Pyrrhic victories

When do we say to ourselves, I just can’t do this? Many of us keep trying, pushing ourselves to the limit and refusing to give in. Our motivations probably are similar if not the same. We do not want to lose to a disease we cannot see or cede control when the enemy is profound physical limitations.

I long have believed there is virtue in fighting the good fight.   This is not performance art, however. The real audience is wearing our shoes. We struggle to preserve a life and flourish with dignity. Feeling good about ourselves is its own reward. And so we keep going.

But is there a point where the struggle must cease? I increasingly am aware that pushing myself at the wrong time in the wrong place only can lead to a Pyrrhic victory. I left the neurologist’s office the other day after a strenuous PT session. I was done in and knew it. Instead of calling a local car service to get me to an appointment, I chose to walk down the hill, always risky, to a busy avenue where I could hail a taxi.

An hour later, I had not traveled the short distance. My legs were shaking and close to giving out. There was no place to sit and not a taxi in sight. I knew I was about to fall. I just stood there, my body slumped across the filthy hood of a parked car. A female voice behind me said, we’ve been watching you for a long time. Do you need a ride somewhere? I glanced to the side and saw a parked van with a pleasant looking fellow behind the wheel. They rescued me.

My stupid decision to set out on foot had been counter-productive and dangerous. I was putting myself at risk. And what did I accomplish? Nothing.   I have to learn or keep learning to choose my battles carefully. Fighting wars we cannot win seems to be a staple of the ruling class in this country. You and I can do better. We have the power to bring common sense into our personal lives, and we should do just that.

 

 

34 Responses to Pyrrhic victories

  1. Betty May 15, 2016 at 12:40 pm #

    Impeccable timing. How much longer, and harder can I try; crash, cry, swear, and at best survive, only to consider it all again? Synapse. Desire. A haphazard risk analysis. Go. No go. Shelter in Place. Stuck in a repetitive loop in my head. I know better. Who needs it? I do. “But you have a lot to lose”. Really? It’s called my life Bozo, and I want it back, even if just for an instant.
    But it happens. Something feels different. Better, lighter, tighter, clearer? So try it. Go for it. “Ah, but you’ve been fooled before”… Until last year I was fighting the good fight. The hope thing. I’d never say no. I’d get a 24 hour head-start on everyone else – just to show up, and “look so good”. I’d put on a smile, and mostly mean it. And 90% of the time I would enjoy myself.
    I live in the Northeast, where winter has a way of burying things in the darkness, and under the snow. Things like enthusiasm, fresh vegetables, and disease progression. Ok with me. I needed a break. But summer 2016 is here with celebrations, sun and sandals, gardens, sports and socializing; all the things I (used to) look forward to. (Choking). Every fresh, bright, sunny day I am sad, and feeling further away… from what? Me? It’s hurting more, and more to be a hero. Maybe this is when Pollyanna throws in her towel, and stops worrying about the laundry all together.

    • Janelle May 16, 2016 at 5:26 pm #

      As my husband (PPMS) learned the hard way: it’s not about trying harder, it’s about adapting differently. Adapting to MS changes doesn’t mean you aren’t fighting, it means you are meeting the symptoms where they are at now. Best wishes, we have been in your shoes and are just farther down the path…..

      • Ann May 17, 2016 at 12:43 pm #

        Thank you Janelle. I needed to hear this today. I should make a sign for my house to remind myself.

      • r. cohen May 17, 2016 at 2:28 pm #

        You are fighting smarter. We should take note.

        R.

  2. Betty May 15, 2016 at 2:48 pm #

    To clarify. Bozo is me. 🙂

    • Jan May 17, 2016 at 8:04 am #

      Really liked your reply and wisdom, Janelle. I took note.

      • Janelle May 17, 2016 at 10:45 am #

        Thanks, Jan 🙂

  3. Jan May 15, 2016 at 11:13 pm #

    Richard and Betty, just what were you two thinking?

    …okay, likely things similar to my second recent warlike dance in which I tried to garden a bit in the heat of the day, no less, to prepare for my husband’s return from an out-of-town work trip. Two feet from the door, I melted into a sitting position just outside of indoor air conditioning. Couldn’t get up. Two feet that felt like a 1/2 marathon. Struggled to get inside on a gravel pathway (with the skinned toes and knee to show for it. I later cleaned up some blood on the bathroom floor that at the time just appeared to my Uthoff’s eyes as dark dirt. Oh, so that’s what that was).

    Yes, while I trimmed a few things, I mostly accomplished foolishness and a stubborn desire to fight (regardless of the risk or common sense). Your car hood; my airline breezeway with passengers watching while lined up to retrieve baggage; fun summer activities.

    So for me, it’s now a matter of maintaining the fighting spirit but within truly doable and changed, common sense boundaries. (Not easy). Funny thing is that others really don’t think so poorly of me as I do of myself/the physical limitation enemy.

    Perhaps the key is to “fight THE GOOD fight,” the doable fight — and to mind the difference between that and a foolish one. .

    • r. cohen May 17, 2016 at 2:31 pm #

      I guess the good fight is in the eyer of the beholder.

      R.

  4. Sandy Stolaronek May 16, 2016 at 1:38 pm #

    I’m pretty good at knowing my limits but on a good day, those limits might get pushed a little bit, as my MS tells me. When I think I can do a little bit more than I should, my MS slaps me in the face and lets me know who’s boss. It just seems to taunt me and allow me to think that I am still who I used to be. Then, when I’m not looking, it laughs at me and lets me know who I am now and that was the old me, don’t be silly! “Who do you think you’re kidding”, it says, “I’m still here and I’m not going anywhere!” It’s like, how dare you allow yourself to believe that you can do the things that normal people can do. So I guess I have learned my lesson about overdoing it. I realize now that I can only do one or two things a day and whether that is taking a shower to go to a doctor’s appointment or go to the grocery store to pick up a few things, while riding an electric shopping cart, I know that’s it for the day for me. Despite taking Nuvigil and Ritalin every day, my stores of energy get used up all too quickly. Recently, over the past year, my decline has given me new normals. I find but I am doing less and less and staying in more and more. I make appointments for a much later time in the day now, as it takes me until late in the afternoon to feel human again. But no matter what my new normal is right now, for some reason, I keep thinking that it’s going to get better or at some point I’ll have a good day where I can get up earlier and get ready earlier, to go somewhere. Maybe it’s just a fantasy in my mind, but a person can dream can’t they?

  5. Lyla May 16, 2016 at 5:14 pm #

    I am all too familiar with the temptation on those “good” days to be the strong, capable me I was before MS became my fickle dance partner. There are days when I can pull it off – sort of. I do set some limits for myself, but if my caffeine intake pushes me much past 2:00 and I haven’t turned into a pumpkin I am difficult to stop until I can barely move. I wonder why I don’t know when I need to slow down until I have to? Even after several years of actively wrestling with mobility, fatigue and all the other crazy-making symptoms that pop up, I still over-do it.

    To be honest, there are days when I am truly afraid of what would happen if I stopped and just sat down, afraid I wouldn’t be able to get up again.

    So I come here and read and think, I am not alone and continue on. There is always something to be grateful for, even if it is a memory.

  6. Jan May 16, 2016 at 9:23 pm #

    Yes, true. I do not see MS as taking away memories, gratefulness (just changed perspective of what that really means), or joy of heart.

    Lots of activities and normalcy, yes. But a new normal, a new relational normal, I suppose.

  7. Dale May 16, 2016 at 11:25 pm #

    Richard you just need to take that wheelchair and put some flames on the side. I desperately did not want to use one untill I realized it got me the best seats at the hockey games. Now it’s selective. I’m so resistant to showing any ‘weakness’ that I missed the fact most don’t perceive using a wheelchair as a weakness at all.

    • r. cohen May 17, 2016 at 2:35 pm #

      The only wheelchair around here is in my worst fantasy.

      R.

      • Dale May 22, 2016 at 12:05 am #

        Might be time for an attitude adjustment… there’s been a few cool hero’s in wheelchairs, Ricardo Montelbalm in Spykids, Pierce Brosnan in Percy Jackson, Ramond Massey in Ironsides. Time to get some more role models out there. You would be a great one, Richard….

        • Dale May 22, 2016 at 12:08 am #

          Oops Raymond Burr. Raymond Masseyy was a different actor.

      • Janis June 9, 2016 at 8:33 am #

        Richard, I am a full time jazzy user for 14 years. It’s Freedom, but not just for me but for my friends and family that I can enjoy anywhere

  8. Ann May 17, 2016 at 6:45 am #

    Dale, I second your “flames on the sides of the wheelchair”. I always wanted to contact Harley Davidson and get an insignia for my scooter. I always thought they should enter the scooter market but then we wouldn’t be able to afford them:)
    My madness with all this is the fear that if I give up doing something, I will be unable to do it after a brief time not doing it. It will never come back and I will have lost one more ability. It makes me stupid sometimes and I can push to much.
    Christopher, haven’t heard from you lately – I pray all is well, as well as well can be.

    • Dale May 17, 2016 at 11:32 pm #

      I get that. I really do. There is something to ‘use it or lose it’ . I’m lucky as I’ve always had good upper body strength. I tell my daughters it’s from falling out of boats my whole life and having to get back on. Now my husband doesn’t bitch so much about the pull up bar at the entrance to the spare bedroom though, just couldn’t get why girls needed to do pull ups. But not being able to run or even walk short distances is truly killing me. The loss of balance has eliminated a lot of things I wanted to teach my kids by showing, not just describing. I realized if I fall and break something I’m really screwed. I just wish I was more financially well off, I have so many designs in my head to improve adaptive dogsledding and sailing but no time to implement. Ah well, if wishes were horses. At least I still have a job that means something.

  9. Kat May 17, 2016 at 8:33 am #

    Haven’t driven my scooter accessible van in three months. Just became so hard to transfer from scooter to seat. Can’t get my seatbelt on. Right turns are a bitch due to a weaker right side. Have felt some improvement. So made the choice to drive the two minutes from my house to an appointment. The drive there was a breeze. I felt exhilarated and so happy. Tired after my appointment, so transferring from scooter to driver seat took about 20 minutes. Not great, but better. I am cautious. Felt great to accomplish what healthy people would think is a no-brainer. I have been where you have been. I understand how you feel. Using the walls to navigate. Then walking with a cane when I really needed a scooter. Hard to know when to move to the next stage. So hard to let go. Yes, memories are always there, but they can be sad because you miss your independence. People are kind and helpful when they see you physically struggle. New Yorkers have been the best in my experience.

  10. MB May 21, 2016 at 1:34 am #

    The worst fantasy wheelchair comment reminded me of the time my friend said she’d rather be dead than in a wheelchair. Strange how others view my situation as their own worse case scenario.

    • Louisa May 21, 2016 at 10:45 pm #

      I agree MB! I mean talk about “knowing your audience”.

    • Dale May 21, 2016 at 11:57 pm #

      I came to the realization if I injured myself trying to keep up with my projected self image it would do more damage to others, my family, my staff, my friends because I might not be able to do ANYTHING. I was more worried about my kids reaction to their cool mom who did all this neat stuff suddenly being in a wheelchair. Then my daughter said “Mom, forget it. You still a ninja and everyone knows it”. With that once simple sentence my attitude changed completely.

      I’m trying out the chair now and then going out to eat, shopping or at sporting events where there’s much walking involved. This was a huge emotional leap. Now I’m trying to embrace it. So many that need one are in such worse shape. I’m volunteering at the Falmouth Road Race finish again this year but this time hope to meet some of the wheelchair racers if I get the chance. Maybe get someone to push me to raise funds next year. Think I’d make a good prop if I do say so myself, especially if I can get those flames going.

  11. Michele Penz May 21, 2016 at 5:48 am #

    Richard, this is one of my favourite blog posts of yours to date. It resonated deeply. I’m also enjoying reading the comments and learning from other perspectives. Adapting to my limitations is something with which I’ve been wrestling for the past few years. I paid a high price for trying to exceed them in 2015 by perpetuating the facade of normalcy. At the end of that grueling year, I “came out of the closet” about having MS…to my clients and colleagues. It’s been liberating. And now that I’m finally releasing some of my former high expectations of my physical self, I am functioning a little better…at least for this day.

  12. Kar May 22, 2016 at 12:57 pm #

    The dread of a wheelchair is much worse than the life in one. When I got mine, I felt like a teenager with a new drivers license – I could go anywhere, anytime, without asking anyone. Years later, I find it annoying how slow able bodied people walk.

    • Dale May 22, 2016 at 11:40 pm #

      I noticed that too! Try not to run them over. Critiquing handicapped bathrooms has become something of a sport now. Most doors are too heavy to easily open. Some positioning of rails render them almost useless. It’s pretty clear, along with new car models, the folks that designed them weren’t particularly handicapped.

  13. Kat May 23, 2016 at 9:59 am #

    True and frustrating in regards to the inadequate handicap bathrooms. Every time we travel, we request a handicap accessible room. We then call again before arrival to confirm that we have a handicap accessible room reserved. Upon check-in we confirm again. Upon entering the room 99% of the time it does not have an accessible bathroom. So we learn not to unpack bags until we check out the bathroom first. We always end up having to be switched to a different room. Also why do hotels always feel the need to make the handicap accessible rooms overlooking the parking lot or air-conditioning units or above the restaurant bar. The last time we were in Manhattan staying in an accessible room of a lovely hotel. Our room was located above the restaurant bar. The bar had Cuban music blaring until 2 AM We just have to laugh.

  14. Dale May 24, 2016 at 11:31 pm #

    I’m heading to Switzerland end of next month with a walker as carry on, that seems to handle most needs. It will be interesting to see what their idea of handicapped accessible is though, it’s not a modern hotel. Not sure what kind of music they’ll have either but won’t mind much as long as there’s that bar….

  15. Ann May 26, 2016 at 6:54 am #

    Dale,

    I hear the people of Switzerland are very kind souls. My cousin’s daughter lives there with her husband. I believe any lacking handicap accessible options will be compensated for by the kindness of strangers. Be sure to take note on new ways to deal with challenges from another viewpoint (Switzerland’s) and smile frequently on your trip. I wish you much joy and adventure on your trip. Be sure to educate us on your return. And yes, music and a bar are always a good fall back:)

    • Dale May 26, 2016 at 11:48 pm #

      Thank you Ann! One place in the world I’ve yet to see, but most of my travels involved no issues walking until recently. The encouragement is helpful, I’ve heard likewise the folks are very kind. Scenery is great but most of the stories tend to be about the people we meet. I just don’t want anything to hold back my family from taking advantage of hiking, etc. I’ve had a life full of adventure so OK with just hanging out and letting go of the daily castle siege at work for a while. Music and a bar would help that indeed. 🙂

  16. Dale June 2, 2016 at 10:58 pm #

    Wow sure quiet lately, hope all are well. Miss hearing from Christopher too. Hope spring has brought everyone some positive outlook vibes. I know attitude is everything but sometimes we have to work at it. At least I do. My old surfboard is about to become a coffee table. One can never have enough coffee tables.

  17. Jan June 4, 2016 at 10:22 am #

    Hi; just really swamped and dealing with a lot of stress, including health. But at least working toward more calm, one day at a time.

  18. Ann June 5, 2016 at 8:52 am #

    Good morning:)
    Jan, Sending prayers and good thoughts your way. At least you can define your goals. Best wishes for a successful transition.
    Dale, No coffee tables here. I would never get around my home if I had them. Happy to hear you can still enjoy them:)
    I finally completed wading through my health insurance nightmare. I will call it a success because I got insurance. I’m not sure about the stress it creates over the next couple of months. I now need to pay 600.00 for monthly premiums and also get to pay 1400.00 on health care before the insurance works. Oh well, I’ll cash in some retirement, pay the penalty on my taxes, and order my medication. That should help me be more appreciative:)
    I hope everyone has a good day.

  19. Jan June 7, 2016 at 11:19 am #

    Thanks, Ann… you are dealing with a lot — so sorry to read about that, and you take care.

    My head, walking, pain, and vision are worse. Of course the hammering from getting a new roof due to hail damage isn’t helping at the moment! Yet still grateful to have a roof over my head.