I’m Bored

What is there left to write about here, to wring hands over, obsess about and keep us awake late into the night?   Seriously. I feel as if I am running on empty. We can go on and on about politics and the president. That at least would feel good. But what about illness and infirmity, coping and caving in. It seems as if there is nothing new under the sun.

Life is what it is. We hope for the best and sometimes get the worst. So it goes.   We are prisoners of a process, a neurological journey no one wants to take. We know that. We have been kidnapped. Yada yada. No attitude adjustment is going to change the course of a disease or alter our destinations.

So let me ask this. What are we doing? I try not to spend time thinking about my health. Certainly, I don’t talk about it anymore than I have to. What is the point? Positive changes in what medicine offers us are incremental. In my long duel with disease, I do not remember any real headlines.

I am not being negative.   Really. I am not complaining. I would like to trade diseases like baseball cards. At least that would offer a new pasture to cross. I am bored. Maybe I should get a hobby.

48 Responses to I’m Bored

  1. Jan June 6, 2017 at 7:21 am #

    Ah, but attitude adjustments do affect how we live each day–perhaps not with the course of this nasty disease but how we respond to it. And as often said, it is our response that matters most to any matter.

    Yes, perhaps time to get some type of a hobby, especially if you are finished with your book. I think what helps is making some type of a difference to someone else. This blog does that; you’re a writer and likely know that everyday topics abound.

    How about making a difference and encouraging the positive even from very simple things?

  2. Jan June 6, 2017 at 9:50 am #

    Seems that I’m always getting emails (although I’ve hit the unsubscribe button many times), and occasionally they’re interesting…here is one from the mother country:

    https://rememberbooks.wordpress.com/2017/05/22/12-things-i-see-happy-people-do-that-unhappy-people-do-not/

  3. Jane June 6, 2017 at 10:03 am #

    Oh Richard, Jan is spot on. You make an enormous contribution. You are one of my heroes.
    Figure out what you want to do next, and do it. You are a gifted man.

    I often think of other people who inspire me. What about Stephen Hawking? He has not only accepted and surrendered to his disease; he has flourished. When asked to comment on his remarkable life, he said, ” What more could I have asked?” Dr. Hawking is not his disease.

    What about Lou Gehrig? On July 4, 1939 and upon leaving his baseball career, Gehrig gave a farewell speech saying, “Today I consider myself the luckiest man on the face of the earth.” Gehrig went on to work on the sidelines of baseball until his death two years later.

    And then we have Franklin Delano Roosevelt who guided a country from a wheelchair. Did FDR mourn the loss of his legs? I’m sure he did. But, he moved forward.

    Boredom is our worst enemy. When we finally leave this earth, let our souls be richer for the journey we made. None of us may be a Hawking, a Gehrig, or an FDR, but in our own way, we can be as impactful.

    Carry on! You never know who takes inspiration from your example.

    • Richard Cohen June 6, 2017 at 12:21 pm #

      Stephen Hawking is exponentially smarter than I. Lou G. could hit a baseball farther. FDR had more leadership skills. I cannot compete with them. I am content to inspire my kids.

      R.

  4. Jan June 6, 2017 at 12:39 pm #

    Jane I like your insight…Richard, there’s no need to compete, and this has been on my mind, so I’ll say the anecdote from sitting in the airport with my feet absolutely killing me after barely walking with my bags on my rollater…

    After moving after a job change, I was an unknown commodity at our kids’ school…in a PTA mtg, the biggest impact did not come from the three who spoke of their kids at Ivy League schools but from the mom who spoke of her child who didn’t do well somewhere, stayed locally, and then found a better fit than at the first school.

    Definitely not to slight Ivy League schools or any accomplishments, but I think the takeaway there was that she made it clear that if somebody is college-bound, then there is a place for everybody, a school for everybody. I think her impact was greater for all who had attended than simply glorious glitz.

    So whether at Harvard, in Iowa, or in a trade or other job, what matters is the person inside and how we can impact others. Richard, you have made an impact… I stay away from typical MS things except for your blog.

  5. Jan June 6, 2017 at 12:44 pm #

    And one more thing…I remind myself that I will always be my boys’ parent and a worthwhile person, regardless of any health issues.

    • Richard Cohen June 6, 2017 at 8:21 pm #

      Agreed. That is our highest calling.

      R.

  6. Amy Corcoran Hunt June 6, 2017 at 1:22 pm #

    Here’s a hobby for you: get me a book deal too! Ok don’t, that’s probably not fun for you.

    Try following ReWalk and Harvard Wyss. My hobby is getting in physical condition for an exosuit. Think about it. In a couple years it will be like slipping a pair of bionic pants on.

    It hit me the other day that, were it not for MS and my wheelchair, my life would be utterly perfect. I mean really. Couldn’t ask for more. I have this great life, and also this wrecking ball.

    I never say nonsense about the necessity of suffering. Like, without pain, how could we know joy? “Its stupidity and lack of sophistication could be plumbed for centuries but suffice it to say that the existence of broccoli does not, in any way, affect the taste of chocolate.” ― John Green, The Fault in Our Stars

    Have a good day. Work on your abs, we’re going to need abs.

    • Richard Cohen June 6, 2017 at 8:27 pm #

      “He who learns must suffer. And even in our sleep pain, which cannot forget, falls drop by drop upon the heart, until, in our own despair, against our will, comes wisdom through the awful grace of God.”

      Aeschylus

      • Amy Corcoran Hunt June 7, 2017 at 9:20 am #

        Legend has it that Aeschylus died in Sicily in 455 BC, killed by an eagle flying above him that dropped a tortoise on his head. The eagle thought Aeschylus’ head was a rock suitable for shattering the shell of the tortoise, so it could then have dinner.

        What happens to us is so ridiculously random.

    • Louisa June 6, 2017 at 9:58 pm #

      Gee, Amy, I have been having a similar thought, constantly. Whatever I am doing lately- because it’s all been such great stuff- I think ” wouldn’t this have been great!? ” My life is so almost perfect yet totally not – everything is ruined. How did I get so lucky and then so unlucky?
      But Richard is right – I’m sick of thinking about it. Yet every other thought is ruined.

      • Amy Corcoran Hunt June 7, 2017 at 9:39 am #

        I had a medical questionnaire I had to fill out a few weeks ago. They needed to know if my PPMMS had given me cognitive impairment (no), if I could swallow my food (I can), and if I could go to the bathroom without needing assistance with toilet paper if you know what I mean (dear god).

        When I get cranky about my wheelchair, and I do, I try to think about all the lovely answers on my questionnaire.

        If that doesn’t work, there’s always North Korea. The night before the birthday of whatever Kim is Dear Leader, the state-run TV broadcasts films about his imagined accomplishments. If you were unlucky enough to be born there, you have to watch and not speak a word or fall asleep before the long broadcast is over. How much would that suck?

        • Louisa June 8, 2017 at 9:42 am #

          Yes, Amy, I agree again. I often think how lucky we are to be US citzens by birth. And to take it a step further, I sometime think of the great odds we all had to beat to be born and have a life at all. I mean how many sperm and egg combinations actually make it to that first breath. Luck is relative for sure ,but when I am at my least philosophical, I compare myself to my siblings and friends and to myself without this damn disease!

  7. Jane June 6, 2017 at 1:34 pm #

    Richard, I’m guessing you are every bit as smart as anyone on this earth. You have great leadership skills–you are leading all of us. And you hit it out of the park with every swing.

    So, now, what else you got for us? I think you’re playing us. It’s working. We’re all becoming stronger because of you. Keep going.

    • Richard Cohen June 6, 2017 at 8:32 pm #

      Playing you is a little cynical. Am I provoking you? I hope so. I suppose I use you to provoke myself. I think I get to do that, and you guys are too smart to be manipulated. Game on.

      R.

      • Jane June 7, 2017 at 12:02 pm #

        A little bit of cynicism goes a long way, so I’m sorry to sound that way. You are thought-provoking, however. I like that, so please, provoke on.

  8. Yvonne June 6, 2017 at 3:36 pm #

    So can we talk about what to do when these moods hit us? Something other hug your family, Prayers, and reading someone’s book! My body is not cooperating with my brain right now and i’m in a funk because my daughter and niece are planning a wonderful trip to Amalfi coast and they wanted me to go. We have done family trips to several European countries. Problem is I find most places are not equipped to accommodate handicapped. Cobblestone and narrow sidewalks are not friendly to canes and definitely won’t be to walkers, wheelchairs scooters. Last trip was Greece and I had to pass on most of the sightseeing aNd struggled through the rest with my 3 prong cane. Trying to get in a boat to get to a couple islands was comical but exhausting. I am so mad at this disease right now as I told my daughter why I probably couldn’t go. My niece asked “isn’t there medication you can take” as she knows that’s what I used to do. Go to hospital take Kickaboo joy juice and rebound ready to go. I told her I wouldn’t bore her with a rant about big pharmacy and government research dollars because I’m bored with constantly ranting about it! So I agree we get bored as nothing seems to change and the people listening are basically the same people going through the same deal and the conversations get redundant. I need someone to say something that sparks me back up because I’m pissed I probably won’t make it to the Amalfi coast with my daughter in 2018 .She’s disappointed also as she called around and realized what the barriers are for me to be a part of the trip. Stairs everywhere. 🙁 The regular feel good suggestions from folks ain’t working after 40 yrs! I’m not throwing a pity party just tired of not having control. Big sigh…bored.

    • Jan June 6, 2017 at 10:52 pm #

      Yvonne, I will say that participating in certain events and traveling are the hardest things for me about this disease, especially when it involves family. I myself am not bored as much as tired and frustrated with its limitations– even harder than the pain and difficulty in doing the simple things.

  9. Brian L. June 6, 2017 at 6:54 pm #

    When I first started following this blog, it was mostly to follow the stem cell trial that you were participating in. Over time, I almost forgot about the trial because I was getting so much more from you and everyone else who comments here. But since you ask what we can talk about, what was your experience with the trial? I think you said one time that you would share your story “once that train pulls into the station “. Sooooo…where’s that train? I think I just saw somewhere that the Tisch Center was moving ahead to a phase 2 trial. Was this the same one?

    • Richard Cohen June 6, 2017 at 8:37 pm #

      Yes. The trial was a success and is approved by theFDA for Phase two. My results were marginal. Disappointing. I go into it in my new book, Chasing Hope. Out in the spring.

      R.

    • Yvonne June 6, 2017 at 11:48 pm #

      For me, it’s the hardest Jan. Especially with this Amalfi trip. I always wanted to go back with my daughter so I’m madder than usual about MS never ending limitations. I guess I’m tired of the same old recommendations to “hang in there” or folks saying “you’re doing better than_____” or worse “you really are doing well considering “. I want to scream “YOU HAVE NO IDEA WHAT I’M DOING MENTALLY TO PROJECT THIS IMAGE RIGHT NOW”. So instead I come here an scream because most people here are smiling and screaming also. Just looking to take my mind off of another disappointment by hearing something different to make me laugh through this. Anybody got a funny story? 🙂

      • Jane June 7, 2017 at 12:11 pm #

        Hi Yvonne. Have you tried trekking poles or arm crutches? I use trekking poles, and they work on cobblestone. There is a company that designs arm crutches. They are called sidestix. They are pricey because they design them for each individual. I’m thinking of getting a pair for trips and general walking. I recently bEgan taking Ampyra, and it has helped me walk better and faster. I am 70 and have had MS for 35 years, but the poles work for me. Good luck, and I hope you make the trip. So what if you are sitting outside enjoying the beauty of Amalfi while others are tripping over cobblestones.

        • Yvonne June 8, 2017 at 10:48 pm #

          Jane I told my daughter if they rent a villa with a beautiful view in Naples I would sit on the terrace enjoy the view and drink Limoncello! 🙂 Not sure if my balance will allow pole experimentation but thanks for info.

  10. Christopher June 7, 2017 at 5:42 am #

    A priest, a rabbi, and a Buddhist monk walk into a bar. The bartender says, “what is this… some kind of a joke?”

    • Yvonne June 7, 2017 at 11:16 am #

      🙂 🙂 yup, LOL

  11. Jan June 7, 2017 at 7:01 am #

    Humor does help!

    And Yvonne, sometimes screaming into a pillow or when no one else is around can be a temporary release. Not a cure for frustration, but an outlet. (I’ve tried both, plus some tears in anguish of sorts when barely able to do stuff). And then a deep breath and a moving on.

    Will say that this blog helps me more, with others who truly get it. My buddy denial has not been serving me well in the past six months, though I do still tend to soldier on.

    And regarding walking around Europe (or anywhere), I know others who can do that ever so easily. I cannot; can relate. I suppose that I can only do what ai can do; some stuff just stinks: agree. I know two who romped all around Europe, and I cannot. So that chair is looking more attractive. (But it doesn’t do steps or fly).

    Richard has spoken of “perspective;” whenever I get understandably frustrated, I tend to use humor, such as yesterday at the airport, with people hurriedly walking all around. Thoughts then were, “Geesh, since when did Midway get so big and long, and I thought that light ahead was the exit, not the start of another kind walk; more sane people would have taken a wheelchair; so glad for this rollater to carry my bags and lean on; could never do this with a cane, no way; my husband would never let me be so crazy as to walk this–he would get me a wheelchair.”

    Could not attempt the people mover with a rollater in my state; wow, how hard this is now. And then a much older, somewhat serious-looking woman came from the other direction using her rollater–I leaned over slightly as we passed by each other, “Want to race?” She broke out in a smile.

    Sometimes all I can manage is some humor.

    And then, my sister met me outside and drove to the nearby fave Kirsten’s bakery. (Forget the diet). When I mentioned the owner’s son, born within days of our first, the woman pointed to a photo on the wall and a tribute by some Wrigley player. He died last year after falling off his skateboard and hitting his head. Gripping.

    Cannot stop thinking about that. No, not about a harder situation than mine or to make us feel better. That is not it at all. My focus is on him, his mom and family. This is about THEM.

    • Yvonne June 7, 2017 at 11:14 am #

      🙂 🙂 yup, LOL

      • Yvonne June 7, 2017 at 11:17 am #

        Duplicate comment for Christopher joke

      • Yvonne June 7, 2017 at 11:20 am #

        My comment landed wrong. It was in reply to Christopher joke that made me chuckle.

        • Jan June 8, 2017 at 11:59 pm #

          No problem, and I understand your clarifying

  12. Jan June 7, 2017 at 7:04 am #

    Sorry, Richard, I hijacked some of your blog space, I see. I’m more of a website than book writer, though friends tell me I should do that…for now I’ll look forward to reading yours

  13. Jan June 7, 2017 at 10:39 am #

    A half-pound of meat, please. That’s all.

    That’s just not my way. Will say that mine is more what a friend calls “social snacking:” I tend to take longer at the grocery store and my usual places because I talk with (not to) people l, and actually many tell me a lot of their life stories–nothing inappropriate going on at all.

    Most of my friends are still in another state, and I am more connected there. As hard as my issues are, other people have their things too. The upside of MS is that I’m more visibly a safe person; people know that I could likely relate to them…helping somebody is a good thing. So getting beyond myself and helping another is good. It can provide some true meaning I amidst my own battle.

  14. nancy June 9, 2017 at 4:56 pm #

    Jan, thank you for reminding me that I need to remember that I am a worhwhile person. This disease makes me at times

    feel worthless since there are so many active things I want to do with my grand children and can’t. I hope showing them my

    love will be enough.

  15. Jan June 9, 2017 at 6:25 pm #

    Nancy, I understand and anyone, regardless of health, showing love, true love and care, is important. I think this disease brings to the forefront the true meaning of the word, “value.”

    My sister and I recently met with a couple of my high school friends, and one mentioned that as a doctor, truly listening to people makes such a difference/impact. He was referring to home evals of the elderly, but it applies to anyone. The other, a neurologist, will connect me with another with MS who can make a positive exercise and other impact, and I’m interested.

    On another note, a friend sent me this link–any thoughts, anyone?

    Meet the Cambridge scientist on verge of curing Multiple Sclerosis http://www.cambridge-news.co.uk/business/technology/meet-cambridge-scientist-verge-curing-13129687#

  16. Jan June 9, 2017 at 7:31 pm #

    I am majorly annoyed right now…can someone please tell me the name of the gentleman who passed away who was an architect who had a disability and advocated for patient rights?

    I’m back home and a new whole foods has only a revolving door only on the side with the restroom. I managed through it with my rollater, but there’s no way I could’ve walked back-and-forth…when they design buildings this is not what to do them. I called the manager of the store, and he was very kindly but I think designers need to know more information and this could be a role for me of being an advocate.

    Richard can you please write down his name again thanks.

  17. Jan June 15, 2017 at 11:40 am #

    Note to self: don’t take your rollator on an airport people mover with your two bags atop. And actually, don’t take the thing on there at all. Get a wheelchair assist, esp. with tight time and lots of acreage to cover.

    You likely guessed it. I was traveling alone, never check bags, could barely walk, the time was tight, and my gate was far. A cane would never work, but a rollator and determination would. Back in my skating days, I now recall being instructed to step off of the oiled plastic slide or risk a face plant. (Never happened to me; did happen to a few).

    And oh, yes, one is to step off of a moving walkway (or have another to help lift the empty, as in empty, rollator). Well, they slide on swimmingly well, but not off. Kind of like a peaceful, ignorant ocean swim with a shark just waiting to swoop in. (Think, “Jaws” theme song).

    Good thing I had no shoelaces to be eaten up and really get stuck. Did horrify about six people who immediately came to my rescue. Truly feel bad about that. (See, kindly, caring people are still out there. One woman said she was en route back to Virginia—so caring, and I’d personally thank her if I could).

    Travis Bradberry (Emotional Intelligence) just made a post about happy people. So maybe this escapade would qualify for “swimming against the current” and “being willing to take risks.” Hmm, or not—I don’t think that foolish attempts would qualify. (But I did sleep through the night for the first time in months).

    Next time, I’ll get the chair. Better “bored” than with high excitement in that way.

  18. Jane June 16, 2017 at 8:55 am #

    My husband and I are on a trip to the east coast. I was nervous because, as Jan just described, travel can be difficult. Our plans included two major league baseball games, museum tours, and airline flights. I was nervous because of my recent experience at Best Buy with people’s frustration. Could I do it?

    I decided to take my scooter. I was amazed. I drove my scooter right to the end of the jetway, collapsed it, and used my cane to get on the plane. People smiled at me and asked if I needed help. Upon arrival in Boston, my scooter was at the gate. BAM, great news.

    Boston’s Fenway? No problem. Bam, they took care of my scooter and wheeled me to our seats. I made the 10 steps up to our seats.

    Every activity has been fun and liberating because of my motorized “legs.” My scooter went over rough pavement just fine, and kids want a ride.

    So, my fear of travel is going away. It was mostly something I concocted.

    Tomorrow we will travel home, and I’m looking forward to it instead of dreading it. Bam. Good news.

  19. Ann June 16, 2017 at 1:03 pm #

    Congratulations Jane! You have described every trip I have taken with my scooter over the years. My second congratulation is on you recognizing it all and seeing the help that was offered with smiles. It makes other people happy to be of service when they can. I’ll bet your joy infected everyone you dealt with.

  20. Jane June 16, 2017 at 1:23 pm #

    Thanks, Ann.

  21. Jan June 16, 2017 at 5:30 pm #

    Ann, I think that is totally correct and with accurate insight and need to take note of all that personally.

    Both Ann and and Jane, please tell me again the model of scooters you have–I don’t think I can drill into past posts and do you think your choices are wiser. I feel the effects more today. This time I will take screenshots to save since I don’t think I can access prior helpful info.

  22. Jane June 16, 2017 at 6:52 pm #

    Hi Jan. I have a Triaxe, but I would look at the Smart Scoot because it is lighter. I had to remove the battery and carry it aboard, but it’s easy. Great tools.

  23. Jan June 16, 2017 at 8:44 pm #

    Will look; thanks much, Jane!

  24. Jane June 18, 2017 at 12:30 pm #

    The scooter allows me to save my energy for the things that matter to me. For example, I love to go to baseball games. I use my machine to go into the stadium. I check my machine with security. Then I have the energy to do the steps to get to my seat. It’s not a pretty picture on the steps. It’s more a matter of pulling my body up and sliding it down the steps. But, I can do it, and that’s all that matters.

  25. Jane June 18, 2017 at 12:35 pm #

    Jan, I never thought I could do the steps, but once I let go of my fear and gave myself permission to pull over and rest when the steps get tough or someone gets impatient behind me, it all came together for me. I had a lady ask me if I had MS one day at the ball park. I said I did. She has it, too, and was so happy to see someone pushing through the darned disease. She said it gave her hope.

  26. Jan June 19, 2017 at 3:54 pm #

    Hi Jane, I mentioned it to a kindly man dealing with the effects of polio at the grocery today when I was in the store scooter. He was using a permanent scooter and said that he, too, uses a smart-scoot when traveling; he also said his wife has a different perspective after having to use his once and felt marginalized and better understood the emotional challenges.

    I will say for me that others have really been very kind, but that I am likely my own worst enemy and that this whole topic makes me feel incredulous.

    There is a balance between admitting reality/working with it and pushing through (and I sport some arm and leg bruises to show for that, not too swift during bathing suit season!) As in, I’m really not 35, and I really do have MS? Geesh.

  27. Ann June 19, 2017 at 6:01 pm #

    Hi Jan,
    I have a scootie scooter. My husband bought it for me ten tears ago and it has been a blessing. It has arms but I use it without the arms. I use it in my home as well as when going somewhere to visit or travel. It packs into the trunk of a Nissan Sentra and the heaviest piece weighs about 40 lbs (about the weight of a bag of kitty litter).
    Hope this helps:) I also use it going to doctors visits.

  28. Jan June 20, 2017 at 7:40 am #

    Thank you Ann, and I do truly appreciate all the input: seems as if the last six months have been really nasty, and nastier by the week, so I will need to look into all of that for certain.

    Personally, I think it is high stress that has made this harder, and I do not see some of it letting up anytime soon, even with working on life somewhat differently. Compounded by the pain in my head and feet that are not letting up. I do take comfort in all of your kind replies, thank you very much.

  29. Ss June 20, 2017 at 9:51 pm #

    I am so thankful for all of your comments. Especially the “tips and tricks” (both physically and emotionally). And I love the story of courage (pushing beyond your thoughts when nervous about travelling), traveling and finding others are out there – everywhere – willing to lend a hand and who may actually be impacted and understand. Just by getting out – outside of yourself – you inspired others.

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