I do Remember

My last blog post, dealing with permanent loss and reliving better times, seems to have struck a chord. I am not surprised. That is an emotionally charged subject. MB writes, asking, “Why do some of us regularly revisit our memories of being healthy? Why do we find ourselves more disillusioned than hopeful?” Memory wields a double-edged sword.
On one hand, for some, there is little more than pure pain when we watch reruns in our heads, chronicling our days of health and happiness. Life sure seemed simpler then. Yet, I refuse to forget. I cannot let go. There are old photos on my computer that I look at occasionally. One is of me standing with PLO fighters in Beirut during a lull in the fighting. The photo calls up memories of panicked sprints through the streets and seeking shelter.
Another photo is of me on the Great Wall, with miles to go before we could climb down. If this sounds narcissistic, these photos are stored electronically and do not hang on my walls. These are remembrances for quiet times, and they do not make me feel bad. Yes, they harken back to days gone forever. But at my age, planning to relive these moments would be foolish fantasy.
To look at these mementos makes me glad to be who I am because I have been lucky in life. I could bore you to tears with details of what and whom I have covered. But they are private memories, not that I am above telling a self-serving story once in a while. When my kids were young, I would tell tem to gather ‘round so I could tell them about my early years in journalism. They would scream and run from the room. It was great fun.
Our memories are part of who we are, and I believe we need to hold on to them. I want to celebrate. Certainly, I have my moments, such as watching Meredith on snowshoes, heading off on an adventure. I have not traveled beyond sadness. I have a great photo with Walter Cronkite from his last day as anchor of the CBS Evening News. We were heading off to Houston the next day so Walter could ride the simulator with the first space shuttle astronaut. That footage in my head will be available for me to screen for the rest of my life.

47 Responses to I do Remember

  1. michael February 2, 2015 at 2:18 pm #

    I had to retire from my job as Fire/EMS Captain in Providence, RI because had I continued I would have been unable to assist my wife, who has MS. It is a daily struggle to let go of the resentment. I was fortunate, and managed to get a lot done prior to retirement. And I still look at the pictures, even the ones in my head.

    • Richard M. Cohen February 2, 2015 at 3:15 pm #

      I hope you never stop looking. They are important.

      R.

  2. michael February 2, 2015 at 2:41 pm #

    I forgot to mention; thank you for these words. I’m not quite sure how my wife Cheryl truly feels. She hides a lot from me, that much I do know.Just to be clear, the MS and difficulties associated with it harbors the resentment, not Cheryl, she is pretty great.

    • Richard M. Cohen February 2, 2015 at 3:18 pm #

      Of course. That was assumed. I love quting Teri Garr on MS. “A scum sucking pig of a disease.”

      Best,
      R.

  3. Jan February 2, 2015 at 3:23 pm #

    Just responded on your last post and found the new… I think that it’s okay for everyone to have memories! (Maybe you need to get a PC photo printed out for a wall to enjoy more often?) The Live Oaks you likely saw in Houston typically keep their leaves all year, except for shedding and regrowing rapidly in the spring. I understand that “Old Ironsides” was named as such during the War of 1812 because the Live Oak hull sturdily survived repeated cannon fire.

    Feels as if we’re often surviving the rapid fire of MS, does it not?

    So as with the leaves of Live Oaks, our memories can and should stick around much of the time. They’re great and made us who we are. And sometimes we can transform them to grow anew, even amidst the health war.

    Given a choice, of course I’d not want to have this. I still recall hearing the ending cheers of a H.S. XC meet, in a panic to reach the spot, only to hear the cheers of the outdoor medal ceremony, just missing it amidst the angst of finding close parking too late. Seeing that medal photo still makes me cringe. But then I am joyful at the smiles on the faces of the participants and rejoice in knowing that their memories were good.

    It is what it is; today is today, I remind myself. (Remind, not necessarily feel). I celebrate the good memories and try to create new ones as I am able.

    And Michael, thanks for the (needed) reminder that it is the MS that stinks, not I. (I hide a lot, too, as mentioned at the end of Richard’s last post).

    • Richard M. Cohen February 2, 2015 at 4:34 pm #

      I guess we all do.

      R.

  4. Jenny February 2, 2015 at 3:35 pm #

    I do remember too. Hurdling, playing basketball and volleyball, coaching various sports, teaching PE-health-sports medicine…..wonderful memories to hold on to. I don’t think this is necessarily an MS thing. We are all aging and I know that “remembering” our healthy self also equates to our younger self. I do wonder what I would be like if I was an MS free 50 something year old woman however. I wonder what it would feel like to walk normal again. Maybe even run! I suspect as anyone ages they may feel the same way looking back at their lives when they were able to climb walls, travel to foreign lands, play volleyball or run hurdles. I thank God for my memories and enjoy looking at old photos of the healthy younger me.

    • Jan February 2, 2015 at 4:09 pm #

      Jenny, I think you are totally right about aging and things happening to all. A group of us former skaters got together last fall, and one totally ripped something in a nasty waterskiing fall (he had no prior health issues, other than not being 19 anymore).

      For me, I think it’s both. MS has wreaked physical havoc. But age is certainly a factor, and I’m having to admit that. I sometimes blur the two because of the past 10 years of MS losses (a combination, very likely).

    • Richard M. Cohen February 2, 2015 at 4:36 pm #

      Amen.

      R.

  5. Louise February 2, 2015 at 3:44 pm #

    Thinking of the younger, more able me of the past makes me a little sad sometimes. But it is thinking of the older, less able me of the future that brings me someplace beyond sadness.

    • Richard M. Cohen February 2, 2015 at 4:37 pm #

      Why go there? You don’t know.

      R.

  6. Brian L. February 2, 2015 at 4:02 pm #

    For me, the memories are what keep me from going insane. My pre-ms life involved racing dirt bikes and jet skis. I’m 50 years old now and am confined to a Wheelchair, but I still have my trophies and pictures in the garage where I can see them. Rather than torturing me with what I’m no longer able to do, they remind me that I did a lot of living before this came along. I don’t care if anyone finds it cheesy or not; they’re on display for me. If you want to put any of your pictures on the wall, I say do it!

    • michael February 2, 2015 at 4:21 pm #

      Us firefighters have what we call a “me” wall. At the start of our careers it’s small, only a few things, and prominently displayed where everybody can see it. As the years add up and the ego shrinks, the things on the wall grow, but the wall itself ends up in a basement or garage. As we age, we’re usually the only ones who see it, but then that is why it’s called a “me” wall!

    • Richard M. Cohen February 2, 2015 at 4:38 pm #

      I like your attitude.

      R.

      • michael February 2, 2015 at 7:22 pm #

        Thank you Richard.

    • giantjim February 5, 2015 at 8:36 pm #

      I’m with you !!!

  7. MB February 2, 2015 at 11:09 pm #

    Did you ever get a consolation prize, a booby prize, or a participation trophy? I feel like I’m awarded one of those everyday just for being alive. That’s probably the main reason why I hate to look back on my pre-MS life. I used to think of myself as a contender. Now…? What a kick in the gut.

    • Richard M. Cohen February 3, 2015 at 8:01 am #

      Maybe you just have to travel beyond the disease, in whatever direction you choose and get in touch with the real you. It cannot just be MSer.

      R.

      • RMS February 5, 2015 at 7:01 pm #

        Thus far I’ve lived a fairly healthy life, minus the 10’s of scars on my brain. I work out regularly, despite the pains; and see clearly, despite my eyes thinning. Just today I received bad test results. Im now onto the gym, clean my place, do work, cook dinner, go to bed. Structure, so that I’m full of joy still.

        I’m 27, with a birthday soon, and to this point in my life journey have become moderately successful for a Midwestern with a modest upbringing. I love my life. In fact, I love it more than before I was diagnosed.

        I was diagnosed what is going on 3 years ago. But symptoms for nearly 10. I see the rough road ahead, but I welcome it. It’s my journey. I choose my perspective, not my cards.

        I, as a child, had other physical restraints. But I rebounded to get 7 varsity letters in high school and play 2 sports in college. It made me strong. I used to be able to dunk a basketball vertically, i can barely get above the net now. Such is life. I am still lucky and I know it. I know the journey will get tougher and this will test my perspective. This is why I daily build a structure around joy. I do not allow negativity. I lived in that when healthy, I refuse to allow it with disease. It was my disease before I had this, or before I knew I did.

        What I live is each day with optimism. Positivity. For life, or a disease called MS, can take my abilities, but it can’t take my joy. If I have some sight, or some hearing; or some touch, or some degree of taste, then I shall commit myself to positivity. I will not sulk in any of my accomplishments, as I do not now. Because I can’t sulk in my miseries. Our minds are habits of patterns, of structure. My structure, is joy.

        Joy does not mean I have no fear. I’m scared to bring others into this. I hide my parents from my pains. My parents are in their 70’s, they need my strength, not me needing theirs. I just let them know I’m happy. I’ve told my girlfriend that if with me, she can not have kids. That is not what I engisioned, but what I was given. More time to watch TV, listen to music, hold a hand, or eat.

        I am disciplined, and financially okay now, but live in an expensive age. If God gave me this, then I take this as I am not best for kids. I just pray I can support myself, and my possible future wife if it is right and just. We have been together 6 years. I struggle with thought of is it right for her for me to commit. She’s beautiful, her life could be perfect. My life won’t.

        Either way, I will live each day with joy. Love each day with all my heart. Even if God gave me this, alone.

      • Hannah February 6, 2015 at 4:56 pm #

        @RMS – your attitude is beautiful, spot on, really…many here may not agree with what you say, but I agree with you. Please remember that no one’s life is perfect, even if they try to craft a perfect image on Facebook or wherever. You won’t be making someone’s life “imperfect” by marrying them – in fact, your attitude is amazing and you should propose to your girlfriend RIGHT NOW! DO IT!!!!!!!!

        Seriously, if you’re thinking about this topic, you should watch interviews with Richard & Meredith talking about when they first met. Especially if you want to get the person’s perspective in a relationship who doesn’t have MS. I think Meredith is rather eloquent when she has spoken about how she saw past the MS and liked Richard enough to marry him. Maybe she was lying, but she convinced me.

        Seriously…I suspect if you’ve been dating your girlfriend for that long, she probably really cares about you tremendously. You’ve only got one life to live!!! She might be feeling that her life would be perfect with you in it!!

  8. Amy Corcoran-Hunt February 3, 2015 at 7:14 pm #

    Every night, in my dreams, I walk. Then I wake up and there’s my wheelchair next to the bed. My days kinda start that way. Not ideal. But I am grateful for everything I jammed into my first 49 years on the planet.

    • Richard M. Cohen February 3, 2015 at 8:53 pm #

      More power to you.

      R.

  9. Molly Stark Dean February 4, 2015 at 5:44 pm #

    I have been a journalist all my life. I interviewed my stuffed animals when I was little. My siblings were my reluctant crew. After interning in news stations throughout college, I knew that I’m happiest working in a newsroom. I was diagnosed after I graduated college and was accepted to journalism school. Since graduating J-school, I have been laid off from 3 out of the 4 jobs I have landed. I just got laid off from a job that wasn’t even in my field. I just want to be back in a newsroom, but I can’t freelance. I need a full-time job with benefits, because MRIs and checkups are very expensive. Your books helped me through understanding my diagnosis and how to deal with it. Thank you so much.

    • Richard February 5, 2015 at 12:31 pm #

      We are on a shared journey. I was part of that culture, too. I get it. I wish I could help. I cannot even take care of me.

      Best,
      R.

  10. MB February 4, 2015 at 6:58 pm #

    Good article in Newsweek (2-4-2015):
    http://www.newsweek.com/2015/02/13/hunt-multiple-sclerosis-cure-304233.html

    Mentioned in the Cohen segment is his geographical depiction of the brain, “…that exotic place just north of the neck.” Love it!

    • Richard February 5, 2015 at 12:37 pm #

      Indeed. And what an exotic place it is.

      R.

  11. Yvonne February 4, 2015 at 7:53 pm #

    I think everyday we are reminded of what we loss, regardless of how positive we try to be. Walking, eating,driving, memory etc.is all more difficult so we can’t help to pause and remember, especially during the most frustrating moments. I think the important thing is not to dwell. Mourn but move on. I’m curious how many of us still drive? I do but today for some unknown MS reason my right leg went completely numb while driving on the interstate. Scared the shit out of me as I had to use my arm to move my leg from gato brake pedal on a busy highway. I got off at the next exit and used local roads to get home using my unorthodox driving method. Thank goodness it wasn’t far. I thought as I parked my car and got the Rollater from the trunk, “is this yet one more loss of freedom, the ability to drive ?” Sigh…hopefully tomorrow is a better day because I just reconciled myself to the idea of the stupid Rollater this year. I’m not ready to remember when I use to drive.

    • Richard February 5, 2015 at 12:41 pm #

      I lost the ability to drive nearly forty years ago. I hope to adjust to the loss soon.

      R.

    • giantjim February 5, 2015 at 11:42 pm #

      Yvonne: I have a 1970 corvette parked in my garage just waiting for me !!! Come on research I’m waiting….

      • Yvonne February 6, 2015 at 11:02 am #

        Now that’s torture giantjim because that’s a car that should not only be driven it should be enjoyed regularly 🙂 Damn MS !

  12. Jan February 4, 2015 at 8:58 pm #

    Molly, I ache for you–very sorry.

    MB, very nice article link, thanks much. (Richard, never knew you had an ear stud. I’m guessing it’s not that large-hole variety, ouch).

    Yvonne, I hear you this week with the driving. Other than that, I’m taking the 5th. (The 5th, not a 5th).

    My takeaways of the week:
    Cannot walk; then hit the bedpost hard (ribs still still hurt); called my local neurologist’s office first thing this morning, whose doors I haven’t seen for 1 1/2 years, hoping for a next-week appt. Guess what? The kindly woman on the phone actually communicated my issues with my dr., who fit me in today during his lunch time, and then started day 1 of 3 of solu-medrol infusions I had hoped for.

    He knows I’m not big on MS meds. (He is). But he’s still kindly to me, and we both can chuckle about life. And I learned something: while I like closure, there are doctors who try their best to manage chronic issues as best as they can, and with what is available to them. I still need to make and live with my own decisions, but that is humbling to me in a good way. Meanwhile, I have friends who are driving me there: also kindly people and humbling to learn to accept help when I’m more comfortable on the other side of it.

    • Jan February 4, 2015 at 10:40 pm #

      Oh yes, and I’ve learned (the very hard way) that, if I need to get up in the middle of the night, to first swing my legs over to the side, sit a minute, then walk carefully, step-by-step and likely with a cane. “Just saying.”

  13. Jan February 4, 2015 at 10:42 pm #

    So much for only one sort reply… forgot to mention: guess who was on the large screen TV in the infusion room?

    Yep: Meredith!!

    • Richard February 5, 2015 at 12:43 pm #

      Meredith Who?

      R.

      • Jan February 5, 2015 at 5:53 pm #

        Yes, her show, as in your wife’s show (I assume you were just being silly) 🙂

      • Hannah February 6, 2015 at 4:30 pm #

        Seriously though, who is Meredith.

  14. Yvonne February 5, 2015 at 8:31 pm #

    Richard, wow. 40 years. I guess the good news is you are a New Yorker so you always have a driver: taxi, subway, bus, limo or if you really want to be a renegade Uber. I unfortunately don’t have those wonderful options. if I can’t drive I lose 90% of my freedom to get around. I despise riding with people because I become their hostage having to come and go at their convenience. I hate being late. Also, I get bored easily and the thought of not being able to leave will keep me home more. That’s why I’m not ready to miss driving. I can handle all the other losses OK but this one will be a big one for me. Fingers crossed and throwing bones that I don’t have to remember how much fun it was to just grab my keys and go.

    • Linda Lazarus February 6, 2015 at 6:02 pm #

      Yvonne,
      I think we are twins separated by some fate….your post on driving is exactly what I think and how I feel.
      The territory I am able to cover has shrunk but it is still a great symbol of my independence.
      I did buy a new car that is higher off the ground than my old station wagon. It surprised me that the height makes it much easier to drive. I spent two months trying to figure out why driving it was less stressful and the answer was the obvious one. Surprised me.
      (I bought a Subaru Outback in case anyone is curious)

    • Richard February 6, 2015 at 8:15 pm #

      I miss driving every day, even after thirty-something years. I have spent many of those years on subways and buses. Meredith has a car and driver, and the whole family benefits. But if you think I live in the lap of luxury, you are mistaken.

      • Yvonne February 6, 2015 at 10:02 pm #

        I miss the access to trains, taxis and buses that living in a metro area like NY offers. That’s what I meant when I said you always have a driver. I would even hire a car to go to and from a Broadway show when these legs couldn’t walk to catch a cab. My options are limited now that I’m no longer in a big metro area.
        @Linda if I could buy a car your suggestion would be better than having my car retrofitted to gears for hand controls.

      • Hannah February 7, 2015 at 8:06 am #

        Dude Richard you should get in one of those car simulators sometime and go to town. Like the kind I saw the anchors on the Today show driving once a million years ago. They were doing a segment for something important, like drunk driving or texting while driving or something, but the message was lost on me when it was Meredith’s turn and she crashed the simulator and swore on live TV. It was simply uh-mazing. Keep it real, man–

  15. Sheryl February 7, 2015 at 11:12 am #

    Richard, it was PERFECT timing for this article to pop up on my Facebook… What? You mean I am not the only one who reminisces about the “glory days” ? Trophies and softball pictures in the garage..
    I too was diagnosed at an early age, 27, 1989. The doctor told me to get my house in order, there wasn’t any treatment… be prepared for the worse. Here I am almost 30 years later, and my biggest challenge is holding on to my job. They say I’m too slow, and don’t learn fast enough…
    Anyway, thank you for your words, and I will be checking in on your blog. Keep on truckin’, thanks again!

    • Richard February 7, 2015 at 1:53 pm #

      Sheryl-

      My best.

      R.

  16. Betty February 7, 2015 at 1:30 pm #

    Memories. They are who we were, and who we are. They’re all we’ve been, and how we’ll be remembered. There’s a case for writing it all down.

    • Richard February 7, 2015 at 1:54 pm #

      Do it.

      R.

  17. Jan February 7, 2015 at 2:39 pm #

    Armchair (literally) tidbits of this week (don’t worry… not a regular feature from me):

    From feeling relatively decent and walking to great finds at 3 local Anthropologie shops at the end of Dec. to rather crawling this week and not much good yet coming from 3 days of Solu-Medrol infusions, contemplating if I’ll walk again or need to order a Rollator, I’ve had time to notice two helpful end-of-week takeaways that can also apply to me/MS:

    2/6 Meredith Vieira Show and insight from a plus-size model: “Own who you are… Surround yourself with positive people who support you… Work on yourself and what makes you happy… Don’t worry about what others are thinking.”

    2/7 WSJ Review section article today entitled, “Brain, Heal Thyself” that mentions MS and averting some “learned non-use” with “use it or lose it” (I know, in context—not so simple, but I think it bears mentioning), it affirms to me that I should use that which I can, be it legs, brain, insight, or whatever. While my legs are currently uncooperative and with an uncertain future, there ARE things that I CAN do. I can write. I can be a good friend. I can encourage or challenge another. And you know what else? MS cannot take away “me.” I won’t let it.

  18. Jan February 7, 2015 at 2:57 pm #

    And Hannah, your Today Show car simulator anecdote made me laugh… see, life happens to everyone at some point! (And being “real” is a good thing).