Touching the Past

I stare out the window, realizing the snow is falling faster and more fiercely than I have seen, perhaps in my adult life. Memories of relentless snow from a Connecticut childhood run episodically on the projector in my head. Meredith just vanished into the blur of white, checking out a nearby trail. I think of the posts I have written about my life as a spectator, watching others do as I strain to even just see. Sometimes I just bore myself with frustration but cannot stop.
I cannot make my peace. I am not sure even that I want to. Making peace means accepting. For me that is a step too far. Throwing in the towel means surrender. What is the point of prolonging a fight that cannot be won? I am grateful to be included in a stem cell clinical trial. My expectations remain rigidly in check. Slowing the disease is significant, but there will be no reversal of fortunes. I am not a pessimist but a realist. I feel I know.
Does the hurt of permanent loss have to commit one to a life tinged with sadness? I enjoy a good life. I really do. I am privileged and try never to forget it. Yet it does not feel like a contradiction to admit that I desperately miss normalcy, the ability to do. That will not change. Perhaps I keep that hurt alive through memory. I do not want to forget. Sometimes I feel I can almost touch what is gone. That may be self-indulgent, but these memories keep what once was real and reachable. Maybe that is good, because it always will remain a piece of who I am.

65 Responses to Touching the Past

  1. KG January 26, 2015 at 7:23 pm #

    I have tried to live by the mantra ” I am not my disease”. I’ve been living with Stage 4 breast cancer over 4 years all the while knowing this is a battle I won’t win. I’ve never made peace with this and I’ve pushed reality far in the back of my mind day after day after day. I’ve had my moments where I’m flat out pissed off because I’ve lost the ability to be me. So many things I want to do that have slowly become impossible. Each “new normal” has brought it’s share of frustrations, anger and sadness. Even as I have begun to receive Hospice services, I still kid myself into believing “I am not my disease”. In my mind, I’m physically able to be me: walk without a walker, breathe without supplemental oxygen, eat a whole meal, drive a car, laugh without having pain, and even do laundry. My days are filled with reliving memories that can be painful but remind me that I’ve had a great life. It’s only when our bodies fail us that we can fully appreciate what we once had/were. Some of the pain I feel when I reminisce is I unknowingly took my health for granted and I’d give ANYTHING to be able to “be me” again. Unfortunately, with terminal cancer, eventually you do become your disease.

    • Richard M. Cohen January 27, 2015 at 7:49 am #

      I reread your response again and again. You have given me the gift of perspective. What you are enduring is imaginable and presumably painful beyond the reality I know and fight. There is a difference between peace and resignation, isn’t there. Please don’t let your fire go out for as long as you can keep it burning. I am a student of denial. It can keep you going. I will file what you have written for my book. Thank you.

      My best,
      Richartd

      • Elizabeth January 29, 2015 at 11:09 am #

        KG,
        Richard said it so well. I also read your response multiple times and I just want to say how I respect you. I just supported my Mom through her battle and she made me so proud. She lived a year longer than she should have and she got the most out of every day. There were days when I wanted to know what was going on inside. Was she sad? Did it consume her thoughts? I know she wasn’t afraid in the human sense of fear. She was going to write in a journal and she never got around to it. I feel like I just found out through you, what it was like for her. She was like you. She lived every day to the fullest. She didn’t let the cancer take her independence. I love Richards quote that there is a difference between peace and resignation. That is so true. Bless you! You are amazing. I took Mom’s journal that was empty and I fill it with letters to her now.

  2. Jan January 26, 2015 at 8:40 pm #

    Richard, I can really relate. Horrid health day with much ankle pain/weakness, dizziness, and head pain. (Oh, my… it IS getting worse). Tonight, my fear includes my sons not remembering their (and my) joyful younger years and seeing the “me” I once was. Sledding, tubing, making snow angels, venturing out on walks with my husband, making more complicated dinner recipes… laughing.

    Grateful that I can think, type, and do some work. But rather beside myself emotionally.

    We, all humans, will at some point or another, come face-to-face with rather stark realities of life itself. Of choices. Choices past, present, and future. And thoughts and responses to things not involving choice. Tonight’s news showed a teary-eyed man visiting Auschwitz, a place from which he had escaped as a teen. Horrible place.

    KG is facing terminal cancer. All I can say is that I think we all take things for granted at some point. It’s often relative. I commented today to a mom with a young toddler in tow, “They grow up so fast! Mine did. Except when you’re in the thick of it all, right?” She sighed with a smile of firsthand understanding. We all do the best we can at the time, I think.

    KG, I am so sorry for what you are going through.

    I’m not my disease, either. (Never has been; determined to not let it ever be, even with the “new normal” that keeps changing in ugly ways). We will all face something, eventually. (Too early for many). I still maintain that we don’t actually “become our disease.” Too stubborn to say that. I’m affected by it; my life has been altered by it; I may succumb to it; but IT isn’t me. I am me, regardless of what I’m dealing with . Semantics, maybe, but if I knew you, I’d most likely say that you have cancer, not that you’ve become it. I’m quite sure that there is more to you. We may succumb to whatever issue, but diseases do not have minds, souls. People do.

    • Richard M. Cohen January 27, 2015 at 8:15 am #

      Thank you.

      R.

  3. KG January 26, 2015 at 9:42 pm #

    Jan, Thank you. I actually stared into a mirror to really see myself. My hair has grown a little since I stopped treatment. And I have eye lashes and eye brows. My smile and eyes look the same. I have come to the conclusion I’m still me. Thank you for helping me realize this. I appreciate your words.

    • Jan January 27, 2015 at 10:06 am #

      KG, I kept thinking about you when (trying) to fall asleep last night. I have an anecdote to share with you: Nordstrom shoes at the mall. (Guys who don’t like to shop, bear with me here–oops anyone, really)…

      Although it now feels like last month being again top-of-mind, about six years ago I was searching at Oak Brook Center (lived in IL then) for shoes. Then ever on the alert for a good haircut place, I happened to spot a woman with just the cut and style I was trying to achieve. I at first hesitated. But we both roamed the shoe area for a while, so I decided to ask.

      “Uh, excuse me, I don’t mean to be too bold, but I’m still trying to find a good hairstylist and think your hair looks so beautiful–just the cut I am after. Do you mind telling me where you go?”

      Response from this well-dressed woman (you never know what the reaction will be): She stopped. She smiled. Pausing thoughtfully, she said I made her day. (This is not about me–it’s about her, however), saying, “You have no idea your saying that meant to me. I’m going through cancer treatments, and I’m wearing a wig!”

      After at first being a bit embarrassed but then after both agreeing that it’s really hard to consistently get hair to look really good (without a daily stylist), we chatted and smiled, and then both went on our way–one, with a cheerful thought and knowing she looked great, regardless of what she was enduring (that no one really had any idea about). And me–with an important perspective about people. We never know what others are going through, regardless of appearances; it’s one’s personality that matters most.

      KG, not that a wig is a solution and misses my point anyway–my sister had breast cancer and felt better wearing hers, though she didn’t have it on 24/7–I shared that story because who we really are isn’t truly defined outwardly (don’t let popular culture fool you). I’m not fond of mirrors myself, especially when putting on makeup and seeing pain and inflammation reflected back from my eye area. So I thank YOU for reminding me of that story. See, you encouraged me; you never know how you may impact another. Thank you.

  4. Hannah January 27, 2015 at 10:20 am #

    To me, making peace means accepting your life as it is so you don’t drive yourself crazy. It doesn’t mean throwing in the towel and curling up to die. Mindfulness is a good teacher of this concept.

    Your words have longing in them. I hear you ruminating. I do it too, for other reasons, but not as much as I used to. I used to non-stop ruminate. If there is one thing that will drive you absolutely insane, it is constant rumination. It does nothing for you. I encourage you to fight that urge.

    If you thought: “It is snowing. My eyesight is poor. Meredith is on the trail. This is the reality of the moment.” That is not giving up – it is accepting what is now. Then you are free to take the next moment as it comes.

    • Richard M. Cohen January 27, 2015 at 1:45 pm #

      Oh, buzz off.
      Rather, to each her or his own.
      I categorically reject your aplomb. This is the reality of the moment. Really? The moment? Please.
      Keep those cards and letters coming.

      • Hannah January 27, 2015 at 2:44 pm #

        Luckily, I’m a bumblebee.

      • Brian January 29, 2015 at 7:25 pm #

        I vehemently agree with you, Richard. All of our lives change as the days pass, some much more than others. We are all piloting the vessel we have trying not to hit the crags and to avoid the tempest. Faith is my guide and memories allow me to visualize times that weren’t so damn complicated.
        A phrase that I abhor is, “It is what it is.” That phrase is the same as stating, okay this obstacle before me is bad so I will give up, surrender. To timidly lie on the balsa wood rapier is not my goal, either. To simply travel on life’s waves, facing all events that challenge me as a moment to, exhale, and say it is what it is and accept the consequences. This is not my credo.

        I will remember what I have lost, hold my family near and in response to MS I do have a credo: It is what it isn’t: Not Cured! My best. Brian

  5. Bill Garcia January 27, 2015 at 10:50 am #

    I too watch people running around and doing things that I was able to do. And I do long for those days. It’s hard to accept the fact you may never be able to do those things again but I do hold out hope. The sad part is I getting ready to start my fourth DMD. Nothing I have taken this far has been able to slow the progression.

    There are times when I force myself to do some things I used to do knowing full and well there will be a price to pay.

    Never will I give up hope. I try to work on my mental approach to this horrible disease. We have no choice but to move forward, do the things we can and take life one day at a time.

    • Richard M. Cohen January 27, 2015 at 1:47 pm #

      Nice.

      R.

    • Richard M. Cohen January 27, 2015 at 7:31 pm #

      Pleased keep pushing yourself. You never will regret it. It is how we stay alive.

      Best,
      R.

  6. Brian January 27, 2015 at 10:40 pm #

    I think it was Maury Schwartz who said “my body is not me. My body is just the package that I came in.”

    KG, the same rings true for you and everybody else. We are our thoughts, our actions, our personalities. We are the people we love and the people who love us.

    Your words have left an impression on me, and I suspect, many others here. You did that, not your body. You still have something to offer this world. I will be thinking of you.

    • Richard M. Cohen January 28, 2015 at 11:14 am #

      Very well said.

      R.

    • Elizabeth January 31, 2015 at 12:39 pm #

      Beautiful expression of what I believe about KG’s approach to life, Brian. It is living like this that makes me understand why people who fight disease with so much positive expression are called heroes. They are giving the rest of us a gift of hope and overcoming the fear. I just am amazed at how strong people like KG are.

  7. Yvonne January 28, 2015 at 1:24 pm #

    Reason #1 I love this blog-doing foolish things that our bodies will pay for later are accepted, encouraged and celebrated! So many people don’t understand that pushing the envelope gives us a fleeting sense of who we were and therefore is a victory against the disease. Bravo to all of us that precariously perch, walk or dance if it makes you happy for the moment.

    • Jan January 28, 2015 at 10:39 pm #

      Yes, “happy for the moment” and an “envelope push” can do wonders for the spirit!

      Tonight, the Hallmark movie “Ice Dreams” has been on. When I went into the bathroom before removing my makeup, I turned on music and danced (weak as my legs are and as dizzy as it made me). It was fun to see my arm extensions and upper body posture that I so rarely see anymore when “wall-walking” and struggling to make it through the house.

      Yep: I’m the same person inside. I have occasional dreams of lacing up again, even if I have to hang onto the boards. We’ll see. Denial can work well for me at times. Back to the movie…

      • Jan January 28, 2015 at 11:07 pm #

        Movie’s over now. Okay, okay… a lot of Hollywood in there, I’d say.

        The real point is that, for me, “pushing” can have its emotional perks–a feeling of accomplishment amidst challenge, which can fuel the spirit, the outlook, the desire to move forward, even if in inches. I’m hurting less and smiling more: good things, I think.

      • Richard January 29, 2015 at 7:05 am #

        You get iot.

        R.

    • Richard January 29, 2015 at 6:58 am #

      Yvonne-

      Precisely right. Beats prison.

      R.

    • Richard January 29, 2015 at 6:59 am #

      Precisely. Bests prison.

      R.

  8. Elizabeth January 29, 2015 at 11:36 am #

    Richard,
    I am struggling with acceptance. I felt like not accepting my illness was creating internal conflict that was holding me back. Now you’re making me think the opposite. Am I trying to force myself to accept my limitations and that is not going to be beneficial to me?

    Knowing that you have had MS for all this time and still feel that you resist acceptance worries me that this internal conflict will remain. I hate this. Conflict and I don’t get along. I know I worry too much but I don’t have much to occupy my time. I’m working on that.

    • Richard January 29, 2015 at 1:29 pm #

      Elizabeth-

      You are making one big mistake. You are listening to me. I write presciptions only for myself. I never would presume to tell another what to think or do. Trust your instincts. Only you know you. I am a malcontent, not a role model.

      Best,
      R.

  9. Jan January 29, 2015 at 1:07 pm #

    Elizabeth, if you don’t mind my interjecting on your conversation with Richard, I think it’s all about perspective. And it’s a personal thing, too. I have the same issues, really–at year 10. I vacillate between pushing (my nature, and I still can’t believe at times I’m dealing with this, in particular what I’m facing lately–scary) and acceptance (because it can make my life, and the lives of my family watching/trying to help me easier).

    I, too, am not fond of conflict. While I’m not suggesting we try to embrace it, I’m also seeing that conflict is a part of life: it’s how we handle it, how we respond, that really counts.

    Suggest that you find something you like to occupy your time, just as you had mentioned. Something fun or, even better, in service to others in some way. When I help at church with ESL, I am uplifted by the adults who have a passion for learning English. Gosh, how hard would that be? They amaze me with their perseverance.

    I am also a part-time freelance copywriter who at the moment is having some fun with the whole Super Bowl football deflate thing. My client and I have a friendly “email subject line” competition going each month, and I think I’ve got it this time, thanks to current events providing creative fodder.

    Yes, it gets my mind off of my pain, my struggles. I can still think and write, as can Richard. (Maybe even better because of it all). Normal everyday things can be hard. But some things of productivity in my day, however small, can work wonders for the spirit.

    And I’ve often said that I can TALK about MS; I just can’t THINK about it for too long. It’s too hard. I go back and forth. (With an inconsistent disease, I think I’m entitled!) So perhaps just don’t think about it more than you really need to. Don’t just “be;” “do” (something, anything).

    • Jan January 29, 2015 at 1:12 pm #

      Oh, and Richard, about how many people are on your blog? (I often respond as if speaking to one person, but I’m now curious about the stats. Knowing the number may even give me incentive to write shorter responses!)

      • Richard January 29, 2015 at 1:34 pm #

        I have no clue. I am sure there is a way to find out, but I do not know it.

        R.

  10. Jan January 29, 2015 at 3:37 pm #

    Yes, likely. But if you don’t know, I won’t ask again. (But I will still strive to be brief, when possible).

  11. MB January 29, 2015 at 8:59 pm #

    This is my least favorite topic.

    Although I’m now in a chair, that decision was not made because I gave up and have accepted my fate. I just can’t walk anymore. I went from step step step step…fall to step fall step fall step fall. It might have been more noble of me to keep the second pattern going, but darn, it hurt too much!

    You asked, perhaps rhetorically, “Does the hurt of permanent loss have to commit one to a life tinged with sadness?” My answer is yes. It’s like mourning the death of someone you’ve loved. Life goes on but you’re reminded of your sadness on holidays, birthdays, or even when a song is heard that triggers a memory of being with that person.

    I have a good life with a husband who loves me and who I love. I have two happy adult children as well as close friends and family. I’m so lucky. But there are (many) times when I feel that tinge of sadness when i see people walk effortlessly. I envy people who can book a hotel room and not worry about handicapped accommodations. The list of mundane tasks that I can no longer do is long. I miss the old me.

    Oh well.

    • Jan January 30, 2015 at 8:20 pm #

      I truly understand, I think. I am both sorry for your losses and encouraged by the positives. And music can be powerful, indeed–to lift the spirit but often simultaneously remind.

    • Richard January 31, 2015 at 8:58 pm #

      Alas it was rhetorical. I know the answer, and I am sorry for us all.

      R.

      • MB February 1, 2015 at 6:16 pm #

        Me too.

  12. Yvonne January 29, 2015 at 9:12 pm #

    Elizabeth, you are not obligated to accept anything in life. Reality means it is what it is as we now nothing different. That doesn’t mean there ISN’T anything different it just means our perceptions are limited by what we have been taught and believe to be real. Alright enough of all that philosophical bullshit! Do you. Accept some but not all. No one on this blog can determine what is wrong or right. We are all just figuring it out and sharing our experiences and thoughts. Take what you need and file the rest. Richard has created a forum where we can bitch we can moan we can comfort we can validate and we can call BS if needed. Join in but don’t believe anyone has the answers here. We do have the support when you’re screaming 🙂

    • Yvonne January 29, 2015 at 9:16 pm #

      Forgot the main thing we can do here…share.

  13. Yvonne January 30, 2015 at 10:34 pm #

    By the way @Brian it really is what it is until you change what you CAN control. Then it’s more aligned with what you want it to be. Serenity Prayer.

  14. Jan January 31, 2015 at 9:59 am #

    Yes, the Serenity Prayer is a good one, I think.

    This morning, I’m also thinking that Ann Romney is not a good representative for the general public to understand MS in that I’m suspecting that, “Oh, by the way, 10 years is an even greater” philosophy is becoming clearer to me. Now at year 9.75, these past few weeks I have gotten zapped. Can barely walk today. Dizziness, severe pain, and balance issues. Scary.

    Thank you for this blog and for others who “get it.”

    • Jan January 31, 2015 at 10:21 am #

      btw, I haven’t seen a neurologist in 2 1/2 years. Can’t see the point. Have never been on meds. (MRI’s are therefore a costly, unnecessary “interesting to know” thing for me at best). Don’t think they can do anything. I may again try giving up all sugar and some red wine (currently mostly off of flour). It may not do anything, but then again, it may. Time will tell. (If it doesn’t help, then I can toast giving it a try with a good California Cab!)

      • Elizabeth January 31, 2015 at 1:02 pm #

        Jan, that is part of my conflict. I am broke and as much as I respect my Dr. they want to do MRIs every time I struggle with my symptoms, and after two years of this crap, all I end up with is a big medical bill and no major relief. I feel blessed that I am starting this battle at a time when there are more options for treatment. When my sister was on Copaxone and had horrific, life threatening reactions, then on Rebif which worked well for her, but I couldn’t imagine having to inject myself every day or every other day. I was a needle ophobe (I know that’s not a word but you know what I mean) Then I got to a point that I was so sick I told myself I would inject myself three times a day if it meant a halt to the loss of quality of life. Also, I am so used to the lab work and infusions that I am not so much a baby about needles. Now that there are orals, it feels more manageable and less intrusive. I apologize for whining about needles. I went to chemo treatments with my Mom and until she got her port, it was heart wrenching to watch them try to find veins. God Bless anyone who has gone through that. I would have taken those treatments and the side effects for her in a heartbeat.

        Right now, I am resisting going back to the Dr. and struggling with that decision. I haven’t had anything more that solu medrol, Aubagio, then 8 months of Gilenya before they took me off. I never really felt much of a difference. Of course they told me until my life stress decreased, it was hard to evaluate if anything was working. I’m feeling like I am not doing myself any favors by not going back to the Dr. to start a new treatment, but also just feeling like I’m not in the mood to start something new.

        I can’t drink right now because it just makes me feel crappy, but my career was in the California wine business. If it gives you pleasure, trust me, keep drinking the California Cab 🙂 If you ever need a suggestion of something yummy, I am your source. Cheers!

    • Richard January 31, 2015 at 8:59 pm #

      My best,

      R.

  15. Joan Z January 31, 2015 at 12:23 pm #

    I am 21years post diagnosis and like many of you believe it started even earlier. I’ve been through phases of anger, denial, furious research, try anything once, resignation, peace, surrender. I once ran marathons, hiked tall mountains, walked my dogs, traveled without a second thought. Now in order to do anything I push a walker or ride in a chair, am in a constant state of bladder/bowel management/worry. I also long for the simpler days before disability, but at 55 I finally see that any miracle I might enjoy had better be in the here and now. I also see my neurologist infrequently, he’s a great guy, but don’t see the point. Drugs for MS are a joke. Alternative therapies are hit and miss, and/or cost prohibitive. Sad, or just realstic? I know it’s a lot less exhausting than all of those years chasing a cure were. The time comes when being comfortable in your own skin is priceless. A good glass of wine helps too.

    • Richard January 31, 2015 at 9:01 pm #

      Or something stronger.

      R.

  16. Elizabeth January 31, 2015 at 1:04 pm #

    I just need to say what an amazing group of people here. The advice and understanding is much appreciated. Thank you to everyone for the feedback.

  17. Jan January 31, 2015 at 2:37 pm #

    Elizabeth and Joan, I personally appreciate your sharing: thank you.

    I think it’s okay to sometimes make up words that fit (I do it, too).

    I’m also needle-averse. (I admit it, but very likely everyone is in the category to some degree, I suspect). For me, only when the benefits outweigh the hassle and expected outcome potential. For example, yes, I did have a measles shot when young.

    Elizabeth, I suspect that sugar and wine make my eye area and overall inflammation worse. (Oh please, not my very dark chocolate, too!) I’m experimenting with that. Or rather, with not having occasional wine. (Why can’t raw brocoli be the culprit?) Cool that you worked in the CA wine industry. Love Sonoma, Central Coast, and about any place CA!

    Joan, a WSJ article today re Camelback Mountain (Scottsdale, AZ–Super Bowl talk) and your mention of hiking reminded me of a staff hike up Mummy Mountain there for a conference (25+ years ago) in which I slipped, caught myself, but my hand landed on a cactus. Easier to pluck out 50 cactus needles than endure MS treatments or missing the physical activity of years past. Very sorry you can’t do the things as before. I totally get that. Totally, firsthand. And I’m 53 (with a mental desire of age 39).

    Really, you both spoke so very well, summed things up so well–I agree, and thank you. And thank you for making a tough day brighter.

  18. Linda January 31, 2015 at 3:15 pm #

    Thank you Richard..the highlight of my day is reading your blog and learning from you and the others who share their thoughts, that I’m not alone, living with this disease…I awaken in the morning with random tears, sadness and gratitude for 48 years of ignorant bliss. Those years were numb. That numbness protected me from feeling.
    Now at age 63 with 15 years since the MS diagnosis I reflect upon the emotional numbness of my youth, and how, I believe, those years prepared me for the physical numbness that I deal with now.
    Long ago, my husband quoted a thought that has helped me through the years. “Pain is inevitable, suffering is optional” I wish I could give credit to the author, but I can’t because he or she is unknown to me.
    I just wanted to share. I try to live by that thought. Sometimes I succeed. Many times I don’t.

    • Richard January 31, 2015 at 9:04 pm #

      All of you share. I so admire you.

      R.

  19. Jan January 31, 2015 at 3:21 pm #

    The “walking Lyrica and Restasis commercial” here (never tried either but can relate to their marketing) is possibly blog-chatting a bit too much at present, but the blog is helping a lot today, thanks… and nice quote to think about, Linda.

  20. Jan January 31, 2015 at 3:43 pm #

    And I am thinking about that quote even more, as it turns out… Auschwitz anniversary article in the WSJ, cancer, MS… hmm. I think I appreciate the spirit in which it was intended–and that it, indeed, does have its place. (As in, I suffer needlessly, really, when I try to carry on with “business as usual” when feeling as if I should be in a hospital). And there are times when we suffer with a disease that it unknown, not optional. Sorry, I’m reading too much into this. Context is key.

  21. Colleen January 31, 2015 at 3:57 pm #

    Hi Richard,

    I haven’t commented in some time, but I have been here reading and relating. I first found your site researching stem cell transplants for MS probably 6 months ago. I am happy to say that yesterday I got the call that I was accepted into NW’s program. So, my journey begins as I continue to find strength in your posts. Thank you for the part you played in my journey… Even if you didn’t realize you were playing it.

    • Richard January 31, 2015 at 9:07 pm #

      Go for it. All of us are with you.

      ER.

  22. Colleen January 31, 2015 at 3:58 pm #

    Hi Richard,

    I haven’t commented in some time, but I have been here reading and relating. I first found your site researching stem cell transplants for MS probably 6 months ago. I am happy to say that yesterday I got the call that I was accepted into NW’s program. So, my journey begins as I continue to find strength in your posts. Thank you for the part you played in my journey… Even if you didn’t realize you were playing it.

    • Linda January 31, 2015 at 6:45 pm #

      Jan,
      I don’t believe that you’re reading too much into that quote. I get what you’re saying and you’re right. Context is everything. Everything in our lives is relative to our own experience.
      Now that I really think about it, we’re dealing hugely with the unknown and the suffering that comes with that unknown is not optional.
      Thank you for your thoughts.

      • Jan February 1, 2015 at 4:52 pm #

        And I thank you for yours, too, Linda.

    • Richard February 2, 2015 at 12:25 pm #

      I wish you the very best.

      R.

  23. Dale February 1, 2015 at 11:53 am #

    Hi Richard, Hi gang.

    I seem to run back to here when feeling a little lost. We’ve survived a significant snowstorm, but I just caught some pictures of devastation at a little cottage that’s rather important to me. The frustration of not being able to jump in the car and help fix things is really difficult. It wasn’t long ago I’d be the first one with hammer, nails and duct tape. Another storm on the way tomorrow.
    Will say it’s definitely worth sucking it up and using the chair at hockey games. Best seat in the house friday night.
    I’ve glanced at the facebook groups, etc and decided no thanks I’m better off going it alone. But I’m grateful for Richards musings (especially the honest and frank occasional ‘Buzz Off) and the lack of phony folks here.
    Boy would this group be a force to behold if all together in one place.

    • Jan February 1, 2015 at 2:43 pm #

      Ah, after the snow melts, a summer party at Richard’s on the Cape (or whetever your summer place is if you even have one… I am not actually asking), and Elizabeth can bring the Cab. Suggest inviting Ina Garten to cook.

      …totally kidding about it all, but I agree that it would be fun. (And likely candid).

      • Dale February 1, 2015 at 6:09 pm #

        I think unlike us Richard was too smart to have a house built on sand…. but though the steps are gone again to Nauset Beach there’s still a great view from the parking lot. And that cab sounds great right now! Most snowbirds and washashores are being advised not to read the online CCTimes right now. But Patty Page will playing again soon enough…

      • Richard February 2, 2015 at 12:36 pm #

        Dale-

        I had a serious run in with scotch when I was quite young. These many decades later, I am able to smell the stuff. A dry martini (one) is a different matter.

        R.

    • Richard February 2, 2015 at 12:30 pm #

      A wonderful thought, though I think we are far flung. Maybe that is why God invented Skype. Actually, I doubt she was resourceful enough for that.

      R.

  24. Dale February 1, 2015 at 6:55 pm #

    Oh yes, and Ina to select the menu. And not sure if Richard is a fan of single malt scotch. One of the most valuable life skills I learned from a prof in grad school was knowing my single malts. But Newcastle right now with the Superbowl. Thanks for bringing back the grins.

  25. MB February 1, 2015 at 9:49 pm #

    Why do some of us regularly revisit our memories of being healthy? Why do we find ourselves more disillusioned than hopeful? Could one reason be because lists like the following are heralded as MS “breakthroughs” ?

    DRUGS TO MODIFY THE DISEASE COURSE:
    Aubagio (teriflunomide)
    Avonex (interferon beta-1a)
    Betaseron (interferon beta-1b)
    Copaxone (glatiramer acetate)
    Extavia (interferon beta-1b)
    Gilenya (fingolimod)
    Lemtrada (alemtuzumab)
    Novantrone (mitoxantrone)
    Plegridy (peginterferon beta-1a)
    Rebif (interferon beta-1a)
    Tecfidera (dimethyl fumarate)
    Tysabri (natalizumab)

    DRUGS TO MANAGE SPASTICITY:
    Dantrium (dantrolene)
    Gablofen (baclofen [intrathecal])
    Klonopin (clonazepam)
    Lioresal (baclofen)
    Valium (diazepam)
    Zanaflex (tizanidine)

    DRUGS TO CONTROL PAIN:
    Dilantin (phenytoin)
    Elavil (amitriptyline)
    Klonopin (clonazepam)
    Neurontin (gabapentin)
    Pamelor; Aventyl (nortriptyline)
    Tegetrol (carbamazepine)

    and on and on and on…

    Modify. Manage. Control. Give me words like Improve, Fix, and Cure and I’ll start to take notice. That’s why this blog interests me—it’s the first time I’m not being treated like a junkie.

  26. Erin February 1, 2015 at 11:21 pm #

    I often sit around and think of all the things I want to do, and then j stand up…and realize I cannot do some of those things anymore. It’s frustrating…i miss my old life. It’s the little things that bring me down…all the posts from people who are craving summer. In my old life, I loved the summer….the beach, the parks, getting out…now I hate it, I can’t walk unassisted anymore, no less on a beach, at least in the cold weather I can stay inside and hide, then I do not get so frustrated as to what I am not doing in the nice weather. I too feel like I am mourning a loved one, myself….I also am a realist….this is it, it’s not changing, or getting better, but oh how I wish it would. So on my good days, I do what I can…for my two young boys, it’s not fair to them either, so I try to make it as normal as possible for them. I’m trying.

    • Joan Z February 2, 2015 at 6:00 am #

      Erin, ditto.
      I wonder if these are the good old days. Helps me to be grateful for all that still works. I don’t think I appreciated what I had when I had it. Guessing any thinking/feeling person, MS or not, might feel the same. When I’m pissed off about the wheelchair, I realize the cane wasn’t so bad.

    • Richard February 2, 2015 at 12:39 pm #

      Life is not far. Period. Get used to it, I silently say.

      R.

  27. Jan February 2, 2015 at 2:37 pm #

    Now both sides ache–literally, but joyfully with insight.

    I won’t give anything away if you’ve not seen it, but oh my, did I relate to the mom in the ending kitchen scene in the movie “Boyhood” (my first theater movie since “The Kings Speech”).

    While most movie situations weren’t similar, the mom’s thoughts there really gripped me–because of a scenario common to parents at this stage, and because of scenery that flashbacked vivid memories, including a royal blue cap and gown amidst mostly strangers, all a direct result of MS and a subsequent job elimination.

    After some really bad health the past few days and then weak ankles wiping out last night to the tune of hitting my ribs hard on the bedpost, I took my son to the grocery with me this morning. I caved into using the store’s scooter. Had to. But this time, it took on a different perspective. It got me where I needed to go, and my son informed me that, where he works, the teens scramble to help people in them to be able to ride those carts back into the store. So I’m actually a welcomed sight there, not the thorn in the side I thought! (Time to practice my “Queen’s wave,” we laughed). In fact, we laughed so hard over it all that my other side (joyfully) hurt!

    At that movie, instead of being irritated at my neighbor for suggesting a rollator when I labored with a cane yet longing for my old athletic status, I am finally realizing that I’m most comfortable with a combination of denial and reality (instead of all denial). I’m still not liking the physical stuff (I may never), but I’m trying to learn to work with, and not through, it. I still push as I am able, but with a mental perspective that I really am the same person inside. MS can’t take that away. I cannot impart what I don’t have, so I’m on the road to handling it better. All anyone has is today: my hope is to not waste it.