Waiting for the Ax

An upbeat attitude is a reliable defense mechanism, even fuel for denial, as we try to charge through all in our way. In a way, that is what this blog was to be all about. Make sense? Some of our medical problems have been crises, others, flies to be brushed off shoulders. Having passed the magic number, sixty-five and peering into an unkind mirror, I spend more time than is comfortable wondering if there is an endgame out there.  By endgame, I mean, the last level of a game, a strategic climax with a loudly ticking clock.

No. I am not getting morbid, but too often I feel I am waiting for the ax to fall, OK. I am getting morbid. I just do not let my guard down. Younger people are more vital, with bodies more adaptable and ready to rebound. Resilience is dulled. I am tired. The problem is that often, MS hits when we are down, almost as if the disease senses vulnerability. That certainly sounds paranoid. But I feel my physical weakness everyday. I have become easy prey, and we are being stalked.

Before you have me taken away, hear me out. Some of us need regular attitude checks. Emotional fortitude can be manufactured and renewed. Mine needs to be fortified from time to time. I think there is strength in resolve. To a point, we can become bulletproof. I have been carried forward by determination. This is not warmed over Norman Vincent Peale and The Power of Positive thinking, only the need for all of us to believe in ourselves. Resilience is a wonderful quality. And I would rather go down fighting than waiting for the ax.

 

29 Responses to Waiting for the Ax

  1. Joan L. October 31, 2015 at 12:11 pm #

    Yep. Hit 62 this year, read a study that people with MS have a slightly reduced lifespan …around 70 for females. Whoa! I better get on with it! But, what do they know, I am continuing to think I’m 33. “Could be hit by a truck tomorrow.” Tomato, tomato. Carpe ..whatever we can!!

    • r. cohen November 2, 2015 at 4:17 pm #

      I don’t believe those numbers. A mystery disease has to have mystery numbers.

      R.

  2. Jan1 October 31, 2015 at 12:44 pm #

    (From the prior post): Sue, I agree that our bodies do not define our self-worth; that learning “how to be sick” doesn’t mean becoming passive or indifferent; that we are each to take care of our body and mind as best as we can. Makes sense, and I agree there. (And I think you’ve made some really great points in Richard’s various posts and appreciate reading your comments).

    We are different in that, as a Christian, I believe in a mind/body/soul connection. So for me specifically here, the state of my body absolutely does affect me emotionally and spiritually – and it brings meaning to me for the otherwise hopeless and usually painful suffering – MS and other things, too.

    There are clear directives I read for “yes” and “no,” but there is also a “you decide” within the framework—I think that’s where it can get challenging, with choices to make and live with.

    Richard, while I may not always understand, with Christ as my starting point and on whose direction I rely upon, I continually seek to discover what I am to learn and impart. It is why my perspective has a “hope” to it, both here and eternally.

    And I surely do not seek out physical suffering (not a fly, but often an elephant in my room), but when dealing with it I am assured, and place my hope in, that with it also comes opportunities for spiritual growth in Christ and emotional freedom.

    Nothing wasted here. The crux of all of this really is, in what or in whom exactly am I placing my hope, my trust? Me? Strong as I can be, I will always be imperfect and fail, so if trust is only in me, then for sure I will be disappointed. (So that is a major relief and incentive to trust not only in me and to and press on). Initial decision, yet a continual process of challenge and growth thereafter.

  3. Sandy Stolaronek October 31, 2015 at 3:33 pm #

    I feel as though my body has betrayed me and I, in turn, abuse it! I don’t eat right and unfortunately, I’m a smoker. I’ve tried to quit numerous times but I’m not giving up on quitting and if it takes me the rest of my life, I will always have faith that I will accomplish this goal! I know that smoking makes MS worse and eventually, something will force me to quit. So, in the meantime, I won’t give up the notion that I will succeed. Also, I feel like the other shoe is going to drop and there is a foreboding feeling that I have never really been able to shake since I was diagnosed with MS. I think that when you have a chronic progressive disease; especially one that can take so much away from you and render you almost incapacitated like
    MS; you are likely to feel this way and so, you stop questioning that foreboding feeling and just accept it and live with it. It’s unfortunate but it’s true!

  4. Nan October 31, 2015 at 4:45 pm #

    It’s ironic to have this discussion on Halloween. A day meant for dressing up and pretending to be someone else. Each day we have a similar choice. Are we going to be the superhero amazing observers with our incredible strength or go for the angry witch/warlock?

    There are days when the choice is made for us. Those are the days when we can’t fool anyone, including ourselves. When our resilience is tested that’s when its time to use the ax and come out swinging!!!

    Speaking of swinging GO METS!!!!

  5. Jan1 October 31, 2015 at 10:51 pm #

    The topics of Halloween, the ax, and this blog came to mind when a dressed-up tin man came to our door accompanying his little kiddo. The Oz tin man was after a heart, right? I think he’d find heart, resilience, and comradeship in this blog.

    And now, I’m going to find a tad of leftover candy.

    • r. cohen November 2, 2015 at 4:19 pm #

      If you see an extra brain, please let me know.

      R.

  6. Amy Corcoran-Hunt November 1, 2015 at 9:10 am #

    The ax is coming for everybody. Pay no special attention to it.

    • Yvonne November 1, 2015 at 3:42 pm #

      Agreed Amy. When it comes we can try to deflect the blow and fight back as best we can. Otherwise, the best we can hope is the swing is quick and merciful. It’s the wounding that is painful. MS teaches us that lesson.

  7. MB November 1, 2015 at 3:47 pm #

    I am determined to carry on and have been quite resilient when faced with setbacks. Family, friends, and coworkers treat me no differently than when I was “normal”, except that now when they hand me a beer or a bottle of water, the cap is already removed since I don’t have use of a hand.

    With me the problem is in the alone time. When I first wake up I lie there and wonder how I can do another day. That passes until I go into bathroom and struggle through the routine of showering, fixing my hair, applying makeup and getting dressed. If anyone watched me during that time I’m sure they would join me in the tears I regularly shed. But I persevere and roll out to the family room waiting for my driver to come and take me to work. “How are you?” she asks. “Terrific,” I say with a smile, and my workday begins.

    There is strength in resolve, Richard but it comes with a price. In order to keep my brain alive, I work. But in order to work, I struggle through the steps of getting ready. I’ll keep doing this until I can’t anymore. It makes those I love worry less about me so it’s worth it, but crap, my body really really hurts.

    I don’t think I’m waiting for the ax to fall. I kind of see myself cautiously walking through a minefield. Some of us make it through unscathed, and others—kaboom.

    • r. cohen November 3, 2015 at 7:39 pm #

      I get it. I can only write for myself. Please keep on keepin’ on.

      R.

  8. Jan1 November 1, 2015 at 5:52 pm #

    MB, I have to admit to relating to this in some ways: the shower, weak wrists trying to put on makeup, clasp a necklace or earring back, trying to carry a pot from stove to sink, walking around the house but not well elsewhere. PT work feels normal and sustains my sanity (but it’s from home and not the desired full-time in an office to really make a financial impact with two in college).

    Good that your family treats you normally: mine tries to help (and really does in certain ways), but I am rarely asked what “I” would really like; what matters the most to “me.” Am in the middle of a teeter-tauter with those close wanting to help and more fully realizing reality, but with me wanting and pushing for life as usual amidst the pain and limitations.

    Someone I now on a DMD uses the visual of an ax always swinging overhead and never knowing when it will drop. I am resilient, for family, for responsibilities, because it’s my nature to me, and for reasons I already mentioned. Doesn’t make it easy.

  9. Jan1 November 1, 2015 at 5:59 pm #

    Separate Q: does anyone else have issues with pain, vision, walking, feet burning, and the feeling in a leg of daunting sciatica or something that hurts and can ruin balance/standing, a stinging loss of strength with no notice? My only comfort in this is that it has happened a few times before; also, it’s the change of season and rainy outside. I’ve never really met anyone with the exact same symptoms.

    • Pam I Am November 6, 2015 at 1:01 am #

      Jan1, as I lie here tonight reading these comments, I’m sorry to say that I am experiencing exactly what you describe. My feet burn, tingle, and itch intensely and painfully with no rhyme or reason. My toes curl under but I always feel the urge to stretch them out and crack the joints for that fleeting moment of relief that always seems to be dangling just out of reach. I’m secondary progressive, and am already on the highest dose of drugs that supposedly target the symptoms.

      At this point, the meds offer minimal relief and serve to only make me more fatigued and sleepy. Waist down, I am very spastic, very sensitive to touch and stimuli, and cannot bear to have shoes on in the house. I also lucked out and have severe myoclonus coexisting with my hyperesthesia…aren’t I lucky? (/gallows humor).

      Anyway, I do notice that symptoms become more pronounced during the change of seasons. So you are not alone in that experience either. Once the atmosphere has settled down, I usually return to my base level of constant discomfort. Unfortunately for me, every year the universe keeps moving that baseline downward. That’s why I have to deal with MS day by day. And on days like today, it’s moment to moment. Be well…

  10. Yvonne November 1, 2015 at 6:33 pm #

    Jan1 now you have. I have all those symptoms daily. Someone just said those kind but dreaded words “you must be feeling better today because you look really well”.They don’t see the struggle that MB described nor can they see the internal struggle to maintain the facade of healthy. We really are deserving of an Academy Award for the acting we do on a daily basis. Damn the axe… Just getting up from a chair can take us out!

  11. Nan November 1, 2015 at 10:19 pm #

    Ditto with the symptoms plus I’ve got a semi broken foot from spasticity. My toes have curled so much that it’s putting pressure on the small bones causing stress fractures. My second toe has become dislocated and looks like it’s trying to stand straight up.

    • Sue in tX November 4, 2015 at 9:31 pm #

      Nan. This happened to me too. I thought I was only one. My second toe is stretched out, and others curl and turn white when I grip the floor with my toes to stay upright. No pedicure is gonna fix the mess! If toes fracture again, you can tape toes together to keep from spreading during contraction.

      • Nan November 6, 2015 at 7:33 pm #

        Sue, I’m both sorry to hear about your feet and thrilled that I’m not the only one! Thanks for the taping idea. I’ve tried a couple of different toe tapes. Now in addition to the toes, the small bones on top of my foot are breaking. It happened to my other foot too. Hopefully you’ll skip that experience!

  12. Suzanne November 1, 2015 at 11:12 pm #

    Sandy, Get a copy of “The Easy Way To Stop Smoking” by Allen Carr. It sounds stupid that a book could work but it does. Some how it rewires your brain so you can stop. It’s an easy read and doesn’t use scare tactics. Read the hundreds of reviews on Amazon.

  13. Jan1 November 2, 2015 at 12:29 am #

    Thanks so much for your replies to my questions… Yvonne, that was all so well described. Nan, too, thanks.

    A thought that comes to my mind on occasion is, if I didn’t have any of this health stuff (even amidst other rather tough life things over the years), would I really be as tuned-in to others’ health issues as I am, be it MS, cancer, ALS, CP, other issues?

    I’d like to think I would be, but I don’t really think so, truly. Touched, likely, but not as affected, not as understanding from the core, in seeing others. (Maybe that’s my answer to myself to understand others when they just don’t “get it”).

    Off to sleep now (too late), with a bit of a “fear” of turning into my mother… with her, it was Errol Flynn movies; with me, the Hallmark Channel 🙂

  14. Vikki November 2, 2015 at 4:30 pm #

    Jan, for myself, I am absolutely much more tuned in and sensitive to others ailments. And 100%, my daughter, who has lived through MS with me for all of her 18 years, she is the most empathetic young woman I know. Towards not only me, but to others as well. There is no blessing in this disease surely. But it changes your view of what truly is important in life and I see this as a positive.

    • Jan1 November 2, 2015 at 6:31 pm #

      Vicki, I agree totally. Thank you for sharing — and I found what you had to say to be encouraging.

      • Jan1 November 2, 2015 at 6:32 pm #

        Oops– Vikki, with two “k’s” I see.

        • Vikki November 2, 2015 at 8:18 pm #

          Yes Jan, my Mom knew I was going to be different even when she named me!
          : )

  15. Yvonne November 2, 2015 at 5:30 pm #

    Sandy don’t beat yourself up too much. MS doesn’t make quitting easier. As counterintuitive as it may be sometimes knowing that there is no cure for what you do have makes you give less than a shit about what you could get. As a result it makes it easier to just say why bother with quitting because it just means adding another opponent to this fight with my body that I’m never going to win. Of course intuitively you know quitting is healthier but giving it up still ain’t easy. Welcome to my battle with sugar. It is not a narcotic but is even deadlier because it’s everywhere. I have been on so many diets and protocols /lifestyle changes over 30yrs and slowly each time I’m back to sugar. Of course I’ll try again because I’ve done it before but…it ain’t gonna be easy.

  16. Kat November 3, 2015 at 10:37 am #

    Vikki, I like what you wrote. Difficult to find some positives as a result of living with MS, but I do like that I am more sympathetic and caring towards those who suffer. I almost feel like we are in a secret sick person club together and we “Get It” and know what’s important. I like how MS puts things into perspective. I also have an 18-year-old daughter and a 15-year-old as well. It makes me happy when I see how caring and understanding my girls are towards me and others as a result of my MS that they have lived with their entire lives. They also help me to want to set a good example for them. Yes, I have good days and bad days and we talk about that, but I want them to see me strong and never giving up.

  17. Vikki November 3, 2015 at 12:01 pm #

    Kat, you are right. And trust me, the strength you have shown, the don’t ever give up attitude, and the need to also have good days, bad days, and everything in between, that is I’m sure reflected in your children as it is in mine.

  18. Sue in tX November 4, 2015 at 9:24 pm #

    I agree, MS enhanced my empathy for others. And I watch My children reach out to other children who need extra support. But I can’t accept such lesson could only be learnt through MS. So it’s bitter sweet to know the origin of their kindness. I have been struggling with the chronic part of ms as of late. A friend, with children the same age as mine was diagnosed with stage 1 breast cancer. Our family sat as witness to her telling of diagnosis, surgery, and chemo. She is a strong amazing woman , who hit the disease back hard with her aggressive treatment. One day my young daughter sobbed unconsolably. She felt so bad for her friend because her mom was sick. She understood the pain deeply. We sat quiet together, we didn’t need to discuss. And for me, I found myself ashamed to be almost jealous of my friend. She had a swift whirlwind life changing diagnosis, but unlike me, she had a timeline. Everything she did was to eradicate the disease from
    Her body, and it appears to be a success. All thank God for this.! She now will start to grow her hair back. She’s gorgeous bald, but hair will mean a return to normalcy. I, however, do not get to have a similar to metamorphous I will not have others congratulate me on my fight and tell others how brave I am. My friend’s illness was an imminent threat of the axe falling, which required swift action, and a “cancer free” declaration after a dirty fight. I continue my own fight against my disease, but the axe which I fear is not swift. You all know that Chronic causes a different suffering, it’s covert at times, and no timeline. So I have no choice but to get up when I fall, and try to emulate my friend’s grit.

  19. Dale November 5, 2015 at 12:04 am #

    I hope we hear from Christopher soon and things are looking up. He always has such an insightful way of looking at things….