Enough Already

Welcome to attitude ad nauseam.  I thought we had beaten this particular subject to death.  Then a thoughtful note from Esther, who lives north of Boston, showed up in my Journey Man email.  Esther is not comfortable with the tone of many of my posts about MS.  “I think that your opinions are quite negative and do not reflect the opinions of those who have a positive attitude towards life. I watch my wonderful Stephen live his life with so much joy.”

Esther’s husband was diagnosed with MS in 2008, in a wheelchair by 2010.   “I watch my wonderful Stephen live his life with so much joy, laughter and love. He is always the center of attention and we enjoy all that life has to offer.”  I think that is great.  Why would Esther assume I live a life without those fabulous things?

Of course, someone else in my house usually becomes the center of attention.  That is okay.  She deserves that honor.  I like to think that I enjoy a full life.  Charles Dickens did not dream me up.  Esther does make a good point about the benefits of the positive attitude.  I am not a perfect person and slip; onto the dark side occasionally.   I know that and am trying to keep the curtains open.

As I told Esther, I believe there is a distinction between negative and realistic.  There is not enough dialogue about the real coping that must be done.  I do not intend to frame this “scum sucking pig of a disease,” as Teri Garr puts it, as anything but miserable.  I applaud Esther and Stephen for staying positive, but if they really are happy campers, I am missing the boat.

MS sucks.  It just does.  I am not beating my breast or playing the victim, but it is not a vital piece of my good life.  Actually, I could live without it.  I do not consider that negative.  I hate it when others call me negative.  Not to sound negative.   I understand Esther is not claiming Illness as a good thing, but she does not appear to have a critical bone in her body.  Good for her.  Really.

I told   Piers Morgan I have a great life, and I do.

 

 

46 Responses to Enough Already

  1. Linda Lazarus June 3, 2014 at 2:30 pm #

    My relatives recently came to visit. My nephew, an MD, was surprised to see that I looked so much better than he had expected. That is the constant conundrum for MSers. I have learned to smile and say “thank you”. However I feel like a fink to others fighting this not-so-good fight.

    How I (we) look is unrelated to how I am. I am functioning well as I am in the best phase of the rituxan cycle which puts me back on my feet and talking. When the chemo wears off so does my ability. If I say this I am perceived as “negative”. If I do not speak truthfully I risk giving the impression that MS disability is somehow related to positive thinking.
    Your truthful interviews and writings help the rest of us more than you can guess.

    • Richard M. Cohen June 3, 2014 at 3:00 pm #

      Linda-

      I know. Catch 22. The But you look so good business wears thin.

      Keep smiling and turn the volume down.

      Best,
      R.

  2. Jack June 3, 2014 at 2:58 pm #

    I’ve got to tell you that reading your blog has been among the most reassuring and (surprisingly) uplifting experiences I have had in a long, long time. I don’t interpret occasional kvetching as negativity: it is simply a reflection of the frustration many of us share as we cope with this crappy disease.

    When I read about your experiences with falling and not being able to get up, I called my wife over to the computer to read it. “That’s exactly what happened to you,” she said. And when she read about Meredith saying that she had had enough, my wife said, “Isn’t that what I said to you?”

    It is great to know that that I am not alone and that you are expressing what I am feeling. Please keep telling it like it is: the good, bad, funny and sad. For those who are uncomfortable with your honesty, they can choose other web pages to read. For me, I am happy to have a connection with someone who really gets it.

    • Richard M. Cohen June 3, 2014 at 3:03 pm #

      Thanks. We are traveling the same road.

      Best,
      R.

  3. Christopher June 3, 2014 at 3:22 pm #

    I second that, enthusiastically.

    • Betty Moody June 3, 2014 at 10:17 pm #

      Me too.

  4. Mike June 3, 2014 at 3:34 pm #

    The truth is being sick is no fun. If it was it would be called something else. We have all had those days when everything goes wrong. I’m sorry but sometimes on “those” days, if I acted happy or positive. I’d be a liar and I guess I would rather be negative than a liar. Sure not every day sucks and on those days I crack a smile but when MS shows it’s teeth. Well, like I said, I am no liar. I am not outwardly mean but I also am not happy. MS is different for everyone, for me it is not bracelets and bike rides. It is canes and chemo therapy. I have trouble putting on my happy face. I appreciate your candor and enjoy your writing. Don’t change, keep calling a spade, a spade. Because that’s what it is, it’s not a smiley face.

    • Richard June 3, 2014 at 8:32 pm #

      Amen, brother.

      Best,
      R.

  5. Jeff June 3, 2014 at 4:15 pm #

    My thoughts…

    Your blog has become a place where people can share, commiserate, inspire, comfort or do whatever they need to in a given moment. There is no single answer to any question. We are all struggling with this disease in different ways and I find it refreshing to have a place where we can all come together and hopefully help each other deal with it a little better. So far, there is no magic elixir, so we must figure out how to get through each day the best we can. Sometimes those days can really suck and I think it is important to have a place to vent or commiserate. Sometimes those days are better than anticipated and it is good to have a place where we can share and hopefully inspire.

    I, for one, appreciate your candor along with most others who comment here. You are not the MS torch bearer – neither is anyone else. We are each traveling our own personal journey and it seems that since there are some similarities among us,we choose to come together here and share.

    Don’t change a thing. Keep posting, keep living, keep sharing. We are all better for it.

    • Richard June 3, 2014 at 8:35 pm #

      Thank you for those words.

      R.

  6. Amy Corcoran-Hunt June 3, 2014 at 4:44 pm #

    Ask my 80-something mother how my life is and she’ll tell you I have a wonderful attitude and I’m handing lousy luck very well. Ask me, I’ll decide who you are to me, and what you can handle, and I may tell you I can’t control my right hand anymore and put my bloody makeup on, which used to be this great, fun thing, and now half the time I don’t bother and keep looking more like blech.

    Your posts — and the conversations they inspire — are the real deal, positive and negative. Such is life.

    • Richard June 3, 2014 at 8:37 pm #

      Indeed. Keep on truckin’.

      Best,
      R.

  7. MB June 3, 2014 at 6:58 pm #

    Don’t stop telling our story.

    When I see blogs or books written by people who have been recently diagnosed they make me cringe because they portray MS as a manageable disease as long as the MSer maintains a positive attitude.

    I’m happy these writers can run a marathon, swim 500 laps, and bring home the bacon and fry it up in a pan. I hope they never experience the ravages of the disease, but they need to stop portraying themselves as the voice of experience. It’s so unfair to those of us who have been assaulted by this disease day in and day out.

    You are telling it like it is for so many us. Your posts are written from the perspective of a realist who might be misinterpreted as negative and harsh by people who just don’t seem to get it.

    For those of us who do get it, thanks.

    • Richard June 3, 2014 at 8:39 pm #

      It is a privilege.

      Peace,
      R.

  8. Brenda Mazur June 3, 2014 at 7:47 pm #

    We all love your stories it tells us we are not alone and that feels so good. You are honest where so many people can’t be. I agree the person above if it bothers them don’t come to the blog page.
    I have noticed some people have MS but have not been hit hard with it, I feel like mine could be a lot harder and if it doesn’t get harder the happier I can be. But I would never tell someone they need to be more positive I am not going through what they are going through at that time, and if when I have a set back and someone tells me I look great well let me tell you really how I am,,, Or I would really like to punch them and see what that little pain feels like, theirs well go away but ours stays much longer and sometimes don’t leave. Keep up this wonderful blog we love your stories and thoughts so much.

    • Richard June 3, 2014 at 8:41 pm #

      Thank you. You guys make it worthwhile and keep me going.

      Best,
      R.

  9. Jo June 3, 2014 at 7:47 pm #

    From miles away ( Australia) I say “Thank You Richard” for keeping me sane with your realism!! At 43yrs old; I have been in constant battle with this monster for 20 yrs and though I continue to smile and live life as per normal, I am faking the whole ” Loving Life” thing!!
    I am surviving yes- living no!!
    Take care of you.

    Jo

    • Richard June 3, 2014 at 8:45 pm #

      Jo-

      Thank you.

      May I visit you? I’ve never been to Australia.

      Just kidding, Meredith.

      My best,
      R.

  10. Jenny June 3, 2014 at 9:46 pm #

    When I first started reading this blog, honestly, I wanted to follow the progress of Richard’s stem cell treatment. As I read Richard’s posts and the responses and comments from fellow MSers, I began to feel at home here. A surprise to me, I realized there was a place I could virtually go where people truly understand what I feel about this disease. As everyone has stated, I look forward to reading everyone’s thoughts and experiences. MS is not a positive disease, but I have learned to look at all people in a new light. I do put on a more positive face when I am out and about. I don’t want to be that “complainer” we all talk about in social situations. Since I know I put on an act out in public, I assume others I encounter may be doing the same thing. I tread lightly and try not to make a judgment about others because I am not walking in their shoes. This blog is an honest, real look at MS and as others have said, it is a place where we can be ourselves and not have to hide behind our masks. I thank you Richard and everybody else for making this feel like home! (With no stairs to climb! Lol!)

    • Deb June 4, 2014 at 2:47 am #

      Peace to you, Richard. If you weren’t telling this truth, we wouldn’t be here with you. And we are not just MS patients; the whole spectrum from being deathly ill for a week or in pain 24/7 ( something that Americans also seem to think can be cured with a positive outlook)-we get so much good from cranky old you.
      Thank you.

    • Richard June 4, 2014 at 7:55 am #

      Jenny-

      This blog is great because of all of you. It is a marketplace for ideas. Disagreements are welcome, and I promise you, I have more to learn from you folks than you ever will from me.

      Best,
      R.

  11. sharon June 3, 2014 at 11:59 pm #

    I think there is a trend now on social media that we have to be positive about everything (illness, job loss, missed flights, etc.) that comes our way. And, being realistic is viewed as negativism. I enjoy reading all your posts and find you interesting and realistic!

    Sharon

    • Richard June 4, 2014 at 7:56 am #

      Sharon-

      Thanks.

      R.

  12. Lisa June 4, 2014 at 12:54 am #

    Thank you Richard. You make me feel like I am not alone in this very sad and lonely life. Thank you.

    • Richard June 4, 2014 at 7:57 am #

      Lisa-

      You are not alone. Please know that. We are all here.

      Peace,
      R.

  13. Emily June 4, 2014 at 1:16 am #

    Your blog is a great source of comfort. Thank you for it, and I hope you don’t change it.

    • Richard June 4, 2014 at 7:58 am #

      Not on your life.

      R.

  14. David June 4, 2014 at 8:38 am #

    Sometimes I come to your site for shelter. I always seem to get your honesty, frustration and your gratitude for family.MS seems so worthless and it takes so much away from us.

    I feel that Journey Man is my support group that gives me privacy too.

    There is a fine line between optimism and denial.

    Following your life helps us to remain somewhat balanced and hopeful

    Don’t stop Richard , we are all wishing the same wish, to get this MS off our backs

    I hope that you are the first one to do it!

    • Richard June 4, 2014 at 9:20 pm #

      It would be an honor. I feel close to al;l; of you.

      Best,
      R.

  15. Edie June 4, 2014 at 8:44 am #

    Richard, you are one of a kind! I keep hoping the Aethiest “thing” is just another sour grapes comment meant to enrage or engage. Just looking at your amazing family is enough to counter that statement.
    All said, I find that when I let the negative creeper enter my world, my world gets even more painful and sad. I would like to shout to the world about this unfair, unrelenting disease, but after a while, just gets boring for all who would listen.
    It has it’s good and bad because when I fail to remind others about my limitations, then it is mistaken for lazy and non-caring. Yet, if I point out that I am unable to participate it feels very much like an excuse.
    My husband, three kids, and ten grands keep me going. They refuse to let me “sit it out” most times. But yet, do understand when I have my bad days, weeks or even hours.
    This is the positive in my life and helps ward off the negatives!
    Thank you for sharing your private journey with MS. Most rings true and “have been there” and done that just keeps coming through your posts. The shingles thing, yes had it not once but twice! Stress is my enemy and eliminating it is my challenge.

    • Richard June 4, 2014 at 9:24 pm #

      Why would anyone with MS feel stress? Now let me see. Thanks for your note and solidarity.

      Peace,
      R.

  16. EB June 4, 2014 at 8:55 am #

    Neither a positive attitude, nor juicing, causes something that royally sucks, to unsuck. Thanks for being the voice of realism! Love it!

  17. Deb June 4, 2014 at 2:50 pm #

    Peace to you, Richard. If you weren’t telling this truth, we wouldn’t be here with you. And we are not just MS patients; the whole spectrum from being deathly ill for a week or in pain 24/7 ( something that Americans also seem to think can be cured with a positive outlook)-we get so much good from cranky old you.
    Thank you.

    • Richard June 4, 2014 at 9:25 pm #

      Cranky old you…I like that.

      Thanks for your note.

      R.

  18. Desinie June 4, 2014 at 6:12 pm #

    Thank you Richard for telling the truth. As David said above,” There is a fine line between optimism and denial.” The general public, ie. people without MS lots of times don’t want to hear the truth about MS. They’d rather turn their heads when they read some truths about MS because it’s too depressing. In the definition of MS is that it’s a chronic progressive disease. Having said all that, I still have hope. Esther should know it doesn’t have to be either all positive and hopeful or depressing. I’d guess that mosts of us with MS go between the two emotions and varying degrees in between.

    • Richard June 4, 2014 at 9:27 pm #

      I agree. Good observation. Thanks.

      R.

  19. PK June 5, 2014 at 10:49 am #

    Dear Richard,

    I hope you can see how appreciative and large a community you’ve created with your honest thoughts on life with MS. Please keep telling it as you feel it. We are all hungry for the truth and a place where we can speak it. Like David, I struggle daily with whether I’m actually coping or denying, but here (reading your blog), I know I’m in a rare circle of truth and strength. Even when days suck, I come here and feel less alone. Thank you so much for sharing your journey. We are with you–hating MS, fighting the mess, being real, and voicing our very real fears. Hope you can feel our support.

    • Richard June 6, 2014 at 8:20 am #

      This blog could not exist without you guys. Great give and take. We are strong together.

      R.

  20. Erin June 5, 2014 at 3:10 pm #

    I too started following your blog to keep up with the stem cell trial, and have instead found an MS “home”. Your posts and all the responses have been comforting, and have made me feel less crazy. Although there are not many people I would wish this disease or its progression on, it is nice to know I am not alone, when most times it feels in my real life world that I am. Please keep it up, Richard, your words are doing more than you think, and your realism means so much to all of us. I also often have on a brave face, and am told how good I look……people never know what goes on behind closed doors. Hope you are feeling as well as can be.

    • Richard June 6, 2014 at 8:26 am #

      Erin-

      My chi.ldren had a wonderful Irish sitter when they were young. She overheard a, but you look so good, conversation and told me to say, It;s not my face that’s sick, stupid. I dropped the stupid and used the line occasionally.

      My best,
      R,

  21. jeanne June 5, 2014 at 5:01 pm #

    MS does suck. I dont think you are negative , I think you are grouchy and sarcastic. I love that! I enjoy reading your books and the blog because you remind me of my father in law. Harold was abandoned by his mother as a child put in an orphanage by his father ,was shot in the Bataan Death March where his younger brother died, he spent over 3 years heavy labor in a Japanese POW camp and he was the most sarcastic grouchy man I had ever met. Good for him! Whatever helps you cope is individual. I loved and admired that man and so did his kids and grandkids. MS is your Bataan sometimes. I get it. I admire you for helping all of us out here

    • Richard June 6, 2014 at 8:29 am #

      And you are helping me right back.

      Best,
      R.

  22. Kate Aquilino June 5, 2014 at 8:30 pm #

    Richard,

    I work at staying positive and I guess I’ve made it look easy. We attended a family function and I was feeling sedated from, well, sedation and extreme fatigue. I sat thru the first part telling an old friend how awful I felt. Like I was all ready for the OR. Toward the end, my adrenelin kicked in. I was told I did a great job of fooling everyone. I said, next time instead of fooling people I’m going to lie on the table with a centerpiece on my stomah. These people need visuals!

    Thanks. I like coming here, too.

    Kate

    • Richard June 6, 2014 at 8:33 am #

      Thanks. Please lie on the table and send a photo.

      Best,
      R.

      PS – Sleep well.

  23. Lauren June 8, 2014 at 3:54 pm #

    Good, except for the apologist tone of the post. If you can’t bootstrap it in this country, if you can’t bear disease with a smile and a song, then you are automatically “less than.” I wish people would editorialize less, and pray less, and offer to help more.

  24. Kate Aquilino June 9, 2014 at 9:37 am #

    Harrummph! This space does not allow pictures. I took off all my clothes and spread flowers everywhere. You will all just have to imagine 😉