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shevan 
6:13pm, November 3, 2009
For those of you who have been following my journal, and know of my recent injuries sustained earlier this month, I want to tell you of a message I got from a DS member (not a friend). This member suffers from cerebellar ataxia, spinal cord injury and MS. She is in a wheelchair, which is permanent for her. She sent a very caring message to me the other day, telling me of her struggles from being in "Disabled Hell" as I called it in one of the two journal entries about being a "cripple." Another friend commented how she is indeed a role model after I told her that myself.
Today I spoke to my girlfriend Nancy on the phone. One of the things we discussed were my experiences and attitudes from being laid up with this horrific ankle and knee injury. When I told her I wondered if I'd ever walk again, she immediately corrected me. She was with me when I saw my Primary after my injury, and the orthopedist who prescribed me "the boot." Nancy said, "No doctor or physical therapist has told you that you will never walk again." She chided me for being so pessimistic, for thinking the worst when there is no reason to believe it. We discussed how my Dr. wants me to walk with my walker, and how nearly impossible this is for me right now. We finished the conversation on a positive note. She will come tomorrow (she was not here all weekend - I don't expect her to be). I then went to the computer and logged onto DS. There was another message from this person. One of the things she said was that she wanted to be with me through my journey, and "....your legs may not get strong and you may indeed never walk again." To say I was devastated by this, is an understatement. Being bedridden for almost a month, for the first time in my life, I don't feel my mental health is stellar at this point. To hear I may be permanently crippled, instead of temporarily, was terrifying - even if this person is not a doctor. I still cannot believe what she said to me. Those of us with MS on DS who are not in a wheelchair, dread that eventuality the most. I just want to point out to my friends (and others) how words have a tremendous impact - especially when they are written. My fears are overwhelming now, and I am the most depressed I have been for years.
This is how DS can be a destructive thing. How could this person read my two entries and come to this conclusion?
Comments
I cannot tell you how much I agree with you - the problem is that it is hard to filter out the "trolls" before they strike. I can well imagine how frightening that would have been to hear what this person said. Encouragement does wonders for us - but gloom and doom can be, and is devastating. So much of our healing starts in the mind. I've had some very serious accidents in my life and I am fine now. If you were not going to walk again - the doctors would have seen that in the x-rays - they would have seen something.
This person's "diagnosis" was without having a clue as to what your condition really is. Suggesting that you may not walk again was an uneducated, fear-mongering statement. Regardless of the motive - it has troll-like overtones.
LindaJean
Actually I cannot believe she said that!! I mean - I believe that she did say it - I just don't get the reasoning.
I am so sorry that this happened - you need all of the comfort and encouragement you can get right now.
LindaJean
Again, Linda Jean - God bless you!!
shevan
You are welcome!
LindaJean
You would not believe the number of times that I, too, have been hurt by careless and thoughtless comments. You are a very strong person, and I know that you will do whatever you need to,...to be able to live your life as normally as possible. God Bless! Love, Judy
JudyWI
I'm sure I can't imagine why someone would say this for any reason. Even if there was some hidden good intention, can't figure what it might be, but even if there was, for anyone who just stops to think for a moment... which person on the MS boards hasn't, at least once,just been overwhelmed with the possibility that this will happen, or hasn't had bad moments of wondering if it's inevitablte? I do not believe that this will be the fate of the people here. I think that we will have long and happy lives and continue to have trials and help each other through and get to the next place. I think that this was cruel. I do not even pretend to be able to diagnosis a cold, let alone anything more. I am so sorry this happened and I hope that you pay it no attention. Or maybe, as you heal, keep in mind that you will be able to post your progress and reveal this "dx" for what it is, uninformed, mistaken, and mean.
pearlie619
In "Recovery, Inc." a self-help group all over the U.S. they say that "people do things that annoy us, not too annoy us." It would do you well if you took the high road and assumed that what she meant was that no matter how bad it was, she would always be there for you; even if this or that etc. I wouldn't assume that she meant you harm. Give her the benefit of the doubt.
lydia979
Thank you Linda Jean, Pearlie and Judy. What you said all makes sense and is comforting. Lydia - I think this person saw my topic as a venue to talk about her own more serious and permanent disability. Notice she took a lot of time talking about herself. I always question people who, when you confront them about something insensitive they have done, angrily invoke God, taking the stance that they have a relationship with Him and implying that YOU don't, and who take the patronizing stance of "praying for you" for what they think is a sin on your part, but is merely a reaction to their insensitivity.
shevan
When People Learn I Have MS
Immediately They Think The Worst
Give Me That Look Of Poor Dear Your Life's A Mess
Surely You Feel You've Been Cursed
Are You Worried About The Future
In My Mind I Think Quit The Depressing Lecture
The Word Disabled Doesn't Mean I'm Not Whole
I'm Still The Same Inward Person I Have A Soul
Can relate to what you are going through == take care ==
boomer51
Another delightful poem from Boomer - you are so on target! Thanks!!
shevan
I can only imagine how hard this must be for you at this time. Listen to what your doctors say and to your inner self. You will fight through this. It does take time to get over any kind of injury. Just take your time and accept the help from your friends and don't listen to anything negative from anyone!
Best wishes and a hug
Sharon
mooseyinn
Oh, and try to wear that boot more......:o)
mooseyinn
Thank you, moosey! I did wear the boot today for about seven hours - it was so hot - it was in the eighties today. I will try to wear it all day tomorrow!
shevan
she said it because she is "ignorant"--i wanted to say stupid. but that would have not been kind.
also, maybe she wants another member in her club.
i do not want other members in my club--for my friends i pray they never endure anything like the diseases we have.
she is a nut case; dismiss it.
there you go, sweet and to the points. oh, i cannot imagine how many messages i will get on this comment. but you know, shevan, i am a decent person. i just cannot handle when others inflict emotional pain on people. especially when the first thing they mention is that you misspelled their name.
love, lorrie, lorie, laurie, lory, laury, , or whatever.............
twinklee1
Dearest She, I am so sorry this person wrote such pessimistic words to you. She should absolutely know better and it is an awful thing to do to put a shadow on your recovery.
Sorry I have been away so much, just got back from Kansas and then I just got out of hospital yesterday (read my journal). will write you a private message shortly. You take care and concentrate on getting better and you WILL walk again, NO DOUBT ABOUT THAT. A pox on that lady!
Love you honey, Jani
janiM
Jani, I love you!!
shevan
death and life are in the power of the tongue. Just stop and think for a minute what the Lord is trying to convey to us with these specific words. There are two things to pick up from this verse.
The first thing that God is trying to tell all of us is that we have a certain amount of power in our tongues. Our tongue is referring to the verbal words that we speak out of our mouths to other people.
When God is using the word power, He is telling us that every single one of us has a certain amount of power residing in our mouth and in our tongues with the words that we can release to other people.
And with this kind of power residing in our ability to release spoken words to other people - God then tells us what can happen with this kind of power. This power can either be used to bring life or death to the person that we are speaking to. Think of the responsibility and ramifications of this revelation - that our spoken words to other people can either bring them life or bring them death!
You can either choose to learn how to speak and release positive words of love and encouragement and edification to other people in your own personal dealings with them, or you can choose to release negative words of condemnation, criticism, coldness and harshness. The choice is yours!
“Watch your thoughts, for they become words.
Watch your words, for they become actions.
Watch your actions, for they become habits.
Watch your habits, for they become character.
Watch your character, for it becomes your destiny.”
Tekoa
I like this one:
Do what you can, with what you have, where you are. ~Theodore Roosevelt
janiM
And Lorrie - I love you too!
shevan
Thanks again, Tekoa (beautiful advice), Jani, Lorrie, Linda Jean, Boomer, Judy WI, Moosey, Lydia and Pearlie (I hope I haven't left anyone out)! I feel so supported - you UNDERSTOOD!
shevan
I am PROOF that saying you will not walk again is BULLSHIT! I had my first symptom 28 yrs ago and up to breaking my left ankle could walk for a short distance to get to bathroom, bedroom ect. I was pessimistic that I would ever walk again. However pt therapist said NO we can get you back to standing and walking! Guess what I am standing and walking down the hallway w/walker. In my mind I thought ms and exercise did not benefit you a hell of a lot. As soon as the doctor says you may bear weight on that ankle start pt right away! We cannot judge this lady she may need to take some Prozac to say such a hurtful thing. Your friends at DS will be your cheerleaders and send you lots and lots of love....Nancy
nancy2
I am more willing to give her a break just because of what her own experiences are. It's kind of like, you know, having car trouble for a long time, you get to be an expert on the troubles of your own car...but that doesn't mean that you are an expert at ALL car problems. But that doesn't mean that sometimes you THINK you are an expert, you know? To me, it just means that you have a particular vantage point due to your own experience.
I can't help but think that she was judging your situation, She, by her own experiences and background, which are naturally, are quite different from yours. I don't remember the entire e-mail that she sent, but I had not interpreted it as malicious, just mistaken.
I am glad you have such BETTER words from all of the people above, to help you get your spirits back. We need our Sheila back and full of fire again. :) LV*M
LilMargie
SHE-SORRY I HAVEN'T READD JOURNALS; THINGS HAVE BEEN HAPPENING.
A POSITIVE ATTITUDE CAN HEAL OUR BODIES WHICH IS HOW I TRY TO THINK EVERY DAY. HAVE U READ 'THE SECRET'? IT TALKS ABOUT POSITIVE ENERGY ATTRACTING POSITVE ENERGY. IT MIGHT HELP U HON.XOXO
karenBBSR