Clarification

May I clarify one point? I am regularly chastised by a doctor friend for demonizing the chronically healthy. I see it as a catchy phrase, referring to those around us who are blessed with good health and move around, eyes straight ahead. They do not see us. We are not on their radar screens. There is nothing new here. They are not bad people, and I want nothing from them. OK?
A smile and door held open would suffice.
I, for one, want my private battles to remain private. I like it that way. I feel hesitant to overburden loved ones, but there is a larger point. I inhabit my own world. I keep lines of communication open but share only to a point. I am not hiding a secret life, only holding thoughts and perceptions close to the vest.
Each day I go out is a journey. New obstacles abound. I deal with them. No big deal. I do not talk much about them. They are boring. I wrote that there are no bad guys here. Why do some protest too much? I am comfortable in my skin. I wish others felt that same comfort and stopped focusing on the term, chronically healthy. It does not translate to war criminal.

39 Responses to Clarification

  1. DianeT April 2, 2015 at 9:24 am #

    Well Richard, I’m going to tease you a little and say it looks like the curmudgeon is back 🙂 Your last tweet was definitely a breath of fresh air (“Spring has sprung, bounce in step, season of good things, perhaps there is hope…”). I had to read it twice to make sure I had the right blog – Ha! I will never expect you to be Pollyanna, and I, myself, am a bit of a “glass half-empty” type person, but I loved hearing that sliver of optimism in your observation. I know it’s too early to tell, but I wish for you (and all of us) that frisson of hope for the stem cells to do their work. Cheers!

  2. Louise April 2, 2015 at 10:06 am #

    I hear you. Just because you’ve named them doesn’t mean you wish them ill. (Pun intended). I, myself, think of them as the” presently healthy “because good health is really only today’s good news. Maybe if everyone kept that in mind, we’d see more empathy or maybe it is with that in mind that people turn away from the sick. “There but for the grace of God…” And no one really counts on the grace of God.
    I guess I am in a funny mood today because last night on PBS news they did a story on Canada’s new right to die law and guess what condition afflicted the profiled candidate..
    Right, MS. And talk about wanting your battles to be private…it was so hard for me to watch that with my husband in the room. He pretended to be distracted by his phone, but he wasn’t.

    • rm cohen April 2, 2015 at 1:19 pm #

      Tough for everybody. Some things are better not shared.

      R.

  3. MB April 2, 2015 at 2:24 pm #

    I’m one of those who think about the chronically healthy because that’s who I once was and frankly, it was great. I don’t view them as war criminals but as fellow life warriors who missed getting hit by the arsenal of disease bullets flying around out there. They were lucky but the MS one got me.

    I admit to being a chronic complainer and a bit of a curmudgeon on your blog, but no one would ever know that outside of this forum because I too keep my inner struggles private. But this place is where I feel I can wear my heart on my sleeve and not pretend having this dreaded disease is a minor inconvenience. It is horrible, but I don’t have to explain that to anyone here because they all know it.

    So your clarification of the chronically healthy not being Hitleresque is duly noted. Hey, some of my best friends are healthy and I like them just fine.

    • Richard M. Cohen April 3, 2015 at 8:54 am #

      Got it. Just keep going.

      R.

  4. michael April 2, 2015 at 2:40 pm #

    I’m so healthy I make myself sick.

    I wish that was a joke but it is not. After a few (21) years living with my wife who has progressive MS I noticed that I started to convince myself that I was always tired. I used to jokingly say that I had Lyme or Epstien Barre syndrome. A few years ago I had an epiphany; she is really sick, I’m just acting like an ass.

    On a side note here’s something I have observed. People in my life, even those closest to us believe that in some bizarre co-dependant way I am keeping her from getting better by being overly helpful.”Stand on your own two feet” works great for the chronically healthy, people with MS do not have that option.

    I seldom mention it anymore. Thanks for listening, it truly weighs heavy on my mind. Might even be making me chronically fatigued 😉

    • Richard M. Cohen April 3, 2015 at 9:05 am #

      You are not keeping her from getting better by acting as he best friend. Keep going. She needs you.

      R.

  5. Christopher April 2, 2015 at 3:00 pm #

    I see those people with more of a sense of pity. Sometimes I catch myself moving through groups of people as if a leaf on a river moving past jutting rocks–they are the rocks. I’m not sure why exactly, but I feel sorry for so many of these people who seem to take mobility, continence, and many other prime health attributes for granted. I was pissed off… seriously pissed off when my forward momentum slowed to a crawl. Still do sometimes. But then a random series of things happened to me that could never be linearly charted by even the most intelligent statistician who ever lived–so basically I have no clue how to recreate how I arrived where I am now. But something totally crazy happened from it all… I’m happier. I was a rat chasing after scraps like most everyone else before all of this mess of a physical insult. Now I am still a rat, but I’ve cleared most of the detritus from my cage and I’m living leaner… not meaner. I see a lot more of my own life much clearer now, not better just clearer and a lot less stressed. Most of the ‘stuff’ from before just isn’t really that important now that I really have to focus to operate in each day. And lots of new things keep popping up and really engaging me. It’s like a new life and my happiness, as a sum of many parts, has increased. I also try to keep my suffering and foibles on the DL as much as possible. No need for it anywhere–it doesn’t improve or clarify anything. It just is.

    Don’t get me wrong… I’d love to go running on the beach or ride a bicycle again. Or go to a show without having a pair of Depends with me. And I’m certainly no finding-god-in-desperation apostle (I don’t recommend becoming disabled or sick for self improvement). But I definitely don’t see healthy, able-bodied people as gifted or privileged. Nor do I see them as tyrants. I see them as particularly clueless. Kind of like teenagers heading off to Spring Break for the first time. I know I will feel bad for them if and when something goes kablooey.

    “I told you so” would just be exceptionally cruel.

    • Richard M. Cohen April 3, 2015 at 9:13 am #

      You are on target as always. Our value system changes and we grow. And you are more self-aware than most.

      R.

  6. Hilary D April 2, 2015 at 7:16 pm #

    Feel same way. Why does it seem people with other diseases love having their illness in the spotlight. They use it for attention. I’m insensitive, I know. I am sick of people asking for pitty with illnesses that for the most part have cures.

    Time to put your big boy pants on and suck it up people. Trying “walking” a day in my shoes.

    • Richard M. Cohen April 3, 2015 at 9:14 am #

      Well said.

      R.

    • Yvonne April 4, 2015 at 3:15 pm #

      You must know my sister. I sometimes think she’s jealous I have MS because I always have something to complain about but rarely do. She finds ANY reason to claim fatigue,leg pain, shooting pain anywhere yada yada yada. I have to constantly remind her that’s my life everyday and no pill,shot or operation will ever give me relief. So I say “please” healthies”, give us a break when you have the “sniffles” I feel bad you’re not well but empathetic I am not.

  7. Rosanne April 2, 2015 at 9:00 pm #

    I believe “healthy” people act that way because they are afraid and don’t want to face their own mortality or, God Forbid, they will ever have to walk with a cane or use a wheelchair. Often, when I walk into a grocery store and someone is coming out the same door, there is actually a look of FEAR on their faces – most stop and hold the door, others actually start to walk faster and won’t look at you. I laugh.

    • Richard M. Cohen April 3, 2015 at 9:15 am #

      Except that it is pathetic more than funny.

      R.

      • Rosanne April 3, 2015 at 1:07 pm #

        I agree. Tried to edit my post and couldn’t.

    • Dale April 3, 2015 at 10:25 am #

      They don’t know any different. So they don’t think about it. When folks are in temporary pain they pretty much forget about it once the pain is gone. Like having a baby. If we seriously remembered what that was actually like there would be a lot more only children in the world.

      I will say someone hitting their thumb with a hammer still evokes the same sense of anguish in me. At least childbirth results in a cool (albeit expensive) prize at the end.

      So it’s not so much a lack of compassion or empathy, it’s just simply not on their radar screen.

      We woke up on the right side of the grass today. A lot to be thankful for. Someone please remind me of that down the road.

  8. Betty April 3, 2015 at 10:16 am #

    Here’s a slice of life. I was struggling, stumbling with trekking poles through a double doorway of a convenience store; heading to the ladies room (of course), and praying I would make it in time. Heading towards me was a scruffy middle aged man carrying two 1/2 gallons of cheap wine, with two cartons of cigarettes tucked under one arm. We made eye contact. Sized each other up; who would or could take the lead, open a door, and hold it, or not, for the other? It was an interesting moment or two. He paused, and stood back politely as if to ask, “What do you need?” I realized I was I was doing the same. No judgment, just survival. We worked it out.

    • michael April 3, 2015 at 1:16 pm #

      That was a really nice way to see things Betty. More of that from everybody would be great.

  9. Jan April 3, 2015 at 3:08 pm #

    Feeling slightly guilty (or just frustrated), doctor? No need to…

    Richard, if your doctor friend is bothered by your terminology, I offer my personal experience that can distinguish between “healthy” and “chronically healthy,” the latter referring to a “constant, habitual, and inveterate condition of health.” (I added slightly to my online dictionary).

    A condition. Perhaps of ignorance/cluelessness/arrogance even, given an opportunity to see or act with even a baseline of empathy. (No, my last name is not Webster).

    I think it’s great when others can experience and enjoy health. But I’ve also encountered some who don’t take the time to listen when they ask and who “don’t see” (a heart, not visual, thing). I don’t see “chronically healthy” as demonizing all who are healthy, but simply a way to distinguish between, say, healthy people and those who may miss others’ reality when given the chance to better understand or care in some way, however small.

    And I’m not judging them, either—some just truly cannot understand for whatever reason. I’ve come to accept that it just may not be in their DNA or something. I just try to accept that they can only understand what they can understand and not blame, be frustrated, or feel inferior as a result.

    So to me, “chronically healthy” is not so much a judgment call (to offend a doctor or anyone else) as it is a plain fact. I myself could be accused of it if I don’t key in to having empathy for whatever other condition I see in another.

    I personally don’t take issue with the term (and try hard not to with the people it describes).

    • Richard M. Cohen April 3, 2015 at 4:15 pm #

      Frankly, I think it is much ado sbout little. It is only a shorthand catch phrase to refer to those who choose not to seer us. No capitol crime, even in Texas. On the other hand, you never know who they will execute down there.

      R.

  10. Jan April 3, 2015 at 6:11 pm #

    Yes, likely as you said, “Much ado about little.” And I won’t comment about the rest!

  11. Erica April 3, 2015 at 6:20 pm #

    Many more people walking around with invisible challenges. I have MS, but rarely have any symptoms and am otherwise healthy. So which judged bucket do I fall into?

  12. MB April 3, 2015 at 7:30 pm #

    It’s all a matter of perspective. If you have an illness with rarely any symptoms and are otherwise healthy, then I’d probably put you in the same bucket as those who get cold sores. The virus that causes them never goes away, they are bothersome when they appear, but are pretty much forgotten until the next one arrives.

    • Erica April 6, 2015 at 4:33 pm #

      Absolutely never forgotten. I wish.

  13. Dale April 4, 2015 at 8:51 am #

    Today I’m not going to think about MS. In fact I think I’m going to take advantage of all this Easter candy and stock up for the coming chocolate shortage.

    Take care everybody.

  14. Christopher April 4, 2015 at 5:22 pm #

    Sounds tasty.

    • Dale April 5, 2015 at 12:55 am #

      Especially with Courvoisier.

  15. Betty April 4, 2015 at 9:29 pm #

    From The velveteen Rabbit
    He said, “You become. It takes a long time. That’s why it doesn’t happen often to people who break easily, or have sharp edges, or have to be carefully kept. Generally, by the time you become Real, most of your hair has been loved off, and your eyes drop out, and you get loose in the joints, and very shabby. But these things don’t matter at all because once you are Real you can’t be ugly except to the people who can’t understand.”

    • josie April 6, 2015 at 12:55 pm #

      Thanks for that, Betty.

  16. Jan April 4, 2015 at 9:32 pm #

    Nice, Betty!

  17. Yvonne April 5, 2015 at 10:36 pm #

    Love it Betty! “Today you are you. That is truer than true. There is no one alive that is youer than you”-Dr. Seuss. Our uniqueness be it disease or a prodigy is what makes us different but special. Unfortunately we don’t get the choice.

  18. MB April 6, 2015 at 6:19 pm #

    Crips and now gimp? (Twitter reference) Might as well throw in freak, too. On second thought, don’t.

  19. Dale April 6, 2015 at 6:25 pm #

    Hey Richard, only 2 months until the start of the Cape Cod Baseball League season. You don’t need perfect vision to relate to some of the umps. Even gimps like us can enjoy nachos and fake cheese at those homey ballparks.
    Sooo much more fun than Fenway or Frankensteinbrenner land.

    With two in college I’m searching for Ellsbury’s autograph from his playing with the Falmouth Connodores when my daughter was in their baseball camp. Figured some Yankees fan might like it in exchange for, oh, a semester’s tuition or so.

    Yeah, that last last tweet got to me. I almost bit the head off my chocolate bunny.

    • Dale April 6, 2015 at 6:26 pm #

      Commodores. Time to get my eyes checked.

  20. Yvonne April 6, 2015 at 6:56 pm #

    Speaking of gimpy,how many pairs of shoes do you ruin because of drop foot? I still love getting mani/pedi to show off my flat sandals since heels are out of the question. My right foot twitches like hell but I finally found someone who understands and does a beautiful job. Problem is my toes look good but my right shoe gets battle scars after a few wears and I am embarrassed when people admire my pedicure (recently had yin-yang painted on my toes) Anybody else ruining great shoes because of foot drop?

  21. Betty April 6, 2015 at 7:33 pm #

    Boots and shoes. Double jeopardy because it’s hard to find a fit, and styles that don’t trip me up. I pay the long dollar only to scuff and scrape them mercilessly on the first time out. I’m looking forward to summer and my favorite flat sandals that are much easier on and off than winter clunkers, and closer contact helps the cause. Barefoot is better. For that matter bare all over is better. Ties, laces, buttons, zippers, hands above my head, or my head between my knees just to get dressed. Really? I may try some muumuus next.

  22. Dale April 6, 2015 at 10:06 pm #

    Last time I painted my toenails was just before questionably needed but recommended thoracic surgery, which ended up inspiring a relapse that took me from occasional cane to full blown rollator and sometimes wheelchair in a matter of weeks. That was the end of sandals, they don’t work with the kneehigh soccer and ski socks now used to lift my legs enough to dress.

    Somewhere there’s an invention worthy of Sharktank in all this. The Bioness 6000 is too expensive to keep shoes nice though.

  23. Yvonne April 7, 2015 at 4:17 pm #

    I have found a good shoemaker who resoles my shoes EVERY year. If I paid good money for a shoe I need it to last more than 2 seasons and the sandals are cute as I rollate my ass around town. If ever I need to get a wheelchair I’ll be wearing stilettos:-) Girl needs something to feel pretty in a wheelchair!!

  24. Rachel Riggs April 9, 2015 at 7:28 pm #

    I feel exactly as you do. I share very little. It is boring. And I am now invisible.

    It’s a matter of self preservation in part, because I can’t bear the often ignorant response or lack of response. And because when someone chirps a “how ya doin’, they generally want a response of “great”. On the rare occasion that someone REALLY wants to know how I’m doing – it’s obvious.

    And I am only now beginning to resent the chronically well. Not because they are well, but because they don’t seem to understand the great fortune that has been bestowed upon them. And because most think they are immune from such a fate as MS. Moral superiority, perhaps.