Living in our Heads

I have been hit by optic neuritis a handful of times in the last six years.  Decades of relative visual stability after a rocky start to my MS journey had lulled me into the silly assumption that I had won the battle and beaten back the neurological invader.

When the beast snuck back into my life, and I could not recognize shops and restaurants along a stretch of Broadway I knew well, my anxiety level elevated the top of my head.  My legs had turned to mush when I got off the bus one rainy day.  A shrink I knew in Boston offered advice I have not forgotten.  “Get out of your head,” she said on the phone.

That five-word mantra has stayed with me because it seems to have a wide application.  Those of us who can be but not do know the price tag on a limited life.  We sit, not stand, watching, not participating.  Our bodies can be stopped cold, but our imaginations are turned loose.  As with any prisoner, we dream of doing what we no longer can.  We read.  We talk.  And in our minds, we are freed and go where we choose.

Hyperbole?  Maybe.

James Thurber famously said, the hardest thing about being a writer is convincing your wife that when you are staring out the window, actually you are working.  Meredith is a body in motion, always doing something around the house.  I sit in the family room or outdoors in the courtyard.  I stare.  Sometimes she thinks I have vacated my body.  Truth is, I am entertaining wild ideas for books or articles, producing movies or plays, often writing in my head.  I read books, albeit slowly, or the Times, and I imagine.

I used to jog and play tennis or partake of a thousand other physical escapes.  That was so long ago, I really cannot remember who I was.  I worked in network television.  The joke back then was, if you can read a book or write a sentence, you are an intellectual.  I lived in that world and have to assume I was like the rest.

Albert Einstein, I am not.  But I do think a lot.

The downside of living in your head, of course, is that taking up residence between your ears can make you crazy.  I have been known to head down that road.  We become solitary souls, even if we do not live alone.  Our skulls can become echo chambers, our notions of our lives and the world self-reinforcing.  That can get scary.  Frequently we keep them to ourselves, and there is nobody to talk us down from the ledge.

Creative or crazy?  Maybe both.  Yin or yang? All in the eye of the beholder.

 

36 Responses to Living in our Heads

  1. Christopher June 6, 2014 at 10:55 am #

    The brain uses up 20% of the calories we consume. If we are constantly thinking then that is a huge amount of energy, and with MS that means those faulty connections are constantly being overworked without very long to rest. That also means always ‘running hot.’ When the brain is active, according to scientific researchers, one-third of the brain’s energy goes toward cell maintenance (basically neuronal health) and two-thirds is used for all other functions–or signal firing. When then brain is inactive, the amount of energy used for cell maintenance, or cell health, is bumped up to 50%. It’s something to be aware of.

    • Richard M. Cohen June 6, 2014 at 7:38 pm #

      Christopher-

      You write frequently. You are smarter than I. You make a wonderful contribution. Your point is well taken. But it does not change anything, I will live in my head, even if the lights dim. Such is my lot in life. Besides, I deprived myself of brain cells in the 60s and have no plans to stop. Don’t Bogart that joint.

      R.

      • Christopher June 6, 2014 at 9:55 pm #

        Oh, my gosh! LMAO! No sir… passing to the left, tout suite.

  2. Mary Jane June 6, 2014 at 11:15 am #

    “Living in your head.” Love that phrase. As my husband’s caregiver (diagnosed with PPMS in 2005, but still able to walk very slowly with cane, frequent falls, hands don’t work well, etc), I find myself living in my head often. But “living in my head” is consumed with worrying about what are we going to do when he can no longer get up the stairs to get into our house or out, cannot negotiate narrow hallways in a wheelchair, get in and out of bed, etc. Our daughter gets frustrated and says I am in denial, but I am stuck in this place of inertia where I can’t muster the courage and energy to figure it out. My husband, bless him for his good attitude, justs wants to stay here (as do I), says the stairs keeps him going; but I am the one who is going to have to deal with everything down the road; and being 67 yrs. old, change doesn’t come easily. I don’t voice this to him, as he has enough to deal with just trying to keep himself going physically and dealing with the emotional impact of slowing losing himself. Richard, I know your MS has progressed far beyond what his has; and your feelings about what you are going through are appreciated. Makes us feel not so alone. I love your blog, and it helps all of us out here. Wish we could help you!!

    • Richard M. Cohen June 7, 2014 at 8:52 am #

      Please do not worry about me. I am okay. Sounds as if you may have to make changes, painful as they seem. Sometimes you can’t go home again. Chane is hard. Someimes it is necessary. You both will figure it out.’

      Best,
      R.

    • Amy Corcoran-Hunt June 7, 2014 at 10:29 am #

      Mary Jane: this spring I finally sold my stairs and bought a one-floor place. I resisted of course, for much too long. Loved my house. But I have to say, the very last time the spouse had to help me up the stairs and help me down them, I was relieved beyond words. The last time. No more of that. I’m now looking at many, many ways my home environment can be made physically simpler for me. I used to think of this as “giving up.” But it’s not. Anyway, that’s my experience. You will figure yours out. I can promise you life is better on the other side.

  3. Craig June 6, 2014 at 2:12 pm #

    This MS thing has a very crafty and mean symptom that I have to deal with now – a lot! I called it “Hermitism,” as it does seem to have made me less social and more of a creature of habit, a hermit who does not stray far from what is safe and less painful. Just sitting at my desk here at work, or at home in my favorite chair and ottoman, I can think and escape sore muscles and bumping into things. Great, but I miss shopping (Costco used to be such fun!) and going to movies and dinners and my treadmill and lifecycle and random trips to wherever. Far less difficult and painful is cocooning and not hurting or getting hurt. Richard, I totally get Living In My Head – and the need to take a vacation from it. Another great one on your blog! Thanks for helping this Apprentice advance….

    • Richard M. Cohen June 6, 2014 at 7:45 pm #

      Don’t worry about me. I am a lucky guy. I survive and flourish. Please take care of your family and yourself. The rest will take care of itself.

      Best,
      R.

    • MB June 6, 2014 at 8:27 pm #

      I miss all of those things, too. Add to it, doing those things unaccompanied. I miss the freedom that goes with total independence.

    • Richard M. Cohen June 7, 2014 at 8:56 am #

      Craig-

      Sadly, MS is all about what we no longer can do. You will figure it out.

      Best,
      R.

  4. jeanne June 6, 2014 at 8:00 pm #

    The eye of the beholder has optic neuritis again! Is that inappropriate? I deal with my MS in a very strange way. I have to laugh or I’ll lose it. My granddaughter has a DR. appt. tomorrow to discuss her abnormal MRI and to chose a neurologist. She’s only 26. At least I was 39 . I didn’t know other family members could have it until I read “Blindsided” last week
    Scared,
    Jeanne(Grandma Hicks)

    • Richard M. Cohen June 7, 2014 at 9:03 am #

      Grandma-

      Please assume nothing until there is a diagnosis. This is a new era of this disease. Things are moving quickly on the research front. Embrace her and go with it.

      Peace,
      R.

      • jeanne June 16, 2014 at 8:05 pm #

        My granddaughter has one small lesion “consistent with” MS. She said it was my fault and laughed. She told me she was OK with it because she watched me with MS and I did fine.She said she was just grateful it wasn’t ALS. I sure love that kid!

        Grandma H

  5. Kate Aquilino June 6, 2014 at 10:15 pm #

    My mother told me long ago there is a fine line between genius and crazy.

    Yup. I ride that continuum, too.

    Grateful for all those lively thoughts and the ability to think them. No one is promised tomorrow.

    Sweet dreams to all
    Kate

    • Richard M. Cohen June 7, 2014 at 9:03 am #

      Well said.

      R.

  6. Betty Moody June 7, 2014 at 4:01 pm #

    I’ve been called a lot of things, and a Pollyanna is certainly one. MS aside, I’ve also been called demanding, tough, material, cynical, selfish; oh, and generous, smart, mindful, tender, compassionate. The list goes on; some good, some not so good. It depends who you’re asking, but they all add up to me, and I suspect the same may be true for many of you. There was a time I would have eschewed the negative qualities, but lately I kind of like them. I try to use them wisely, and when I do they serve me well. This might not always be the case.

    Pollyanna lives inside my head with me. Just this morning, a perfect June mountain day, she (we) were inspired to do just a little gardening. It was early, it was cool, and the old golf cart was ready with hand tools, a kneeling bench and a phone for emergencies. How bad could it be?

    Getting outside was hard enough, but tough me was determined. One step at a time. Walls to handrails to ski poles, and lifting my right leg up and over things when I had to. Polly decided to use this time in nature for some good stretches. That worked for a while until the sun came around the house, muscles gave out, and getting to a seat was not possible.

    After the long winter grass never smelled sweeter than when I was face down in it, spitting out a mouthful, and wondering how to get up. Important to note this was a private moment. I was alone, and I was not hurt. In these situations it’s the Polly in me (comfortable with myself) who can laugh and hoist myself up and crawl back to base. It’s a very different conversation in my head when I am in public with the world buzzing around me, and I am nervous, weak, self-conscious and resentful. Or, other times even in my home when I am literally feeling (and missing) the footsteps and activities that others enjoy as easily as breathing. This is when I want to hide away, and cry and scream and blame. Not attractive, but I’ll use it if I need it. Restraint is open for further examination.

    So at this juncture I am grateful for the company inside my head. In my darkest moments I ponder what will happen if I’m not able to think, and challenge, plan and play with my thoughts and emotions? These are the times that Polly is quick to save me with facts and figures, hopes and dreams and ideas, and above all the reassurance that I am vital, and loved.

    It’s a long, tough journey, and I appreciate this blog so much because it’s a place to be myself with others who know, or will get to know the MS trails well. Whether new to the highway, commuting or passing on a double yellow line we are fortunate to be sharing the road.

    • Richard June 7, 2014 at 4:13 pm #

      What do others have to say here?

    • Geof June 10, 2014 at 8:09 am #

      Betty,
      If you worry about losing the ability to think, I do too. I think of the book Flowers for Algernon about a challenged young man and a mouse who are given a treatment which makes them smart. In the end, the mouse dies and the treatment wears off. His memories of being smart are all that remains as he no longer even understands what he wrote. It’s a charming book despite how bleak this summary sounds.

      • Betty June 10, 2014 at 2:43 pm #

        Geof,
        I will read this. Thank you.

  7. Kate Aquilino June 7, 2014 at 4:58 pm #

    Terrific! You need to write a book. Tell the world. They need to know.

    And share here.

  8. MB June 7, 2014 at 7:02 pm #

    If I recall correctly, Pollyanna was temorarily disabled. I wonder if she would have been all sunshine and roses if she were unable to walk year after year after year and then started to lose the use of her arm, and then her eyes.

    I truly believe that depending on your level of disability, it gets increasingly more difficult to find Polly residing in your head. I always feel guilty when my attitude heads south. I consider myself to be tough, too, but if I fell in the grass, I would not be able to crawl, let alone get up because my leg and arm don’t work. Period.

    So then I read a comment about being tough and havinfg the resolve to pull myself up, and I chastize myself for being weak. It’s the same way I feel when I read about someone with MS running a marathon because of her mental resolve not to let the disease “win”. I wish it were that simple, then I could legitimately blame myself if I can’t do something instead of chalking it up to an unfortiunate neural misfire that eroded a portion of my myelin sheath.

    There are many inspirational people out there who inspire those who have their same level of disability or less. But when someone moves a little bit farther to the right on the disability spectrum those inspirations are replaced by others with the same level of disability or worse.

    This is a complicated disease because of the unpredictable nature of the progression. And after your post, Betty, I see that not only do we have the attitudes of the chronically healthy to contend with, but also people who have been diagnosed with the same disease who are perceived to be in the same boat. Little do folks know that the the type of boat ranges from a row boat to an oceanliner.

    • Betty Moody June 8, 2014 at 8:12 am #

      MB
      20 years for me and SPMS. My boat is my boat and it is taking on water fast. More days than not lately there is no land in sight for me. Sink or swim we all cope differently. I’m happy to be here among friends sharing stories and perspectives at all levels. I wish only the best for all of us.

    • Richard June 8, 2014 at 4:12 pm #

      Please don’t measure yourself against others. We all are at different stages. I used to tear down the streets of Beirut, outrunning the PLO, kids with guns. Now I could not escape theior baby sisters. We used to do what we no longer dare try.

      Sometimes I worry that I am encouraging yo guys to drive yourselves crazy.

      R.

      • Betty June 9, 2014 at 9:50 am #

        Just this morning I was thinking about all of the things I used to do.
        Then, the me inside my head said, “yeah, but think about all of the things you’ve done.” It worked in the moment. (smile)

  9. Kelsi June 7, 2014 at 11:55 pm #

    How does one “get out of their head?” I love there constantly. A safe place, a coping mechanism. Dreams and imagination run wild. All I do is dream.

    Like you, Richard, I have no plans any time soon to stop dreaming. Keep on keepin’ on.

    All the best,

    Kelsi

    • Richard June 8, 2014 at 4:13 pm #

      Kelsi-

      I’m with you.

      R.

  10. Linda Lazarus June 8, 2014 at 8:27 am #

    “As with any prisoner, we dream of doing what we no longer can. We read. We talk. And in our minds, we are freed and go where we choose”

    Wasn’t that idea the battle cry of Sisyphus who got the best of the gods by finding freedom in that one ability still left , the ability to freely think? Sometimes that Sisyphus lives in my thoughts and we are quite good friends. And he never tells me that I look “so well”!

    • Richard June 8, 2014 at 4:17 pm #

      Maybe you are not a prisoner. Don’t put up your own walls. And you are better looking than Sisyphus, but he looks so good.

      R.

  11. Sarah Kane June 8, 2014 at 4:49 pm #

    HI Richard,

    I’m new to your blog and have been reading and agreeing with every word that comes out of that familiar mind of yours. I don’t agree with anyone who thinks you are negative. Like I tell some of the ladies who work on me at PT…just ten minutes of this disease is all I wish for you to experience (which is nicer than the lady who wishes an hour on her husband!).

    Every single MS symptom, all at once, for ten minutes. That’s all….then maybe you’ll get an idea of what we go through every single day. We can’t make this stuff up. It’s one frustration after another. Day in and day out. We who have it, all go through its annoyances.

    My mom thinks its cruel for me to wish this disease on anyone, and it is, but I guess she didn’t hear the ten minute part. But, when healthy folks are rude and inconsiderate of our daily struggles, without even trying to learn the first thing about the disease, it keeps me fuming.

    So, no – I don’t think you’re negative in the least. Just worn out, and tired of struggling with the cruelty of the disease. You’re just trying to make people understand. It’s painfully obvious to me. But then again, people have a hard time understanding something they just don’t have experience with.

    I’ve lived with MS for four, very difficult years now, even though I think I’ve had it much longer. I’ve dealt with several symptoms in the past but always shrugged them off.

    And being a single mom has robbed both myself and my son of valuable time that we used to use to do outdoor activities – robbing him of part of his childhood, and me from being apart of his childhood during the years I was most sick. I’m a bit more stable now, but have the same difficulties as you. Legs crumpling with no warning, GI problems, balancing acts never before seen on t.v., falling down stairs, breaking the leg after falling, spinal headache for a week after a spinal tap, and the list goes on and on.

    I used to be extremely active like you before being diagnosed. I swam, walked everywhere, hiked, biked, sang and danced in high school – ages ago.
    I tell my son of the person I used to be. He remembers many things we used to do together before my diagnosis (thank goodness).

    What a disappointment I feel to him. He’s only twelve and has to help me with most things I can’t do anymore. What a nice life for him to have to take care of mom at such an early age. I never imagined him to be my nurse-maid, ever, least of all at age twelve.

    Well, this is my new life, right? I have to make the most of it, as sucky as it is most days. Thank God for my son, my parents, and family.

    And thanks for making this blog. I feel completely at home here among all of you. Also, a big thanks to my neurologists’ nurse for pointing me here. Thanks Amber!

    I hope you’re having an Ok day today, Richard. I know good days are few and far between with MS. Take care.

    • Richard June 8, 2014 at 8:30 pm #

      I will bet you are not a disappointment, Cut yourself some slack.

      Best,
      R.

      • Sarah Kane June 9, 2014 at 8:33 pm #

        I’m only a disappointment in my minds eye. My son understands more than I give him credit for. I’ve always been there for him and don’t plan on straying from that, ever. Thank you for your encouragement 🙂

        I always need it – best to you too,
        Sarah

  12. David June 9, 2014 at 10:49 am #

    Get out of your head,great advice and so many of us should do it.Like you Richard, i was so active once upon a time.A friend told me years ago to never compare myself to what I was before,it brings out more anxiety.Its not very funny but MS is the gift that keeps on taking.Its so easy to forget who we once were.Simple physical ability so precious and now so diminished.
    I read more now and I watch TV more now too.I remember quite a few years back and I went to chiropractor as one of my many alternative medicine experiments.He gave me quite a shock when he said ” What do you enjoy doing most?”I didn’t have an answer and it troubled me so much. I liked my job but that was gone now. Of course I knew I liked so many things, but still no answer coming from my mouth.
    Finally he took a chance and answered for me.I bet you loved to walk, didn’t you?Absolutely, that was it, I want to walk.It was such a huge part of my life and I must have blocked it out.
    It seems like I have heard so many times on TV lately when simple advice is given about weight control or basic health regimes. The person giving advice says
    just walk more, anyone can do that.Thats when I get jealous of the chronically healthy.My wife always puts it in perspective when she reminds me that everyone has problems , ours is just more visible.I am grateful for my sight, I know I am lucky.
    I grow so frustrated because I sit and watch rather than stand and participate too.
    I would never wish this horrible disease on anyone else but it would be nice if all were well and seated too.
    Your blog is a great sounding board.I can complain to people that understand me,thanks.
    I wish better health to all!

    • Richard June 9, 2014 at 8:10 pm #

      David-

      Please do not forget you are running a marathon. ou will keep learning and evolve. Be patient. Wisdom will come.

      Peace,

      R.

  13. Kate Aquilino June 9, 2014 at 2:48 pm #

    There is no old life to go back to. The river of life keeps flowing. Our gift is the present.

    • Richard June 9, 2014 at 8:12 pm #

      Kate-

      None of us can go home again.

      Best,
      R.

  14. Lynne June 19, 2014 at 2:24 pm #

    I read a sign on facebook the other day, it was a man in the “thinkers” position and the caption read “never believe what your brain says”. Thought it was spot on!!!