Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Blessings, Honor, Friendships, and Self-Awareness
by Laura of Shine the Divine
the dark of night
I offer bright blessings to all
may we each open our hearts a little wider
absorbing the love and peace that surrounds us
illuminating any darkness we feel
saturating us with
may the returning light of winter
continuously sustain us,
you, me, our beloveds,
all beings beyond
time and space
by Mary at Travelogue for the Universe
For Hillel Panitch,
my primary MS doctor and the relentless researcher of MS,
who had stellar bedside manner and
who I really had to be talked into seeing by my eye doctor. In the end he became my first choice neuro doctor and I am very picky, being an "old neuro nurse".
I wrote this shortly after I found out he was gone.
I was sitting in the McDonalds parking lot,
Eating my lunch on the road where I work
(I still work full time, thanks Dr. P...)
And helping them access personal care.
The clinic called and my heart always skips a beat when they call me
Back to my other reality....
This is YOUR life, not some other sufferer.
They wanted to invite me to a tribute to Dr Panitch.
I was on the “a” list.
I looked around, was there anyone looking at me?
Did anyone see? Hear?
I wanted to be polite, respectful,
I wanted to say, Yes.
My schedule flashing in my head.
How could I do that, I thought.
It is for the MS society.
The people who thought my MS story was too long and when I shortened it they said it wasn’t quite right.
But it is for Dr Panitch, I thought,
A lifetime achievement award.
No, I said, so plainly, No.
I am honored (and I was sincerely),
But I cannot do it.
I lived in two worlds,
The Neuro Nurse and the Neuro patient.
My friends, coworkers from 30 years ago would be there,
as health care professionals.
How would I fit in?
My world, a subset of both nurse and patient.
Hearing he is gone from our material world,
I am relieved I was not there,
That my memories can be of him standing in the hallway,
Trying to peek at my progress on his study meds,
Briefly making eye contact, I smiled at him,
Trying to say what he has done for me is appreciated.
He has bought me some time,
He has given me expensive cutting edge treatment I would have otherwise gone without,
He put his hand on my shoulder and said, “Don’t worry, we will take care of you.”
He meant every word.
by Herrad of Access Denied
Giorno Di Mercato, 1976
The thing I love most about the internet is that it gives me the ability to communicate with people all over the planet.
That is really what the internet is all about, simple and straightforward communication and participation.
Nothing compares I think to the pleasure of "talking" to people every single day around the world and sharing our stories and information.
I get an opportunity to explain my opinions, viewpoints and share information which may be helpful to others.
My words are not changed by anyone, every post, with the occasional interesting article, has been written by me.
My blog welcomes comments which lets visitors tell me what they think of my posts and share their stories.
In the 4 years since I started blogging I have made many friendships and received and given alot of support.
I get a lot of positive feedback and comments which make my life so much better and stops me being isolated.
When I got my MS diagnosis on 19 July 2006, I started blogging the next month to receive and share information about MS and the difficulties of becoming handicapped.
This was also in order to make sense of what was happening to me, but also to communicate with other people with MS and without MS.
I believe that blogging has expanded my horizons and I have no doubt that the internet has saved my life.
It enables me to communicate with others around the world, even when I could not leave my bed for two years.
This was from August 2008, due to a pressure wound, this finally healed in August 2010 and I could sit in my wheelchair once again.
Since early 2009 I have been writing a blog post every single day, something that would have been unheard of 3 years ago.
I communicate regularly with people I have never, and sadly, will never meet, except online.
The internet has enabled me to communicate with others and be part of the world.
That is what the internet has done for me, it enables me to participate not just to consume, and despite my MS I can and do participate in the world.
It has helped me despite my severe disability caused by my MS to communicate, which has been and still is being a supportive and liberating experience for me.
by Joan of A Short in the Cord
The most important lesson learned is that I should not plan to have the same level of energy that I had before disability. Last year, there were too many times when I believed that I was normal and had the same energy level that I had before. So I filled up my schedule, made commitments, volunteered endlessly, and then crashed in confusion. "What happened?" I would whine. Then I would go to the doctor looking for yet another prescription, or try alternative therapies that friends said were successful for them.
But last year, I lost sight of my authentic self. I lost sight of the reason for my disability. This next year, I am going to ignore the cultural message that "You Can Do Anything You Set Your Mind To and Don't Let Anyone Tell You Otherwise." Bullpoop. I'm going to avoid going to lectures by people with MS who climb Mt. Everest or travel the world in 80 days. I am not using them as role models any more. I will be my own authority and not succumb to peer pressure.
This next year, I pledge to do less. I pledge to focus on a few fundamental activities, and to avoid saying 'yes' to everything. I pledge to give serious thoughts to my priorities. And I AM prepared to deal with the disappointments - mine and others.
Just thought you should know this now so that you will be prepared for a different year, too.
Happy New Year!
This concludes the 79th edition of the Carnival.