Comments on Wheelchair Kamikaze: Present Imperfect

Very well written and its a truth we never want to...

2011-01-28T16:42:39.973-05:00

Very well written and its a truth we never want to face. I do not have MS but my life changed in 1989, again in 1992 then a car accident (when my wheelchair and I were run over by one) changed my life to what it was till two years ago. I was left alone in the world when my parents died. I now have friends who live with me and it is working out well. They get to help and make themselves feel better and I have help its hard to live without.

The loss of independence. One of the things that s...

2010-03-06T22:05:32.943-05:00

The loss of independence. One of the things that scare me the most about all of this. I am and always have been very strong and independent. No one was allowed to see any weakness or be around when I was vulnerable. Well that all ended about 2 years ago for a couple of months. I've regained most of my independence but I know that I have to overcome my own pride and embarrassment if I'm not to shut out the ones that love and care for me and to get the most I can out of whatever life throws at me. Good luck with your battle. Mine is still being strongly fought.

Many thanks for your thoughts. As a 'caregive...

2010-03-02T12:36:13.551-05:00

Many thanks for your thoughts.
As a 'caregiver' (what a wierd word) I know what it is like to stand and observe as your wife, Karen, does. Sometimes it is simply impossible to know when to keep quiet and when to offer help.
But as you point out asking and giving help is what turns all those 'independent' individuals into a community. Together we are stronger.
We could live in the country and surround ourselves with razor wire and arm ourselves to the teeth.... Or we cound live in communities and just ask ' how are do doing..' occasionally.

Marc, You are a gift to the MS community -- maybe ...

2010-03-01T14:34:54.919-05:00

Marc, You are a gift to the MS community -- maybe the only positive aspect of having this crappy disease. Keep on writing and expressing our situation with intelligence and beauty.

beautiful post, Marc. Thank you. The thing is- i...

2010-02-27T22:09:47.533-05:00

beautiful post, Marc. Thank you. The thing is- it's the same for all of us. Even we able-bodied folks sometimes need a hand, just to get thru another day. In recent years, Jeff and I have both had to learn how to ask for help....and in doing so, we've allowed other folks the blessing of coming to our aid. Thanks for sharing your thoughts. They're just what I needed today. Hi to Karen.... xo, Joan

Having just found you blog a month or two ago, i j...

2010-02-27T10:49:27.068-05:00

Having just found you blog a month or two ago, i just wanted to pass along my appreciation and sympathy. I'm not good with words, but your blog captures alot of the subtleties of MS, as well as provides fair and unbiased information which in this day and age is so rarely found online.
I myself was diagnosed with MS ten years ago and have gone from biped to triped to quadricle since, the chair being the latest haven as my legs go all nutcracker-like with the lack o'bending.
Luckily, I'm still able to keep up with a manual wheelchair despite the too frequent Colorado snows, and when I saw the title of your blog, I thought there's someone I can relate to, and I was gratefully happy to read up. Thank you for providing good and well written words for the MS community. If you're ever really bored, I'll send off my wheelchair in an escalator video for your personal boredom.

Keep both the good work and yourself up!

O'Boise in Colorado

Thank you for having such a good way with words. ...

2010-02-27T09:34:04.334-05:00

Thank you for having such a good way with words. You are absolutely right in saying that receiving help benefits both the giver and receiver.

Anonymous-you're welcome. Peace-thanks for th...

2010-02-27T03:55:30.632-05:00

Anonymous-you're welcome.

Peace-thanks for the kind words, and for contributing your poem to my blog. It states the sentiment very well.

Dabble-wise counselors are indeed quite important. Strange that MS does bestow some gifts, even as it robs us blind. Sounds like a good book, I'll try to find it and check it out.

Beth-thanks for the kind words, glad I could be of help.

Hollie-perhaps we should start a "Declaration of Interdependence". You can be our John Hancock, signing it with a flourish...

Tom-glad you found the blog, and are enjoying it. An electric boogaloo, to you, too

zoom-it's a struggle because it requires us to redefine our notion of ourselves. Those notions are built over a lifetime, not so easy to shake...

anonymous-I think it's just that most of us struggling with this illness share many of the same experiences, though we don't often talk about them. Once dragged out into the open, everybody takes a gander and says, "why yes, that ball of confusion does look familiar".

Anonymous-this disease often finds us at a crossroads. I think Yogi Berra once said, when you come to the fork in the road, take it...

weeble-there is something about being in a wheelchair that makes you speak up. We must pick our battles, and choose wisely. Sometimes even a warrior cannot do it all from within.

Waz-I'm glad I could shed some light. Thanks for commenting.

Thank you Marc. I don't have MS, but thank you...

2010-02-26T16:57:50.907-05:00

Thank you Marc. I don't have MS, but thank you for helping me understand a bit better what people I see with MS are and will be trying to deal with.

I hear ya. Last night I had to ask my husband if ...

2010-02-26T15:36:52.884-05:00

I hear ya. Last night I had to ask my husband if there was time for me to have a bath. Of course there was time and the bath did us both a favor, lol.

One thing about asking for help comes to mind. Now that I'm in my wheelchair, when I'm out in public it is easier for me to ask for help than when I was with a cane or walker. I was more tired with a walker and actually needed more help. Maybe I've gotten used to the idea of asking. Maybe somewhere inside it feels more justified (though needing help while using a walker is *very* real).

Strange and sometimes wonderful things evolve as my body diminishes. I am learning to pick my battles.

Thank you. I'm at a crossroads of sorts with t...

2010-02-26T14:49:45.511-05:00

Thank you. I'm at a crossroads of sorts with this disease. "...asking for help simply keeps one from being helpless," is the thought I will ponder today.

Marc, how is it that you have the uncanny ability ...

2010-02-26T14:31:08.761-05:00

Marc, how is it that you have the uncanny ability to know what is on my mind on any given day?? You must be an angel sent to help me grapple with my inner demons. Thank you for so eloquently expressing what I cannot, thank you for sharing so candidly. Blessings to you and to me and all the others who struggle mightily with this Beast.

Well put, Marc. Even though I know that struggling...

2010-02-26T14:01:01.711-05:00

Well put, Marc. Even though I know that struggling with something I can no longer do is a frustrating, pointless, waste of time, I waste a lot of time that way. Why does it feel like such a deal to ask for help? Maybe it shouldn't, but it does. Thanks for a thoughtful discussion of a difficult topic.

Just stumbled on this site a couple of days ago......

2010-02-26T12:27:55.287-05:00

Just stumbled on this site a couple of days ago...what a pleasant surprise!
My wife and I are big fans already...love rolling down the streets of NYC
on yr adventures...this will definitely be part of my daily routine.
It's good for the heart and soul. Thank you , bless you & boogaloo !

One of my favorite lyric snippets is from U2: &qu...

2010-02-26T11:29:43.824-05:00

One of my favorite lyric snippets is from U2: "We get to carry each other." I like that they used the words "get to" and not "have to." Everyone gets to carry and everyone gets to be carried. You get help with opening jars; you also get to help others through this blog with your wisdom and humor. Being interdependent is one of the best parts of being human, in my opinion.

Marc - you have an incredible way with words. Your...

2010-02-26T10:40:26.063-05:00

Marc - you have an incredible way with words.
Your last paragraph brought clarity to me today - I will hold on to it.

Well-written, MArc. One of my wiser counselors as...

2010-02-26T09:17:27.022-05:00

Well-written, MArc. One of my wiser counselors asked me (i had been talking about the surprise "gifts" MS gave me, like time to write and think and etc., taking pleasure in the everyday...and she asked if learning how to ask for help, to be interdependent, rather than independent, was one of those "gifts".
I'm reading a book she suggested to me - "When things fall apart" by a Buddhist nun (I'd get her name but the pain gift is rather too intense now) - it is a good contemplative work about just this.

Beautifully written. Post MS onset, I too had to ...

2010-02-26T08:15:17.976-05:00

Beautifully written. Post MS onset, I too had to change my approach to living, as I described in the poem I wrote on my blog.
Judy

I had to learn to
ask for some help when needed.
This was new for me.

Strong independence.
That used to be my M.O.
Had to let that go.

Wherever I am,
I say, “Would you help me, please?”
People love to help.

Thank you.

2010-02-26T06:56:11.977-05:00

Thank you.