Proposal

I am an absentee landlord again, no longer shucking Oysters on Cape Cod but shoveling salt in the mine. Push has come to shove. My book proposal goes out after Labor Day, and it is not done. I feel as if I am back at school, attempting to explain why my homework is not ready. I am going to end up in detention, I know it. What happens if the book is bought?
I worry that the snow will be over my head for a solid year. For me, there is no pressure like writing a book. My history is working crazy hours and trying to adjust to sleep deprivation. Self-doubt and second guessing will fill my days. Why am I doing this again? I am crazy enough as is. I have tried to bend time. So far, it has not worked.
Kvetch, Kvetch. If this is not bad enough, think how obnoxious I will be in the book is sold. Whining and whimpering, groveling and grousing, I will be begging all of you to write the thing for me. I had the idea. I did not say I want to write the damn thing.
Can we take turns writing the blog so I do not feel guilty? Seriously. I am going to see if there is a way to pass it around. It would be fun. You guys respond to each other so well all the time. Why not try this? You have nothing to lose. You can take the lead and set an agenda. Would you give it a try? Geez. I am a lazy bastard.
For all you know, I will be in Mexico sipping Tequila with Donald Trump.

87 Responses to Proposal

  1. dale July 26, 2015 at 6:33 pm #

    Oh dear God… somebody get the smelling salts.

    Yeah, we’ll help you write the book. “It was a dark and stormy night…” Catchy, don’t you think?

    • dale July 26, 2015 at 6:46 pm #

      Seriously, you can probably do this book proposal in your sleep. But you left the Cape too soon, sea air is the best for putting ideas to paper. And it’s clear you have plenty of ideas. If you need to just ‘tag, you’re it’ and we can pretend to be Richard for a day. How awesome would that be.

    • Richard M. Cohen July 28, 2015 at 6:50 am #

      Excellent first page.

      R.

  2. Nik July 26, 2015 at 6:39 pm #

    Oh come on. How hard could writing a book be? Haha

    • Richard M. Cohen July 28, 2015 at 6:51 am #

      Piece of crumbling cake.

      R.

      • Hannah July 28, 2015 at 11:48 am #

        haha at least it still would taste good I bet! Just shut yourself away and write. Write things that don’t make sense. Use a stop watch and do 10 minute intervals. Come on we want to read the book!

  3. Kat July 26, 2015 at 7:28 pm #

    Donald Trump does not drink alcohol. Apparently he has an alcoholic uncle who as a result of his alcoholism inspired him to abstain. I like tequila so I’ll have a shot with you.

    • Richard M. Cohen July 28, 2015 at 6:52 am #

      Deal.

      R.

  4. Yvonne July 26, 2015 at 9:09 pm #

    No one can be as amazing as you have been inspiring all of us to share on this blog. We are use to you, saying in the Dana Carvey SNL coffee talk voice “talk amongst yourselves I’ll give you a topic” :-). Creating topics that many can relate to is the challenge. We can all take turns giving a topic but the interesting things you say to get us thinking….not everyone can do that well. Some of us can be quite wordy and a tad self indulgent because posting here is an opportunity to realease πŸ˜‰ I think we all understand your need to work on the book as a priority over blogging but that doesn’t mean your self indulgent group of MSers are ready to let you go completely.

    • Richard M. Cohen July 28, 2015 at 6:54 am #

      Completely? I neversaid that.

      R.

  5. Sandy July 26, 2015 at 11:30 pm #

    I will do whatever I can if you promise to take Trump to Mexico and leave him there.

    • Amy Corcoran-Hunt July 26, 2015 at 11:52 pm #

      Like.

    • Yvonne July 27, 2015 at 11:12 am #

      Sandy-me too!

    • Richard M. Cohen July 28, 2015 at 6:56 am #

      I am not going anywhere with him. Or the others.

      R.

  6. Hannah July 27, 2015 at 10:29 am #

    kvvvvvvvvvvetttchhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh
    STAPH IT

    • dale July 27, 2015 at 10:50 pm #

      bwahahaha ditto Hannah… should we call the whaaaambulance?

    • Richard M. Cohen July 28, 2015 at 6:57 am #

      Excuse me? Have you considered professional help?

      R.

      • dale July 28, 2015 at 8:27 am #

        Many times. You are cheaper.

      • Hannah July 28, 2015 at 11:40 am #

        RMC whenever I’m stuck I tell myself to do the thing I least want to do at that very moment. Considering your other books, maybe you could genuinely hug your family dog, and then get to writing. You can do this, come on man. PULL YOURSELF TOGETHER!

  7. Sue in TX July 27, 2015 at 12:38 pm #

    Richard! Oh my gosh. I’m new here to your blog and your voice but I recognize your melancholy. It is a creative persons, especially writers melancholy.

    Anne Lamott coined a phrase for this type of emotion, an obscenity, which I won’t repeat on your blog, although may on occasion say at my desk. In her book on writing “bird to bird” Lamott says, “when [melancholy] is playing [nonstop in ones head], we are at cross purposes with the river [story]. So we need to sit there, and breathe, calm ourselves down, push back our sleeves, and begin again”.

    Doesn’t Lamott’s observation ring true? So many times I have hit a lull on a project and felt melancholy but eventually I find my zone, a creative sweet spot, one that makes all the effort worth it.

    • Richard M. Cohen July 28, 2015 at 7:00 am #

      Nice. And true.

      R.

  8. Christopher July 27, 2015 at 10:25 pm #

    We’re all too hard on the guy. Too much can be too much, even when it’s adoration.

    Richard gave all of us a unique and rare opportunity to use his space as our personal soapbox here for a time, collectively. Not too many people in the world stop in the middle of their editorials on life and hand the microphone over to complete strangers to share their voices and opinions as well. That is quite a gift.

    Maybe we could all plant (post) some ideas here, right now, and see what germinates from that for everyone. He did ask for our help above in his post.

    Shared experience brings us all closer to understanding each other better, right?

    • Richard M. Cohen July 28, 2015 at 7:03 am #

      Agreed. Let’s keep going for now and see what happens.

      R..

  9. dale July 27, 2015 at 11:15 pm #

    Hey, look we love the guy. Yeah sure we can rule the blog for a while and he can dive in as a release, for comic relief, to chuck in a pearl here and there, whatever.

    BUT we don’t even know what the books about. It could be about donuts for all we know. The publisher might be some Nigerian prince with $$$$$. Maybe it’s a comic book. About us. I hope I’m Mrs. Hero.

    Personally I think in depth analysis of this blog would make a nice Master’s thesis.

    So Richard would like us to amuse ourselves for a while so he can get some work done. I’ll start. So why are we here? To commiserate? To pick up some survival tips maybe? To rub virtual elbows with a cool but humble famous guy? To whine a bit?

    3-2-1-GO

    • Richard M. Cohen July 28, 2015 at 7:07 am #

      I will do the whining around here. But how do you whionewith words?

      R.

      • dale July 31, 2015 at 6:51 am #

        Had to think about this. Inflection really is a big part of effective whining…. however I’m sure a skilled writer such as yourself can put forward a good one. Beyond “MOM! Trump’s hogging all the tequila…”

  10. Christopher July 28, 2015 at 2:21 am #

    To find some substance to this stupid, invisible disease. And to find out if other people are experiencing the same things in a similar way as I am.

    It’s too alien for conversations with unaffected people.

  11. Jeff July 28, 2015 at 12:17 pm #

    OK, here is a possible discussion topic. A little background first…

    I know from following this blog for a year or so that there are many of us here, all with varying levels of disease progression. I am currently able to walk without assistance most of the time, using my cane every once in a while. I recently went on a family trip with my brother (a few years younger than me) and my dad to Hawaii. on trips like this, it has been a bit of a tradition that for one day, the boys all go golfing while the girls have a shopping day. This year, I let my dad and brother know that I would go with them, but would just ride along and not golf, because I no longer have the energy. My brother responded by suggesting that I “tough it out” and play with them. I let him know that unfortunately, I don’t have the ability to tough it out. I said it is like me to ask him to just tough it out and make himself fly. No matter how hard he tries, this is something he simply can’t do. I am sure he didn’t totally get it, but I think it helped him understand a little more.

    So the topic would be – how do you help those closest to you cope with the gradual progression MS. I know we have discussed similar topics, but I think we have only covered strangers and co-workers. What about those closest to us?

    Just an idea… BTW, it ended up being a great trip!

    • Jan July 29, 2015 at 7:31 am #

      Getting a fish to ride a bicycle… I really like that analogy… Richard, perhaps Laura will let you borrow that one if interested.

      I’m still out of town but will reply briefly …hate doing this on my phone… I totally understand what you said about your brother and like your topic idea, Jeff.

      I’m still haunted by my reaction to my husband’s sister, who came behind me at a tractor type museum when I was searching for an elevator to get down to it, not hard no big deal I just went there with my cane, when she was then behind just b4 the elevator and said she was just being nice.

      I just halfway lost it, saying that I don’t need ppl to be nice… if I had heard, hey let’s catch up with you and let you know how’s it going but when I heard to be nice I probably ruined the rest of the time with the two of us.

      Perhaps she certainly meant no harm but our relationship can be strained at times, I was totally overtired and likely in no mood to be gracious about this, and that comment made it really hard on me emotionally… I did not emotionally or physically need a caretaker… so yes how it is for other people especially those closer to us.

      Richard, will have to address your question of another time.

  12. Sandy July 28, 2015 at 12:43 pm #

    You know I think Jeff’s post is very much on point here. Richard is asking to take a sabbatical I think from the everyday blog. He has a lot on his plate and will be busy fulfilling some pretty serious obligations/opportunities.

    Writing your book proposal has to take priority over this blog. And taking time to be at your best to write the book also takes precedence.

    So how bout we have a volunteer who knows how to run this sort of blog and we do the topic suggestion as a group. That way we can keep up the blog and Richard can post when he has time and keep us apprised of his latest ventures.

    If we get off topic or too self indulgent I think Richard will let us know. He has given us so much and we give back now.

    Richard I want to thank you for all you have given us and will give us in the future. I know your books have reached a lot of folks who never see this blog and may have a friend or family member with MS and need some real life perspective.

    Find you deputy and keep in touch,
    You have a lot on your plate.
    Sandy

  13. Laura July 28, 2015 at 12:44 pm #

    Getting one to understand what ms is like for me? Is like getting a fish to ride a bicycle. I feel that we are in a me me me world, and no one has time to consider anyone else.
    My conclusion is to suffer in silence. Not that it is that bad for me just slowly wading into
    The ms pool, I am about waist deep and the water is tolerable.
    I have given up on there being a cure. That was big for me always hoping. Now I am just
    Trying to make the best of a bad situation. And there is a private tea party I attend that only
    The qualified can attend. ( bring your rain boots ) and don’t forget your sense of humor!

    • Jan July 29, 2015 at 7:04 am #

      Getting a fish to ride a bicycle… I really like that analogy… Richard, perhaps Laura will let you borrow that one if interested.

  14. Louisa July 28, 2015 at 5:34 pm #

    I really like Jeff’s topic idea. I function pretty well, but I am struggling with my husband’s handling of his fear for the future. My take on it is that those closest to us understand better and more than they would like. I mean the information is a few Google searches away for anyone with an Internet connection. And I think they have all googled. Family members trod their own path on Denial road. And the rough terrain can be exhausting and cause them to lash out. Maybe we need to understand more about what it is like for them.
    I mean, Jeff, your brother losses something too when his big brother can’t go golfing anymore.

    • Jeff July 28, 2015 at 6:31 pm #

      Without a doubt Louisa – I think his statement was as much about his own denial as it was about me. I think it easier for him to think that I can push through things than to come to grips with the fact that my disability is increasing – same goes for my wife, parents and kids, this is scary $h!t! I want them to realize that I am mostly the same guy regardless of any difficulties I may have. And that what we ALL need is to be able to work together and do our best to handle whatever gets thrown our way. Sometimes that means not doing things we used to do. Sometimes it means pushing through…

      tough to do sometimes…

      • Jan July 29, 2015 at 9:29 am #

        Louisa and Jeff, really liked your replies.

        So Richard, possibly…
        Hope: how is it defined, and by whom; how do we deal with the concept of hope, especially as it relates to those closest to us? As they deal with it, or how we all deal with it in varying combinations?

  15. Michele P July 29, 2015 at 2:23 am #

    I completely empathize with your apprehension about completing the book proposal and, therein, facing the Everest-like challenge of writing a book. I can’t help but wonder if working crazy hours and adjusting to sleep deprivation throughout most of your career may have led to developing MS.

    I have finally almost reached the summit of my own mountain of labour — a record number of contracts/projects I had to juggle simultaneously while still in a relapse. The word I’ve used to describe it is “torture”. Usually I love working but forcing myself to work six weekends in a row and double shifts during the day when I could barely sit up at the computer and my arms and hands trembled so much I could hardly type was the opposite of love. I had no choice as I need to work to survive — despite my neurologist instructing me months ago to take time off.

    Now that I’ve gotten through the bulk of the pile, I feel nothing…literally. I have increased numbness in my feet and hands and am having trouble standing. My cognitive function has deteriorated. All I want to do is sleep; I’ve never known such an overwhelming feeling of exhaustion. And the opposite of love: apathy.

    If someone told me I had to do it all over again and soon, I would probably be reduced to tears. Knowing too well the intensive effort you face in writing a book, you may feel similarly. Is there anything you can do to lighten the load? Can you just say no? Maybe not. The problem with MS is it erodes so much of which gives us a sense of identity, and our lives meaning. So we fight to keep going, one key stroke at a time.

    • lisa August 30, 2015 at 12:32 am #

      “Like”

      Michele, I understand what you are describing, and have experienced similar times, day, weeks, years with work. Only so many energy chips for the day and they get squandered with long days at work, losing the everyday life experiences like a warm summer night.

  16. Sue in TX July 29, 2015 at 11:43 am #

    I know working crazy hours and sleep deprivation helped trigger my MS. How unfair that working hard had such payoff. Initially, early on in my MS diagnosis, I tried to “bend time” as Richard puts it, ignoring my physical response to abuse I put my body through. But my body, unimpressed, would say enough, and my mind and body would slow to a very sudden jolting hault. My body demanded I respect it. Humbling. I have had to come to terms with why I feel the need to work with such vigor. Over time I realized I used work to focus my mind, focus it away from unpleasant personal demons . So MS derobed me. I no longer could cloak myself in status, position of my profession. I had to accept or learn or be shown that my identity was more than How hard I could work. the accomplishments the world saw. I I am still trying to figure out exactly who I am.
    But I respect my body more, I know There is more to me than a title, and I was forced to slow down long enough to acknowledge my demons, and seek some peace with them.

    • Mary August 5, 2015 at 1:25 am #

      Amen. Your post describes me precisely.
      Worked to the bone. Dead dog tired and now I realize the title and job were all a poof of smoke in the big scheme.

  17. Louisa July 29, 2015 at 12:04 pm #

    Ha, Sue, you have hit on one of my most despised “MS ironies”. The number of things you can’t stand to think about is greatly increased while the number of distractions in which you can engage in greatly decreased.

  18. Sue in TX July 29, 2015 at 12:32 pm #

    Nicely put Louisa! I will use your phrase “ms ironies” and laugh a defiant “ha” and think of you next time. Gotta remember not to take myself to seriously too. πŸ™‚

  19. Yvonne July 29, 2015 at 7:17 pm #

    I know I know we’re supposed to accept other people’s opinion but I ‘m going to have to say….really to the comment by Michelle “I can’t help but wonder if working crazy hours and adjusting to sleep deprivation throughout most of your career may have led to developing MS.” You can’t possibly believe that on any level. Craziest thing I’ve heard in a while! Wow.

  20. Jan July 29, 2015 at 9:34 pm #

    You know, Y, I cannot comment about anyone else, but given that this disease is very individualized, with me I think that stress is plausible. Not the same type perhaps, but Michelle and Sue both mentioned high stress of sorts.

    For me, I think it very possible that cumulative emotional stress, followed by a subsequent strong emotional trigger, really could have sparked this fire. (My initial Mayo neuro, 10 years ago, thought it possible, though he also said that no one could really say back then… or now. He did make mention that all of his patients were similar to me in that I came to that first appt. highly organized, complete with a binder full of my own MS research, questions–Type A-ish I appeared. Note, please no one slam Mayo about my comment, okay?)

    I seem to thrive on being somewhat busy, but for me staying up late to pen an idea or work I do not think is bad because I see it as “eustress,” whereas emotional stress is “distress.” I do not think my husband would agree, but when I’m positively mentally engaged, I feel fine–well, considering.

    So no one really knows definitively from a medical perspective, but from and individualized perspective, and speaking only about myself here, I do think it is plausible, not crazy. Could be something else. But who really knows? I just know me, and I do have my suspicions.

  21. Jan July 29, 2015 at 9:39 pm #

    Oh, and for me now, I have to watch both the emotional and the physical.

    But, if you had read a prior comment, how else would I have been able to dance at my husband’s H.S. reunion? Or an uber-hot street dance? My emotional state was so positive that I could handle it. (But I also know that I should get proper rest. Won’t say if I do that–doctors orders, btw).

  22. Yvonne July 30, 2015 at 9:04 am #

    I believe stress is definitely a factor in exacerbation once you have been diagnosed and your attitude affects everything regardless whether you have a disease or not. To say your lifestyle causes MS is what I was referring to as far out.

  23. Louisa July 30, 2015 at 10:53 am #

    Well one thing I’ll add is that I have read several times that MS is more common in people who have lost a child. I’m not sure if the statistics on that have held up to further scrutiny, but I have read it several places. That, of course, is much more stress than a demanding job.

  24. Jan July 30, 2015 at 11:39 am #

    Y, not far out but plausible to me personally, esp. since I have not seen definitive proof, only speculation. Educated speculation, but still. There is still much that is unknown, I think.

  25. Sue in TX July 30, 2015 at 12:47 pm #

    I apologize for offending you Y. I didn’t intend to insinuate anyone caused their own MS or any disease for that matter. I intended to state my own personal truth; my long hours and little sleep “helped” “trigger” my MS. Yes, it’s true, Western medicine shrugs about the exact cause of MS and formulates drugs to reduce the inflammation the disease causes in our CNS. But can’t we also look to eastern thought for a salve? It teaches that sickness occurs when ones physical, psychological and spiritual well-being are out of balance. This is not about blaming ourselves, but that lifestyle changes can optimize our over all well being. This is what I was getting at. I’m new here, and was seeking kinship. So again, I had no intention to offend.

  26. Jan July 30, 2015 at 4:06 pm #

    Sue, I will jump in again… while you may be new, I personally feel that much of what you said earlier, and now, makes sense.

    Also know that I’ve had MS for 10 years and have never taken MS meds. I’ve done a ton of self-research over this rather long period, and, while I do hear what many say about this or that cause (north of the Equator etc.), I do try to pay attention to most things and filter/decide for myself what is right for me.

    Currently, I’m 95% of the time gluten-free, dairy-free. (100% is to stressful for me). And now, new supplements for good measure (more education there, too). I think it all helps. At a minimum, it helps with the middle age gut! (Ah, not that I completely admit to the middle-age thing, though it is what it is, actually). If I took every suggestion out there, I’d go crazy. (No bee stings for me, thanks. But I can at least respect the trying of something there). Need to deal with my own “status quo:” mostly there.

    re “us causing a disease:” I had the same conversation with a relative who had a different health issue. (I won’t specify so as to not bring in another issue). My point to her was that yes, I do think that some kinds of stress can exacerbate, even trigger, things. Her reply: “But then, you’re saying I caused my ___.” NO, that is not what I was saying. As you had said, I placed no blame. It’s all about moving forward and working to find an optimal health balance. It is what it is. For me, moving forward also means to know, really know, from what I was moving.

    Me? Maybe I did help to trigger this by how I responded or did not respond. But I also know that I did the best I could at the time, which is likely what everyone does. Hindsight is 20/20. It’s NOT about blaming: it’s about learning, growing, becoming healthier in body and spirit… and, if fortunate, helping others along the path.

    If our approach offends, my next question would be, “why, exactly?” Keeping in mind my previous paragraph, the goal is to try to understand and work toward healthy changes, right?

    (And you may notice that I tend to “talk” in some responses, whereas others can say much in fewer words. I’m a copywriter and should do better here…)

  27. Yvonne July 30, 2015 at 5:29 pm #

    Sue for me disagreement is not offensive. We can all give our views on causation and we’ll get a few to agree and we’ll get a few to disagree. We all follow different protocols, diets and philosophy. Whatever works for each individual is their truth. Feel free to express yourself and be prepared for push back but no one here takes anything personally because most of what we say is based on our experience. I crtainly don’t get offended over someone else’s observations. Could cause me to get stressed which could cause an exacerbation right πŸ˜‰ Welcome aboard Sue.

  28. Sue in TX July 30, 2015 at 7:16 pm #

    Ok then I’ll consider myself indoctrinated to your club. Glad to be a part of your lively discussions!

  29. dale July 31, 2015 at 7:13 am #

    This actually is an interesting club of folks with diverse backgrounds and MS as a common thread. Most all are thinkers. I don’t see that level of interpersonal camraderie in the international Stop Continental Drift Society.

    I do see it in my Mushaholics dogsledding group though. I just wish our issues were as simple as guessing if so-and-so is going to scratch in the Iditarod this year.

    I wonder if Meredith ever reads this blog. I’m not inclined to steer family members to it. This group has become rather personal to me.

    • Yvonne July 31, 2015 at 8:32 am #

      I feel the same way about steering famiy here Dale. This group is like an MS diary we all share.. I know my family may not understand or they may misinterpret some of the comments here.

  30. Jan July 31, 2015 at 1:05 pm #

    Makes sense, yes it does.

  31. Jan July 31, 2015 at 1:22 pm #

    And now, Q’s for Richard… you don’t need to answer just now. Or maybe they’re rhetorical, related to your upcoming book on “hope:”

    * Who are you targeting as readers?
    * Is it for everyone, with personal insight to enlighten? Or, more specifically, for those with health issues or those who know someone with them who care about better understanding, relating? (That alone could encompass a lot of people, I imagine).
    * What is your core purpose in writing? What do you hope to accomplish?
    * Why would I, or anyone, want to invest reading time? (What’s in it for me?) Sorry, that sounds rather blunt, I think, but other than you are a very fun writer, known for other books, aside from us enjoying your writing (for me, that is an automatic read), what are your goals here to attract the less familiar? What’s your core purpose?

    Your other books have had value of helpful personal insight, a window to the world of others with different issues and perspectives, understanding, even humor–think Jasper. So I’m quite sure this will be an interesting read. But just curious. (And if you tell me to just hang in there and read the thing, I will be gracious and do that).

    Okay, I’ll exit editor/publisher mode now… just curious.

  32. Andrew July 31, 2015 at 9:25 pm #

    I sometimes get busy and behind reading the blog and posts. Then it is like a rich treat to binge read them all to catch up. I sometimes wish I had gotten to them sooner as I have thoughts that are elicited. Richard, for some time, I have been inspired by your various thoughts and inquiries about hope, optimism, faith–how it applies in the mundane here and now and the big picture. We, who are all cousins of sorts, close and distant, who share the initials MS, have much to relate with each other.
    I had a close friend for many years who wrote novels, short-stories, plays, and was one of the founders, in the late 1950’s, of Chelsea Magazine. I first met her when she did a stint as a writer-in-residence at the university in my community. With lives beyond polar opposite, it was a curiosity to some friends how we hit it off so well. She was, in her way, somewhat of a “curmudgeon” to use your fond identity. Strident and blunt to some, she rarely withheld a point of view. A survivor who escaped from a Paris prison, during Nazi occupation, before she was to be sent to a labor camp for the crime of helping to hide a Jewish family, she would make a sour face and proclaim that hope was the dirtiest four letter word in the English language.
    We enjoyed many hours of debate, arguing and white wine. My privileged Southern upbringing in a “progressive” environment emerging into support for fairness of equal rights and ending segregation, gave me a world view of hope for the future and the potential for positive change. I knew the stories in the Hebrew and Christian Scripture. She knew the stories in the Greek and Roman mythology. She knew life in the French underground. I came to know life of Appalachian mountain culture. We entertained each other with our stories. So our differences in how we experienced themes of hope, faith, optimism, change, betrayal, loss, pain, transformation, etc. have come back to me with inspiration to write them down before my memory can no longer retrieve them. Thank you, Richard, for the inspiration. I am also grateful that it does not require the deadlines and contractual work that face you. Writing for ones own pleasure has got to be less pressured than for commercial success. I am sure that whatever you write will be another commercial success because you write from a place that includes your original voice and life experiences as well as a journalist’s keen observations of others. If there is any joy to be found in the process, I hope it surprises you with ease and intrigue.

    I have always gotten along and enjoyed the company and opinions of curmudgeons. My older brother acquired that role early in our family. So I adopted the role of jester and learned how much I could get away with by injecting humor and witty sarcasm. So if you get desperate as Labor Day approaches, here’s a possibility. With your many contacts and following among those of us with chronic health challenges, you could ask us all to send you our musings and experiences on hope, et al, with one major proviso: contributions must adhere to the seventeen syllable, five-seven-five, haiku format. You can collect and edit them as an anthology perhaps titled, “Some Muse Over the Haiku-kus Test.” (sorry) With that said, here is a sample from me.

    Haiku on Hope, #1

    If bladder chatter
    would, please, only learn how to
    think before it leaks.

  33. Laura August 1, 2015 at 5:18 pm #

    What is up with zip lock baggies? When did they get so difficult to open and even harder to close.

    • Joan Z August 1, 2015 at 5:31 pm #

      Oh yeah…, and the bigger they are, the harder they are to open/seal. Not for the impatient! And yet one more “little” thing the unafflicted don’t get. Fist bump Laura!

  34. Betty August 1, 2015 at 6:02 pm #

    Pet peeve. I never feel more disabled than when dealing with a “convenient re-sealable” bag.

  35. dale August 2, 2015 at 8:51 am #

    Oh yeah, like trying to pull some Saran wrap off the roll and tear it with one hand while balancing with the other.

  36. MB August 2, 2015 at 4:45 pm #

    I’m not even sure what to respond to. I thought of a haiku, had thoughts on what is shared with close friends, and even wanted to throw my two cents in about resealable bags. The result? Nothing.

    It’s probably the reason why teachers are needed in the classroom. We know that the students are smart enough to direct their own learning, but at the same time we know that they need someone there to provide focus.

    I kind of like chaos as long as it’s…organized.

    • Yvonne August 2, 2015 at 6:13 pm #

      I just fought with a zip licked bag and it won. I know keep a pair of scissors handy so when I get frustrated with all the “resealable” crap I snip instead of zip! While we’re talking about frustrating conveniences, I hate the tabs on boxes I.e. Chicken stock, childproof caps on everything including mouthwash. Is anyone considering the disabled population? The ADA needs to cover that everyday shit as far as I’m concerned. I’m gonna slit my wrist opening up a freaking bag of popcorn on day!!

  37. Betty August 2, 2015 at 8:02 pm #

    Can we talk about “handicap accessible” RAMPS that are too far away from a main entrance, too damn long, and NOT AN OPTION for anyone with canes and walkers? WTH ?

    • Rosanne August 3, 2015 at 9:53 pm #

      How about those long YELLOW handicap things that look like giant legos? I cannot tell you how many times I’ve tripped on them. Not to mention you better not have anything (eggs) in your shopping cart when it goes over them, everything bounces. I’d like to know who designed them…….

  38. Yvonne August 2, 2015 at 10:14 pm #

    Agreed Betty. Why would they give us designated parking spaces in the rear or at the end of a building? Who are they talking to that says “I know let’s see how challenged they are”. Puzzling.

    • Jan August 2, 2015 at 11:35 pm #

      I recently educated an architect over the phone re how very nice it would have been to place the H parking spots beside my pool/rec building instead of the pretty landscaping, making the walk into the rec far harder than swimming there, especially for a woman I know with MD. He was really nice about it, and I hope the call will inspire on future projects…

      Yes, it would be great to have someone with physical challenges give input prior to a design stage of community and other buildings.

      For me personally, I can prefer some stairs to a ramp. When my ankles feel sprained, as they often do, and I use my cane then a ramp can actually be harder.

  39. Jan August 2, 2015 at 11:27 pm #

    Kind of nice to know that I’m not the only one apt to divert on tangents πŸ™‚

    Yes, I’ve noticed that zip-lock sandwich bags seem harder to seal. You know the old saying, “If its not broken, don’t fix it!” And that reminds me of my pet peeve: self-flushing toilets. Automatic sinks I also think are unnecessary, but the toilets…

    I mean really, do we not teach our children when young to flush? And what’s worse, a manual flush (for anyone, healthy or not), or the “luxury” of self-flushing toilets… that nearly always seem to flush at the most inopportune time? (And with me, they tend to. Except that I use more TP and time to cover the sensor when not flat on the wall). Answer: the latter. I really dislike them.

    Back to another topic: Richard had mentioned Frankl’s “Man’s Search for Meaning” book recently. Will mention some comments when finished. A good read: gripping, insightful.

  40. dale August 3, 2015 at 9:20 am #

    Self flushing toilets… hmmm… actually sometimes useful in those places not modified for the non-contortionists among us. Then, there’s the eco-friendly two-handlers with different water flow for different things, and the european two-handlers where one is a bidet… hell of a shock when you think your flushing and get a butt bath instead.

    These are definitely the kind of topics I need to think about today. i came on to whine about my spouse and his obsession about our beach house not having sold (my home actually, a killer when he moved my wedding dress out of the attic) where all my kids spent their early years until we had to move to take care of HIS parents. it is my heaven. I wanted to adapt it so handicapped kids could have a retreat someday. Not many places like that here.

    But we have used all our resources and my inheritance to pay for colleges, Richard do you know an adventurous type, the Urban Cowboy Banana Republic sort that fancies themself an outdoors person with some money who loves to swim, sail, kayak, fish and is not obsessed with granite countertops?

    I wanted to die here.

    Maybe I should write to Ellen Degeneres. She seems to be all over stuff like this. My science salary just won’t cover tuition anymore.

    See Richard? It is possible to whine with words.

  41. Mary August 5, 2015 at 1:34 am #

    I would like to discuss how one knows when RRMS changes to SPMS? Is it constant new symptoms with no remission? Does anyone else feel like nothing but a head on their pillow at night with total body numbness? It goes away mostly when I wake up but everything is dead at night.

    • Yvonne August 5, 2015 at 11:02 am #

      Mary my neuro told me that I was SPMS because my exacerbations were infrequent to none after having been approximately every 3-5 yrs throughout my first 30 yrs. Solumedrol infusions no longer did squat. My disease has probably been doing the slow march towards SPMS for the last 3yrs and now I am here. Was not prepared for how quickly it can change. For me I went from teetering on a cane to rollator within less than a year. My walking around became dangerous and I had to succumb to the inevitable. For me the transition is more difficult psychologically than physically. Good luck:-)

      • Mary August 6, 2015 at 6:25 pm #

        Thanks Yvonne
        I read Christopher’s post below about the blurred lines and tend to agree with him.
        I feel like writing a book called MS Froze In Time.
        Pun intended

  42. dale August 6, 2015 at 7:29 am #

    In re-reading some of these posts last night as a respite from the daily castle siege, I realized there are some really fine writers in here. I think Richard should just give you all an opening line and let you go from there on a chapter.

    The sum total of my chapter will be “It was a dark and stormy night” But with the rest of you contributing? Book. Done. Then fight over who gets to play Richard in the made-for-TV movie.

  43. Yvonne August 6, 2015 at 11:01 am #

    I think Richard is soliciting for a blog administrator so he can focus on his book right now. As I’m sure he can see we go all over the place without a topic to start the discussion and a moderator to spark things up when we get bored πŸ˜‰

  44. dale August 6, 2015 at 1:28 pm #

    That’s half the fun. But as probably the worst offender you’ve got my vote
    Yvonne. You have a nice way of saying ‘your time is up, please be seated and remember to answer the question next time”. Like a good political monitor.

  45. Christopher August 6, 2015 at 5:16 pm #

    I had some ideas, but I’m having a lot of trouble concentrating and it’s also hard to keep up with many of you. There are some really good topics of conversation, but then they trail off to other places that are unfamiliar and feel more like conversations at a cocktail party. Not saying that’s ‘bad’… it’s just chaotic.

    I did want to definitely add something to some of the comments above because it’s important, and adding to knowledge is important. I wanted to comment on the RRMS vs SPMS issue. I do have some experience here beyond personal experience. One of the biggest secrets, that’s not really a secret, in neurology about multiple sclerosis is this: there is no SPMS. In fact, there really isn’t any PPMS or PRMS either. It is an outdated system that is really just for the benefit, for lack of a better term, of us patients. Those terms are also helpful in other areas, but it would be highly detrimental for me to list them here. In a neurological sense basically all multiple sclerosis is RRMS, and you may not feel or realize the relapses when they occur. Multiple sclerosis is a PROGRESSIVE disease that science has yet to figure out how to stop. Some things slow it down in some people, but it doesn’t stop causing damage… ever. The body tries to keep up repairing damage, but at a certain point it suffers from the law of diminishing returns. Some people progress faster than others, and some people (a rarity) have a single episode that is spontaneously self-limiting. Then there’s also the horribly unfortunate few, usually children and teens, with fulminant MS. They usually don’t live more than a couple of weeks after diagnosis. I think the most important thing to realize is that there is no need to focus on whether you’ve gone over some imaginary line between RRMS and SPMS. But instead focus on how to make what you have to work with work better. I know that all sounds pretty heavy, but it’s not all gloom-and-doom… reversing the damage is possible and even proven, but the next step is keeping the disease from attacking again. We may be soon there, possibly 5 to 10 years away at most. In the meantime, learning to make moments count is key.

  46. Yvonne August 6, 2015 at 6:16 pm #

    No worse than me Dale πŸ™‚ I flit from topic to topic on the thread because you folks are interesting and we all share a bond.
    Christopher-that was a damn good post. I agree Neuros have given us “placeholders” because that gives them and big pharm a path to keep us believing the next thing will be the thing that works when it’s actually nothing to stop the progressive MS march. We’re participants in a game we can’t win yet we must keep playing. Maybe those placeholders are a good thing psychologically as we can be grateful we’re only RRMS maybe that’s it and then grateful we’re not SPMS maybe that’s it and so on because it breaks the march up into manageable segments. Someone mention HOPE? πŸ™

  47. Jana August 6, 2015 at 7:58 pm #

    I agree…Excellent post Christopher! Thank you,

  48. DianeT August 6, 2015 at 8:17 pm #

    Thanks for your comments Christopher. I found them very helpful (and hopeful!)

  49. Jan August 7, 2015 at 12:13 am #

    Yvonne, I’ve been thinking about your Solu-Medrol comment… interesting to me, and it made me think of disease progression being involved when 3-day infusion string of 3 (and my last, I’ve “vowed”) did nothing. It was only time that calmed it. (Not solved it; calmed it).

    And I’ll just mention this, though swamped right now, so it doesn’t pass… I think it was yesterday I read that it was Anne Frank’s bday (but a quick wiki search netted a different date). Regardless, I had been reading a book by an author mentioned by Richard: “Man’s Search for Meaning,” by Viktor E. Frankl…

    Gripping sobering. Also thought of Mauthausen, a place i visited at age 11 (and something you don’t forget). About the first 3/4 of the book detailed his concentration camp experiences; next, he moved to “logotherapy.” He spoke about various aspects of “meaning” (pp. 113-119), including the meaning of suffering. I will pick it up again and finish soon (hopefully), but this struck me:

    “When we are no longer able to change a situation–just think of an incurable disease such as inoperable caner–we are challenged to change ourselves.”

    ————————–

    This book was first written in 1946 (auf Deutsch–German; 1959 in English); he died in 1997. Wow, what he went through. And what he later imparted as a psychiatrist I can find meaning in the application.

  50. Louisa August 7, 2015 at 9:59 am #

    Hey Christtopher,
    Thanks for your post. I knew that and it helps me to know someone on here knows what I know, if you know what I mean. :-). i’m still doing really well and I hope that the old MS theory that “you go as you’ve gone” is true for me.
    Oh and,Jan, your post on your changing yourself is empowering -except MS is a brain disease. And, to me, one’s brain is one’s self so the disease does some of the changing.

    • Yvonne August 7, 2015 at 10:48 am #

      MB-you verbally illustrated the point I was making with your classroom analogy. Somehow I missed your post until today. We definitely need someone in the front of the classroom as we go from Tolstoy to zip lock bags in the same thread πŸ™‚ Hard to know where or whether to jump in! Guess we’ll treat it like a cocktail party: skip around darting into the conversations that interest you.

    • Jan August 7, 2015 at 9:32 pm #

      Louisa, I think your point is valid… for me, it’s possibly where that denial that Richard mentions enters in, in an effort to remain steadfast emotionally when I cannot control physically.

  51. MB August 8, 2015 at 11:06 am #

    We could take some of his RMC tweets and expand on them:

    Richard M. Cohen ‏@RMCJourneyMan Aug 6
    Harvard Med study says optimism helps people cope with disease, recover from surgery. A positive outlook helps overall health. Mind power.

    I’m sure this applies to chronic progressive disease like multiple sclerosis, but at times it’s difficult to remain optimistic when the aggressor holds the upper hand. Is that a pessimistic thought or a realistic one? Can you be a realist and an optimist at the same time?

    I read an article about the study Richard referenced and found McLandburgh Wilson’s explanation of an optimist and a pessimist funny but accurate:

    β€œTwixt the optimist and pessimist
    The difference is droll
    The optimist sees the doughnut
    But the pessimist sees the hole.”

    I know that sometimes I focus too much on the holes in my brain when I should be focusing on the good that remains.

  52. Betty August 8, 2015 at 3:37 pm #

    I wish we had a “like” button on this blog. I’d hit it for this last comment.
    It’s brilliant MB, and very funny. πŸ™‚

  53. Yvonne August 8, 2015 at 9:44 pm #

    I think many of us focus on the holes MB because they are what change our lives although rethinking it, the doughnuts are what make us fat πŸ˜‰ Just a silly thought on a Sat. night.

  54. Jan August 8, 2015 at 10:19 pm #

    Yes, the doughnuts provide the sustenance, ultimately. (Did I really just say that? I don’t eat them anymore, ha).

    And I just finished the V. Frankl book. More of his thoughts in a later chapter entitled, “The Case for Tragic Optimism,” three points re “logotherapy” and creating meaning in one’s life:

    1) by creating a work or by doing a deed; 2) by experiencing something or encountering someone; 3) by rising above oneself, growing beyond oneself, and by do so changing oneself.

    In the section on “tragic optimism,” he talked about “the defiant power of the human spirit.” And gave an example of a young man who broke his neck in a diving accident at age 17 who, decided to not let himself be broken by what had happened to him, creatively changing the situation that caused him to suffer (he used his mouth stick to type).

    He also talked about WHERE we derive our value as humans; optimism not anything to be commanded, ordered, or forced; and the “know-how to suffer” (when it cannot be avoided). Also, “Once an individual’s search for a meaning is successful, it not only renders him happy but also gives him the capability to cope with suffering. (This, from someone who endured Auschwitz); differences between the “external world of achievement at the expense of the internal world of experience.”

    Okay, enough mini book review and “thick” topics. Time to go eat a doughnut.

  55. Dale August 9, 2015 at 1:35 am #

    Funny, right from the start I wasn’t sure if Richard’s book was about donuts….