Private Battles

This from Richatk8: “thank you Richard and all for sharing your thoughts and feelings. You are helping me begin to understand my wife’s journey. The more I know about the private battles you all face, the better I will be as a partner.” A nice thought. I believe it is the private battles that define the disease experience for the many. We all know about numbness. We push our way through foot drop and debilitating fatigue. Those are universal, sad realities.
The private battles are out of sight. The loss of independence, diminished self- confidence and shattered self-esteem are all too familiar. Making it in an unkind market place and finding our footing in the world of relationships take their toll. Such are the unseen skirmishes, the private battles with chronic conditions. But we cannot go public because the chronically healthy do not want to hear or know. Our popular culture jettisons us out into the street. Nameless others are not mean spirited or vindictive. They simply have no time for us. That is a fact of life in 2015. We are on our own. Surprised?
Yes, our private battles are large. In the end, they will define us, at least to ourselves. We are the only ones paying attention, anyway, the sum total of who cares. We are our own keepers. Do not look to government for help or by extension, to friends and neighbors. Illness is a solitary experience. There is nothing others can do, anyway. There are no bad guys here. No one is gunning for us. Private battles must be fought privately. Any war is with our own spirits and resilience. Those are gifts to ourselves.

55 Responses to Private Battles

  1. Joan Z March 28, 2015 at 1:40 pm #

    Well put. I’ve heard that you don’t get it until you get it, and I try to remember that when my caring, empathetic, generous husband seems to have a momen that makes me think/say/growl, “after all this time with a front row seat to my struggles, how do you NOT get this?” I also think if understanding really means anyone would have to get it, then I’m glad he doesn’t. I wouldn’t wish disability on anyone just so they’d really understand me.

    • Linda March 28, 2015 at 2:43 pm #

      Thank you Richard, for this topic. It is so relevant to how I felt when I awoke this morning.
      At age 51, iI was forced to retire from a 20 year career of weather reporting. The reason I gave for leaving was the cognitive difficulties and fatigue of MS. Okay, I’ll fess up and admit that high definition was in the works. That wouldn’t be a pretty sight!
      Now, at 63, (after pulling my weight in a newsroom, raising a child and keeping up on the domestic chores), I feel lost, numb, in pain, and frustrated.
      It is a lonely journey. No, I’m not surprised that we are alone. I’m finally coming to terms with this private battle. I still am puzzled by the seemingly lack of curiosity, empathy or support by many of my loved ones. If I let that bother me, I do it at my own peril. Expectations serve no purpose. Truthfully, why would I ever expect them to possibly come close to feeling what I feel!
      I’m an explainer, but, if nobody ask, why explain.
      It is a private battle.

    • Richard M. Cohen March 28, 2015 at 3:26 pm #

      Nobodyt around us fully gets it, and I think that is OK. If they are there for us, what they do not get is alright. They are stressed, too.

      R.

    • Richard M. Cohen March 28, 2015 at 3:30 pm #

      Nobodyt around us fully gets it, and I think that is OK. If they are there for us, what they do not get is alright. They are stressed, too. I worry for them.

      R.

  2. michael March 28, 2015 at 2:29 pm #

    Hello Richard, I believe that was my comment. As for the private battles you could not be more right.I think you are including the partners of those affected by chronic disease. It truly is a lonely road for us as well. People drop our of our lives pretty quickly after one too many invite declines, don’t understand why we are more comfortable hosting and find it easier to avoid us than engage and accommodate our wishes. It’s not that we don’t want to be more social, rather, it’s just too hard.

    • Linda March 28, 2015 at 3:05 pm #

      Michael, I admire your desire to be a better partner and understand how those of us with chronic disease feel.
      My husband has read some of the topics.
      II don’t believe that our partners who live with us day to day get the credit they deserve. You have your own private battles.
      This avenue of communication that Has been created gives invaluable insight to all of us and our partners.

    • Richard M. Cohen March 28, 2015 at 3:28 pm #

      I agree.

      R.

      • Linda March 28, 2015 at 3:46 pm #

        Here’s something my husband says. It always makes me laugh. He says, “I’m your shit giver, because I give a shit”

  3. Linda March 28, 2015 at 9:24 pm #

    A quandary for me is: how much do I share with my family and friends. I sometimes feel that unless I tell them of my discomfort,(which can change from moment to moment or day to day) how are they to know what my needs or limitations are?
    I guess we pick and choose our private battles.

    • Richard M. Cohen March 29, 2015 at 8:30 pm #

      Right. I go eay. Don’t want them to sweat the small stuff.

      R.

  4. Yvonne March 28, 2015 at 10:56 pm #

    As a single women with MS, private battles are the definition of my existence. I started it with someone but as relationships go sometimes ago we split. The battle today as the disease continues to be more visible than 30 years ago is what I choose to share with people and what I battle privately. Everyone is not ready to be a partner in disease. those of you who have a partner are privileged and burdened with how much to share.

    • MB March 29, 2015 at 3:56 pm #

      “Everyone is not ready to be a partner in disease.” Great line.

    • Richard M. Cohen March 29, 2015 at 8:31 pm #

      All of us have to feel our way along.

      R.

  5. michael March 29, 2015 at 8:31 am #

    I wrote this in 2011. My wife told me I might be getting it after she read it.

    Soft, muffled sobs,

    private sounds of desperation,

    for how long I don’t know,

    I was asleep.

    Pain there,

    pain and sorrow,

    kept hidden,

    allowed escape in solitude

    lest the rest worry.

    My eyes stay closed,

    my body still,

    my mind blazing

    and hot

    ready to explode,

    and free the river of tears to join hers,

    but I’m afraid.

    Afraid they will never stop.

     

    Under covers and still; we’re equal,

    our thoughts follow similar paths,

    I’m by her side,

    not twenty feet ahead,

    impatient, waiting.

    Always waiting.

    our breathing synchronised,

    our hopes and dreams similar,

    but oh so different.

     

    I dream of the day we walk together,

    through the sand,

    toward the sea,

    soft, gentle breeze

    taking some of the sting

    from the sun’s blistering rays

    as the salt air draws us closer

    to the ocean,

    the sand burning our feet,

    hopping,

    running perhaps,

    toward the soothing water,

    where waves crash on our legs,

    the earth moves under our soles,

    taking our dissapointment with the grains that tickle our toes

    out to the ocean

    where it dissapears,

    drowned in a sea of similar troubles,

    and cleansed,

    and brought back,

    each wave

    taking a piece of the disease with it,

    and dumping it

    where it sinks to the bottom,

    and dies.

     

    She just wants to walk again,

    throw her cane into the ocean,

    somebody to share her tears,

    and hold her,

    and not pretend they are asleep.

    • Joan Z March 29, 2015 at 3:00 pm #

      I have to also add thanks. That was beautiful, and brave too.

  6. Grandma March 29, 2015 at 2:08 pm #

    Thank you, Michael

    • michael March 29, 2015 at 2:19 pm #

      You are very welcome Grandma, I’ve been a little worried that this wasn’t going to be welcome here, kind of felt like I was hijacking Richards page with my words. I know I get a little territorial when it comes to things this important.

      • MB March 29, 2015 at 2:46 pm #

        I had to come back to your poem a few times because the sentiment really hit home. Sometimes you just can’t hide the sadness no matter how hard you try.

        As for pretending to be asleep—that might be welcomed. Sometimes the tears have to be shed purely for the grief of the loss. When someone else enters who is loved and is trying to be understanding and supportive, the personal grief is joined by the sadness and sometimes guilt the illness is causing others. Such a delicate balance between sharing and burdening.

        And by the way, you do get it, Michael.

  7. Linda March 29, 2015 at 5:20 pm #

    Michael,
    What an inspiration you are. As far as I’m concerned, share all the space that you feel like sharing.
    I just cried alone.
    My husband can relate to you, as I can relate to your wife. Your posts can give me valuable insight regarding how my husband feels.
    We can see the loss in each other’s eyes sometimes. Today is one of those days.

    • michael March 30, 2015 at 10:10 am #

      Thank you for nice comments. It’s been a long, difficult road for all of us. I don’t talk about my own struggles much, Cheryl has far more challenges than I. It’s nice to be understood. I’ll be part of this dialog for as long as it helps, I think that will be a long time! Thanks again.

  8. Dale March 29, 2015 at 6:16 pm #

    Michael I’m good with all the space you like (assuming Richard is of course).

    Hobbling out into an inch of snow this morning and spending the day in a cold beach house with some really decent waves and seabirds I have spent years getting to know out front, even though the entire beach looks like a war zone after this winters storms, all I could think of was one of my favorite Monty Python lines…

    I’M NOT DEAD YET.

    To all- No matter how infirm, no one should count any of us anywhere near out.

    • michael March 30, 2015 at 10:11 am #

      Awesome message,
      thank you.

  9. Jan March 29, 2015 at 10:21 pm #

    I appreciate your insight, Michael. Makes me think more about what my husband and kids may be enduring when observing my struggles. My “close others” really can experience their own forms of related emotional pain, though I sometimes miss them because of taking on false guilt. Just pushing through with a “me focus” can be more inward, not lovingly outward. I call it steely determination, but maybe that isn’t always so correct.

    Quotes from Goethe: http://goo.gl/V3m1P Nice, but I think I’m charged to express and live out my own personal quotes in this life. People all around may be suffering in their own ways. MS, horrible as it can be, also can provide greater insight and empathy to extend to others with any issue.

    I most certainly do relate to “private battles,” as well. (The emotional imprisons me even more than the physical). Not really alone; yet sometimes living in solitude. And maybe it’s okay if the battle itself defines, as long as MS itself does not.

    I think we can still direct the path of our responses. Richard, perhaps it is the health battles that transformed you from producer to inspiring writer? (This, my sole form of outside MS support, was not chosen lightly so please allow this well-deserved kudo).

  10. michael March 30, 2015 at 10:12 am #

    The battle defines…so true.

  11. josie March 30, 2015 at 3:45 pm #

    I am relatively new to this site and found it serendipitous “Private Battles” was one of the first posts I read. I am in the unique position of experiencing private battles from two sides. My husband was diagnosed with early-onset Alzheimer’s at the age of 55 and died last year at the age of 61. I was his caregiver. The loneliness and isolation of caregivers is very real. Many well-meaning friends would say “If you ever need anything, give me a call” but I learned very quickly the concern expressed was not necessarily the concern actually felt, as friend after friend fell off our radar, very quickly. I don’t blame them. It is uncomfortable. Now, I have been dx’d with ppms and am experiencing the battle from the other side. I honestly can’t say I can tell the difference except as a caregiver, I would sometimes catch a glimpse of a faint light at the end of the long tunnel. Now, I try to find that light within myself. When asked how I am doing, I put on my biggest smile and say “Great!”. It is just easier. The loneliness, the isolation, the Private Battle is very real on both sides.

    • Jan March 30, 2015 at 6:13 pm #

      Try as I may to just read and “listen,” I often respond. And will now because, Josie, a friend of ours back in IL lost her husband rather exactly as you did yours. It was my first understanding that Alzheimer’s can strike so early.

      And then Kathy passed away from cancer at age 60. At her age, she was well known in the community, often spotted in bikinis at the local summertime pool–and looked great in them. (I could not do that). But “beauty is as beauty does,” and underneath her glamour and French-manicured toenails, she left a legacy of caring about others. Truly so.

      I am so sorry for your loss.

      My sister’s husband left her two weeks prior to their 34th anniversary, and she, too, well understands your related comments about “friends.”

      Death, illness, divorce. You smile with “great,” and I with “fine.” As Richard has commented in earlier posts, not everyone understands or wants to. BUT, some do, some care, and we and others who do are out there. They really are.

      Your plate is likely full with that new diagnosis. May you find comfort from Richard’s blog. I have and appreciate the understanding, insight, and humor, too.

      • josie March 31, 2015 at 7:47 am #

        Thank you, Jan.

        Richard’s blog feels like a small pool of water in a dry, empty wasteland.

        Thank you, Richard.

    • rmcjourneyman@gmail.com March 31, 2015 at 9:05 am #

      Josie-

      It can be a rude awakening. When I had cancer, friends vanished. I stopped taking it personally. It does not have to be awkward but it is. Some just cannot handle it. I am sorry you are alone.

      R.

  12. Rob M March 30, 2015 at 7:46 pm #

    I sympathize with my fellow patients who say their spouses just don’t get it sometimes. My wife is understanding, but whenever we’re walking as a family it always ends up being her and my two kids walking about ten paces ahead of me. Sometimes it cuts me and sometimes I’ll joke to myself “I’m covering the rear flank.” One part of me thinks my spouse, or family and friends, don’t get it because I don’t communicate my struggles to my family often enough. Another part of me thinks “nobody wants to hear you grouse about your fatigue, gimpiness, forgetfulness, discomfort, etc.” Sometimes I quietly soldier on, sometimes I feel the victim, sometimes I share how I feel with my wife and sometimes I’m just crabby. It’s hard to figure out what to share without coming off as a complainer.

    • rmcjourneyman@gmail.com March 31, 2015 at 9:07 am #

      Do you ever ask them to just slow down?

      R.

      • Rob M March 31, 2015 at 2:29 pm #

        Yes. But I have to remind them every time we go out.

  13. Jan March 30, 2015 at 9:00 pm #

    I totally “get” that.

    • Dale March 30, 2015 at 10:35 pm #

      Oh yeah. Really, all most people ever want to hear is ‘fine’ or ‘great’ anyway. But that seems true for most things these days. If it really matters say ‘hey, wait up’. But I’m also usually the one with the money to no one goes far.

      Take your time and enjoy the journey.

      My moniker for work is “Unless you’re the lead dog, the view’s always the same.” But that’s only for work. In most other things, including dessert, I’m a firm believer in “Best for Last”
      .

    • rmcjourneyman@gmail.com April 1, 2015 at 1:17 pm #

      Just keep asking. Sooner or later…

      R

  14. Dale March 31, 2015 at 9:57 am #

    Made my morning to see your smiling face in here Richard. Popping in has become something of an addiction lately, work will still be there. But rereading some of the posts last night made me sad. Guess I’m always looking for some good news on your front. Ever hopeful.

    I actually discovered last night I move my legs more by lifting my hips up with the walker than lifting my legs. Probably doesn’t help things but it’s faster. Places to go, things to do (like timely arrival at the bathroom). Good thing I’ve always had a buff upper body. Well, at least for a girl.

    Hey, it’s Monday. Lets all get out there and kick butt. Figuratively or not. And even if it only involves making another cup of coffee.

    Attitude is everything.

    • rmcjourneyman@gmail.com April 1, 2015 at 1:20 pm #

      And it sounds as if you are doing very well.

      R.

      • Dale April 2, 2015 at 12:10 am #

        Norman Vincent Peale wrote about the value of imaging in life and it helping us get where we want to go. Believe it and you can achieve it. I’ve become a good actress as too many people depend on me and haven’t had time yet to write the soap opera script. But no one wants to hear my saga really. I’ll let you know when the made for movie comes out.

  15. Jan March 31, 2015 at 10:53 am #

    Anyone else out there who reads the WSJ (Wall Street Journal)? Love that paper–for all sorts of news and the writing.

    Today’s Personal Journal section has both a story of “Alzheimer’s Significant Others” (shows empathy for caregivers) and, on p. 2, a woman interviewed who changed the typical numbered pain scale into something with more meaningful descriptions. She has multiple sclerosis. (By the way, I also do not cap that unless writing MS in acronym form. Doesn’t deserve it, in my opinion).

    The people I know do not often associate pain with MS, though it is certainly a large part of my world. (Or a related part, likely neuropathy or EM). Real people. Real stories.

    • rmcjourneyman@gmail.com April 1, 2015 at 1:22 pm #

      I enjoy lining the cat’s litter box with WSJ editorials.

      R.

      • Dale April 1, 2015 at 11:57 pm #

        Bwahahaha sorry me too. Can’t stomach pompous in any form.

  16. Arlene April 1, 2015 at 6:56 am #

    The term private battles is a perfect way of putting the journey that is MS. My husband has no interest in educating himself to this journey. Whether it be denial, fear or just a lack of interest in the gory details I’m not sure. He does support me to a point, but gets noticeably annoyed with me when the subtle symptoms of this disease appear. If I drop something he helps by throwing up his hands and pushing me out of the way to clean up. Or if I stumble he jumps to say, watch it, what’s the matter with you! I’m at the lower point of MS symptoms and can’t imagine how he’ll handle what is yet to come, if at all. Praying for all the Warriors fighting this battle,and praying for a cure!!!

    • Dale April 1, 2015 at 10:42 am #

      Likely denial and fear. Everything’s great when we’re ‘normal’ and doing the June Cleaver thing. I just don’t count on anything I can’t find a way to do myself.
      I just had to replace the family minivan and the way the new ones are I can’t even get into it except using the steering wheel. So enjoy paying it off each month with everything else I cover while being told I shouldn’t drive if I have to help my leg.
      But that’s just mean. Sometimes folks are at their worst when they have some deep seated fear or guilt. Just catch any guy in a fib.

      Easy to say but try to rise above it. I did a needlepoint that says ‘Grin and ignore it”. Hang out here for a while, air your complaints about folks that don’t get it or don’t seem to care, the issues fall on understanding ears.
      Then try to go back and Grin and Ignore it.

    • MB April 1, 2015 at 10:59 am #

      It might help to talk about your concerns regarding his reactions before the situation presents itself. I found that to be true in my situation.

      I think some of the frustration that my husband (used to) display was peppered with an element of fear. When I told him that some of his reactions to my stumblings made me feel marginalized, resentful, and hurt, that helped him see that his responses to my MS blunders affected more than the momentary inconvenience it caused him. It was like pouring salt in an already open wound.

      Managing this illness and what it brings to our lives is exhausting, isn’t it?

    • rmcjourneyman@gmail.com April 1, 2015 at 1:24 pm #

      Tell him to call me.

      R.

      • Dale April 2, 2015 at 12:14 am #

        You’d have to be nice, not shred him. Well maybe.

  17. Jenny April 1, 2015 at 11:36 am #

    We all have our private battles. My husband “gets it”. I am blessed. Others do not”get it” because I don’t let them in or when they ask I give the standard “I am okay”. I wish deep down they wouldn’t accept that response because if they continued to ask, I know they are truly wanting the truthful answer. It would mean they are asking because they are concerned and not just asking as a formality. But I do have a question for us as a group…as people who supposedly “get it”…how often do we dig further when our friends, family, coworkers, and peers say they’re okay? Everyone has their own private battles. Shouldn’t we try to be there for them? Shouldn’t we step away from our own private battles for a moment to be there for them. Hmm…..?

    • rmcjourneyman@gmail.com April 1, 2015 at 1:26 pm #

      But how?

      R.

      • Jenny April 1, 2015 at 11:28 pm #

        A kind word, gesture, maybe not walking away (in my case scooting away) or letting them know you are concerned and wish to be there for them. Ask more questions…truly be present for them and listen…not only to what they say but what they don’t say. Remember..we “get it”.

  18. Jan April 1, 2015 at 12:09 pm #

    Exactly, Jenny… yes, I agree. I personally think that I am called to serve others in some way. (And what may seem small to me may be huge to another). Good point.

  19. Jan April 1, 2015 at 12:13 pm #

    And some years ago, I had a general doctor (can’t even recall what those are called–GP or something?) who would say, “How are you?”

    And then, “How are you really?”

    What you wrote reminded me of that. I think that those who want to key in to reality will notice. And then do something about it.

    We’ll notice words. Body language. Eyes. Sighs.

  20. MB April 1, 2015 at 10:23 pm #

    Crips? Et tu, Richard?

  21. Desinie April 2, 2015 at 12:52 am #

    Thank you once again for a post I can so relate to, Richard. To michael March 29, 2015 at 8:31 am: Thank you so much for sharing your poem. I’m the one w/ MS in my marriage, but having been married for over 22 years, our battle is shared. At times, I’d think my husband wasn’t seeing what was obvious to me and pretty much anyone that has known me for a decent amount of years , my MS has gotten worse in the past 15 years since I’ve had a name for my symptoms. After all, it is a chronic progressive disease but some without it seem to miss that part of the definition to the diagnosis. There have been times, most more recently than the early years of the diagnosis, where a mutual friend will tell me something my husband has shared with them about his view of what he sees me go through and his admiration of my strength and mental fortitude and it’ll quite literally bring me to tears. I know I’m blessed to have him and not everyone has the same luck or lot in their own life. Although in a perfect world that not everyone is given that same gift of a partner that can get it as much as possible without having to feel the symptoms their selves. Thanks for your poem. I can’t speak for all of us, but I think most of us would probably say we welcome you since we can clearly tell you’re on our team.

  22. Desinie April 2, 2015 at 12:55 am #

    edit my comment to say” Although in a perfect world everyone would be given that same gift…

  23. michael April 2, 2015 at 9:59 am #

    Thank you Desinie, I’ve seen a similar decline in my wife’s heath, she has “it,” I get “it” and we do the best we can. I have to agree with Jenny, it would be nice if somebody went past the obligatory How are you feeling, and actually listened to the truth. Maybe we should tell it and see what happens. Never mind, we tried that; didn’t go so well.

  24. Desinie April 2, 2015 at 10:29 pm #

    I hear you, Michael. I’ve tried and tried to explain for years and didn’t get very far with most people; even some family members. I gave up wasting my energy on trying to explain to some. After all, it’s my journey to understand, not their’s. ( I had one too many times where certain people’s eyes glazed over in front of me when I tried explaining. 15 years post diagnosis I hope I’m not only older, but wiser..lol )