as wel. Her SPIRITTtouched me so I thank you for sharing a part of her with me tonight. SHe is truly beautiful. Share more,, please share more about her and about you.

Thanks PAM for being you and living on with this forum.

Warmly Jan

I thank you all for your responses. I wish I could convince Pam's mom to post here...she became a caregiver to Pam after her fall (which she touted as her "magnificent black eye". You are all heroic in your struggles and I have some idea of what you deal with on a daily basis. I sent my sister this link and she emailed me...grateful and in tears. Hugs for the room. :grouphug:

What she wrote was wonderful. Poignant, funny, made you want to cry with her. She sounds like a very special lady.

I only wish we met her sooner. Thank you for sharing this with us.