Chill? No, Thanks.

Some of you and others in my life have counseled me to chill out when I speak or write about the various and predictable losses of function. Some have pointed out that tension only aggravates problems and works against us. No doubt that is true. Still, my old and probably tired mantra to fight on keeps breaking into my head. That means no let up when reacting to cognitive problems.
I had a professor in graduate school, a combative former President of CBS News and Murrow’s old partner, named Fred W. Friendly. Fred was a force to be reckoned with. He used to preach “the need to have a fire in your belly.” That came to mean the willingness to take on challenges with passion and commitment. That sums up how I tried to approach my work, though with a broader application.
I realize not one of us is going to beat an incurable illness. But I take satisfaction in railing at the dying of the light. For me, chilling is going limp, buying into passivity. Yes. Tension and aggravation can cause their own problems, but engaging and fighting the good fight are energizing. Eric Kandel, who won a 2000 Nobel for his work on memory, was the person who explained to me the, use it or lose it approach to sharpening the mind. He pointed out that to a large extent; the healthy are in control of their brains.
I am not a healthy people, but that does not mean I plan to cede control voluntarily. Fighting the good fight creates a positive energy that carries its own benefits. They may be purely psychological, but I will take what I can get. Fighting MS and a myriad of other conditions is in large part a mind game, and I plan to play hard.

38 Responses to Chill? No, Thanks.

  1. MB May 8, 2015 at 10:13 am #

    Agree a million percent!!! I engage in cognitive calisthenics for more than half of my day and love the fact that in the evening it’s my brain that’s tired and signals it’s time for bed.

    Everyone has their own way of dealing with this beast so I’m not going to claim one was is better for everyone than another, but for me, “chill aversion” keeps me in control and somewhat sane.

    I quoted Einstein in your last post, but the whacky scientist kind of corners the market on knowing something about thinking. He said, “The person that reads too much and uses his brain too little will fall into habits of lazy thinking”

    No time for laziness since we have a disease to keep at bay.

    • rm cohen May 8, 2015 at 5:00 pm #

      Right on.


  2. DianeT May 8, 2015 at 10:15 am #

    Richard, I think this brings us back to the concept of Hope. I just finished reading “Daring Greatly” by Brené Brown who says she was shocked when she came across C. R. Snyder’s research on hope. She had been under the illusion that hope was a warm fuzzy feeling. According to Snyder, who dedicated his career to studying this topic, hope isn’t an emotion; it’s a way of thinking or a cognitive process. Emotions play a supporting role, but hope is really a thought process made up of a combination of setting goals, having the tenacity and perseverance to pursue them, and believing in our own abilities. In other words, hope is “Plan B” when “Plan A” has fallen apart. The other point I found interesting was that Snyder claims that hope is learned, and that children most often learn hope from their parents! Children with high levels of hopefulness have experience with adversity. They’ve been given the opportunity to struggle and in doing so they learn how to believe in themselves. So we should all keep up the good fight and play hard – for our children and ourselves.

    • Betty May 9, 2015 at 7:27 pm #

      I am hopeful, and this helps me understand why. Thankful for my roots.

  3. michael May 8, 2015 at 10:47 am #

    Hell yeah!

  4. Joan Z May 8, 2015 at 12:50 pm #

    I find the fight ebbs & flows. Some days I simply don’t have the energy to fight, other days I’m all piss & vinegar. At my core however, I just don’t know how to stop trying.

    As for people who tell you to chill, really? Those are the same people who say, “smile”. Like anyone ever relaxed just because someone else demanded it of them. I just want to respond with “oh, why didn’t I think of that?” Sheesh!

    • May 9, 2015 at 5:45 am #

      Yet some say it on this blog.


  5. Dale May 8, 2015 at 5:43 pm #

    “I don’t know how my story will end, but nowhere in the text will it read…I gave up”

  6. Louise May 8, 2015 at 5:45 pm #

    I said don’t stress but I did not mean chill! I know that at least for me if I worry that something is happening it gets worse. Once shortly after I was “outed” in my former small town, I saw a group of women talking on the street and looking at me as I walked. My legs starting shaking and I started swerving. As soon as I got away – I was fine again. And saying things along the lines of “don’t assume the worst” which is what I meant,and I assume others too, is not like saying smile to someone who is sad. Now I find myself wondering what would have been an acceptable response to that blog post?

    • May 10, 2015 at 6:44 am #

      We have to stop letting what we think others are seeing in us. There are mo re productive things to think about.


      • MB May 10, 2015 at 10:32 am #

        Physical, mental, and social hurdles are tough for me to juggle, but I’m doing a fairly good job of not projecting my angst on to others. The bigger challenge is to stop letting what I think others see when they look at me occupy my thoughts. Tough to do when I think they’re seeing the same broken person that I see when I look in the mirror.

        Ok. Regroup. It’s Mother’s Day and I have some presents to open. 🙂

  7. Jan May 8, 2015 at 6:19 pm #

    Oh my, Richard, feel free to grab a hunk of that chilled ice and toss it at me… And then please recall my second sentence, “And then get right back doing that which you can.” Because I do think it’s important to press on, to have a passion and commitment for a purpose—and this is a good one. Frankly, you ARE that good at communicating about it, I will say in a “friendly” way.

    Truly, I recall responding only in context. (And, “note to self,” a good example of why “I statements” work better than “advice-type”).

    Because in my context I was merely thinking of giving myself permission of sorts to enjoy life in the times that I can, chilling briefly to enjoy a breath, a flower, a song… a thought that doesn’t involve MS (sadly infrequent). But still no white flags of defeat. Still fighting the good fight. I agree with that, and I play hard, too. (It’s getting harder each year, but I remain in the ring with my boxing gloves on!)

    • May 10, 2015 at 6:46 am #

      And fight on.


  8. Ann May 8, 2015 at 10:49 pm #

    There are seven stages of grief. I remain firmly planted in the anger stage. I’m not moving toward acceptance EVER. I do not accept my situation , and I never will. I find that anger is a good emotion to stay in fight mode, it fuels me. I too will not ‘chill’, and ‘accept’. I’m angry , and I fully intend to stay that way. It keeps me going.

    • May 10, 2015 at 6:48 am #

      I am with you on anger.


  9. Nik May 9, 2015 at 9:07 pm #

    Oh no! So if the fight goes on and on and on and I stay in denial and angry like I am (only 10 months in) wont I drive everyone around me away? I already feel like my anger and frustration are taking a toll on my husband and 13 yr old son.
    I’m so new to this, but I am finding that I feel like no one understands me. That’s why I come here. To feel like others understand.
    I am seeing everyone deals with it differently. That’s ok. I read through and take the parts I can relate to. I didn’t see where someone said to chill, but that must have hit a nerve. At the moment, everything people seem to say to me hits a nerve. But in the end, I suppose that is only going to hurt ME.
    So some don’t want to accept this horrible beast. I get that. But I fear if I don’t accept, I’m setting myself up for a life of more misery than I am already in for.

    • May 10, 2015 at 6:51 am #

      I am more than forty years away. I think anger is app rop riate as long as you NEVER turn on anyone in your life. Anger at the situation must not be foisted on another.


      • Nik May 10, 2015 at 9:27 am #

        Good advice. I will do my best to remember that.

    • michael May 10, 2015 at 11:23 am #

      The more angry and upset the worse the symptoms. Accepting today’s limitations in no way equates defeat. Living life on life’s terms isn’t a tired old cliche, it is a vital component of what we call our tool box. Inside the toolbox is a variety of things, a few books, vitamin b-12, alpha lipolic acid; kale, neurological stimulation equipment, chill, hope, resentment, rage and despair. Different days call for different tools. The tools we choose to fight the disease has a direct correlation with our enjoyment of the day we are in.

      Finding contentment while fighting the battle of and for our lives is the most challenging thing either of us has ever done, and we have both done a lot. (Cheryl has been diagnosed with progressive MS, I stand by her)

  10. Jan May 10, 2015 at 4:19 pm #

    Michael, I myself appreciate your insight–it helps me to better understand my husband, who is in this nasty boxing ring with me by osmosis–though far from effortless for both. We, too, have also been though much, though this likely takes the cake. (Or should I say kate, more of what I eat these days!)

  11. Jan May 10, 2015 at 4:20 pm #

    oops… kale, not kate (messed up my punch line!)

    • michael May 12, 2015 at 4:30 pm #

      Thanks Jan, as Richard said, this is a lonely business, even well rooted couples get lost in their own worlds.

      • Jan May 13, 2015 at 1:17 am #

        Yes, Michael–too often, not easy.

  12. Elizabeth May 11, 2015 at 11:05 am #

    I took out my anger on my yard on Saturday. I knocked myself in the jaw with the big pruning shears while I was trying to cut a gnarly bush down. I hurt and stumbled but I refused to stop. Well my yard got me back. I can barely raise my arms. I’m covered in bruises and scrapes. I spent yesterday in bed with a migraine. I’m not sure who won that battle. But I have to admit at the time it felt good to physically rid myself of my frustration. Anger can be a useful tool but I am at a point that I would like to balance it with something more tame like meditation or something. Does anyone else feel like your autonomic system is always on? (Fight or flight). Is that an MS thing or am I just always conflicted? I can’t relax.

  13. Lisa PD May 12, 2015 at 8:17 am #

    I read the posting daily and have learned a lot. I have had MS for 10 years now. With regards to Elizabeth’s comment about her autonomic system always being on that is exactly how I feel. It is exhausting and sends my Bp skyrocketing. Is this due to MS? I am seeing my doctor on Thursday to see what can be done about this. I know my cortisol levels are high too.

    This disease is so frustrating as I never know if my ailments are related to MS or are other issues.

    Looking forward to any comments.

    • May 12, 2015 at 8:38 am #

      I think autoimmune diseases and other neurodegenerative illnesses have a lot in common. We can feel very alone. Sickness in many ways is a solitary experienmce. It can be lonely.


    • Jan May 13, 2015 at 1:13 am #

      Hi Lisa, I well understand the stress and cortisol connections — and see the terms a fair amount in general health-type articles, too. My “fight-or-flight” can be related to MS but is likely related more to how I live and relate in general.

      For me personally, as I’ve mentioned before, some exercise (swimming and stretching), “music therapy” (what I call singing to fun tunes while on errands or cooking) lifts my spirits, likely lowers cortisol, as do reading and doing something to help another.

      Also at 10 years in this month, I have decided that I am my own PCP (primary care provider)–and mostly have been all along.

      A kindly and informed eye doctor I mentioned that to last week understood, even saying that the term “PCP” should be replaced with “SCP” (secondary care provider): medical know-how to supplement my own PCP management.

      I did not have an eye exam for 3 years and thought it time to. (Will do yearly now. especially since he discovered the reason for nausea was from some double-vision, not readily apparent to me as such).

      Something about “the will” (or the direction the wind happens to be blowing–with MS, it’s unclear): Was re-tested after about 8 days: it’s still there, but cut in half. Just enough to safely put up the gloves and box in the ring–driving solo in a two-car caravan 3 1/2 hours to pick up my son from college today. The sometimes loud music and singing along did wonders (safely, even on highways and in rain).

      So, while this PCP here may suspect MS for any given issue, I just try to isolate the variables and address specific issues as they come. Likely MS-related, but not always. So I just take stuff as it comes. Many times, my mood and outlook can trump issues of humidity, outside stress–so I control that which I am able. Elizabeth happened to mention the word, “balance.” Only I am truly able to define my own stress and balance.

  14. Ann May 12, 2015 at 1:38 pm #

    Actually, 98 percent of my anger and rage goes unexpressed. Suppressed anger=depression. No easy answers, that’s for sure.

  15. yvonne May 12, 2015 at 11:41 pm #

    Lisa get ready for the ride. I don’t think any doctor really knows if symptoms are MS related. As soon as I check that box my doctor blames it on MS, hearing,swallowing,headaches,vision,peeing,crapping and the list goes on. Be vigilante and always check to make sure it isn’t something else. We are our best resource as many doctors are overwhelmed by the complexities of this dogged disease. This blog is very helpful for that reason. Many have already been there and discovered what we are trying to understand. I have found many helpful suggestions here when my symptoms manifest. A blog of opinions and experience of the chronically ill and occasionally optimistic 🙂

  16. Dale May 12, 2015 at 11:42 pm #

    Well this past weekend I finally snapped. Culmination of 20 years of taking the high road taking care of in-laws, with three kids and carreer while the in law family went merrily on their way.
    Initial MS symptoms got me labeled a hypochondriac. Now am close to becoming trapped in my home, yet I had to buy the new family car that I can’t safely drive, and can’t even get a railing for the outside steps. I just got so tired of feeling used I simply snapped, but it did reflect resentment built up over many years.
    I speak to no one about these things, however am at the point of focusing on how I could ever afford another car this time with hand controls as I see the future of my legs. I realized one of the ways I survived was getting out of this house.

  17. Lisa PD May 13, 2015 at 7:25 am #

    Thank you for you advice. I will go to my doctor on Thursday armed with knowledge as you are 100% correct in saying that we are our own PCP. My husband and I are both nurses so we have always been advocates for ourselves. Jan- Thank you for your advice. I walk every morning for 30 min and do mindful meditation but I need to do more. I like your singing idea although my family won”t appreciate it!!!!

    We have a long weekend coming up in Canada so I will try to relax and see if I can reduce my cortisol levels.

    Best wishes to everyone.


  18. Jan May 13, 2015 at 8:52 am #

    Lisa, I logged on quickly this morning and will reply… no, your family likely won’t appreciate listening as much as you will enjoy the singing. (Mine certainly doesn’t, which is why that solo car ride was actually rather fun!)

    And I can’t walk around the block with anyone, even alone (but have hope someday… started to do some daily jumping jacks to work on leg strength–it starkly shows leg atrophy reality, actually).

    Canada is beautiful, especially for breathing and relaxing… I was north of Toronto last fall for a mini-reunion of former skating friends. Am still smiling at the memories of kayaking on a lake. (Can’t walk too far and was helped into the boat, but my arms work. Oh, what a joy that was–and a reminder to myself that I can do what I can do and still smile). My friend’s wife is a physio (called “PT” in the States), and she wisely recommended I not get caught up in the moment and try to water ski–that I’ve only done twice in my life, btw. (Wise of her).

    May your weekend be restful, joyful, and wonderful, Lisa. Your walking and meditation is inspiring me — thanks!

  19. Dale May 16, 2015 at 11:46 pm #

    Praying for you Richard…. hope the steroids work.

  20. Rosanne May 18, 2015 at 12:22 am #

    Why do I find myself saying “I’m sorry” to people because they have no patience? I went shopping today, cane in cart, it was hard but I did it slowly – evidently not fast enough for those that huffed and puffed to get around me. Am I destined to shop early in the AM or late at night……ugh! I guess saying I’m sorry when I know someone is not patient is better than saying: “and what’s your problem?”. OK, I’m finished. 🙂

  21. MB May 19, 2015 at 7:09 am #

    Rosanne, we probably say that because someone else is being inconvenienced by this disease. With that said, there’s no excuse for rudeness. Chalk it up to someone being raised poorly and move on to aisle six.

  22. Rosanne May 20, 2015 at 6:44 pm #

    MB – thank you for your reply. I forgot to add to my post that while trying to load my groceries in the back of the car, my foot went the wrong way and I stumbled a bit – said out loud: “Oops!, that didn’t work”. I looked up and there was a women passing right by me using a footed cane and her legs were like rubber. She looked at me, smiled and, I assume, answered my statement with: “Tell me about it!!!”. We laughed and wished each other a good day. I got in the car and thought she was put in my path for a reason – forget about the grumps in WM. Here we were, stumbling out way through life and laughing about it in the WM parking lot. Life is good!

  23. Dale May 22, 2015 at 12:34 am #

    The Cape will bring you peace and health hopefull Richard…. there are whales in Cape Cod Bay and the tourists aren’t in full force yet. Figawi weekend and places starting to open. Hope you both get to enjoy it. And yes, the snow is finally gone.

  24. michael May 24, 2015 at 12:22 pm #

    I wrote this after my last visit here. Preaching to the choir here, I know, but hopefully the article will keep somebody on their feet.