No Kvetching Allowed

 

Kvetch.  Kvetch.   Kvetch.  Not you.  Me.    What a sorry statement from one who felt it so important to face life’s trials with grace.    Handle it.  Learn to live with setbacks, and keep moving in the right direction.  There was something stoic about my silence.  I was proud of that.  To kvetch is an old Yiddish term for constant complaining.  There is a large wad of bubblegum stuck to the soles of my shoes.  I am stuck on that word.

Complaining about life’s miseries is not an attractive habit.  I tried not to venture across that treacherous terrain.  I figured complaining is like crack, not a habit anyone should find appealing.  I have a few blood clots still dissolving in my body.  The amazing disintegrating man continues his messy struggle with psoriasis.  I could redo the roof with my shingles.  And all of the above is kicking in MS madness.  Friends tell me I have a right to complain.

No I don’t.

Well, yes.  Actually, I have the legal right to feel sorry for myself.  Kvetching is protected speech.  But how pointless.  Tedious.  I used to be a role model for my family.  Now I think they want me to write when I find work.  My clothes are caught on the barbed wire of bellyaching.  The time has come for a new strategy.

Chronic conditions come at us slowly.    They cannot be stopped, but we sort of know what to expect.  A pulmonary embolism strikes like lightning.  As with heart attacks and cerebral hemorrhages, a clot can drop you.  That came close with me.  So put it aside.  I did almost drop my teeth at the whole thing, but nothing  actually fell to the ground.  So stop obsessing.  It s over, and you have learned a lot about preventing future occurrences.

Which brings me to my psoriasis.  I am in my fifth month of itching.  Pretty freaking annoying, but survivable.  The medication did cause significant hair loss.  I had to go with a buzz cut.  My hair was ridiculously long anyway.  I came of age in the sixties and was my hair.  For goodness sake.  Get over it.  It is not 1968 anymore.  Besides, everyone is saying they love the haircut.  Go figure.

Then there is the shingles.  Are the shingles?  We all live in fear of that one.  Mine seems to be a relatively mild case.  Last but not least, the very annoying, slightly scary scene of the MS rearing its ugly head.  There is nothing new here.  How many times has that happened before?  Sometimes I make it back to the starting line, wherever that happens to be at the moment.  I may lose ground, but let’s not assume anything for the moment.

Well, what have we here?  An armature lawyer whose entire case has just been thrown out of court.  So, cool it, and give everyone around you a break.  You were born a curmudgeon, and that does not have to change.  Just do all a favor and pull up the shades to let the darkness out.  And smile.  You are cute when you smile.  Wait a minute.  No, I am not.

30 Responses to No Kvetching Allowed

  1. Matt May 20, 2014 at 11:47 am #

    Richard with all the horrific things you have gone through and are going through you have to be able to just laugh and say bring it on. There is more to be done in this world as it is not done with you! We are all in this together! Like I told my doc “I’m not here to be treated I am here to be this damn thing” and I intend on doing that! I think my doc thinks I’m crazy but like Waylon said ” I’ve always been crazy it keeps me from going insane” peace

    • Richard M. Cohen May 20, 2014 at 12:05 pm #

      Matt-

      Move over. I am with you, though maybe less strident and judgmental than before.

      R.

  2. Matt May 20, 2014 at 11:49 am #

    I meant beat not be.

  3. Jack May 20, 2014 at 2:52 pm #

    I always thought of myself as an upbeat, happy person. Everyone said I had a great sense of humor. The other day my wife, who has been nothing but supportive during my (our) 20 plus-year struggle with MS, complained that I have become a mean, angry person. She could have just as well hit me with a brick: I was stunned. Could that really be true?

    Let’s see, I went from being an athletic, energetic young man ready to conquer the world to become a crotchety, sixty something year-old — excuse the word — cripple, who can’t even tie his own shoelaces. She’s right, I am angry. I am pissed at what has happened to me. But, that’s no excuse for being mean to other people. What has happened to me is no one’s fault.

    I am in control of my attitude, and I’m sure I can improve it. At least, I’m going to try.

    • Richard M. Cohen May 20, 2014 at 3:39 pm #

      Jack-

      Do it. Our wives deserve that.

      Best,
      R.

  4. Christopher May 20, 2014 at 2:52 pm #

    I like your lesson, Teach. Hashing it out, in the open, without a wall or scrim.

    In the scientific world, the research papers looked at most favorably, and garner the most credence, through peer review, are the ones which most explicitly detail ‘how’ the researcher(s) got to his/her/their conclusion… and not just the result.

    Thank you.

    • Richard M. Cohen May 20, 2014 at 3:41 pm #

      Sometimes it is a circuitous journey. Our lives are not linnear.

      Best,
      R.

  5. MB May 20, 2014 at 4:51 pm #

    Believe me when I say that I’m Suzy Sunshine to everyone 97% of the time.

    I really don’t think I need to apologize for the 3% of the time I bitch and moan to those closest to me. This disease absolutely stinks, and while kvetching may seem pointless, there are times when it’s all I have in me.

    Ok. Time to suck it up and carry on… 🙂

    • Richard M. Cohen May 22, 2014 at 8:31 pm #

      Right.

      R.

  6. Wendy May 20, 2014 at 6:28 pm #

    I’m taking a new oral drug for MS called Tecfidera. Its original use was to treat psoriasis. It is also sprayed on couches to prevent mold. If you take it you may be able to cure two problems with one pill, and you probably won’t have to worry about mold on your sofa. LOL

    • MimiNOLA May 21, 2014 at 8:52 am #

      LOL. I’m on Tecfidera and knew about psoriasis, but not about mold. Hurricane season is coming! Maybe I can sprinkle some of that $5000 medicine on the sofa. No, can buy a new sofa instead. Thanks for the chuckle. I can kvetch with the best of them.

    • Joanne May 22, 2014 at 11:42 am #

      I am also taking Teckfidera. Between that and Ampyra, I have more good days than bad.
      I just want to share that I had psoriasis since I was about 10. I had the mumps when I was 7 and it attacked my thyroid. At that time no one knew what normal was for me, so they chose not to medicate me. I didn’t get medicated until I was 39. Once my thyroid was under good control, my psoriasis went away. I haven’t had a flare up since being medicated for hypothyroidism.
      There is a strong connection between the two.

    • Richard M. Cohen May 22, 2014 at 8:33 pm #

      Wendy-

      Very complicated situation. If it were only that simple.

      R.

  7. Geof May 21, 2014 at 8:59 am #

    All of this kvetching reminds me of a book I read back in college, “Confessions of a failed Southern Lady.” My mom had given it to me as a humorous jab atmy grandmother whom could not be called for a short conversation. Every call lead to a list of ailments from which she suffered, and it was never a short list. In the book, their is a lady constantly complaining her uterus is falling out as part of her list of physical issues.

    In any event, I still try to stay mindful of the words my grandmother used with a chuckle at the end of her list of ailments, “When all is said and done, I’m in pretty good shape for the shape I’m in.”

    • Richard M. Cohen May 22, 2014 at 8:34 pm #

      Amen.

      R.

  8. Diane Parkinson May 21, 2014 at 9:21 am #

    I just watched you on TV talking about your journey. In many was we’re on the same trip, one I wouldn’t want to invite anyone else on!
    I was diagnosed with MS in the late 90’s but I’m certain I’ve had it for many years before that.
    Mine started with a fibromyalgia diagnosis; fine, I could live with that. Then when I felt the best I had in years, the MS. All right, I had no choice but to deal with that.
    One of those scintillating conditions causes me to have acid reflux, and strangely enough, that’s the one that tortures me the most right now.
    I even told my husband if I had a chance to delete one of my conditions, I’d choose the acid reflux. I can’t bend over after I eat, and with MS, I drop a lot of items. Ironic, yes.
    I’m an author, too and should write a book about his some day.
    Anyway, I’ve kvetched plenty, but find laughing helps more.

    I’m on the three-wheeled bus with you on this journey. In my dreams I walk without my cane. Often, I even run.

    Diane

    • Matt May 22, 2014 at 11:00 am #

      Diane I saw on dr oz that taking melatonin at night can help acid reflux. Hope it helps. It has helped me sleep a lot better too!

    • Richard M. Cohen May 22, 2014 at 8:39 pm #

      Diane-

      Keep dreaming. Don’t give up the ship. Who knows? All things are possible.

      Best,
      R.

  9. Wendy_ May 21, 2014 at 9:56 am #

    Mr. Cohen, I caught your appearance on the Today Show this morning and was both glad to learn about your blog and appreciative of what you had to say during your interview. I’m newer to MS – less than 10 years – but sometimes don’t quite recognize myself anymore underneath its alien emotional landscape.

    I’m in my early 40s and though I am lucky in so many other ways (a supportive spouse, to start with), every time a flare affects vision, strength, mobility and energy it’s like entering a surreal alternate reality. Being surrounded by the robust crowd blazing upward upon the ladder of success is overwhelming – the light, noise, and vibrancy is staggering. I used to partake without a second thought.

    Like so many whose disability or difference is obvious, the feeling of being invisible can be demoralizing. Awareness of realities once largely ignored becomes an obsessive daily rumination – the day starts with acknowledgement followed by tamping down then packaging and containing to fit the new reality that might have arrived. Focusing on reminders of reasons to be grateful (of which there are plenty) starts to become brittle and forced. Undeniable examples of how little control I really have can begin to flatten willingness to play make-believe; the resulting cynicism starts driving people away.

    One of my recent mantras: ‘It is what it is.’ It seems more doable than the rabid positive thinking school of thought. I’m leaning toward embracing philosophical Stoicism rather than trying so hard to be the sunny, inspiring optimist that the culture seems to demand of all who suffer – whether physically or psychologically, visibly or invisibly.

    Yet I needed to read about kvetching today. I don’t necessarily *want* to become that person who constantly complains and whines about my health, or mistreats others because I’m angry, afraid or in pain. Going to be a lifelong balancing act, that’s for sure.

    Thank you for your blog.

    • Bonnie May 21, 2014 at 10:13 pm #

      Richard…and in turn Wendy~
      There is so much I could say, even kvetch about! Instead I will just say “thank you” to both of you from the bottom of my heart. Know that whatever discomfort you have felt today, our shared experience has brought me abundant comfort today and for that I am grateful!
      Take care of you!

    • Richard M. Cohen May 22, 2014 at 8:43 pm #

      Kvetch in moderation, but go for it. Feels good. Then stop. Wil feel evn bte.

      R.

  10. Debbie May 21, 2014 at 10:03 am #

    I just saw you on TV, thank you. I thought I was going to be the poster child for MS, it started in my late twenties with odd weaknesses, a feeling that I was wearing a mask on part of my face and balance issues, as a single mom I used to put on the strong face and cry in the shower. I became a fitness freak, I was winning this battle. In my late thirties I gor happiness, new husband, new baby, new house and an episode where doctors thought I had a stroke. Full recovery, but not so lucky not a stroke but my now you should have been on medicine before this MS.

    I am now 52 and MS has been fairly mild for me until 6 months ago. Noone told me about cognitive issues associated with MS. On your interview you mentioned dealing with having strangers help you up when you’ve fallen. I don’t mind when the strangers see me struggle I may never see them again; I minded when I had to leave my job because of those blank moments, I mind that my teenager (who was already sure he was smarter than mr) no longer trusts my judgement, my mother-in-law has to help me with paperwork that gets overwhelming and my husband who when I start stuttering is done talking to me and walks away with an “I get it.”. That’s the indignity of this disease for me. Doctors who say I test very well, I just need to learn to work with my new brain and let’s try this drug. At this point I just say letme be crazy I will learn to make that work.

    Enough kvetching already. I’m going with the teacher that always had the when life gives you lemons…poster. It is time to re-invent. I am going to be positive about everything I can and try not to allow others negative thoughts to affect me.

    • Linda May 21, 2014 at 11:26 am #

      Thank you Debbie. Needed to hear your words… Thank you.

    • Richard M. Cohen May 22, 2014 at 8:46 pm #

      Go for it, and don’t look back.

      Best,
      R.

  11. Anonymous May 21, 2014 at 11:01 am #

    I wish Meredith could give my husband some lessons on how to live with a chronically ill spouse. Some people are good at it. Some are not. I got sick about a year into our marriage. 17 years later still undiagnosed but we are still together but are we. There is a lot of resentment built up and I wonder if I will ever have answers I wonder if I will ever get well to make up for lost time. How does Meredith handle everything so well and how do you the sick spouse not feel guilty about it.

  12. Alison Valentine May 21, 2014 at 11:10 am #

    Today marks the anniversary of my diagnosis with MS. One year ago I sat in this exact spot and listened to my doctor tell me the news. Complete shock but immediate gratitude that I wasn’t facing breast cancer which runs in my family (there’s no way God would deal me a MS and a cancer card right?).

    Of course I knew little of what I was about to face in the next 12 months. First, the long process of “official” diagnosis-countless tests, appointments, confusing research and worst of all the waiting. Then the decisions-which medicine, which doctors, who do I tell, how do I tell my kids. All of a sudden I was an expert on MS and educating everyone around me because no one understood what exactly MS is. I barely understood.

    I watched your interview this morning and immediately found your blog. I’m working very hard to fight the anger and stress. It’s a short trip down feeling-sorry-for-myself lane too. I have found some peace with my mind and my body by practicing yoga and meditation. It’s something I’m practicing bringing into my daily life in the same way as brushing my teeth is in the morning and at night. No one likes the awful taste in their mouth when they wake up. It feels so good to brush the scummy stuff off and have fresh breath. Yoga and meditation does the same for your mind and body-opens up your joints, your breath, your mind. At night, I really just want to collapse in bed but I force myself to get up and brush my teeth & wash my face so I can go to bed feeling clean. If I also give myself a few minutes before bed to stretch and sit in silence I can let go of what did or didn’t happen in my day.

    When I feel the frustration and anger rise in me, I can feel the MS tingling in my hands and feet. This only adds to my stress but when I stop and breath and become aware of what’s happening (what yoga has taught me) I can slow it down and consciously make a choice about my reaction. This is not an easy habit to learn but I’m determined to keep trying because I hate the way the tingling turns to numbness and the numbness into weakness and the weakness into fatigue. I remember how it felt last year during a very long relapse. I remind myself of how it felt and the power of my mind to help myself.

    I absolutely love your wife and have watched her both on The View and on the Today show. I’ve wondered many times about you and look forward to reading your blog and your book to learn about your journey. Glad I got to see you this morning and I agree-I like the haircut too!

    Alison

    • Richard M. Cohen May 22, 2014 at 8:54 pm #

      Screw the haircut. You are on your journey. May the wind be at your back.

      Best,
      R.

  13. Allison Trimble May 21, 2014 at 2:47 pm #

    Dear Mr. Cohen,
    I happen to catch your interview on the Today show this morning & was inspired to look up your blog. I should say first, I do not suffer from MS. In fact, I have yet to meet someone who has the same disease as mine. I was diagnosed in 2009 with Mitochondrial Myopathy typified by Cytochrome ‘C’ Oxidase. Among the many symptoms include, organ failure (I had a heart transplant in 2000), chronic muscle pain/weakness, hearing loss, eye problems, exercise intolerance, severe fatigue… etc.
    After reading your thoughts & feelings about living with MS, I immediately related to you! This need to kvetch about our illness is a desire to tell others around us that we aren’t feeling well. For me, my disease is all on the inside, where no one can see it, feel it, touch it or know about it except or unless I say something. I desire to have someone in my life that understands even just a little, how it feels to have this untreatable, painful, exasperating disease. To have someone in my life who can understand that I need to be angry about it just for a little while & that my anger may not be a rational way to deal with a certain situation, but for me, it’s the right way to deal with it right now.
    Since my diagnosis, my life has changed so much. I cannot work anymore, I cannot move my body around much, so I must use a wheelchair for trips when there is walking involved, I don’t have friends and I am lonely. Yet people around me expect me to always be smiling and happy. I don’t get it. Let’s see them cope with even one of my symptoms for three months while they keep a happy face on.

  14. Jeff May 22, 2014 at 11:17 am #

    Not sure if you are familiar with the Wheelchair Kamikaze blog (from a fellow MSer), but he has a great post from a few years back that is related to this topic. It is definitely worth a read if you haven’t done so yet: http://www.wheelchairkamikaze.com/2009/10/footprints-and-shadows-tao-of-ms.html

  15. Wendy Too May 22, 2014 at 12:22 pm #

    Thank you, Richard! First thought when I saw you on the Today Show… he looks really good! Better than the last time I saw him on the special regarding the trial. So is it the haircut or this new trial treatment, Richard?

    I’m happy to have found your blog, because since the special with Meredith a few months ago I’ve been wondering how you felt about the trial. I did also see the scary, sudden chain of events and took comfort in Meredith’s declaration that you were OK. She is a good woman!
    Your blog about complaining…. I needed that. And I’m certain my husband and two college age daughters will be thrilled to see some change in my attitude regarding the constant complaining.
    I hope today is a great day for you and yours.
    Hoping I can figure out how to subscribe to your blog via email.