Attitude Wars

Great responses to The Importance of Staying Stubborn. The battles raging in our heads seem to command more attention than the silent wars in our central nervous systems. Clearly we are attitude centric. Arms and legs, fingers and unmentionable parts of our bodies may falter and fail us. Still we focus on matters presenting themselves north of the neck.
This is not complicated. There is little, perhaps nothing, we can do about the loss of function. But we control our attitudes. Long ago, I decided that as a matter of pride and my struggle for control, I would bring calm and dignity to the conflict.
This is no small thing, at least for me. I know pride goeth before the fall, whatever that means. But I will be damned if I reveal how I really feel. This is not dishonesty, at least in my mind. Our view of ourselves becomes a private player, perhaps even a self-fulfilling prophecy. We are not in charge, but actually we are in charge. Once again, I look to psychiatrist Viktor Frankl on his years in concentration camps during the holocaust.
“Everything can be taken from a man but one thing: the last of human freedoms – to choose one’s attitude in any given set of circumstances, to choose one’s own way.”
Frankl was a hero. I am not. I do want to be strong, and I am determined to will that into being. I feel better about myself this way. If I can help others, I help myself. No. I am not playing Superman. I neither own nor rent a cape. As with all of us, I am just a guy making it up as I go along, and I have a long way to go. This is a war we can win, so it is worth fighting.

61 Responses to Attitude Wars

  1. Linda July 9, 2015 at 4:02 pm #

    Richard,
    As always, your topic is apropos to how I’m feeling. Thank you.
    How do I really feel? I’m not even sure that I’m privy to that information myself. If I dug down into my cerebral signals, I’m not sure I could describe how I really feel.
    I just got a scolding from my neurologist of 16 years. To my mind, I was walking about the same as when I saw him 3 months ago.
    Well, I had worsened and hadn’t really allowed myself to recognize how I was feeling enough to call him and instantly be sitting in the steroid infusion chair. Thus, a relapse!
    If I called him every time I told him how I really feel, I’d be living in that infusion chair.
    So, I will choose to continue to hold how I really feel, tight to the vest.
    The determination regarding steroids will be mine. They rack my body and my pocketbook.

  2. Christopher July 9, 2015 at 5:03 pm #

    Can we win it?

    Therein lies the ultimate question I think we all struggle with daily that either nourishes or strangles that highly suspect word… hope.

    • Richard M. Cohen July 9, 2015 at 7:59 pm #

      Win it? I don’t think so. I meant the attitude war and feeling better about ourselves.

      R.

      • Jan July 12, 2015 at 9:27 pm #

        I just now am thinking that “hope” for me applies to my attitude, regardless of my circumstances. (Though the tougher the circumstances, the more challenging the finding of hope, for sure).

        It’s not dependent upon things all going my way, or even leaning my way; more of a hope in security and significance that goes beyond just me/my desires.

  3. Yvonne July 9, 2015 at 7:24 pm #

    Christopher you know that is a dangerous word. Hope comes with disappointment when what we are hoping for doesn’t happen. So here we are again. Do we not hope to temper the inevitable disappointment? For me MS is so full of disappointments as the disease transitions and I can’t control anything. Hope just makes it harder so I control my hopes whenever I hear about the next best MS thing. Biotin is the latest thing for progressives. It’s cheap and I’ll try it but after years of cynicism with this dreadful disease, hope is not my go to emotion. Is this an attitude problem? Nope. It’s my coping mechanism and screw everybody who thinks an attitude problem.

  4. Christopher July 9, 2015 at 9:44 pm #

    I apologize, Richard. I misunderstood.

    Win the ‘attitude’ war? I guess that one depends on how long I can keep up the supply lines. Just like in a real war. Otherwise I risk getting overrun by too much I can’t handle. Pick your battles to win the war, I guess.

  5. Nik July 9, 2015 at 11:24 pm #

    My friend died today after a long battle with cancer. Her attitude was that she never gave into believing she was dying. Two days before she died she was coordinating car pools for her kids from a hospital bed. She thought she was having a minor setback and still planned to start her clinical trial this week. She left us today and will be buried tomorrow.
    Sadly I am nothing like my friend. She was strong and always hopeful and was never going to give up. Me, I’m a wimp. I am scared as hell what this disease means. I haven’t found a Dr I fully trust yet. I feel like a lost little kid.

    I clearly stay tuned to this blog to hopefully inherit some of this attitude and stubbornness. Go ahead, tell me to toughen up please.

    • r. cohen July 10, 2015 at 4:09 pm #

      Toughen up. You are on a long march.

      R.

      • Hannah July 14, 2015 at 3:50 pm #

        You can toughen up and still grieve for your friend. You can also think about your situation and deal with it compassionately. Sometimes I find that beating myself up by trying to toughen up does more worse than good.

        A childhood friend’s mother died on Sunday from MS complications. I don’t know the details, but the train keeps collecting passengers. We’re still here. Let’s enjoy it before our stop comes.

    • Jan July 10, 2015 at 4:18 pm #

      hi Nik, swamped week and waiting to get my son from work right now and I have to reply… I am so sorry about your friend and loss.

      Quickly, at year 10, I feel that I do have a certain attitude and strength but have to say that I would never tell you to toughen up… while I could see where it could be a hope to have, we have to be who we are and there are different stages, personalities, experiences of being human, and I think it is often all ok… the important thing is to just be yourself and here for each other.

      • Jan July 10, 2015 at 4:52 pm #

        Ah, “smart”phones… On my PC now, I see that Richard’s comment timing beat mine. (And he can get away with telling you to toughen up… better said by that curmudgeon than by nice me… do excuse the timing of my humor here, as I truly do not mean to be insensitive).

        So to combine these two replies, I think that we do end up toughening up in ways because of our experiences, in particular the more emotionally painful ones.

        I agree with Richard’s post in that “attitude” is huge and can either sustain or hold us back. (Easier said than done btw, especially if someone is new at all this).

        Re “Pride goeth before the fall,” I see truth in that, but more in the line of being haughty, not in firmness of fighting for ourselves as humans with real, important emotions and worthwhile purpose.

        I most certainly do control what I can, but we likely part some ways in that I also understand that ultimate control does not belong to me. A relief (scary at times, too) –and gives me more purpose in the struggles. It’s not always fun; it can be a real challenge; I don’t always understand, to be sure. For me, forging ahead–however that may be–with a purpose in mind helps.

      • Nik July 10, 2015 at 10:35 pm #

        Thank you Jan and you are right. The husband of my friend who passed spoke to me for a while today. He told me how his wife was tough and didn’t ask for help and kept it all bottled up. He told me that every person being given the same would handle it differently.
        I think it’s the beginning for me. So I’m nervous and waiting to see what the heck this means. I want to toughen up and maybe that will come in time. Certainly during the funeral today I realized I’m still here and I better start acting like it. It’s been this first year that been tough. My friend was my rock. She always knew what to say. I’ve learned a lot from her life and battle.
        Thanks for your words.

    • Jan July 10, 2015 at 5:46 pm #

      Was going through my “Friday pile” and came across a post-it with something I had heard a while back on a newscast (would be nice if I just wrote such things in a notebook instead of whatever happens to be handy… Anyway:)

      “You don’t know how strong you are until you’re forced to be strong.”
      (Sorry, I don’t have the source–just wrote down “para-Olympic snowboarder.” Good food for thought, as I see it: Choices. Perspective. Attitude. What will I choose?

  6. Liz July 9, 2015 at 11:27 pm #

    The last thing I want is for anyone to know how I feel, especially those I love most. But in my mind I scream at God.

  7. Grandma July 10, 2015 at 12:14 am #

    I don’t want anyone else to know how I feel either, so I have had nightmares every night for 15 years and I cry every morning. But I’m always smiling when someone is watching.

    • r. cohen July 10, 2015 at 4:11 pm #

      Why? I am not suggesting smothering your emotions. What does that have to do with being stubborn?

      R.

  8. Louisa July 10, 2015 at 12:55 pm #

    I first read Richard’s post and found it uplifting; I can control something and I will! But then I read the first few comments and I realized that one of my greatest sources of sadness. (and there are a few) is that in addition to everything else this disease takes, it takes away the emotional honesty and intimacy that was once the foundation of my closest relationships. No, I don’t want those I love to know how I really feel and on some level that is my gift to them. Something left that I can give. And, in turn, they don’t tell me how they feel about it. And I am grateful. I, of course, assume my husband and children hurt but I don’t feel that I could deal with the full weight of their sense of loss. So they do not know wholely how I feel nor I how they feel. I hope they have someone they can tell. I do not and have come to feel unknown.

    • r. cohen July 10, 2015 at 4:17 pm #

      I think you guys are taking this to more of an extreme than I could foresee. I am not saying not to show emotion when felt. My point is that I want my general demeanor to be steady. None of us should play Superman.

      R.

      • Jan July 10, 2015 at 5:09 pm #

        Richard, actually I think you have been clear and helpful.

    • Jan July 10, 2015 at 5:08 pm #

      Oh, Louisa… I really can relate to much of what you said, as I think that mostly just those of us who have or who are close to someone with health issues can truly “get it.”

      However, there ARE truly sensitive, attentive people out there. In thinking about this, it does seem that they are the ones who themselves have been through something–health or otherwise– rather than operating behind a false shield.

      I hope for you for a true friend, one who can be there for you (and you for the friend–it does go both ways, I think). Know that I, too, don’t really talk much about my MS emotions with any family member (possibly not a good thing); but I have a few close friends with whom I chat. I could be doing my family a disservice by not being more real about my emotions–a fine balance for me between wanting to operate “normally” and embracing likely needed help. Communicating truthfully and whining are different. If I don’t ask for help, how will they know I need it; how can they learn to be more sensitive to others?

      • Nik July 10, 2015 at 10:41 pm #

        Well Louisa and Jan I could give you lessons on letting everyone know how you feel. Just ask my husband 😉 the poor guy. And my kid too. We live in a small two bedroom apt, so emotions are a bit hard to truly hide. As are conversations.

        What Richard seems to be talking about may be different of what I initially thought….

  9. Christopher July 10, 2015 at 8:57 pm #

    A seesaw needs both sides to work properly. It isn’t always evenly matched.

    A travelling salesman stopped at a farmhouse one morning and knocked on the door. The farmer answered and offered the salesman a seat inside while he was finishing up his morning chores. After about thirty minutes the farmer came in with a big pitcher of milk and some eggs. He started making some breakfast and called out to his children to, “Come ‘n get it!” The salesman smiled and said, “Boy, that sure smells good.” The farmer nodded and said, “Well, I’ve plum run out of milk… but if you git some more from the barn, I kin fix ya something up.” The salesman agreed and walked out to the barn with the pitcher. He opened the barn door and came face to face with the biggest, meanest bull he’d ever seen. He turned and ran back to the house. The farmer could see the salesman was shaky and flush. “What’s the problem, young feller.” The salesman huffed, “P-P-Problem? There’s a big, crazy bull out there!” The farmer chuckled, “He ain’t no harm. Jus give ’em a tug and he’ll do the rest.” The salesman was aghast, “Aww, hell no!” The farmer sighed, “no need to swear young feller. I’ll do it myself.” After a few minutes the farmer returned with a full pitcher. “Here ya go,” the farmer said and put down the pitcher on the table. The salesman turned pale and stuttered, “I-I-I-I’m not g-g-gonna drink that!” The farmer furrowed his brow and grunted, “Now there ain’t nothin wrong with this here milk… have some!” The salesman wouldn’t budge. “No!” The farmer shrugged and then took a huge swig from the pitcher. “See… good as any.” Then he emptied the last tablespoon of milk into a shot glass and slid the glass to the salesman. “Here, try fer yourself… ya big baby.” The salesman sniffed the glass carefully, then sipped. He grinned. “Hmm, not bad.” The farmer pointed at the barn. “There’s more where that came from, jus go on out to yonder barn and fetch it yourself. And remember what I said… jus give the bull a tug, and he’ll do the rest.” The salesman walked out to the barn and disappeared inside. Then there was a horrendous clatter that sounded like the barn was being torn apart from the inside. Ten minutes later the salesman emerged holding the pitcher, but he also had torn clothes, mussed up hair and a split lip. He walked in the house and triumphantly put the full pitcher on the table. The farmer looked confused. “What in tarnation is that?!” The salesman smiled sheepishly. “Uh, whaddaya mean? I went out and gave the bull a tug, and he did the rest… just like you said.” The farmer shook his head. “That may be so, young feller. But that sure as shootin ain’t from my refrigerator.”

  10. Ann July 11, 2015 at 12:32 pm #

    Great post and discussion. 5 years ago no one could tell I had MS. Now, walking is much harder, I use a cane and probably should use a walker. Every day I must address strangers regarding “my injury” or “what happened?” And often friends and family ask “How are you?” meaning “How are you holding up emotionally?”

    I don’t like to cry. Never have. And I would rather wall up than show anger. My private self is really the same as my public self in this way. When people ask me how I am doing, I often say (as I way of explaining my emotional “flatness”), I say “What else can I do? Be sad and angry every day? I am living in this body every second and I usually do my best to live in it and accept it as is.”

    Just yesterday 2 different strangers at my yoga class came up to me and said I was an “inspiration”. It felt good and yet part of me is like “I don’t want to be an inspiration! I want to be me! The old me!”

    I remember hearing a holocaust survivor speak at the Museum of Tolerance in LA. What struck me was how he survived mentally in the concentration camp. He explained that he never allowed himself to look backwards and nor did he hope for the future. He lived every moment in the moment, determined to survive that moment, that day. He was one of the lucky ones that made it out alive. While my situation cannot compare with the horrors of the death camps, he taught me such a vital lesson. That the moment is all that we have and we can choose our attitude here and now.

    • Jan July 12, 2015 at 9:42 pm #

      Hi Ann – for me also, most outsiders couldn’t tell at year 5. Now, grocery carts come in handy as “phantom walkers.” I sometimes use my cane, even a scooter at Walmart–big store.

      Ah yes, the “you’re an inspiration” comment: I, too, vacillate in my feelings about that one (likely depends upon my mood, the circumstances, and who makes the comment).

      And living in the moment helps me greatly. I’ve often said that I try to learn from the past, live in the present, and plan only as necessary for the future: works for me.

  11. Yvonne July 11, 2015 at 10:39 pm #

    The brave face. We all do it. Whether it’s to spare the people we love or to avoid the questions of curious strangers, we all lie about how we feel at some point. Rarely do I let people know how I really feel. Few can understand today may be the only good day. I have a friend that watches like a hawk for a good day because she thinks it means I’m getting better and so to avoid having to explain for the 1000th time that this disease progresses not regressions I lie in reverse…never telling her it’s a good day. I don’t always want to share my emotions and I think that’s ok. Not trying to hide my demeanor just don’t always feel like sharing. Too much energy.

  12. Rosanne July 12, 2015 at 8:24 pm #

    I love this blog. Because of your post and others on the same subject, I have stopped asking people I meet: “how are you?”. I have now adopted the policy of always saying: ” HI!!, it’s good to see you (again)” and let my voice fall. I’m learning that, even though I carry burdens, others do also and they might be much more than mine.

  13. Jan July 12, 2015 at 9:49 pm #

    Very wise of you, Rosanne, I think.

    BTW, I’ve also learned that approach to be rather effective with my teens. For some reason, I’ve heard that teens can find that threatening (when I thought it was a caring thing–not always perceived as such, though). Hmm… some rather interesting similarities between the groups regarding sensitivities to comments.

    So, my personal takeaway from this is to pay attention to such things (and just to be aware and remind myself that people who say, “How are you?” usually don’t mean to evoke the internal response that could possibly follow).

  14. Jan July 13, 2015 at 6:54 am #

    Okay, here goes my ultimate “staying stubborn” reply, and rather transparent at that:

    Vision. Bladder. Bowel. Sexual. Fine motor. Gross motor (aptly named). Neuropathy. Pain. Permanent blue car placard. Cane, more often. Occasional scooter. Interruption of a whole lot of plans, from work to family walks to events in the heat. No MS meds ever. Overdoing, and then slumping in a chair for a 20-minute recovery of sorts to be able to (sort of) walk again. I rather believe all of that qualifies me to say that…

    …I have a disability. I have a handicap… but do I?

    NO; still can’t, even at year 10. “I have health issues.” Okay, throw in a pinch of “mid-life crisis” for good measure.

    I’m 53; have been told that I look younger–I’m going to go ahead and claim that one, thank you very much (even if the kindly comments can originate from someone trying to sell me something at the store)–I’m relatively in shape, mostly from diet and swimming.

    I know others in similar circumstances who talk freely with the D and H words, and I certainly do not think any less of them. At present, I’m stubbornly sticking to, “I have some health issues.” A minimization? (Maybe). Denial? (At times). But my perspective works for me.

  15. Janis July 13, 2015 at 9:27 am #

    Hope is Life

  16. Jan July 13, 2015 at 11:03 am #

    …just to clarify, by “mid-life crisis,” I’m referring to a more clear reality of so much happening to people I personally know: six dealing with job losses, a husband leaving his wife just short of 36 years of marriage, a neighbor recently passing away after a surprise 3.5-month battle with liver cancer, uprooting family moves, all kinds of health issues (lots, without even mentioning world issues).

    So Janis, yes, I can see that hope can mean life. It can also mean some other things and likely varies from person-to-person, with the perspective each of us chooses to take.

    Richard, your blog here offers really great perspective, inspiration (excuse that word, if necessary), and understanding — of others and of ourselves, thanks.

  17. Jan July 13, 2015 at 11:06 am #

    And I almost forgot to mention two men in my former neighborhood passing away at around age 50 from cancer. For me, a lot can be daunting. But, I tell myself, what am I going to do today with what I have?

  18. Geof July 13, 2015 at 11:11 am #

    You speak of this as a war we can win. The irony to me is this war seems best won by just assuming “victory.” There need be no shots fired. Simply by continuing to be that which we are, we win the only battle. I tell myself my credo all the time,

    “Do what you can, when you can, until you can’t. Then rest easy knowing tomorrow will come with no effort on your part, and all of the haggard lines across your face were earned in the only pursuit worthy of the effort, the life well lived.” .

    Still, the fact that I frequently repeat this to myself says a lot about my ability to credibly declare victory in my own mind.

    • r. cohen July 17, 2015 at 8:14 pm #

      //i meabnt the attitude war, not the illness. Sorry for any confusion.

      R.

  19. MB July 13, 2015 at 12:10 pm #

    Today was a bad day to read this post. My attitude is abhorrent because I’m trying to straighten up my house for a houseguest who is coming on THURSDAY and I am having trouble with the most trivial tasks.

    I’m SICK of pretending everything is going swimmingly. I should videotape myself trying to clean a mirror when half of my body doesn’t work and I keep falling back into my wheelchair. And guess what? There are still frickin streaks. I’m told to forget about things like clean mirrors because they don’t matter in “the big picture.” What I’m hearing is to lower my standards because they are too high for me to maintain. God I HATE what this disease has done to me and I HATE “big picture” references.

    I’ll get my emotional shit together before anyone comes home today or if a friend drops by, and I’ll answer, “fine” when asked how I’m doing. That’s what we do, right? Fine? Are they blind? People really accept that answer. I’m so NOT fine, but as long as everyone thinks I am (because “she said she was fine”) then their world can continue to revolve around the sun and they can go home and look into their clean mirrors because they sure as hell didn’t do that at my house.

    We’re Doctor Jekyll and Mr. Hyde and that’s supposed to be okay as long as Mr. Hyde only emerges when we’re alone.

    Sorry for the rant. I’m just so tired and my mirrors are a mess.

    • r. cohen July 17, 2015 at 8:17 pm #

      Why do we pretend? Maybe you should be dandid with your guest and stop torturing yourself.

      R.

  20. Jan July 13, 2015 at 8:14 pm #

    Hi MB–“reflecting” on your post (excuse the word there).

    Have to mention that I’m really sorry for what you are going through–sounds extremely frustrating, both physically and emotionally.

    No advice or encouraging words (because I don’t really think that now is the time for that). Just an ear and gratefulness for Richard’s blog. Because I think that sometimes we just need to vent among those who get it.

  21. Yvonne July 13, 2015 at 10:32 pm #

    MB went through something similar with the trying to clean up before company arrived. Now I leave clean sheets on the bed along with fresh towels and tell them if I made the bed and organized the towels on a rack I would be too exhausted to do anything else. I schedule a person to come in and clean the week of and the week after visitors because I finally accepted I just can’t do it anymore. The good news is I have a guest bathroom so that mirror stays clean until they arrive. I also ask visitors to strip the bed and leave the sheets and towels in the room. I’m still going to be exhausted doing laundry and folding afterwards but I do it at my own pace with a glass or two of wine. Here’s the kicker…I still answered the question “how are you doing” with a 🙂 and a “fine” because I didn’t want the pity. Strange what we think is acceptable to reveal and when. Or maybe it’s just my weird way of coping while trying to appear”fine”.

  22. Jan July 13, 2015 at 11:55 pm #

    Nothing quite like getting up waaaay too early and then staying up to catch the start of Fallon… things either made me chuckle or caught my eye, the latter being his mention of his finger/ER experience and reading a book by V. Frankl (name mentioned in this post of Richard’s).

    Have not read the book, entitled “Man’s Search for Meaning,” but it could be a good read to investigate…

  23. Jan July 14, 2015 at 2:22 pm #

    Richard, kudos to your wife/her show just now… no time to watch the rest, but I liked the rather spirited discussion today with the three MDs regarding supplements and prescription meds. Great food for thought.

    Oh, and food: real food, the real key, I think.

  24. Jan July 14, 2015 at 2:48 pm #

    With my last comment, I should likely clarify that food alone may not do wonders, but I think it certainly does huge things (it has for me, anyway). And I refer not to diet”ing” but to “diet,” and mine has changed considerably over the years.

    Also, “beauty is as beauty does” — in that appearances often don’t tell the whole story: I am adamant about seeing the inner person in people.

  25. Lyla July 14, 2015 at 11:07 pm #

    MB, I can relate to your determination to maintain some semblance of what I am perceiving as a penchant for order in your life. This drives me too and I am really okay with it, even if the order is limited to an arms’ length.

    I let myself enjoy the sense of accomplishment that I get from doing some of the things that other less driven souls might thumb their nose at. I will enjoy the recovery too, because I can relish the fact that I set up two bedrooms in anticipation of a guest arriving and stayed up too late, but it doesn’t matter. I am determined to live right now. Tomorrow is a deceptive suitor and life is a long distance event.

    Live well!

  26. dale July 16, 2015 at 9:43 am #

    I hear ya MB Loud and clear. So loud in fact i took a break from the outside world for a while to focus on work except responding to friends in other countries know it wasn’t me that helped the shark off the beach on Cape Cod. Having a study site right near there though it could have been were it not for these damn legs. I am sick of missed opportunities.

    Richard from your tweet sounds like you’ve left the Cape. Our loss. I was recently explaining my Secede Now t-shirt remnant of when Nantucket and MV wanted to secede from the state, The islands are having issues with medical marijuana not being allowed to be transported across federal waters. I’m pretty sure both have a lot of home grown.

  27. Sarah July 16, 2015 at 10:41 am #

    Stay stubborn for as long as you can, but temper it with intelligence. Like it or not, we MSers have been given a great gift. The progressive nature of our disease means that today will be better than any day in the future. Talk about carpe diem. This means that we can not lull ourselves into thinking, as mere mortals do, that we’ll get around to things later, or that things will be better in time. Most people squander away their whole lives under the assumption they have infinite time to play with. We have the crystal ball. We need to use time wisely.

    • DianeT July 16, 2015 at 2:23 pm #

      Well said, Sarah. Thanks for the reminder.

  28. Yvonne July 16, 2015 at 8:52 pm #

    Very well said Sarah. I will use your words: Today will be better than any day in the future so make it count. Thanks.

  29. dale July 17, 2015 at 12:42 am #

    Yes very well said Sarah. But the reality check depressed the heck out of me.

    I prefer ‘you won’t have this day ever again so make the most of it’. Not being reminded it’s predictably downhill in the future helps keep things going. Besides, who knows?

    • Jan July 29, 2015 at 9:37 am #

      Dale, perhaps acting on the reality but not thinking about the possibly scary future?

      I have often said, learn from the past (but move on), live in the present, and plan only as necessary for the future–esp. emotionally.

  30. MB July 18, 2015 at 9:49 am #

    Thanks for the feedback, everyone. You really helped me climb out of the abyss.

    Now to address yesterday’s Twitter entry by Richard about the craziness of the physically compromised who try to perform normal chores. It’s about trying to maintain a semblance of normalcy. After failing miserably trying to clean my mirrors, I called a cleaning service to come out and clean my house. Then I arranged for weekly services. Good for me? 50-50. I’ll have a clean house, but the beast forced me to surrender and I lost another battle.

    I know I’m in some sort of denial, otherwise I wouldn’t attempt to do things that have become too difficult or impossible for me to do. I think denial fuels hope because something has to keep hope alive. If not denial, then what?

    • Betty July 18, 2015 at 8:18 pm #

      It’s not denial. It’s reality. It’s raw, and real and there is hope. If you can do it, do. Thoughts, and moments and hours can be better or worse. Keep going; keep trying, and marvel at all that you do accomplish. On your worst day be glad you are you.

    • Rosanne July 22, 2015 at 7:48 pm #

      MB – 15 years ago, I realized that I could no longer vacuum, clean bathrooms or turn beds – let alone clean floors. I have had scoliosis since the age of 10, it is now at 69% curve. I didn’t like “giving in” either but this is the way I looked at it: This house is not going to make me worse, it will not put me in bed after a day of cleaning. I would rather put the extra time I have to better use, like just sitting and watching a movie instead of constantly worrying that my floor has dirt on it. After a while, you will wonder: why didn’t I do this a long time ago 🙂

  31. dale July 21, 2015 at 2:35 am #

    Today I remembered how much I encouraged my mother to ‘just keep going’ in the last year of her life when her health was failing and in a lot of pain. Now i feel very selfish about it, it really was for me, not her. In the end she finally just said “I want to be with Dad now” and I realized it was time to let go.

    The heat has been more than challenging, tonight I will probably sleep in a chair as I can’t get up the stairs. Everyone else is up there asleep. I sometimes wonder how much worse I might get before wanting to throw in the towel. How much we should be expected to be martyrs to the cause and ‘just keep going”? Who wants to live when they’re barely living? Do we just keep on for others when we’ve clearly become a burden? I’m not sure I can go there.

    • Joan Z July 22, 2015 at 10:39 am #

      Dale, I thought about your post all night. I have had a disturbing number of “it would be ok to just fall asleep and not wake up” moments lately myself. Life is just hard, isn’t it? I. Wish I had a magic wand & an an answer for both of us. Hang in there, I hope today is better.

      • Dale July 23, 2015 at 1:24 am #

        Thanks Joan, actually knowing someone gets it helped. Can’t really express those emotions to family, especially this one. Not now, probably not ever.

  32. MB July 22, 2015 at 11:28 pm #

    When people experience a trauma in their lives they are counseled to put the episode behind them because it is in the past, it is over, finito. There’s only the present and the hope for a good future.

    Our situation is different. Our trauma could not be relegated to a memory because it’s not over. Our old life is the part that is over. I think that’s what has to be accepted in order to live the best life as the person we have become. Pretty basic.

    I’m stuck though. I know what has to be done, but I realize that I can’t cross the bridge alone which is why I’m finally going to look for a therapist who might be able to help me move forward.

    I still have a lot of the old me in me—it’s the shell that’s different. I understand that on an intellectual level, but I know I need some type of push to accept it emotionally.

    Wish me luck!

    • Jan July 25, 2015 at 4:15 pm #

      I do wish you well, MB, and think it wise of you to seek out assistance.

      Yes, daunting at times for me that older, familiar things have passed, so I gain some replacement sanity by opting for different, doable goals with some type of value.

      But not always. I do at times still push too hard, driving my husband a bit crazy when ignoring my own pain, weakness, inability in an effort to do my old status quo. As in barely walking 5 blocks in humid heat.

      So, tonight at night 2 of his H.S. reunion I will take my cane, realizing that some last night likely thought I was drunk when leaning on chairs, walls in humidity. Thought it big of me to look normal without the cane. Later realized I likely looked anything but that. Some tonight may get a more realistic glimpse, and I will not have to work so hard.

      And I do not deal with the progressive nature… other than having to progressively work harder.

      • Jan July 26, 2015 at 11:43 pm #

        Yep, took the cane gladly. Used it; then ditched it after helping to flood the dance floor with readily obliged requests to the kindly DJ of Footloose and Love Shack. Took off my shoes. Legs, ankles very weak but joy, will, smiles greater.

        Paid for it today, but oh, so worth it. From worst-ever Feb. attack and hardly walking in my house to this… I do not allow an attitude of defeat. It pays off at times.

      • Jan July 27, 2015 at 10:02 am #

        P.S. Do not be fooled by the frolicking… ankles have extreme pain and weakness, head and eyes off. It is just that I do not give up what is in my heart.

  33. Sue in TX July 24, 2015 at 1:43 am #

    Hi. I’m new here. I found Richard’s blog and really related. I share a lot of your feelings. With regard to recent tweet on symptoms upon waking, For me, Symptoms seem insidious or questionable during the day. I’ve grown accustomed to dismissing passing symptoms throughout the day. I am amused if pins and needles on my arm turn out to be light rain and when I examine the floor to figure out why it feels so uneven, but no defect is visible. In the morning when I awake, however, my physical issues rush at me. It’s sudden.

  34. S Marc Singer July 26, 2015 at 9:13 am #

    My approach after 25years with this disease is to keep showing up. I call it healthy denial. I have been on a slow but steady decline for ten years but I continue to drag my failing body to work everyday. Perhaps i am stubborn. Perhaps its a male thing but I do have to support my family. I am not emotionally ready to go on disability. I am learning to accept help from strangers who see me struggling to dismantle my little red – constantly breaking down – scooter and lift its parts into my car. Most times their help undermines my system of scooter assembly and dissasembly. But the reality is that I am weaker. I need the help. Not to stray off topic but its amazing how all different kinds of folks offer help without hesitation. Last week I accepted help from a homeless man. Wow!! He had no pity. He didn’t say anything. I thanked him he nodded then went on his way. What a reality check. Let me get back on topic. I am learning to manage the disease driven loss of function. I must be safe otherwise what is the point of commuting to work if I am going crack my skull open if i fall. I don’t focus on the inevitable. I keep moving and try to stay present. I have outlets for the grief but that’s a separate project. Thanks for the blog.

    • Jan July 29, 2015 at 9:42 am #

      I think “healthy denial” can definitely have its place, perhaps more often than ppl close to me would like to see! But actually, when those two words are truly employed together, why not?

  35. MB July 26, 2015 at 11:53 am #

    Your tweets are spot on, Richard. It’s better to suffer in silence since that’s considered to be a sign of strength. If we open ourselves up to sharing the truth about how we really feel, we have invited someone else in who has no idea what to do. How horribly sad.