Boundaries and Brawls

A friend asked what I wanted the new blog to be when I was still in the birthing room eighteen months ago. I swallowed the real answer, which was, I don’t know. I do come out of television news, after all, the training ground for the triumph of form over substance. I did know what I wanted the blog to look like. Don’t bother me with questions of content. I want the blog to be a marketplace, I said. I had a picture of a food fight in my head.
No food is flying, but the more often I stand back, the more you write and respond to each other. Consider MB’s reference to subgroups among us. “Sympathy, empathy, compassion, pity—those of us who have disabilities are showered with all of these feelings from others at one time or another. Which one they offer us though is the difference between us being comfortable or uncomfortable.”
Then the wonderful observation offered by Aaron Ben-Zeév in Psychology Today. “Compassion involves willingness to become personally involved, while pity usually does not. Pity is more spectator-like than compassion.” To me, pity is superficial, if not patronizing. Your responses were wonderful, thoughtful and provocative.
All of you are adding depth to our subjects. I just throw out grenades and see where they land. That is the easy part. You catch them and toss them to each other. That is considerably harder. But we are too kind and considerate. A good brawl once in a while would be nice.

80 Responses to Boundaries and Brawls

  1. Christopher December 1, 2014 at 11:51 am #

    How about if I start one, since I’ve had a horrendous month and I need some clarity?

    Disability is bulls***! There is no rhyme or reason, no test of character, no higher purpose and no payoff from understanding–either of whatever condition you suffer from, or trying to be understanding of others. Guess what… most people with disabilities suck too! I go to lunch seminars put on by drug companies, hopefully to learn a bit more, but end up surrounded by a large group of whining freeloaders who capitalize most of the speakers’ time with incredibly asinine questions. Haven’t you paid attention to anything? Don’t you do your own research? Don’t you hold your own doctor accountable in your treatment, and question him or her like a CIA counter-terrorism specialist? And don’t even get me started about disabled parking spaces, using restrooms or having people get in my face when I self-deprecate, or call myself “retarded” for my own self-serving reasons!

    I may really suck too, but I’m tired of suffering fools and being “so understanding” or… uck, “inspirational!” I’m like everyone else… nobody special. Neither are any of you. The sooner you understand that, the sooner we can all get along with our lives, unfettered (look it up). Besides, I like ‘normal’ people. It scares the crap out of me to think I may have to settle for a disabled someone to marry someday–hell no!

    • Richard M. Cohen December 1, 2014 at 3:48 pm #

      C.-

      Amen, brother. I roll my eyes when I hear the word, inspiration. When people say that to Meredith in my presence, I always refer to her on the spot as a televangelist. Americans love heros and do not realize we are only survivors who want toi be left alone. And never srite books on the subject. People assume we know way more than we actually do.

      Yours in abject cynicism,

      R.

    • Hannah December 2, 2014 at 10:32 am #

      “It scares the crap out of me to think I may have to settle for a disabled someone to marry someday–hell no!”

      Stop right there. Don’t settle for just anyone. You’ll just be miserable. I think it is better to be alone. Really. Fill your time with volunteering and friends and thinking about your own life (but not TOO much navel gaving). Don’t settle to be in a relationship just because. That’s the worst choice.

      Here are some more meatball grenades. I think what you said is dismissive and sort of mean. I am not disabled, I’m chronically healthy, actually. Once in my past, there was this guy that I knew who was born blind. He was great. And I started really liking him a lot…like that dumb crush girls get in high school, but I was in my twenties and it was stupid. Thank god he was blind because I blush all the time and I am mortified at everything. But I reasoned with myself – “No, no, don’t pursue this, he is blind. It will never work. He is disabled.” BUT – he was hilairous, which I found very attractive. And genuine. And awesome. He also told me (as a joke) that every woman he had ever been with was a 10. It was an innocent flirtation that never panned out for reasons way beyond the disability. Looking back on it, I feel kinda sad…but that was a long time ago and it doesn’t really matter any more.

      Christopher, I think you should remember that great haiku that RMC wrote a while ago on the Twitter, especially the last line:

      Mirrors tell their truths.
      We should float above the fray.
      Purity of heart.

      I’m sure RMC’s “televangelist” could comment on this subject better than me.

  2. Louise December 1, 2014 at 3:18 pm #

    I’m kind of thinking you shouldn’t get married at all. Sorry, but you started it. 😉

    • Richard M. Cohen December 1, 2014 at 3:50 pm #

      He only has to marry a person with a discerning eye and a mouth that moves.

      R.

      • Hannah December 1, 2014 at 6:46 pm #

        Hey you could write match.com profiles with that kinda talk, RMC. You could charge extra by saying you’re a published author. Young guys don’t always have a way with words…usually they have no words. You could make millions of dollars.

        Also, if anyone knows a guy who’s single and about 30ish and has “a discerning eye and a mouth that moves” let me know. Now we (I) have hit the bottom of the barrel.

        Bombs away.

      • Hannah December 1, 2014 at 11:00 pm #

        This reply might show out of order on the comments section…but please, people. Am I impatient? Tell me when my jokes are bad. Tough crowd.

        My only real complaint with these comments is that I think people are censoring themselves unnecessarily. This isn’t TV people. No bleeping required. It’s healthy to use those fuckin’ swear words your mother taught you when she thought you weren’t listening.

  3. Brian December 1, 2014 at 3:37 pm #

    All of a sudden, a food fight looks pretty good. It’s better than a grenade fight!

    • Richard M. Cohen December 1, 2014 at 3:51 pm #

      You have not tasted my creamed spinach.

      R.

  4. Sandy December 1, 2014 at 4:15 pm #

    Don’t forget that we like to chat about things OTHER than our MS. For God’s sake we watch movies, read and are up on current events just like everyone else. Some of us are musical, artistic, athletic, and hilarious. We all still have the qualities that made us good friends and coworkers BEFORE we were diagnosed.

    When you say, “how ARE you” and I answer “fine” That means I don’t want to give you the details about my MS because either its none of your business or I just wanna talk about some effing thing else.

    And when we run into each other Christmas shopping just stare at my cane cuz you know you wanna and so do I.

    • Richard M. Cohen December 2, 2014 at 7:52 am #

      Sandy-

      I agree that we are just regular folks, but I do not recall reading about movies or music on this blog.

      R.

  5. Yvonne December 1, 2014 at 5:47 pm #

    Bravo. We shouldn’t treat each other with kid gloves. We don’t want special treatment from others because they see us as different so let’s ease up on some of the disability comraderie, the us against them no matter what. Sometimes we can be assholes striving to hold onto independence. Civil can be followed with disobedience so a brawl now and then can recharge the spirit. I am guilty of using kid gloves instead of lacing up because the word “bully” is SO overused today. So everyone be warned…I’m lacing up the gloves and challenging when someone in here is spreading too much fairy dust . I will promise not to be a “bully” 🙁

    • Richard M. Cohen December 2, 2014 at 7:54 am #

      Sandy-

      I agree that we are just regular folks, but I do not recall reading about movies or music on this blog.

      R.

  6. Yvonne December 1, 2014 at 5:55 pm #

    BTW Christopher – I’m having a really bad month physically and mentally so I’m throwing a private pity party so everything pisses me off right now. I find in these moments I am the most honest which really freaks people out. I call it my zero tolerance for BS moment. So we all suck sometime.

  7. MB December 1, 2014 at 7:30 pm #

    While I cringe at phrases like, “you’re an inspiration,” “you’re my hero,” and “you’re so brave,” I also want people to at least (internally) acknowledge that this disability I’m living with often makes getting through a normal day incredibly difficult. When a meeting extends past the hour I usually go home, it takes everything I have in me not to just break down and scream out of sheer exhaustion and frustration. I’m not looking for pity, just a bit of empathy.

    I don’t think it’s expecting too much to want others to be considerate of us because of our physical limitations. We screw ourselves when we try so hard to be one of the gals/guys that we incapacitate ourselves that evening or into the next day as a result of that Herculean effort. We sure showed them, didn’t we?

    Get ready for this. There are times when I want people to cut me a break because of my disability. It’s not because I’m weak. or pathetic. or an attention seeker. It’s because at times I do need to have my physical limitations at least considered, and that’s okay with me.

    • Richard M. Cohen December 2, 2014 at 8:00 am #

      It is OK. I think I over react the other way. For years, when someone offered me their seat on the subway, I politely declined. What I was proving is beyond me. So I stood and hung on for dear life.

      R.

    • Jan December 4, 2014 at 5:35 pm #

      Understandable (and relatable), MB.

  8. Geof December 2, 2014 at 8:50 am #

    There are certainly times when people say things like “Here is an MS patient fostering medically fragile kids and working full time. Despite his MS, he even finds time and energy to work on the board of…” Puke!

    Is my life normal outside of MS? If I did not have MS, would any accomplishment of my life be worth mentioning? I hope so. Of course I also wish my life was more normal, but only in the moments of pure crazy hubris when I admit I want the world to be more like me than me like the world and take better care of those whose existence society often fails to acknowledge.

    I will admit I sometimes want it the other way on MS recognition when I just can do no more, like the past couple weeks as we move and my job gets stressful. Then I will invoke my MS to explain staring off into deep space and sleeping more than my usual 5 hours. So I am a hypocrite too. I just put my MS back into the Christian, “Give unto Caesar…” For me, it is “Give unto MS…” but no more than MS is due.

    • Richard M. Cohen December 2, 2014 at 7:24 pm #

      Ypu are wise. And I lopve to say, Puke.

      R.

  9. CP December 2, 2014 at 1:17 pm #

    How I happened upon this blog is somewhat of a mystery to me since I don’t have MS or any other chronic illness though I do have a teenage son that has dealt with a long standing illness. I’m not one known for silencing unsolicited opinions so here’s my grenade. I’m an occupational therapist by trade and over the past several decades I’ve seen countless patients with a myriad of diagnoses. I never pity people and I never let a disability define the person. Still, there are those patients that are inspirational. Anyone that faces an adverse situation with determination, humor and hard work is an inspiration to others. Just having a chronic and/or progressive illness doesn’t make you inspirational. It’s how you live your life that is. So, if you’ve been called “inspirational”, stop complaining. Like it or not, you’ve effected someone else in a positive manner.

    • Geof December 2, 2014 at 3:53 pm #

      CP,
      Thanks. I’ve always taken it and meant it as a compliment.

    • Richard M. Cohen December 2, 2014 at 7:29 pm #

      Puke. Just kidding. Coping is it’s own reward. Survive and flo0uerish.

      R.

    • Jan December 4, 2014 at 5:39 pm #

      I can relate… life is often all about how we respond to life’s circumstances, whatever they may entail; how we view ourselves, others, and situations–and then how we react. Thank you for your insight, CP.

  10. Yvonne December 2, 2014 at 5:25 pm #

    You’re right CF. Everyone facing chronic disease is not inspirational. People think saying it to you is complimentary but you know most of the time it’s no more than you trying to get through the day. Do you tell them that today is not inspirational and obviously their perception of what is inspirational must be very low? It’s an overused word that can be annoying for those with disabilities. At the end of a challenging day that I barely got through, it’s the last thing I want to hear. Ghandi is inspirational, I just have MS.

  11. Louise December 2, 2014 at 6:33 pm #

    My son won an ” inspirational poem” contest when he was graduating high school. The prize was to read the poem at graduation. As he began he said ” this is my inspirational poem. I hope it inspires you”. My point is inspiration is in the eye of the beholder, no?

    • Richard M. Cohen December 2, 2014 at 7:31 pm #

      Yes.

      R.

  12. Kat December 2, 2014 at 7:32 pm #

    I don’t feel annoyed or sad if somebody calls me inspirational. I feel actually okay about it. I know that they truly do not understand what my day is like. I am 44 years old and in a scooter. One of my friends who had to to have all four of her limbs amputated due to a surgical infection called me an inspiration. Really!!??

    • rm cohen December 3, 2014 at 4:31 pm #

      incomprehensible.

      R.

  13. MB December 2, 2014 at 9:47 pm #

    I’m really having a hard time crafting my response to the “stop complaining” comment.

    There’s a distinction that should be made between venting frustrations with people who are in a similar situation and just complaining to anyone who will listen.

    Being called an inspiration because I’m coping like an adult does not put me in the Mother Theresa category. What exactly did I inspire someone to do? There are times I’m told I’m an inspiration but I don’t see those I’ve inspired running out and advocating to make my life any better by reporting that a bathroom is inaccessible to the handicapped or that a sidewalk has a decaying curb cut. I’d be proud to be called an inspiration if I inspired someone to act on the behalf of people with disabilities.

    The vast majority of people mean well when they call someone with a disability an inspiration. Maybe what I’ll ask after I’m told that is, “What have I inspired you to do?”

    • CP December 2, 2014 at 11:02 pm #

      You make a good point MB. It would be nice if more people became advocates for the people that have inspired them. I like the question “what have I inspired you to do?” I’d love to hear the answers you get. I know I’ll be more cognizant to act rather than just bask in heightened feelings and emotions after being inspired.
      I know I’m not in the MS community and I probably don’t have the right to ask a question but I’m wondering…what and/or who inspires you all?

    • rm cohen December 3, 2014 at 4:35 pm #

      I am with you. Overused and devoid of meaning.

      R.

      • Elizabeth December 5, 2014 at 5:35 pm #

        My complaint with “inspiration” is when someone uses it to try to slough off or explain away chronic illness as if you can sprinkle fairy dust on me like Tinkerbell or I can click my heels and just feel better. , ” I feel like shit today.” I may not tomorrow, but I do today and when I see the “You got this” MS stuff and all of these people who can stay very active, I’m so happy for them, but don’t project on me that if I just eat right and exercise I will be able to increase my quality of life. I’m sure if I had an appetite, and if my left leg were as strong as my right, and I didn’t trip over my own feet, or fall against the wall just walking to the bathroom, I would probably feel like a frickin magic fairy that could do anything. As if it were that frickin easy. Ok, writing that inspired me, to do what, I don’t know. I’ll decide later.

    • Jan December 4, 2014 at 5:43 pm #

      Uh, huh… productive venting, I think, means to be real, yet to be searching for a solution and also being available in a two-way sort of way (bouncing opinions, suggestions back-and-forth with a purpose in mind of helping each other).

  14. Christopher December 3, 2014 at 3:57 am #

    Damn skippy, MB! I believe most of the time that stupid word is just a placeholder for a space where someone can’t think of anything else to try and prove that somehow we’re connected in a profound way–it’s actually false sincerity. You are also spot on about paying forward that inspiration. If I inspire you… prove it! I don’t need any more smoke blown up my ass. I get plenty of that from my neurologist, and so much so that my colon should have lung cancer by now. If people see me continuing to get out of bed and go to work everyday (why they’re in my bedroom, I couldn’t say), it’s because I want to go and also because I have bills to pay. I don’t have anything to prove. I’m not trying to be some gimpy Tony Robins–although I’d love to see him try walking on hot coals with foot drop! I am just me, and for most of my life people pretty much avoided me. I am not anyone special, nor do I have super intelligence or special powers. But now that I have this horrendous disease, that no doctor in the world knows jack about really, I have become more interesting to people. Yet it isn’t in any substantive way. I’m more of a curiosity, a free, traveling freak show. And I’m inspirational ?!

    Please throw a dollar in the hat when you leave.

    • Yvonne December 3, 2014 at 9:00 am #

      Christopher and MB…you are inspirational and here’s why: you inspired me to ask the question” why do you find me inspirational” . I will resist the temptation to say it satirically with a furrowed brow. 🙂
      I agree it is a placeholder in many conversations, especially with casual acquaintances and strangers. It’s like really, you don’t even know me (and haven’t seen me on my challenged my zero tolerance for BS days unless you wouldn’t think that) Thank you both your inspiration and you should feel no draft in you nether regions with my acknowledgement 😉

    • MB December 3, 2014 at 11:26 am #

      Oh my gosh, Christopher. You win the prize for the quote/thought/visual of the day!

      “I don’t need any more smoke blown up my ass. I get plenty of that from my neurologist, and so much so that my colon should have lung cancer by now.”

      I’m using it!!

    • rm cohen December 3, 2014 at 4:40 pm #

      You cannot be inspirational when you are pissed of. Clearly, the latter is the real you. So go for it, and don’t be too nice to anyone.

      R.

  15. Jenny December 3, 2014 at 1:58 pm #

    When people who do not live in my house, call me inspirational, I politely smile and say thank you. They truly do not understand that this disease is a 24/7, 365 day a year struggle with no minute/hour or day off. I think they say it because out in public they see me somewhat normal even though I use a scooter. They don’t see the difficulties of getting out of bed, showering, getting breakfast, trying to reach back into the refrigerator, getting my coat on and off etc….
    I think if they saw the “true” monster they would be amazed and inspired how I keep going. If they would understand MS the way it really affects me, they would become advocates for us all. Until then…. “You Inspire me” is just a filler statement as some of you have said.

    • rm cohen December 3, 2014 at 4:43 pm #

      Agreed.

      R.

  16. Linda Lazarus December 3, 2014 at 4:31 pm #

    Christopher…and everybody else…
    Great comments. I am having one of those exploding days and the comments here let the steam out. I may not explode today. Then again…

    Smoke images and asses…I may not go to sleep for fear of the dreams those images could contort into.

  17. Linda Lazarus December 3, 2014 at 10:06 pm #

    I was not sure where to put this link but thought it was important to post…on first US patients to use Lemtrada.

    http://www.al.com/news/index.ssf/2014/12/newly_approved_multiple_sclero.html

  18. MB December 3, 2014 at 11:21 pm #

    Possible answer to your last Twitter post, Richard:

    Clonus (from the Greek for “violent, confused motion”) is a series of involuntary, rhythmic, muscular contractions and relaxations.

    I get that, too. Pretty common MS symptom, I think.

  19. Christopher December 4, 2014 at 5:22 am #

    I’m really not trying to inspire, just trying to be honest. I think we all use language differently, to our own ends. I don’t know for sure so I’ll ask Noam Chomsky someday. Originally I was trying to offend to get people riled up and start a brouhaha, per the original post… but the people here are incredibly respectable. Also wicked-smart, and can see through my faux churlishness. I am pissed off, in a way, but I really can’t stand that part of me. I use humor to deflect ugly, messy issues and I think many times it works better than pointed realism. Unfortunately, sometimes it may dilute the power of some explosive emotion that really needs to be let loose to be dealt with effectively–sometimes you don’t pick at a band-aid, you tear it off. I’m still learning, and I’m appreciative every time anyone points things out or calls me out on my near-nearsightedness. I should have known better too, because I’m not good at fighting… physically or verbally. I am good at being protective, and that can be dangerous to others.

    Objections in mirror are closer than they appear.

  20. Linda Lazarus December 4, 2014 at 6:49 am #

    Sandy-

    I agree that we are just regular folks, but I do not recall reading about movies or music on this blog.

    R.

    Reply
    Saw the movie “The theory of Everything” . Seeing that film as someone involved in a long love affair will give many of us a sweetly sad perspective. It is all consuming to love us. It probably is not fair to expect partners to stay decade after decade. What of their lives?

    Different perspective on the film but I like the civilized, inevitable corruption of a love affair. Nothing else matters. Disability steals everyone’s life.

  21. Lisa PD December 4, 2014 at 7:02 am #

    I saw that movie too and loved it. I find myself thinking of what he says that without life there is no hope. I saw the movie with my husband and it made me feel guilty that my disability is affecting his life. I guess we just have to take it one day at a time. I know that if he was sick i would be there but for some reason when the shoe is on the other foot I feel gulity if i need help although he doesn’t make me feel that way. Good old Catholic guilt!!!!

    • Richard December 4, 2014 at 4:16 pm #

      I relate to that slightly irrational scenario. It is like my goofy habit of apologizing when I fall. It is as if our illnesses are our own fault. The amature shrink in me says we think people think less of us, and so we think less of ourselves. That will be ten dollars, please, discounted because you are stuck with your own guilt.

      R.

  22. Betty December 4, 2014 at 5:06 pm #

    It’s a big, fat mess. We’re losing ground, doing less, feeling useless and lonely in our heads, smiling for the cameras, and apologizing for falling down. Then, there are our partners, our friends, and caregivers with pity or compassion. Who knows the truth? How are they doing with all this? Where do they fit in, and how long can they last? Do they need to scream, and cry and punch a wall? It’s the quiet, stoic ones we have to worry about. It’s enough to carry this monkey around on our own backs, as we try to make it easier for others. A big, fat mess indeed.

    • Richard December 5, 2014 at 3:00 pm #

      Depends on nature and intensity of caregiving. I go as lightly as I can. Meredith has enough on her plate. And the less I depend, the better I feel.

      R.

    • Richard December 5, 2014 at 3:01 pm #

      Maybe not. Depends on nature and intensity of caregiving. I go as lightly as I can. Meredith has enough on her plate. And the less I depend, the better I feel.

      R.

      • Elizabeth December 5, 2014 at 5:46 pm #

        Interesting thing I hadn’t thought about. I’m a grouchy bitty when I need help, or I do stupid things like carry something down the stairs that is too heavy and my balance is off, just to prove I can do it without killing myself. Why?

  23. L December 4, 2014 at 5:29 pm #

    Since you kind of requested some rudeness and drama…

    I’ve been biting my tongue about this for months. This blog has taken a direction I didn’t anticipate and frankly, it’s kind of disappointing. It seems some people spend far too much time making their realities miserable by overthinking things that deserve so little thought. You make your reality (to a great degree anyway). Make it something better by thinking something…anything!!…better. Who cares if thinking about fluffy bunnies is beneath your intellectual capacity if it makes you happy? If it makes you happy, it accomplishes a lot more good than pin-pointing exactly how and why things beyond anyone’s control are so horrible does.

    I don’t really care to read about fluffy bunnies but something more positive and proactive would be a pleasant surprise.

    • Hannah December 4, 2014 at 6:09 pm #

      “[Inner] peace is the result of retraining your mind to process life as it is, rather than as you think it should be.” – Wayne W. Dyer

      At certain points in everyone’s life, I think the phrase “This isn’t fair!” has cross the mind, or even come out of our own lips. No shit. It isn’t fair, and we all know that. So what are we going to do?

    • MB December 4, 2014 at 11:49 pm #

      Maybe I’ve misinterpreted the intent of this blog, but I spend all of my daily interactions with people projecting a positive attitude. To be honest with you, it has been refreshing commiserating with people who are experiencing the challenges that this disease brings.

      I think Scott Hamilton said, “The only disability in life is a bad attitude.” Do you know what I say to this? Bullshit.

      Today I went into a restroom where the door was too heavy to open. After a gentleman opened it for me (the ladies room), the divider inside the restroom was too close to the door to easily move past it in a wheelchair. Back up. Go forward. Back up. Go forward. Then, the door to the stall swung the wrong way.

      Now you could say that a positive attitude would have made the situation less traumatic. I’d have to counter with another, “Bullshit.” This is a reality of being disabled in our world. Why in heaven would I comment on this blog and say, “I had trouble accessing a bathroom today, almost pissed my pants, but the muzak playing over the speaker made me feel warm and fuzzy inside” ?

      I pretend that everything is cool 99% of my day. If I have to pretend here, too, I’m really not that interested in participating. Plain and simple, MS is a beast. It’s nice to come here, take off my happy mask, and let out a sigh knowing I’m not alone in my frustrations.

      • Christopher December 5, 2014 at 3:41 am #

        Very well put, MB.

      • Yvonne December 5, 2014 at 8:03 am #

        Thanks. That was a perfect example MB!

      • Elizabeth December 5, 2014 at 5:50 pm #

        I’ll call your “Bullshit” and raise you a “Double Bullshit”. Nice post.

    • Richard December 5, 2014 at 3:07 pm #

      In my years at CBS News, others would complain,why don’t you ever do good news? Because it is not news. This blog was intendedfor opening up, revealing ourselves and sharing. I am one of thee least warm and fuzzy types you will meet. I am sorry you are disappointed, but I think venting is constructive.

      R.

      • Hannah December 5, 2014 at 4:06 pm #

        Wait, you aren’t a giant kitten? You had me fooled. Forget this blog.

      • L December 5, 2014 at 4:34 pm #

        Venting is constructive in a therapeutic and, I guess, bonding kind of way but it’s not good for much else. Too much complaining and hyper analyzing the various intricacies of suckness and not enough doing only serves to keep you down.

        My assumption that posters spend their days thinking these negative thoughts has been denied by some. I hope it’s the same for all.

        Have you ever googled “stop watching news?” The results seem to support my standing on the tone of this blog (not just your tone either).

        I can and do go elsewhere (mostly research based…the fluffy sites aren’t for me either) and I am happy for you if you’ve achieved your goal here. It seems you’ve pleased most others with the results as well. Don’t apologize or change things for me. I wouldn’t have said anything or engaged in further discussion had you not been craving some discord. I do feel better for having said something though. So thanks for opening up the floor. : )

  24. Jan December 4, 2014 at 5:55 pm #

    Hey Richard, I appreciated the quote you included: “Compassion involves willingness to become personally involved, while pity usually does not. Pity is more spectator-like than compassion.” Totally makes sense.

    All, I’ve found it helpful to focus on what I CAN do, not what I CAN’T do, and to get out of my little world enough to understand and help others amidst it all. It’s about “relationship.” With it, compassion naturally flows both ways.

    Nourish your souls in other ways than with catching food thrown across the table. (It makes for too much dirty laundry). It is good, though, to be honest with one’s feelings and get them to the surface.

    • Richard December 5, 2014 at 3:09 pm #

      Good attitude.

      R.

  25. Yvonne December 4, 2014 at 7:53 pm #

    I dislike fluffy bunnies. Actually I’m not a fan of fluffy anything. Stating your reality is not whining. Every story does not have a happy ending but the story still needs to be told and people will listen and many can relate. Reality is what it is and I’m not making myself miserable by accepting a fate that I can not change. I live within the reality of MS. Denying the horribleness of this disease doesn’t change the path.

    • Jan December 5, 2014 at 10:16 am #

      Yvonne, I really do understand about reality and some venting (even with expletives, if that is their way). Frankly, I’m not always the best at accepting reality–I just plow ahead amidst it all. It doesn’t mean denying the horribleness of MS (it can truly be horrible, as can its ramifications), nor will it necessarily change the health path. But regardless of one’s situation, we do have choices.

      I myself sometimes need to vent (some of it on the blog made me chuckle; some of it stung with a compassion in understanding), but then at the end of the day I choose to look for the positive, for grace… and then to use what I’ve learned to help others in some way, however small. I won’t detail all of what I’ve personally been through, but I am appreciative through it all for what I have learned and how I am able to relate to others.

      I think it’s okay to be real and for us all to relate different perspectives. We are who we are. And sometimes we can change. But we can all likely help in our own ways that speak to various people.

    • Richard December 5, 2014 at 3:10 pm #

      Amen, sister.

      R.

  26. L December 4, 2014 at 10:53 pm #

    I was dealt an incredibly sucky hand in life long before ms came along. If I dwelled upon how awful my circumstance is, in the very least, I would be suicidal. Instead, I choose to embrace the good that is all around me and control the aspects of my life that I can control. I know the bad is still there taking so much from me, but I am very happy all the same. My circumstance isn’t a blessing. My ms isn’t a blessing. But there are still so many blessings to be counted. Ms is only one part of your reality. Occasional venting is necessary but dwell upon the better parts of life. You and those around you will be happier for it.

    Peace.

  27. Yvonne December 4, 2014 at 11:41 pm #

    Myself and those around me are very happy What makes you think discussing the negative aspects of ANYTHING makes someone unhappy? How small is your world with only sunshine and flowers? Without negative positive does not exist. Nobody here is dwelling. It is a great place to discuss and share experiences some good some bad. There are plenty of “the sun will come out tomorrow” blogs. I prefer here thank you where the sunshine isn’t so blaring.

    • MB December 4, 2014 at 11:50 pm #

      Thank you, Yvonne.

    • Richard December 5, 2014 at 3:13 pm #

      Agreed.

      R.

      • Elizabeth December 5, 2014 at 5:58 pm #

        I think that this is exactly the place to dump some frustrations with like minded people so that we aren’t always venting to those we care about. I like you all but you can read my post and shut down your computer. My husband can’t. I’d rather dump here every once in a while because we all know why. That way I can relieve his burden a little. Is that ok?

  28. L December 5, 2014 at 9:09 am #

    I’m glad the posts here aren’t a reflection of general life attitudes. It’s hard not to make such an assumption when the flavor of posts is typically bitter.

    I still believe bitterness begets bitterness and it should be tempered. That’s my problem though.

    I also believe there are some gripes that can bring about change. Gripe to the building admin and whatever handicap accessibility powers that be about that poorly designed handicap stall (or pee on the floor and leave a note).

    • Yvonne December 5, 2014 at 10:14 am #

      Now that was funny as hell “pee on the floor and leave a note” I would have said ROFLMAO but I can neither roll or get on the floor so LMAO 🙂

    • Richard December 5, 2014 at 3:14 pm #

      Bitterness? Am I missing something?

      R.

    • MB December 6, 2014 at 6:27 am #

      I didn’t gripe. I reported the situation, followed up with a letter, and when nothing was done, I contacted the ADA.

      It took about six months, but the problem was rectified.

      As an aside, the representatives of the ADA are very responsive. I reported another violation,which happened to be at a neurologist’s office, and got the same results.

      I guess injustice is my inspiration. 🙂

      • Christopher December 7, 2014 at 4:26 am #

        There is a guy here in Orange County who is notorious for reporting ADA violations to sue for the $1,500 for each one–many are questionable since they are in places not many people visit, let alone disabled people. And, the guy isnotdisabled. None of this is easy.

      • L December 7, 2014 at 9:53 am #

        Good on ya! Now I know what to do should I ever incur a similar situation. Thanks.

      • MB December 7, 2014 at 1:47 pm #

        I didn’t sue, but I periodically go back to check if the modifications that were made are still in place.

  29. L December 5, 2014 at 11:03 am #

    : )

  30. Louise December 5, 2014 at 4:02 pm #

    Kind of on topic – I just read a movie review that ending with the rating it said : “Parents strongly cautioned Strong language and sexual allusions, as well as an incurable disease.”
    People think I am crazy not wanting to tell my kids about MS. It seems the motion picture rating board knows how I feel, not for the tender hearted.

    • Richard December 6, 2014 at 7:48 pm #

      That rating is outrageous. No, stupid. Please tell you children. They will nevberrt forgive you.

  31. Dale December 8, 2014 at 5:19 pm #

    Wow. Go away for a few days and look at everyone here. Neato.

    OK I really do enjoy jumping into friends Facebook threads, creating a little havoc, and bolting with “I come, I disrupt, I Leave” Kind of like Richard tossing his grenade and watching what happens. Maybe like cockroaches scattering when a light is turned on. Fun stuff.

    I chose to watch Interstellar twice than face the true reality of Steven Hawking. He and Richard Feynman are heros to me. Feynman was brilliantly crazy, he would excel in a food fight. All trajectories would be planned out in milliseconds. His lectures are legendary, some are on Youtube. Along with a grad student presentation on the Physics of My Little Pony. More fun stuff.

    And so,
    When uncertain,
    when in doubt,
    run in circles,
    scream and shout.

    At least most of us can have that last line down.
    And with that, I Come, I Disrupt, I Leave.