Defending Self-esteem

When I step into the trap of believing I am less of a person than I used to be, is that a thinly disguised message from others or a self-generated attack on my own self-esteem? As Meredith walks beaches alone while I sit at the computer, when she shops in Provincetown as I sit at the computer, I do feel I am less of a person, less of a man. I, along with everyone else, am a product of my culture. Or is that, a prisoner of my culture?
I believe the answer is both.
As a person, I feel robbed, as a man, inadequate. Those are very different dynamics. Popular culture is reductionist, and Madison Avenue groupthink creates the ideal man. He is only a modern version of the Marlboro Man and a logical next caricature. We, the infirmed, are not that guy. He is perched on a stallion, not a Segway. How do we compete with that creation? By ignoring it, I think, and believing that our world is well stocked with others who do not buy into what they see on television or read in glossy magazines.
As a person, control seems less tenuous. I understand my limitations and feel the pain. No one asked for this. Then it is time to move on, recognizing all we are and always will be, rather than bathing in disappointment. That is not so easy. But we have it in us. I did not see the world as I do today, could not write or express myself until I was sick. I am not overwhelmed by what I can do, but I have more or less stopped mourning my losses.
We should not lose sight of the fact that we fight two simultaneous wars on parallel tracks. We battle conditions that only know attack and will not retreat. And we fight the view of us as diminished and pathetically beyond repair. Pat Buchanan used to instruct us to keep our powder dry, but we cannot shoot at common misapprehensions of sickness and assumptions about our physical flaws. We have to sell what we really can offer the world in return for open minds.

50 Responses to Defending Self-esteem

  1. Yvonne August 21, 2014 at 9:25 am #

    One of your best post. Getting ready to go into MRI room so can’t respond further but this post was exactly what I needed. Thanks so much for sharing your gift. I’ll be back later

    • Grandma August 21, 2014 at 11:11 am #

      Yvonne,
      Hope all goes well with your MRI!

      • Yvonne August 21, 2014 at 6:37 pm #

        Thanks Grandma. Changed Drs so new Dr wanted a baseline.

  2. henriette August 21, 2014 at 10:37 am #

    and this is the hardest part of having MS:

    “we cannot shoot at common misapprehensions of sickness and assumptions about our physical flaws. We have to sell what we really can offer the world in return for open minds.”

    thanks for reminding me….

    • Richard M. Cohen August 21, 2014 at 4:32 pm #

      My pleasure. And reminding myself.

      R.

  3. Grandma August 21, 2014 at 11:03 am #

    Richard,
    When I see you on TV you are still attractive and fashionable. When I read your words you are still intelligent and witty! Thousands of women would still be attracted to you. As an older woman I am seen as “that little old lady with the crutch”. I am no longer considered attractive and I used to be pretty cute! I miss those days. Which one is worse for a woman aging or disability? I guess that sounds vain so it probably is.

    • Richard M. Cohen August 21, 2014 at 4:34 pm #

      I think it sounds normal and makes you like everybody else. Aging is not for the timid/

      Best,
      R.

  4. David August 21, 2014 at 11:33 am #

    We probably all step into the trap, especially if we were once physically active.We become a burden to ourselves because we can no longer do such simple things.

    I too sit on the sideline as my wife walks on the beach or goes shopping.The loss is with me always and gets worse as I lose more ability

    Of course it can get worse, I know that and I am grateful for what I still have.

    Knowing these facts still doesn’t stop me from feeling like I am less of a person, diminished.

    These bodies of ours count too much, its just being human

    So we fight on , dream big and try to smile

    We are disabled at birth then we are able then disabled when we are old

    This MS just changed the order on us

    The way you have brought so many good people here sharing is wonderful

    Think of that and step out of the trap.

    • Richard M. Cohen August 21, 2014 at 4:37 pm #

      Will try. I seem to be attracted to traps.

      R.

  5. Mike August 21, 2014 at 11:38 am #

    This post is perfect. I have no idea who I am or how someone so alluring and down right gorgeous could be in love with me. This is not some cry for help or a plea for Prozac. No it’s simple math. When I am stuck in the chair on the beach and I watch my wife walk down the beach in a swimsuit that is jaw-dropping, I thank god that my 8 year old daughter is with her. It’s like bug spray or guy spray. Like bug spray some bugs will get through however it keeps most away. When my daughter walks with my wife some guys will try but my secret weapon will remind the unlucky Romeo that her daddy is right over there. I know some will say if you trust your wife you have nothing to worry about. I trust my wife it’s the guys with the wandering eyes I have little faith in. I want to be walking next to her so when “they” look up they see one lucky S.O.B. Instead I’m trapped, having to sit still and wonder how the walk is going. There is no pill for this symptom, no supplement to eradicate this feeling. This may sound like a jealous rant, but it’s just a byproduct of MS. As devastating as spasticity or fatigue or any of the symptoms listed in the handout. I guess low self esteem is one way to put it but it’s way more than that. It’s low self period. I’m sure there are fellow cripples out there who can say they are fine when their spouse is out on their own surrounded by able bodied individuals of the opposite gender. They can say it but deep down I’m not buying it. MS takes so much. I know I sound cranky but believe it or not this is coming from someone with a loving supportive wife who has never given me any reason to doubt her loyalty. Oh well I guess I’ll sit and ponder it some more. What else is there to do??

    • Richard M. Cohen August 21, 2014 at 4:41 pm #

      Maybe change the subject in your head.

      R.

  6. Christopher August 21, 2014 at 3:05 pm #

    That, sir… is a hard sell.

    A song by Taylor Swift recently caused an uproar in the music community, and I actually enjoy the controversy. It reminds me how many people are incredibly closed minded, and that I try hard to never be that way. Also, the song has really good advice–even though it’s pop culture–on how to deal with those hard-headed people, along with a catchy way to remember it.

    Just “shake it off.”

    • Richard M. Cohen August 21, 2014 at 4:43 pm #

      Agreed.

      R.

  7. Valerie August 21, 2014 at 3:09 pm #

    I too feel on the sidelines. As I sit, my husband does all the grocery shopping, walking the dog, etc. Your blog is so awesome and right on the money. Thank your for words.

    • Richard M. Cohen August 21, 2014 at 4:44 pm #

      A privilege.

      R.

  8. Christopher August 21, 2014 at 3:11 pm #

    Boy, timing in life…

    My comment about a “hard sell” is in reference to the original blog post. Mr. Mike, I apologize for the awkward timing of my reply.

  9. Jan August 21, 2014 at 6:52 pm #

    You cannot walk on the beach with your wife. I cannot walk around the block or ride bikes with my husband. (It’s hard on them, too). We all live rather comfortably in the U.S., and we know that.

    But it can still hurt.

    For all, life is relative. And life is about perspective.

    Life can be very short, indeed. It can be, as M.S. Peck mentioned, “hard.” (Hmm; just noticed his initials). But perhaps the real difference between the sick and “healthy” is that those of us who know and live such issues every day, every hour, can also know what is most important in life. We can make a difference, in however way.

    Re the “Ice Bucket Challenge:” I understand that it has had great positive financial fundraising impact, and that is good. It’s also likely a whole lot more fun than reading “Strong at the Broken Places”—It’s easier to have joy attached to a serious illness than reality. But for some of us, that reality involves not just a passing chill, a brief wake-up, a check written. ALS, MS, other health issues, losing a child can all be a chilling reality. It can make some uncomfortable, and who wants to be uncomfortable?

    Since I only have certain choices, I choose to live as positively as possible. I like to make a contribution somewhere in my life, however small. To make an impact IS to live. Maybe not in the way I had imagined, but in a full way. Also, I can talk about MS without a problem; I just can’t think about it too deeply. While I may have lost my figure skating, I gained my copywriting, my sense of who I really am (and who I am not). Not such bad things, overall.

    • Richard M. Cohen August 21, 2014 at 7:51 pm #

      My point, exactly.

      R

  10. Yvonne August 21, 2014 at 7:08 pm #

    My sister just went to Spain without me. We’ve traveled to many places but when she asked this time I knew I would never be able to keep up nor take the long plane ride. There are times when we just have to recognize we can’t keep up. The good news is it sounds like most have people who love them and understand. My sister and I laughed remembering our last trip to Greece where I bust my behind on one of the beautiful cobblestone streets on Hydra. She understood that was probably our last trip of that kind. So now my family always thinks of me in vacation plans knowing my limitations. Because like many of you said, they understand. I still feel envious and resentful as I watch them walk on the beach or visit museums while I find a seat. Sometime we do have to get out of our own head and realize we are lucky if we have people to help unconditionally.

    • Richard M. Cohen August 21, 2014 at 7:53 pm #

      Amen.

      R.

  11. Erin August 21, 2014 at 8:26 pm #

    It’s hard. My boys are little, so I often feel inadequate as a mom. I fear they will have to do without because of my situation. They have, and I have an amazing father and husband who has promised to always take me wherever he goes, no matter what it takes, so that helps. I also fear they will one day look at me differently, when they realize I am not like the other moms. I hope I am able to teach them that diversity is okay, even though for me it sucks (I am very uncomfortable being the outcast). It is work and a constant battle to live with this body, but I am getting there. By the way…you seem pretty great to me.

    • Richard M. Cohen August 22, 2014 at 9:17 am #

      Erin-

      Many times the battle is our heads. We fear the future and invent worst case scenarios. Reality is tough enough.

      R.

    • Jan August 23, 2014 at 12:59 pm #

      Hi Erin, this is my third go at this, and I’m determined. (You’d think by now I’d know to enter my name and email first; I didn’t, and hit submit and MailChimp blanked it out without hope for the back button, oops).

      Know that you are not alone in those feelings. I’m seeing the heart of your question in this way: Do YOU look at you differently? If so, how?

      We can only impart what we ourselves have.

      I regret now (our boys are in college) not taking the advice of my neurologist, who said to have my boys help out more, to make a meal (or help, if younger). When younger, they had normal chores, but in my quest for “being normal,” I did whatever I could to maintain status quo, even if it meant having to flop on a bed in exhaustion after cleaning bathroom floors, or making a more elaborate dinner recipe at the end of the day in warmer temps… only to totally barely be able to serve the meal on spaghetti noodle legs. (The four of us ate in silence, by the way–it was all very upsetting for them to see me that way).

      So why did I not just ask for help? (Pride, maybe. Or in a quest to “not feel/look different”).

      There are choices. It’s up to us to make them.

      Although enough time has now passed that I don’t wince when relaying this, a fellow high school XC Board member highly suggested that I stay home from a big away meet because of the heat and terrain. I later found out that a dad had broken his leg, so they drove him right up to the race course in a van. I was devastated. For days. I could have been there, right along with the other moms. Instead, this mom with MS stayed home. It hurt.

      What that all taught me is that I need to make (and live with) my own decisions, to get informed, to perhaps do some up-front work in seeking accommodations, if necessary. To find a way, if desired. To not be swayed by the thought that I could “inconvenience other people.” To not allow myself to look at myself as being an inconvenience. Yes, the battle, as Richard said, was greatly in my head.

      So, as they say on a plane flight, “Put your own oxygen mask on first before helping others.”

      We can only impart what we ourselves have. It can take time, but you’re worth it. And, as one young woman with CP (cerebral palsy) I had interviewed years back imparted, “‘Everyone has a disability.’ Think about it; we are all limited in some way, be it physically or emotionally.” I am not like other moms in regard to having MS. And I am beautifully not like other moms in having MS because of the lessons learned in my nine-year journey. Don’t sell yourself short.

      • Erin August 25, 2014 at 2:15 pm #

        Hi Jan, thanks for your reply. Oh yes, I definitely look at myself differently, but oh how I wish I didn’t….I work on it every single day. Love the reference that we all have a disability, and I totally agree…everyone has something, but why oh why is mine on display for all to see?

  12. Amy Corcoran-Hunt August 21, 2014 at 8:28 pm #

    I sometimes say, with that smile, “I used to be Amy Hunt.”

    I used to be 5’8″. Five years in, I’m now about 4 feet tall, with an EDSS of 8.0, and a right hand that makes me worry in restaurants about exactly what I’ll order and if it will wind up on my
    had its way with me fast.

    And I used to be in advertising. Sorry about the Marlboro Man, Richard, but that wasn’t me.

    What if who I am is shallow and image-obsessed? Could be. Go stem cells. The best thing is for this to get fixed.

    • Amy Corcoran-Hunt August 21, 2014 at 8:29 pm #

      Typos

      • Amy Corcoran-Hunt August 21, 2014 at 8:33 pm #

        A sentence-o, really.

    • Richard M. Cohen August 22, 2014 at 10:13 am #

      Hope so. Keep the faiith.

      R.

  13. Geof August 22, 2014 at 8:02 am #

    We live in a culture where a person is frequently defined by what they can do or buy, As MS robs us of much of what we can do we often find it has simultaneously robbed us of what we can buy. Does this sound shallow? I think it is, but I still think this is how society judges us first.

    The question is when we lose those shallow traits, what is left? When I look in the mirror, I see lines from laughs and tears through the years. I remember what my wife and I have done and still plan to do. Then I remember the reasons why, and while MS may rob me of my abilities to accomplish some of those things, the reasons remain. Acting to the best of my abilities is still my choice, and ultimately those choices are how I define myself. What I see when I look in the mirror is the sum of choices made, both good and bad.

    • Richard M. Cohen August 22, 2014 at 2:40 pm #

      All of us view our lives through different eyes and on our own terms. We can learn from each other have to respect our diffeences.

      R.

  14. Sandy August 22, 2014 at 10:55 am #

    I want to echo the sentiment in what Geof wrote. I try to adapt all of my “adventures” but I gotta say, the planning and adapting takes some of the fun out of it.

    Little spontaneity left in life and as far as adrenaline-not much.
    Although I do get a bit of a rush when I fall….right before I hit the ground. (laughing as I wrote that line so please no sympathy)

    But hey, Richard, after all the places you traveled as a journalist and all the wars and conflicts you covered…do you miss the adrenaline too?

    Thanks for making me think hard. Sandy

    • Richard M. Cohen August 22, 2014 at 2:44 pm #

      Adrenaline was my drug of choice. Churchill covered the Boer War in S. Africa. He wrote, “Nothing is so exhilerating as to be shot at with no result.”

      R.

  15. Anonymous August 22, 2014 at 11:56 am #

    This disease like many others can push people to disassemble the who they once knew and understood. That can be disturbing, depressing and disheartening to go through. But it also provides a unique opportunity to attempt something you constantly hear people wonder out loud, “if I could only start over…”

    It sounds bizarre, but being torn down gives a chance to rebuild something from the ground up. I am speaking from experience; I wouldn’t ask anyone to believe me otherwise as that would not be fair, or honorable. I am learning to conquer fear that I thought I was part of my basic make up, and would never truly change. It seems the so-called psychological damage caused by this fight with this disease has delivered me to a different place. Alien and scary, yes, but also somewhat like a calm in a violent storm. The emotions are so strong that they wipe me out, physically and emotionally, and there seems to have been a multitude of walls (facades) that have now shattered as a result. I’m getting stronger by building muscles in my character that have been latent. The view is clearer now without those walls in the way. I’ve made it through and survived, and I now see everyone else somewhat clearer than before. It is still hard work, but it just makes more sense now. There is still some baggage, but it’s mine and I know I can take it or leave it. I can see how all those other people are running around as I was before, blind, and they have yet to see me as I know me. That’s OK. I’ll just deal with me because that’s enough. And unlike the teeming masses, I know I can survive much worse than cockeyed looks, dismissive attitudes or misplaced pity. I think you can too. All of you.

    • Anonymous August 22, 2014 at 11:58 am #

      Oops, so much for my HTML expertise. The italics should have stopped at “who.” Funny, probably reads like a sermon now. lol

      • Jan August 23, 2014 at 10:56 am #

        Still, not too shabby that you got into the HTML. I deal with HTML and website stuff… how did you even get to the place to code it here?

    • Richard M. Cohen August 22, 2014 at 2:46 pm #

      Born again.

      R.

  16. Mark August 22, 2014 at 8:37 pm #

    Not sure I can add much to the post or the replies. They are really good and I read them over and over. They make me think and wonder. Almost intimidating…sharp bunch. Happy to have found this group. Thank you, all.

    • Richard M. Cohen August 23, 2014 at 8:04 am #

      Keep thinking. I promise you will not figure it out. It is arbitrary.

      Best,
      R.

    • Jan August 23, 2014 at 10:52 am #

      Hi Mark, know that Richard is a professional writer (lots of credentials in the nav links above); I am a senior copywriter. I will only speak for myself in saying that my passion for writing didn’t just happen. It evolved—over nine years to be exact (diagnosed with MS in 2005). It was a process, as is dealing with MS, I think. It’s personal, and, like the disease, people have different MS management and coping approaches that work for them. Personally, this blog works for me. Richard can make me smile with his wit, yet is authentic with his feelings. Have you read his book, “Blindsided?” (If not, I recommend it).

      I have a B.B.A. from a college famous for its Writers’ Workshop. But at that time, I was not even aware of its existence. (I would have been bad at it then, anyway). Although I was fair at business writing, my love for writing began as a cathartic outlet following the loss of my figure skating legs due to MS. (I’ll spare you from my five-page story written with tears rolling down my cheeks. When younger, I had skated for Ice Capades, with a goal of loop and stag jumps until at least age 60—easy, as I had skated about once a month for 35 years. If you keep it up, it’s as familiar as riding a bicycle).

      I previously made an effort to participate in MS-sponsored things: a yoga class, a swimming class, an exercise video, a support group. I tried, I really did. The people were truly wonderful. However, with my skating/active background and no-meds-ever approach, I could not mentally deal with any of it. (Some call that “denial.” But my personal survival involves other things). Loved the people, yet left each session feeling depressed. Remember the scene in Titanic where the masses were floating in the water awaiting rescue? For many, those MS events are their lifeboats (a good thing). But for me, a slow sinking.

      So please don’t be intimidated in any way. While not new to MS, I am relatively new to this blog. The thoughts expressed are real. I understand them—often firsthand. They make me think, as well, and can be relational, comforting, inspirational. (As I see it, responses don’t have to be of professional quality, by the way: just authentic… human). This MS journey, as with life, is a personal process. I’m liking that the “Journeyman” provides a most valuable approach to discovery, self-discovery. (So what that he has credentials and a famous wife? Nice likely, but it’s the human element that really matters to me). Thank you, Richard.

      • Richard August 23, 2014 at 12:20 pm #

        It is a privilege. Did you go to the Univ. of Iowa?

        R.

      • Mark August 23, 2014 at 7:37 pm #

        Thank you for your reply, Jan. I enjoyed reading about your background. I did meet Richard and his wife at an MS function in Philadelphia several years ago. At that time, I was seeing doctors at the UPENN Medical Center. Thank you, I did read two of Richard’s books. “Blindsided” really resonated with me. I thought having MS shielded me from having to deal with other health issues. I was wrong. As if RRMS wasn’t enough to contend with, I had to have open heart surgery to repair an ascending aortic aneurysm. This was followed by back surgery, knee surgery and then a root canal that sent an infection throughout my entire body and threatened the very same aortic valve the doctors at Yale were kind enough to replace. I remember a line from SNL…”it’s always something.” I liked your words “a slow sinking.” But I also like an earlier post’s reference to building muscle in character. Either way, it is what it is and we are who we are. Most of us will deal with it like we deal with other things and continue to push on. And I agree. Honesty is the best policy. That way we only have to remember one story. All the best.

  17. Jan August 23, 2014 at 3:27 pm #

    Yes that’s correct. I have a photo beside the late Gene Kelly when participating in a dance tribute to him (a visiting lecturer one weekend in the early ’80s). A bit of a scary audition that was, among dance majors, but, I thought, why not? So his takeaway story there is that he was sick with a miserable cold during the many takes of the very wet “Singing in the Rain” dance scene for which he is well-known. Seem like ages ago… it kind of was 🙂 I’ve been told by my husband that I still carry on with “the show must go on” attitude, even with MS. He’s likely right about that.

    And you very likely know that Terry Wahls (The Wahls Protocol) is there as well.

    (Also, I have noticed that my replies are about as long as your posts and should work on that!)

    • Jan August 23, 2014 at 9:55 pm #

      Mark, your additional stories… oh my, what a load to contend with! But it sounded as if you have a very good attitude. And I agree with your final comments about honesty and only having to remember one story. That has always been my husband’s policy, and a good one. I hope that you are doing and feeling better.

  18. MB August 24, 2014 at 11:51 am #

    Tolerating abusive situations is a byproduct of low self-esteem, whether it’s social, emotional, or physical. Sometimes I choose not to rock the boat when confronted with an accessibility issue because I don’t want to bring attention to my disability. When I do point it out I find myself saying, “I’m sorry but…” like it’s my fault.

  19. Jo August 24, 2014 at 10:19 pm #

    Hi Richard

    Would love to know how stem cell treatment is going!

    Take care-Jo

  20. Anonymous August 25, 2014 at 12:37 am #

    @Jan

    They are called HTML tags, and you can find them on numerous websites.

    Try this one–it’s fairly straightforward: http://www.w3schools.com/tags/

    **note: just remember that with the words you are formatting to use a ‘stop code’ in the triangular brackets at the end of the word/words you are formatting. A stop code is [ / ] a backslash. An example would be–for example, italicizing–a lowercase ‘i’ inside triangular brackets, then your word or sentence, then the backslash / and lowercase ‘i’ at the end inside triangular brackets. I can’t show you what it looks like because it won’t show up, it will just code. The backslash always comes before the formatting tag (in this case, the letter ‘i’) inside the brackets, or else the formatting won’t stop. Thus my mistake above. You can pretty much use HTML tags anywhere on the internet, since 90% of all webpages are programmed with HTML code.

  21. Tara Lovell August 25, 2014 at 2:47 am #

    Thanks for sharing! I too have MS, it’s an evil disease, it robs you of so much! I have a scooter, but will not use it in my town, only other cities, vacations, etc. I feel like everybody’s staring, and wondering what’s wrong with that young girl! Yes, I’m 37, and I still think that’s young! MS is an emotional rollercoaster! One day you’re fine, the next day you’re depressed, and having a pity party for yourself! If I could stop worrying about what other people think, I would be a much happier person! And I know my husband, and kids would too! Praying for you, and others with this horrible disease!

    • Yvonne August 25, 2014 at 9:34 am #

      Hi Tara. Like you I felt robbed when I had to move to canes and walkers. 44 was too young. We gals not only loose our mobility, WE LOOSE OUR SHOES! The indignity of coveting other peoples beautiful heels as they walk by. People probably thought I was weird, not because of the walker but because I was constantly saying from my perch “love your shoes”. That was 10 years ago. I still admire beautiful shoes but I now I get fabulous pedicures with interesting colorful designs that give me the same feelings my wonderful heels did. It takes a minute (or two) but we adjust and find that one thing that makes us feel a little like our old self and makes us happy. Now people stop and admire my beautiful pedicures and no one pays attention to the walker (except me inside my head) :-). So when you throw yourself a pity party it’s OK…just don’t forget the decorations 😉

    • Erin August 25, 2014 at 2:12 pm #

      Hi Tara, you are not alone. Thought I was the only crazy one (or so my family thinks), that only used my chair outside of my hometown. It is so much easier to handle the stares when the people are strangers. I am only 40, and yes we are too young for this. I also know I would be much happier if I stopped worrying so much what others think. Lets hope we get there!

  22. Lexus Canada September 22, 2014 at 8:14 am #

    Wow that was odd. I just wrote an really long comment but after I clicked submit my comment didn’t show up. Grrrr… well I’m not writing all that over again. Anyways, just wanted to say superb blog!