Thursday, May 21, 2009

Carnival of MS Bloggers #36

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

"Without Darkness There is No Light"

Photos by Nina

The Shadow Self
by Nadja Yse Stringer

I long to be only as I am--
To let the voice of doubt in my mind

I swore I would give up this addiction--
My desire to find chaos where there is none
My willingness to see obstacles where none exist.

Shadow self,
Anarchist in my mind.

I am not you
I am not my fear
I am not just my shadow.

But you are real
Not to be ignored or denied
You will have your say--

There's darkness
But there is also creativity--
Layers of my being only revealed
In the mirages with which you fill my mind.

I am not you
But you are me
Something deep in my soul that stirs me

I never was silence
I never was tranquility
That too is not my nature.

I am bursting
But I cannot create without catharsis--
You are my catharsis.

I long to shrug you off
But you too have a place in my being
I cannot ignore your pull
You are a parasite
but one I need for growth.

So I battle you,
I resist,
I let you fill my mind with whispers of hate--
For my weaknesses

But you will not be denied--
Alone I shine briefly
But then go out--

Struggle as I may
I create nothing,
Grow nowhere without your shoves.

Without darkness
There is no light
Without either,
All things are cast in shadow

I can fight you
Or I can use use you--

After 19 years of allowing medical types (that means doctors, therapists, and such) to direct my MS therapies I have decided to do what I have had to do all my life (those who want to argue this point---BRING IT): GO IT ON MY OWN.

I know how I got to this point in my non-walking/standing life. I alone watched it unravel before my ON (that's optic neuritis for you non-MS readers) eyes. I know the moments where changes began, I know what kept me down. My big idea is this----(Wait. Understand I am full of big ideas, some say full of something else, but constipation has never been a problem for me, though I never used a public toilet in over 25 years, unless you count that hole in the ground at some stupid park my mom just HAD to looking back I don't know how I did it, but I also rarely drank water...I must have been dehydrated all my childhood. Seriously, I'm surprised I made it this far with only a touch of cancer and slap of MS!) I will work in reverse to regain what I lost. Not much different from using psychology to help someone confront their demons or find their lost keys.

First up: rebuild muscle in left leg. Start standing on it every morning a little longer each time. Get an exercise bike I can use from my power chair. Shave my legs. Buy some shorts. I have exercises for all the muscles. I have cuff crutches, TWO quad canes, a gait belt, a rollator. Must eat protein, up vit D and calcium. Buy the "Rocky" theme song for my Ipod.

Then I will need people. Think Diane, think....where to find people to help me walk, hold onto my core/back...people people...

Today I walked. I WALKED. Just 6 steps, but it brought the house down! There were tears of joy (partner) laughter and wows (friend) and "Yes I Can." (Moi)

Friend wrapped a gait belt around my upper leg (the dead zone leg) and as I stepped out I would shift my weight right to left telling her when to give a yank. We all agreed I could have gone farther, but we were all a bit overcome and will regroup tomorrow.

This all came after we fixed the printer, I did my mini exercise bike, my arm weights, dealt with my dental insurance saying I didn't exist, snacked on leftover salmon and fresh brocolli and sat in a moment of sun on the balcony. (Next week is supposed to be fantastic!)

Did I mention I WALKED??!!

This week was hard because I have an aide who is young and not very skilled. I manage my day so as to be not in need of her; she leaves early. So, I can't try the walking on Friday or Sat., at least until I get my helpers aboard. My laptop typing wears me out, so I must avoid it on those days.

Today a friend came over and after I took a spin around the new digs, we did exercises---the mini-bike, weight bearing (standing without holding on to anything), arm weights, ROMs (Range of Motion---she moves my legs through natural use movements), yoga (In my lift chair, lying flat I do positions.) and then she strapped my left leg and we took off---four strides out and back. Using the walker does strain my arms though and I had to schedule my Dr, appt. for late next week. He will just suggest PT or sleeping in my bed.

Did I mention I WALKED FOUR steps out and back? It always feels so good, so right. I must make my brain build a new pathway. If only I had Montel's people and money...LOL. No, this is MY life, MY MS, MY path.

Tomorrow is visit to new dentist in my new neighborhood. My visit to my neurologist last Friday was ridiculous; if I hadn't gone with a friend I would have thought it was all in my head. Oh well, another post.

Did I mention I WALKED??

This concludes the 36th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 4, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 2, 2009.

Thank you.
Comments for this post.


  1. Sorry I have missed you all lately. Congrats Diane!

    Lisa, thanks for putting up my poem. I'll link it now.

  2. So glad to see Diane's progress. She rocks!


  3. Oh, say, it looks good all strung much more to be done, but I at least know it CAN be done. Please, don't let any Dr. or PT tell you what you can't do. Don't let an MRI enhanced pic hold you back. YOU must become the boss of your own body. I know it is corny, but if I can do it---anyone can.

    Great poem, Den.