The Marathon

We have passed the seventy-blog marker on our marathon.  The good news is we are making progress.  The bad news, there is no finish line.  There is no shortage of coping issues that hold hands with chronic diseases.  I imagine we never will run out of stuff to discuss.

I had thought I would lose interest after three or four.  I tend to have the attention span of a five year old.  After all, I did work in television for twenty-five years.   Our topics are compelling and all of you very interesting.  Opinionated is another word that comes to mind.  The magnetic pull of the dialogue has been irresistible.  I am hooked.

I am not sure my views are worth a damn. Yours are.  Gawd, I hate being nice to people.  So many of you have to deal with terrible if not terrifying challenges that seem so much more daunting than mine.  There is no hierarchy of pain, I repeatedly argue.  You are living your life and fighting your own battles.  That is your reality.  Still…

You do it with such grace and humor.  You must be an inspiration to family and friends.  And there is a palpable calm to your words.  You know what you are up against and meet your challenges in an understated manner.  No moaning and groaning.  I generally hobble outdoors at night and rail at the trees.  They are polite enough to say nothing, although they do not appear particularly impressed.

You are great people.

Your responses have been thoughtful.  I think dignity is its own reward.  It breeds self-respect.  Do you ever get used to the whole thing?  I cannot make that leap.  Every day I awaken to the same body parts that do not work.  They were pretty useless yesterday, and I expect the same tomorrow.   Yet I am surprised when my feet hit the floor and my body begins the daily battle with itself.  I am angry.  You do not seem to go there.

Okay.  Where do I sign up for the course?

 

 

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52 Responses to The Marathon

  1. Matt June 16, 2014 at 1:20 pm #

    We are all angry but where does that take us? We still wake up everyday and get kicked in the face by this monster, but screw it we have to stay strong for those that come after us so they and we can beat the shit out of this! We will win!

  2. Linda Lazarus June 16, 2014 at 1:41 pm #

    Your post gave me a lot to think about….I was always a fiesty, tempestuous person and I have not lost that part of me but I have lost the anger. Maybe it is a benefit of the progression?! Hell, I don’t even have wonderfully angry fights with my husband anymore. Remember those days of smashing dishes and streaming tears? I miss that. So, I conclude, one aspect of MS is not having enough energy to be angry. This may or may not be a benefit. I loved those passionate wonderful fights!

    • Richard June 16, 2014 at 8:06 pm #

      I get it. I am tired. But never too tired to be anry. To breathe?

      R,

  3. Jeff June 16, 2014 at 3:01 pm #

    I get angry sometimes. I find myself watching TV and cursing at the man in the commercial who seems like an ass and has no idea how lucky he is not to have to deal with what I do. Damn him and his perfect white teeth – I hate him!

    Then I realize that this hate isn’t getting me anywhere. In fact if anything, it is making me a little more miserable. I try to think about what I can do in that moment to hep ME. How can I give myself the gift of happiness? I look at my kids or my wife and am thankful that I have what I have. I get off my butt and go outside and spend time with them. Even if I can’t play soccer in the backyard with them, I can sit with them and enjoy life for a bit.

    But in the back of my mind, I still hate that guy 🙂

    • Richard June 16, 2014 at 8:09 pm #

      We all have our ritualls.

      R.

  4. Betsi June 16, 2014 at 3:17 pm #

    I remember my first outing after I was diagnosed. I sat in the car while my husband took the kids into a farm market to get pumpkins. I envied all the “healthy” people I saw walking around and enjoying themselves when I couldn’t feel my legs and didn’t know what the future held. I cried, and I was angry–not for the last time.

    Eventually I realized that everyone has her own flavor of dragon breathing fire down her neck. It turns out that MS isn’t even the only one I have following me around! Anger was one bad feeling that I was able–for the most part–to let go.

    • Richard June 16, 2014 at 8:11 pm #

      Hold onto that.

      R.We all have our ritualls.

      R.

  5. Amy Corcoran-Hunt June 16, 2014 at 3:57 pm #

    There is no getting used to it really, and I do understand your railing at your trees. In my dreams, nice ones, crummy ones, weird ones, I walk. I wake up in the morning, the legs don’t much move, I see the wheelchair next to the bed and I say “oh yeah” and start my day. Oh yeah. Great.

    I am royally angry when I think of my life before, and all the things I’d like to do with spouse and very cute, funny toddler that I can’t. Seems like such a waste of a squander of a stupid shame.

    My aggressive, progressive MS has made off with many, many things, including sometimes my dignity (which I prize more than anything, for better or for worse, pridefulness runs in the family).

    But MS has given me one gift: I cut through the nonsense of life pretty fast these days, I know what counts, what’s essential, and I don’t project weirdly, worried, into the future. I’ve become calmer. More accepting of imperfection. More attentive to small, nice things that I used to brush by.

    All that said, I promise to keep those lessons learned if the stem cells work! Promise! I gotta walk again. I miss being tall. I was 5’8″.

    You run a nice blog. Thank you for that.

    • David Thompson June 16, 2014 at 5:09 pm #

      Your comment about being tall made me smile. I spend my days in a power wheelchair. When asked how tall I am, I often respond that “I’m 3 foot 6; but I used to be 6 foot 3”. The other unsettling effect of being in a chair is that @ 6’3″ most folks couldn’t see the bald spot on top of my head. These days it is not unusual to hear wise cracks about my thinning hair 🙂 . Oh well…

      • Amy Corcoran-Hunt June 16, 2014 at 5:42 pm #

        Also, David, a seated existence is not ideal for a middle-aged middle. I carried my ice cream habit so much better at 5’8″. Such are our burdens…

    • Richard June 16, 2014 at 8:14 pm #

      My thanks to you.

      R.

  6. jeanne June 16, 2014 at 4:20 pm #

    For years my eyes couldn’t focus and I couldn’t read or write but for whatever reason my eyes are working now and I’m taking full advantage of it. I read all your books in one week and I am totally obsessed with your blog! You have no idea how helpful you are to people who just don’t want to feel alone. Please write another book before my eyes decide to go wacky again.

  7. David Thompson June 16, 2014 at 4:54 pm #

    Richard-
    Your blog has been a godsend. I only discovered it about two weeks ago; but I’ve taken such comfort in hearing you share your thoughts. I really will try not to gush, because the person I perceive you to be probably doesn’t digest praise for living a compromised life, no matter how openly you may choose to expose yourself to your readers.
    I feel very fortunate to have been diagnosed after I turned 50 (which seems bizarre to write, in that living with this disease for the last eight years is equally as cruel to me as I’m sure your last 40 years of living with MS has been to you). I had the opportunity to coach my children in sports, take a very active role in my community (both as a volunteer and as an elected representative) and enjoy a 35 year career with the same company I joined as a 24 year-old young man who really didn’t have a clue what I wanted to do with my adult life.
    MS stole what I had anticipated to be my last 10 years of planning and building beautiful structures and sports venues. It got in the way of relationships with architects and engineers that provided such stimulation and satisfaction in my working experience. I just simply couldn’t keep up with the demanding pace of today’s construction market and had to “call it a day’ at the tender age of 59.
    I just want to thank you for sharing your thoughts and allowing us to hear so many of your experiences and observations on everyday living that strike such a chord with those I live each day. Your sense of humor is so appreciated. My own ability to be able to laugh at myself when I realize how ridiculous life has become probably keeps me from curling up in a ball and giving up. We both are blessed to be married to partners that are patient caregivers and who keep us from taking ourselves too seriously. My own wife, Renee, reminds me of Meredith, in that she puts up with my crap (and returns it to me when necessary); but she never lets me forget why we fell in love nearly thirty-five years ago,

    • Richard June 16, 2014 at 8:17 pm #

      Thank you.

      R.

  8. Linda Lazarus June 16, 2014 at 5:18 pm #

    p.s. my very first MS friend used to call it emotional incontinence.

  9. Joan June 16, 2014 at 6:42 pm #

    You are more diplomatic than I. I don’t call it anger, I am royally pissed off at disability, and losing the life I used to be able to lead. A very wise woman once suggested that allowing myself to really feel the feelings, would allow that ugly, negative energy to move out of the way for something better. I’m still testing that theory, but it seems to work, just make sure I don’t kick the dogs. Also, my husband always tells me “there are no rules”. He’s right, but I still want to become the dictator of illness and make the darn rules. I think on some level we are all better off “not getting used to it”

    Your writing is so honest, and needed. Please keep yourself going, I’d miss you if you were not here.

    • Richard June 16, 2014 at 8:18 pm #

      Thanks.

      My best,
      R.

  10. sharon June 16, 2014 at 7:54 pm #

    I agree your blog helps so many people, even people who have different illnesses. I appreciate your honesty. This was another really good one. I don’t think of you as being angry. I think of you as being honest which is very helpful.
    Sharon

    • Richard June 17, 2014 at 8:45 am #

      Maybe both.

      R.

      • sharon June 17, 2014 at 7:47 pm #

        Yes, maybe both, but still a great place to vent. We all need that!

  11. Mark June 16, 2014 at 8:49 pm #

    Relax. This is great therapy. We all carry something in our bucket. If we don’t, it just hasn’t arrived yet. No one gets through life undefeated. Just keep writing, please.

    • Richard June 17, 2014 at 8:46 am #

      Will do. Thanks.

      R.

  12. Barbara June 17, 2014 at 1:41 am #

    Just “officially” diagnosed in February, I am far too afraid to be graceful or overly brave about this. Just last year, I thought I was healthy. This is hitting me fast and hard. I’ve had this for years, I suspect. I am mad because every Dr. told me “you look too good to be sick – go home”. I worry how I’ll pay to be sick. How crazy is that? I worry I’ll be alone. I’m more afraid than mad. I’m not to the point of being brave or calm even. I am not used to anything and I’m sorry.
    This is not real….but it is.

    • Richard June 17, 2014 at 8:53 am #

      Barbara-

      Please cut yourself some sllack. The beginning is tough. Actually, it’s always tough. You will get used to it and integrate MS into your life. Have you thought about joining a support group?

      Best of luck,
      R.

  13. MB June 17, 2014 at 1:51 am #

    I’m angry, resentful, and non-accepting, too.

    What’s been a comfort to me though is the community I have found on your blog. Often they are the slap in the face I need when I entertain the thought of sending out invitations to my pity party. As strange as it may sound, their words have given me strength when I don’t think I have an ounce of it left in me.

    I look forward to reading your posts because you tell it like it is for so many of us. I also can’t wait to hear “my friends'” responses to your thoughts. We all are reporting from the trenches which keeps it real .

    Thanks for hosting our get togethers, Richard. 🙂

    • Richard June 17, 2014 at 8:56 am #

      It is a privilege.

      R.

  14. Georgia June 17, 2014 at 1:51 am #

    The Merry-go-Round of M.S……….Round and round we go, where it stops, No one knows. We have been given an “E” ticket to ride. From pillar to post, no one said life was fair. Thank you for your blog, it makes my burdens bearable knowing I have company.

    • Richard June 17, 2014 at 8:57 am #

      Great. Thanks.

      R.

  15. Joan L June 17, 2014 at 11:31 am #

    A good friend was just diagnosed with chronic inflammatory demyelinating polyneuropathy CIDP and basically is now exactly where I am after 10 years with SPMS. I shuddered when I saw her and realized it took me 10 years to get here and how horribly difficult it must be for her to be there in a few months! Then after reading your blog I was blown away how “used to it” I have become. The new normal. I have some new perspective trying to help her at rehab center and hoping she gets her abilities back. Now I am angry for her as well! But hoping, staying positive for us. Everyone here helps, thanks.

    • Richard June 17, 2014 at 4:39 pm #

      Joan-

      Remember.”There are 8 million stories in the naked city. This has been one of them.” Show biz and MS. Go figure.

      R.

  16. Yvonne June 17, 2014 at 2:59 pm #

    That’s what I love about this blog. It’s ok to say “I’m angry” because here folks know it’s not negative, it’s a emotion. Give me a minute or two. I’m dealing with something here that’s hard to understand. I don’t look like I feel. Your realistic writings along with those of this community keep me sane on the days when I feel resentment, anger, frustration and helplessness. We journey together, the good, the bad and the ugly are shared along the way with people who truly understand. Finding this blog has given me so much strength when I didn’t think I had anymore. And…a few laughs at the absurdities of this disease. Yes, I give senior citizens (I’m 58) who jog past me the side eye of resentment sometimes. But then I remember, hell, I didn’t jog when I could anyway!

    • Richard June 17, 2014 at 4:54 pm #

      Noman Cousins wrote that living with illness is “inner jogging.”

      R.

  17. Yvonne June 17, 2014 at 3:16 pm #

    BTW Richard, you don’t have to sign up for the course because you may not realize it but you are facilitating it

    • Richard June 17, 2014 at 4:55 pm #

      My pleasure.

      R.

  18. Geof June 17, 2014 at 3:40 pm #

    I had to laugh at this post because in many ways you are the hero in our little saga. In your post attempting to put the spot light on us and our imagined good qualities, I chuckle because I see what I try to do all the time. Being thought of as heroic for being oneself is a high stand to have to maintain.

    I yell. I fart. I have even been known to give speeches with shit in my pants. I feel anything but heroic, and yet there is a pressure to be better. My usual answer when I feel myself unable to keep up with expectations is to try and shift the focus to others with praise for their life and skills.

    So I laugh as I see you, our reluctant leader, shift our focus to “how great” we are and our feigned calm. Don’t worry. We all sputter our way through life, and if we are really lucky, we provide inspiration or entertainment along the way. Thanks for the post.

    • Richard June 17, 2014 at 4:58 pm #

      Geof-

      I meant it.

      R.

      • Geof June 18, 2014 at 7:28 am #

        Reading back over my post, I apologize. I never meant it as condescending as it reads. The truth is I like so many on here have read many of your works and am in awe of what you are able to capture on paper or monitor. You capture much of our rawness even in the moments you allow your frustrations to come through.

        I don’t know if you think of yourself as a leader of us, but I and many others probably do. Even in propping us up, you perform the role of a good leader. Most of us lack your eloquence. When it comes to describing the thoughts and feelings I had going through the MS diagnosis, I frequently direct family and friends to read your books. I haven’t the gift to share openly what MS takes, even with family and friends. I lack the words to describe experiences I tend to think can only be understood by living them. Since I have no desire to inflict such things upon my family and friends, I take comfort in directing them to your books and more recently your blog for even the anger is genuine and shared. Thank you for saying what I am rarely able to write much less say.

  19. Christopher June 17, 2014 at 6:40 pm #

    Anger means you are fighting… it’s the codependent brother-in-law/sister-in-law to grief.

    A few years ago a friend of my aunt and uncle, a pediatric doctor here in Los Angeles, told me about two cases at his hospital of teenagers with fulminant multiple sclerosis (aka Marburg disease) within a few weeks of each other. Very rare for teenagers–let alone anyone–and very sad. You never know, and it strikes without mercy. I don’t think they had time to grieve or get angry.

    • Richard June 17, 2014 at 8:01 pm #

      Sad.

      R.

  20. Emily June 17, 2014 at 8:57 pm #

    I am angry too. Very angry. I am going to therapy to deal with it. We do exposures in therapy where I have to close my eyes and sit and feel the anger, in an attempt to deal with it and eventually move past it.

    Thank you for writing about our truths and real feelings!

    • Richard June 18, 2014 at 7:38 pm #

      Emily-

      My best to you.

      R.

  21. Matt June 18, 2014 at 7:40 am #

    There is a new clinical trial for ms. Go to stemgenex.com to read about it. Like Richard said before there is no stopping the stem cell movement.

    • Richard June 18, 2014 at 7:38 pm #

      Amen.

      R.

  22. Christopher June 18, 2014 at 12:35 pm #

    Stem cells have the promise to do a lot of good someday. But stem cells derived from adipose (fat tissue) aren’t effective, and neither is injecting them intravenously. Stem cells derived from fatty tissue from an adult over 25 years of age are definitely not effective. At least not now. There are still many years of work ahead using adult stem cells before they become effective at repairing neurological damage… if at all. Other types of adult stem cells, and other infusion methods, may work somewhat better but that remains to be seen. The best chance are ESCs–embryonic stem cells. They are much more vital and energetic with less genetic damage. But right now they aren’t safe enough to use in most situations as they are too good at proliferating and cause malignancy. Please be careful with the information provided by all of these companies making promises and/or offering clinical trials with stem cells derived from fat tissue. Right now the therapy just doesn’t work. Also there is a doctor in Australia making incredible claims to have stopped and reversed MS with hematopoietic stem cells from the patient’s own blood. On the face of it it looks like it worked for most of his patients, but there are too many unresolved questions. Also the participants were caught in an early stage of active MS and the trial was was not randomized. The same goes for a Swedish trial that has hit its five-year mark earlier this year. These trials have shown that they have arrested MS at an early, active stage. The other part that is very important to note is that all the trial patients had their immune systems wiped out with chemotherapy first. It has been shown before that this ‘re-boot’ of the immune system can be effective, and give the body time to repair damage on its own.

    As far as stem cells repairing damage done over many years… I’m sorry to say that there hasn’t yet been any success yet. I truly hope for success soon, but I also believe that giving good unbiased and unadulterated information to keep people from more harm is much more important than possibly quashing their expectations near-term. I would say to do your own research and make your own decisions, but get the best information available. You know… universities aren’t just for the students. Contact some university researchers and grad students in molecular biology. Hell, contact them all! Go to the open houses at those universities and bring a pad with all your questions. At some point you’ll be right there at the bleeding edge of the state of the field along with the scientists doing the research.

    And, it’s worth it.

    • Yvonne June 18, 2014 at 5:05 pm #

      That was very informative Christopher. Thank you. So many of these companies are predators, especially to newbies or those who are in PPMS. At about $15k to enter these “trials” people need real expectations not propaganda and quackery.

    • Richard June 18, 2014 at 7:47 pm #

      Thanks. We should be educated consumers. I agree. My stem cells are autollogous. My own. I have no argument with that.

      Best,
      R.

    • James June 18, 2014 at 11:01 pm #

      Have you heard of an embryonic stem cell study going on @UCONN sounds promising.they say a lot better than bone marrow derived stem cells

  23. Matt June 18, 2014 at 6:08 pm #

    We’ll good info but I had it done and have great results and I am 42 years old. My lesion on my spine is gone and I hope it stays gone don’t know if it is cure but it’s better than the crap drugs they give us that have the side effects of the symptoms of ms! The government contacted them to do the trial because they have had great results! I just wanted to let people know of the trial and to let them know I had it done on my own dollar not a trial. Sorry if I you thought I was sending over false information. I did my research and decided to have it done! Peace

    • Richard June 18, 2014 at 7:49 pm #

      Matt-

      I thought no such thing.

      R.

  24. Christopher June 19, 2014 at 12:30 am #

    Matt;

    If that was aimed at me, I don’t think you are giving false information. I am glad whatever procedure you had done helped you. But there are many, many variables involved besides just the stem cells. The list would be too long to post here. My post was about presenting information based on what I know as a former molecular bio student and research volunteer–I had to drop out due to my MS. I think it’s important to let people know that there’s a lot of promise in this medical technology, but it needs to be tempered with the practical realities of what is possible right now, for the greatest number of people, involving mainly what is safe and effective. That’s all.

    • Richard June 19, 2014 at 9:17 am #

      Christopher and Matt-

      I am confused. Will write about it.

      R.

  25. Nik June 28, 2014 at 2:10 pm #

    Wow. I am new. So very new to this. Only 12 days in and not a firm diagnosis yet. But I am happy to have found this blog. In my new fears, I find it comforting.