To Cope

I have noted that the individuals who have said over the years that I cope with my various ailments very well are those who know me the least. How the hell do they know? These silly statements are goofy because the face the public sees never belongs to the one I see when I shave in the morning. I do not know what they are talking about. Nor do they.

According to the Free Dictionary (whatever that is), to cope means,   “To contend with difficulties and act to overcome them.” Overcome? I don’t think so.  Dictionary.com says it means to struggle or deal…with some degree of success. Really? And what does that mean?

How does any one of us grade himself or herself on the ability to cope? Hell. We need a standard set of criteria to figure that out. So what is the gold standard of coping? There is none, of course, and this seems like a waste of time. Maybe we need to determine how well we are doing for ourselves and leave it at that. As always, we need to stop listening to others and communicate with ourselves. Probably there is more all of us can do to cope. Only self-awareness will help us with that.

My definition of successful coping is to live as close to normally as is both possible and acceptable. I get to decide what works for me. You can do the same. I don’t know about you, but I am tuning people out. Why I listen in the first place is a mystery.

 

Richard on Twitter   rmcjourneyman

 

 

 

 

 

 

24 Responses to To Cope

  1. Nan December 8, 2015 at 9:48 pm #

    Wow Richard,as always, you’ve made a great observation! Part of coping is simply accepting your situation and making choices to deal with it that work for you. Not to be confused with giving in to it. There might be a chorus telling you to take it easy, save your strength, etc. etc. Making your own choices, having your own opinions, and living your own life is the best coping mechanism I’ve found.

  2. Yvonne December 9, 2015 at 11:34 am #

    What’s exhausting is the constant changes people who have a progressive disease must cope. Today is loss of dexterity next is hearing loss next is bladder and so on. And it’s all random not scheduled! How the hell can you cope with crazy disease in a way anyone understands th

  3. Yvonne December 9, 2015 at 11:52 am #

    What’s exhausting is the constant changes people who have a progressive disease must cope. Today is loss of dexterity next is hearing loss next is bladder and so on. And it’s all random not scheduled! How the hell can you cope with crazy disease in a way anyone understands that non afflicted people understand? We lie, hide, pretend not for us but for the people who are watching us “cope”. It’s exhausting. So know I’m honest. I let folks know I resent having MS and pretending everything is OK when my nerves are tingling and everything is painful. I am ANGRY EVERYTIME something else is taken. So I am not coping. There is no successful outcome. I am handling a progressively bad situation that is out of my control.

  4. Sue in TX December 9, 2015 at 1:39 pm #

    “Coping skills” . Maybe that is an oxymoron for MS. How does one build a skill set to deal with constant new challenges? “Coping strategies”, is a better label, I guess and what I try to employ. Yes, Richard, I agree, self awareness is key to coping. I try to Stay present, and find a way to accept my current physical problem, and feeling true gratitude for positives in my life. As Richard says, as close to normal. But I also agree with Yvonne. I allow myself to be angry and frustrated at times. Mad at the unfairness. Isn’t anyone keeping score? After I’ve felt the strength of my anger for awhile, selfishly sinking into its den, I will then steal myself back from that dark place when I am ready. Coping for me has become this see saw, of up and down, light and darkness. Hope and it’s nemesis.

  5. JoanZ December 9, 2015 at 4:21 pm #

    Ok, I’ll say it. The goalposts move every 5 minutes, what worked yesterday doesn’t work at all today. I know I drink too much wine. That’s “coping”. Oh well…

    • Yvonne December 10, 2015 at 4:43 pm #

      Yes JoanZ a Pinot Grigio can get me through some non “copable” times!

  6. Amy Corcoran-Hunt December 9, 2015 at 5:41 pm #

    I think all I can do is try to not make my pretty profound disability somebody else’s misery. It’s mine. Coping means trying to handle it with the most independence I can muster whilst being as pleasant and dare I say it, fun, interesting, and helpful as possible. Largely fakery. Fake fake fakery. But I try to act properly and sometimes I even buy it.

  7. Christopher December 9, 2015 at 10:32 pm #

    I’ve learned a lot from being laid up in a nursing facility for two months. There’s a lot about this part of the world that I thought I had figured pretty well. I grew up around convalescent homes that my grandmother worked in, and have been in and out of the hospital many times over the past fifteen years. But I was really not as experienced as I thought. This is exceptionally hard on everyone involved. Coping is definitely a misnomer. Each day is a series of ups and downs, and every moment has its own emotional momentum and physical obstacles to navigate. I have tried to deal with situations in which I thought being patient and calm would elicit desired results. Instead, most of the time it got me compliments I didn’t want, platitudes I didn’t need and bruises I didn’t deserve. Each new situation called for being acutely creative at problem solving, especially since I’d had no prior experience to go by and also because people are at different perspectives in sense of urgency at any moment. Or I could just yell and scream, and throw a tantrum telling everyone in earshot that they suck. Probably a little south of ideal. There have been plenty of moments when it was incredibly difficult to cope with a situation, but I had to fight hard through a system of walls and my own inertia to make it through. Sometimes you have to make a lot of noise, and kick and scream to get not what you want… but what you need (thank you Mr. Jagger and Mr. Richards). It’s surprising (or not) how much medical professionals really don’t understand about MS, and some other things too but this is about MS. I have been trying to get better for two months now, and fighting with knowledgeable people who go by bad information. Or worse, no information. Two months of stress and fighting to get what I really need. How did I cope? I didn’t. I went from situation to situation fretting the next situation, and trying to change things by learning how to change. A very long, imperfect process that hurts. It’s painful… just like life. It’s not for the squeamish or faint of heart. There is no grace involved when you are trying to get back in bed from the bathroom, and a stoned nurse’s assistant almost drops you on the floor. I guess the only thing that beats it is the comic relief of his ironically comedic comment, “you good?” There were no coping skills involved in that anxiety producing moment, just a need to get through it and move away with as little harm as possible. Instinct kicks in, and in some cases hopefully kicks ass. I could give dozens more examples, but why… I think the point has been made. It’s survival in a very ungraceful and imperfect manner. Coping skills seem like something reserved for those people in television commercials with a perfect version of multiple sclerosis.

    My advice… don’t ever become afflicted with a serious neurodegenerative disease in the first place, or you’re screwed.

    • Sandra Schneider December 10, 2015 at 9:05 am #

      Totally agree, Christopher. It seems that the sicker we are, the more dehumanizing the exeriences we have to endure. People stop seeing us complete human beings. Those of us lucky enough to either not be too bad off, or have a phenomenal support system are said to cope better. No surprise that those people have better coping mechanisms. Unfortunately, I fall into neither of those categories. I am so sorry you are going through such horrible experiences.

    • r. cohen December 11, 2015 at 9:03 am #

      Christopher-

      Do you keep a journal? Yiou should, just for your own head but also because your observations and skill at expressing yourself are excellent. I believe p eople want tol hear from each other far more than pouring through what doctors have to say. You have a talent.This would be good for you.

      R.

      • Dale December 12, 2015 at 12:36 am #

        I ‘ve said the same, Christopher you are fantastic at articulating so much of what many of us feel. I really wish out could get that blog back up and save all the entries but at least compile all your contributions here.

  8. Pam I Am December 10, 2015 at 3:05 pm #

    Interesting discussion. I think I cope with the MS rollercoaster by dissociating myself emotionally from the disease. I was diagnosed 22 years ago and have pretty much gone through the “stages of grief” process several times over.

    Rather than go through the whole denial, anger, bargaining, depression and acceptance routine each time I lose a function, I simply step outside of myself. If it feels like anything–which most of the time it doesn’t–it feels like I’m viewing myself from outside of myself. Like it’s not happening to me–it’s happening to that “other Pam” and so it doesn’t register as another loss. I just shrug and keep doing what I’m capable of doing. Or stop doing what I can no longer do. And just keep moving along.

    Is that coping? I don’t know. Maybe it’s my mind trying to protect me. It seems to work most of the time. It helps that I’ve cultivated a true spirit of gratitude. If I have to have MS, at least I have certain creature comforts and a loving family. I no longer think about “what if” because it isn’t. That “other Pam” is the one who lost her career, her dream goals, her ability to vacation, her fit body and sex appeal. I’m no longer attached to her. I’ve stopped grieving for her.

  9. Louisa December 11, 2015 at 1:49 pm #

    Up until right before she died, my mother who was had cancer and heart disease ( but was very active and somehow “well”) said to me “I still feel like me”. Pam’s post made me think “do I still feel like me or is that woman gone.?” Sadly, The answer is she is gone. I think I had ms several years before I was diagnosed, but I just incorporated the symptoms into my quirky personality. And I still felt like me, I still function pretty well – don’t think anyone who didn’t know would know, if you know what I mean. But I do not feel like me or trust myself. I think the knowledge alone has changed me to my family and friends, as well. In terms of coping …I am doing so much better than I thought I would be on the night of my diagnosis, but so much worse than I thought I would be that morning. It’s a new person who copes with this, to me and everyone else. Fake, fake, fakery indeed, Amy. And gratitude is very helpful. I have creature comforts and a family as well, Pam. And mostly I am grateful to have had the life I had before diagnosis. It was grand!

    • Sue in TX December 11, 2015 at 8:46 pm #

      Yes, Louisa, I agree. PAm I Am’s statement about the other Pam, made me think. I know I am not the same Sue as pre MS Sue. To me or to others. I felt Pam took the words from out of my mouth. This sue here lost her career, dream goals, vacation fun, fit body too. But I haven’t figured out who this new Sue is. What should fill the place of these things? Gratitude helps and Mindfulness. But I remain undefined.

  10. Jan1 December 11, 2015 at 4:08 pm #

    Recently a really good friend of mine told me of a quote she heard by someone who has no health challenges that she, “Does not trust anyone who doesn’t walk with a cane.”

    I found it rather interesting in that while we here may indeed have obvious issues, the litmus test may be coping by relating and being real, relating to others regardless of circumstances. By being human.

  11. Pam I Am December 12, 2015 at 2:33 pm #

    After reading some of your comments, and then re-reading my own posts — it just hit me. No wonder my husband told me he doesn’t see me intimately as he once did. If “I” no longer see myself or experience myself as myself, then quite naturally that dynamic would also affect “his” view of mel! [Well, d’uh! ~ Captain Obvious}

    I don’t know why this didn’t occur to me before. I guess I was just hurt at the raw honesty of it. Because I’m normally “faking it” (yes, Amy) or distancing myself emotionally from another MS loss, my husband’s very real comment caught me off guard and I actually felt it as the “other Pam.” I felt the loss for the first time in a long time and it reminded me that MS is ugly, and vicious; thieving and unrelenting. Something I need to forget in order to survive.

    Good grief, (no pun intended) can I blame my husband for grieving my MS in much the same way that I do? No. I can’t.

    At the end of it all, he’s extremely good to me and makes sure that I am as comfortable as I can be. He is honest with me, even when the truth hurts (as it so often does). It turns out that his view of me depends more on how I view myself than I realized. Something to think about.

  12. Jan1 December 13, 2015 at 8:50 pm #

    Very insightful last paragraph of yours, I will admit, Pam I Am.

  13. Yvonne December 13, 2015 at 10:28 pm #

    I agee with Jan1. That last paragraph says it all. Thanks for sharing your insight Pam.

  14. Louisa December 14, 2015 at 8:56 am #

    Yes, Pam., yes. And my view of MS – not necessarily my MS – made me give up too much too soon. I absolutely feel that I went into that first MRI machine as one person and came out another. I remember after that MRI my husband, who was in the waiting room, apologized to the technician for some innocuous transgression or something and the technician replied. ” don’t worry about it, you have enough problems”. On that day, I became a problem.

  15. Jan1 December 14, 2015 at 4:17 pm #

    Oh Louisa, I feel like crying for you… and for all with such health issues as we here with MS endure. If it isn’t enough to be in that lonely, claustrophobic MRI tube, what I think is truly worse is the internal emotional battle.

    As a Christian, I should not blink twice re dying and then heaven. But I am still here, human, and with people to know, things to accomplish that make my perspective more — I think the word is — steadfast. It’s a problem that I cannot work FT, but I, you, others are ourselves not the problem. No.

  16. Sue in Tx December 14, 2015 at 11:20 pm #

    I appreciate your observations too, Pam I am. And Christopher’s and you all. I think We all benefit from the candid and at times, quite astute observations put here. It help sheds light on this path.

  17. Sandra Schneider December 15, 2015 at 8:01 am #

    I’ve read all of our comments again. And I am beginning to think that the “Coping” is more for those around us than ourselves. Are we mostly coping to make MS less ugly for friends and loved ones, or even strangers? What would happen if we just stopped coping so well? What would that look like? Would it be horrible or a relief? I may be way off base….

    • Pam I Am December 15, 2015 at 12:30 pm #

      No, I don’t think you’re off base at all Sandra. I did go through a period where I envied all the people who were healthy and active; it was both horrible and a relief. I totally attend my own private pity parties. I have wallowed in the muck and mire plenty of times. Mostly, I keep it to myself or limit it to MS forums so others never know. I don’t want my loved ones worrying about me more than they do. But I definitely have had my share of crying jags and fist to the air at the unfairness of it all. I’ve been at this for 20+ years now and the older I get, the less I get worked up about any of it. Thus, my emotional detachment.

      People always tell me how “brave” I am, and how I never complain and try to put everyone at ease. But I don’t feel at all brave. I just figure that there are countless horrible things that happen to people every day. MS is just my horrible thing to deal with. I don’t take it personally when I think of the sheer number of awful things that didn’t happen to me each day. Nature is predatory, brutal and unforgiving for most forms of life; being chased and “chasing hope” (TM Richard Cohen). That’s why I find nature shows to be depressing and avoid them at all costs.

  18. Sandra Schneider December 15, 2015 at 3:32 pm #

    Thanks, Pam. Been over 30 years for me. I went with just 1 attack for about 15 of those, so except for the fatigue, I passed very well for normal. The last 9 have been a nightmare of progression. I’m tired of coping, but with 2 school aged kids, faking it and tons of laughter is an essential part of keeping their lives as normal as possible, Well, as normal as possible with a Mom in bed most of the time and forced to use a motorized chair.