Be Warned

I am interested hearing and actually listening to more voices than my own for the book I have begun. A major theme of the book is going to be hope, always from a patient perspective. My friend Jerome Groopman wrote about the need for physicians to foster hope in The Anatomy of Hope. Great book. Hope is a complex subject, one that can be approached from varying angles.
Some see the word as overused and meaningless. What do you think? What is the relationship between hope and faith. I am particularly interested in that question. Can an atheist know hope? Does hope by definition have to exist in a religious framework? I believe there should be secular hope. Do you agree?
I want to know how real and important hope is. Do you believe hope is real? I really do not know how often people think about these questions. On the other hand, I have to think anyone reading this blog knows sickness. Maybe you are ill or a family member or friend lives with an illness.
I am interested in more than MS. In the past many months, I have heard from people around the world dealing with a range of conditions. Please think and talk to family and friends about it. And please do not bother to send me stories, thoughts, opinions or whatever. Do not waste your time. I am not there yet. It will be a while. I am planting the thought with you now and just hoping it will grow.

29 Responses to Be Warned

  1. chris arnold August 31, 2014 at 4:19 pm #

    We are all deal’t a hand of cards. No choice but to live with it.

  2. Nik August 31, 2014 at 6:09 pm #

    I hope there’s hope

  3. Amy Corcoran-Hunt August 31, 2014 at 6:32 pm #

    Atheists (I am one) know hope. It’s grounded not in waiting for a supreme being to hear my prayers, answer them, take an interest in me, suspend the natural order in my favor. It’s grounded in things like your stem cell trial. Humanity, capable of great things — like giving new life to oligodentracytes — was once a terrified tribe of primates who knew nothing. Look at us. I have hope v

  4. Jan August 31, 2014 at 6:48 pm #

    No stories, per your request. (Maybe I should be totally silent just now?)

    Perhaps some questions to ponder as you embark on this journey may include, “In what or in whom do you hope?” “What do you hope for?” “Is hope limited to your own personal longings? …To getting what you want? …If you don’t, why still hope?” “What exactly does ‘hope’ mean to you?” “How can you reconcile ‘hope’ with firsthand experience of severe illness? Of death? Of mistreatment (read the news)?” “Why even hope?” “Why does hope matter to you?” “How does ‘hope’ influence your perspective, your actions, if at all?” “What does ‘hope’ really mean to you? To others who know you?”

  5. Grandma August 31, 2014 at 8:01 pm #

    I believe hope is wanting something to happen, and faith is believing that it can happen

    • Yvonne August 31, 2014 at 10:20 pm #

      So if there is no faith there is no belief and all you do is want? I hope not. 😉

      • Grandma September 2, 2014 at 10:59 am #

        Maybe what I should have said is “Hope is wanting something to happen and Faith is trusting that it can happen”. Believing is probably the wrong word.

  6. Yvonne August 31, 2014 at 10:49 pm #

    For me, I hope there is a cure for many of the diseases we have today within my lifetime. Because of the greed of big pharm, I have no faith that it will happen for many of the diseases including mine, MS. So I recognize the difference and I believe they are not easily distinguished or mutually exclusive. Faith to me is not just religious so I don’t consider myself an atheist because I believe in something. My faith is in research and science to solve the mystery of disease. I appreciate everyone who tells me they are praying for me but I do not have hope that those prayers will change the course of my disease. I understand it gives them more comfort to believe and have faith that it helps somehow. I have faith that I will not give up even as this disease marches. My hope is I can stay true to that faith no matter what happens.

  7. Mark September 1, 2014 at 7:12 am #

    Got it! Let me know when you’re ready.

    • Jan September 1, 2014 at 2:07 pm #

      Have to say that I liked your response. You are a good listener, and I shall take heed!

    • Jack September 3, 2014 at 4:17 pm #

      Me too.

  8. Judith Mercado September 1, 2014 at 11:32 am #

    In over forty years with RRMS, hope has been the magic ingredient that sustained a belief in renewal, despite overwhelming physical evidence to the contrary. What form that renewal takes may be unexpected, but it will happen if one is open to it. I believe this to be true whether one is struggling with chronic illness, loss of a loved one, or any major life challenge. In the end, my belief is consistent with Viktor Frankl’s emphasis on finding meaning in all forms of existence, even the most sordid ones, thereby, finding a reason to continue living. Though I am the daughter of two ministers, I think accessing that meaning can occur independently of religious belief. That said, a deeply challenging life experience is likely to have some effect on one’s faith and spirituality. The challenge is to integrate successfully the adverse circumstances. Hope, however, one defines it, aids that process.

  9. David September 1, 2014 at 12:04 pm #

    Hope is real because most of us have it.It might have religious influence but it might not.Faith is a gift that cannot be explained,I think.Judge no one,live one life.I try the best I can to “Make Hope A Habit”.Anyone watching me have hope that I will beat MS might think I have failed.The disease takes more and more without ever retreating even a bit.When you want more details I am here. Good luck with your next book!

  10. Sally September 1, 2014 at 5:24 pm #

    Faith is believing that God can cure me, if He wants to do so.
    Hope comes in as “I sure hope He wants to, and fairly soon”

  11. Mike September 1, 2014 at 6:36 pm #

    I think you forgot something … Love
    Doesn’t the saying go Faith, Hope and Love. With Love being the greatest of all. I know I read that somewhere. And I am not very religious for the record. I just like to read. Good luck on your journey.

    • Jan September 4, 2014 at 4:22 pm #

      Mike, this is just for you: yes, it’s from a Bible verse in the New Testament, 1 Corinthians 13:13. And, I understand, context is also important with any verse.

  12. Bill Garcia September 2, 2014 at 1:53 am #

    What an interesting question you pose. There is quite a big difference in HOPE and FAITH, at least in my opinion. And we all know what they say about opinions.

    HOPE is secular is and by definition does belong inside the religious framework. FAITH however is what religion is built. One is asked to believe in something of which there is no proof. Most Christians would say it takes an unyielding FAITH to believe in God, if one were to HOPE there was a God then they would have no FAITH.

    As for FAITH and HOPE with a chronic illness one might say the roles of the words are reversed. We HOPE with all of heart and might a cure will be found for whatever disease we or a family member or a friend may have. That HOPE is so strong we begin to believe a cure will be found, therefore, HOPE as it pertains to an illness becomes like FAITH in religion where one believes there is a God with an unyielding FAITH.

    HOPE is stronger when it is applied to wishing for or dreaming of a cure for terrible disease like MS for example. FAITH is not quite as strong as HOPE when it comes to finding a cure.

    An atheist can know HOPE. Anyone can know HOPE. Atheist can also know FAITH just not in the religious form obviously because they believe there is no God.

    Lastly people must HOPE for HOPE is much like a dream, a desire for something. where would the world be if people did not dream. Much like he young girl that grew up watching the cheerleaders for the local high school dreaming one day to become one of those cheerleaders. Then the day comes for try outs and now instead of dreaming she sits there HOPING she made the squad.

    HOPE and DREAM go together. FAITH, well FAITH stand alone. Either you have it or you don’t.

    Ok I have bored you long enough Best of Luck on the book, I will definitely give it a read.

  13. henriette September 3, 2014 at 6:38 am #

    “Fail, Fail Again, Fail Better”… Oscar Wilde gives me hope. or maybe it was Samuel Beckett. I know it wasn’t Eric Cantor….

    • Richard September 4, 2014 at 6:53 am #

      Eruc Cantor gives me hope he will vanish into corporate America, only seen at the bank.

    • Geof September 5, 2014 at 7:42 am #

      That quote was from Beckett in Worstward Ho, and it is one of my favorites.

      “Ever tried. Ever failed. No matter. Try again. Fail again. Fail better.”

  14. Sandy September 3, 2014 at 8:32 am #

    I have had to think about this one for a while. Richard, that’s one of your many gifts-making others think hard.

    I know I have hope but I had to think about why I have it. Why in the face of what is supposed to be an incurable disease I still have hope. And a lot of it. How can I explain it.

    I came to the realization that I know I have hope because I first have it for others. Those hit by natural or man made tragedy. Tornado, war, poverty, victims of crime or cancer I have hope for all the folks who endure these. That’s easy. So why would I have hope for myself when I know there is no known cure? Why not? Maybe its because I see it work. Victims recover, rebuild, get over their tragedy. So why not spend a little of that hope on myself and MS in general. I guess too that because without hope there would be no search for a cure…why bother.

    I am also a big believer in brain chemistry. Our brains are chemical soup and we can do a lot to influence that chemistry. Being positive, hopeful, and happy can do a lot to keep the chemistry right.


  15. Joyce Cohen September 7, 2014 at 11:24 am #

    Just a thought, Richard, on hope.
    I hold to the idea of “the hopelessness of the Buddha”:
    to be in that place where one isn’t attached to hoping AND one isn’t anticipating
    the worst….”hopelessness” in its best sense. I doubt I have ever truly achieved this,
    but I aspire……………..

  16. Andrew September 11, 2014 at 2:26 am #

    “Hope is the most vulgar word in the English language.” Ursule Molinaro Ursule was a dear friend of mine for many years. She has often been called “a writer’s writer” for the unique quality of her prose. Her dark humor and wry observation is apparent in her novels, plays, and short stories. I believe her notions about “hope” actually evolved to comport with the comments written by Joyce Cohen. Escaping from a Nazi prison in France, before being sent to a “work camp” for the crime of hiding Jews, her life experiences molded her world view. I differ. When I was first diagnosed with MS, I participated in the MS Society fundraising walk. I received a red rubber band bracelet with the word “hope” cut into it. The notion was that we walked for the hope of a cure. Since then the Natl MS Soc. has changed to orange with a slash through MS in their rubber band bracelets. My red one is old and worn and very faded to a flat pink color. So while hope has literally faded, I still have small moments of hope daily when I am headed to the bathroom. Living with MS and Crohn’s Disease, I always hope I will get to the bathroom in time–sometimes I make it, sometimes I don’t, but I have totally given up any faith that I can “hold it.” So perhaps this is a banal reduction of hope and faith, but I do have deeper thoughts similar to those shared by Sandy. I very sincerely hope that the stem cell treatments Richard is having yield positive results for him and for the future of MS treatments. Thanks, Richard, for your perseverance.

  17. jonathan katz September 11, 2014 at 5:53 pm #

    Hope is great stuff. False hope can be cruel.. I don’t like the word cure. It seems out of sequence. Cause than Cure. I have been living with MS for more than 14 years and I’m not an easy person to live with. I am trying to learn patience and humility. “Comedy is easy. MS is hard” Thank you Richard for providing this great forum.

  18. Geof September 12, 2014 at 10:31 am #

    Thanks for the primer. It’s been a while since I took time to think about the role hope plays in our family life, and this post has given me thinking material lasting me for weeks.

  19. Sarah September 12, 2014 at 6:22 pm #

    HOPE is thinking, praying, crying, researching, praying, asking, wishing, believing that something better will come, that something will change, that something will get better, that a cure will be found.

    It is knowing that one day my moms legs will work.

    It is knowing that one day my mom will not need a wheelchair.

    it is knowing that one day my mom will be able to feed herself again.

    It is knowing that one day we will be able to walk hand in hand and thank those that found a cure.

    HOPE is the only thing that keeps me going.

  20. GW September 20, 2014 at 5:47 pm #

    This post has forced me to think about hope, so thanks. My daughter’s middle name is Hope, so 20 years ago I had it! Thinking about now…..

  21. Tracy McReynolds December 3, 2014 at 2:32 am #

    All I know is….My mother had ALS = hopelessness. I have MS = hope. The amount of research happening in diseases like, MS, Cancers, etc..provide me hope for a better day. ALS provided no such hope. My faith is in our human race! We will find a way to cope with the diseases and chronic conditions we live with.

  22. Melodie January 1, 2015 at 2:31 pm #

    I have had to give up so much to this disease, MS. For myself I feel that if I don’t have hope I will have nothing left, so I cling to it. Hope for a cure, hope the cure comes before I die, hope that I might get to do the things I miss so much, simple things like walking, driving, sewing, gardening, reading without seeing double, using both my hands, etc., etc., etc.