A Broader Agenda

By my count, Journey Man rests on a foundation of about ninety-five posts. As we approach 100, which is approximately how I feel, it occurs to me this might be a good time to measure where we are and what we may have accomplished. I never liked and did not much read blogs. This is what I wrote about them in my first post last year.
Me, a blogger? Not in this lifetime, I have said. Blogs are self-indulgent, self-serving screeds, often irresponsible, frequently inaccurate and commonly incendiary. I think bloggers like to play with matches. Hmm. I might want to consider eating those words. My frame of reference had been blogs about politics, in which I still argue there is a sameness and a numbing tone. I have no plans to chew on those thoughts at dinner tonight.
Does Journey Man gingerly step into the quicksand of self-indulgence? Enough about me, how do you think I am doing? I hope not. It is true I write about myself, but I continue to argue that while illnesses are different, the coping issues that come in the same package are remarkably similar. I have wanted to build a marketplace in which give and take is the currency of the realm. So many of you own this blog.
My disappointment is that the blog focuses on MS, even as I have hoped to write about other chronic conditions. Though the coping challenges are similar, people may not tune in if they believe you are talking to someone else. My second book, Strong at the Broken Places, told the stories of six individuals living with different problems. From ALS to non-Hodgkin’s lymphoma, Crohn’s Disease to muscular dystrophy, individuals revealed themselves.
That book included my friend, Larry Fricks, who battles bipolar disorder. Mental illness is an under explored subject. My point is, there is a broader agenda to be addressed than we have tackled. My question is whether that idea appeals to everyone. Should we widen the lens or just sharpen our focus? My answer is that I would like to stay on MS for the most part but occasionally wander into other pastures, especially when there are psychological or practical issues that apply to all.
So what do you think?

61 Responses to A Broader Agenda

  1. Laurie September 17, 2014 at 9:58 am #

    Richard,

    I have posted on your SATBP board and am glad to read your posts. There are some common factors-fear, frustration, anger-with all illnesses without a cure. Write on.

    Laurie

    • Glen Fauble September 17, 2014 at 10:15 am #

      I agree with Laurie’s statement this site is an important roadmap for those suffering use for guidance.

      This gives people who are newly diagnosed clear idea what may be in their future. As you have stated each person will suffer differently than another it is clearly an individualized problem. It uses no known .and will be individualized every individual who is plagued with MS

  2. Louise September 17, 2014 at 1:15 pm #

    Hmm. Rather than being like other chronic diseases, I find MS to be much like being old. So..as many of the problems,fears,losses of MS are similar to those of aging, you (we) are writing for a broader audience.

    • Richard M. Cohen September 17, 2014 at 8:28 pm #

      True, but that may apply more equally to other diseases than you thionk.

      R.

    • Heather September 23, 2014 at 9:58 pm #

      My husband and I are going through a nightmare. He was diagnosed in 2013 and has now lost his job. Does one ever have a good day with MS? My husband has lost his “happy-go-lucky” personality. How do we find our feet again?

  3. kathleen September 17, 2014 at 1:44 pm #

    I have been following your posts for sometime now

    Your words have helped me, the healthy spouse, deal with my anger, resentment and frustrations toward my husbands chronic health problems. Reading your posts and the replies have helped me understand how my husband must be feeling inside. He is a man of little words and doesn’t share his feelings much. I am going through this journey with him and its sucks sometimes.

    My husband has Retinitis Pigmentosa (RP) has only 3% of his peripheral vision remaining. He has Crohn’s Disease and spondylitis of the spine, a lovely side-effect of the Crohn’s. He never feels good and because he never feels good we rarely go out together. I keep busy with work and my outside interests. But I am living my own life.

    • Richard M. Cohen September 17, 2014 at 8:32 pm #

      You are traveling a tough road. I am sorry.

      Best,
      R.

      • kathleen September 18, 2014 at 12:35 pm #

        Thank you, Richard. It’s a tough road, but one I am happy to travel.

        I, too, think your blog should be about MS. I just wanted to put my 2 cents in, that it’s hard journey for the spouse/significant other of a chronically ill person.

  4. Jan September 17, 2014 at 3:29 pm #

    Hi Richard,

    I think it’s good to periodically question and evaluate.

    Personally? Know that your blog is my one and only MS connection and a part of my “status quo” after 9 years of MS. The pressure’s on now, eh? (Just returned from Canada–that word works there). This always meds-free former athlete cannot mentally handle MS support groups or other MS-identifiable activities (very nice people, but I just can’t. Or won’t).

    Your blog inspired me to take my Kindle and Groopman’s “The Anatomy of Hope” for the plane rides. Wasn’t going to respond until finished, but I saw your recent post. I wouldn’t even have known about that book had it not been for your blog. Great insight: I’m on deadline right now but look forward to finishing.

    That said, I think that we ourselves can only truly impart to others what we ourselves have experienced. It would, I think, be crazy to say, “Bring it on” regarding MS, but by having it, by experiencing the emotions, by “being real,” and by being a great writer, I think that you are in a unique position to really speak to many. That is a gift. (To be clear, not the MS but rather what you do with it: your contribution).

    Yes, do stick with MS (because you truly understand it). But do feel free to explore some nearby pastures, as well. It’s likely that the cancer you experienced can have physical emotions independent of MS but with similar emotional connections that can be appropriately tied together. Your friend Larry likely has relatable mental health issues. For example: stigma. Is it still more “socially acceptable” to have a heart attack than a mental health issue or be in a wheelchair from MS? And who is responsible for that stigma? Others only? Maybe how we ourselves view and discuss it?

    I’ll comment another time about the word, “choice.”

    I love to learn. How you wield your camera lens, be it through a panoramic or tightly focused capture, will all likely educate and be relatable. You can even open our own focus to realize that there are other pictures out there to view and absorb, too.

    Your book “Blindsided” years ago brought to light relatable feelings. Not all the same issues, but some. “Wow, he really gets it. I am not alone in my feelings.” One hundred posts may seem like a lot, but I also find that topics don’t run dry because of so very many related issues to consider. And, better you than me–because as you can see, I often “talk” in my emails; your blogs say a lot very succinctly. And your humor is fun. Keep it up!

    • Richard M. Cohen September 17, 2014 at 8:37 pm #

      You are right. The well will not run dry. Sadly, the agendfadoes nor shrink.

      Best,
      R.

    • Jan September 20, 2014 at 2:21 pm #

      And just to be clear, “status quo” for me is not synonymous with the absence of pain or the many MS-related issues, some of them rather difficult (hide them as I may). Instead, it refers to my finally being comfortable with my health choices and pared-down investigative approaches. (The latest one is being mostly dairy-free, grain-free–it’s helping).

      I’m comfortable enough, not with MS issues, but with the choices I make that can at times push through pain and hardship, yet at other times realize when to sensibly cave. It’s about defining my own “new normal” and living within boundaries of choice.

  5. Debra September 17, 2014 at 3:45 pm #

    Having been straddled with the challenge of MS and now the new twists of progressive ms, I look forward to reading your latest because It comforts me, not exactly sure how, it just does. Your speaking of To be mobile or not, with the chair/walker blog really hit home as I stand or should I say sit at that same precipice.

    Maybe hearing more about other diseases would get me out of my ms head a bit. Try me!

    • Richard M. Cohen September 17, 2014 at 8:39 pm #

      Will do.

      Best,
      R.

  6. Yvonne September 17, 2014 at 4:03 pm #

    Please continue to give those of us that tried and/or are fed up with: support groups, blogs that are too clinical or too “the sun will come out tomorrow ” friends,colleagues and family that mean well but can annoy with asking about presenting EVERYTHING they read or hear , a place to come and frankly discuss MS. I’m okay with sharing you with others who suffer from chronic debilating disease but I was happy to find this blog. Too tired and cranky to do the work to find a new one so my vote is 80/20 MS.

    • Richard M. Cohen September 17, 2014 at 8:41 pm #

      Deal.

      R.

  7. nancy s September 17, 2014 at 5:36 pm #

    I’d agree wiith Yvonne and the 80/20. I’ve found it comforting to know that my feelings/challlenges are echoed by so many. I’ve also been googling the various physical coping devices now that I have progressed to SPMS. Thank you all for your input.

    • Richard M. Cohen September 17, 2014 at 8:42 pm #

      This is an example of community.

      R.

    • Jan September 18, 2014 at 5:54 pm #

      Hi Nancy, I was bumped into SPMS two years ago; for me, “status quo” is not synonymous with “everything is great,” “no changes,” “no issues,” or “no progression;” simply with being comfortable now with the approaches I am taking (or not taking). My most recent initiative is being nearly two months dairy-free, grain-free (though I do eat rice), and it has helped. Everyone is different. I hope you find what works for you. I have been encouraged by this community, as well.

      • nancy s September 20, 2014 at 9:50 am #

        Thank you. Sounds like a modification of Dr. Terry Wahl’s diet. I haven’t been able to wrap my head around giving up on yogurt and ice cream. I guess there are many and various ‘head issues’ out there!

      • Laura September 26, 2014 at 12:57 pm #

        Dary free and grain free helped me a lot I do enjoy coconut ice cream and gluten free pizza. It is manageable

  8. Elizabeth September 17, 2014 at 5:44 pm #

    I appreciate that you set the subject and us minions can pick up and drop off wherever we choose without feeling lost or that we have to catch up. My brain can’t handle that kind of stress. You are a wonderful writer and you speak the truth. Some days are sunny and bright, other days are gloomy and dark. Even if I’m not on the same page as you, when you are bright, it reminds me that it’s not all bad. When you’re grumpy and I’m not, it reminds me to appreciate the good days.

    You have so much more experience here and I feel like I’m getting lessons in life. Something about the tone of your blog keeps the ugly out. It is the only one I read. I don’t need a “support” group, I need a place to vent, to celebrate, and to learn. This community is just right for me. I think the chronic disease or even autoimmune disease community is similar but there’s a lot of whining going on in other places that I would hate to see here. Bitching is ok, but whining is out for me.

    Write on Richard!

    • Richard M. Cohen September 17, 2014 at 8:45 pm #

      Thanks,

      R.

  9. Grandma September 17, 2014 at 7:45 pm #

    Todays subject could not have come at a better time for me! I could use all the advise,suggestions or opinions that the people in this group can offer on alcoholism, depression and domestic violence. My daughter in law is sitting in jail right now for driving drunk with two of her children in the car and trying to drag my son down the street when he tried to take the little one out of the car. My son fell on the other son but luckily they both only suffered scrapes and bruises. She missed the little ones first day of kindergarten and the loss of his first teeth. She’ll never get those days back. My husband and I don’t know what to do next. We live in another state but I feel as though my son and grandsons need us. Their house has three floors which would be very difficult for me but I have to do something. Any suggestions or advise would be truly appreciated.

    • Richard M. Cohen September 17, 2014 at 8:48 pm #

      Gosh. I do not know. Follow your instincts.

      R.

    • cesca September 19, 2014 at 1:36 am #

      She needs rehab, not jail. I’ve heard Al-Anon is very helpful…I’ll bet they can steer your son in the right direction.
      For you, maybe there’s a hotel with accessible rooms near your son’s home.
      Good luck to you and your son.

      ……cesca.

      • Grandma September 19, 2014 at 7:17 pm #

        cesca I agree with you that she needs rehab…but I don’t know how to make her go. I love her and I want what’s best for her but my son and grandsons need to be safe too. Al-Anon is definitely needed for her and the family! Maybe the courts will require rehab. I hope so because that’s the only way she will go. We are looking for a place to rent close to them so the kids can have a place to go if needed. Thank you for taking the time to write. The suggestions seem right on target.

      • nancy s September 20, 2014 at 10:00 am #

        Unfortunately, I believe rehap is only successful if it’s what the afflicted wants. From a fellow grandma, I can’t imagine what you are going through. Strength and faith.

  10. MB September 17, 2014 at 8:06 pm #

    I’ll vote for 95-5 as long as the 5 only encompasses those with a progressive debilitating disease where death is not imminent.

    I think it’s important to stay focused on MS because it’s a train wreck of a disease due to the randomness of the path it follows for each individual.

    I have gone to multiple doctors and therapists trying to get some help managing my symptoms. “Well…no one knows for sure…that’s the nature of MS…let me write a script for that and that and that…” It’s exhausting and defeating.

    I think the attitudes of people living with MS range from Tigger to Eeyore on the Winnie the Pooh character scale, with Eeyore being the one I relate to most. I see a lot of the other characters here on your blog and I like that they sometimes keep my doom and gloom attitude in check.

    Living in a world with the chronically healthy (thanks for that term) is tough at times.
    Your blog has helped me feel less isolated dealing with this disease. Whatever you do with the blog will be fine because your writing is engaging. My only advice is not to water it down by losing focus.

    • Richard M. Cohen September 17, 2014 at 8:51 pm #

      I hear you.

      R.

  11. Nik September 17, 2014 at 9:20 pm #

    Oh wow. Love this one. The responses have been incredible. I am only speaking up to agree with the 80/20 or better yet 95/5. I keep repeating myself to say I am new to this. New to MS, to your blog. It’s really been the only comfort I have since my CIS in June where I went from active mom, teacher to OMG will I ever see or walk straight again? I have had this for longer than doctors are willing to agree with yet, And I am scared as hell. I am trying to move along in life not spending 100% of my awake time focused on what will come, but my pain, dizziness and extreme fatigue hardly let me forget. I love to read this blog and it scares me, but for some reason it’s been my biggest comfort. Your writing and the responses have me checking back pretty much every day. I feel that this is a place I can come and read and feel my emotions with the comfort of knowing we are all dealing with the same things. Whatever you choose I will be here…

    • Richard M. Cohen September 18, 2014 at 9:23 am #

      Thanks for that. My MS focus will remain. Keep going. Medicine is moving forward faster thjan ever. Maybe our lives can improve.

      Best,
      R.

  12. Sandy September 18, 2014 at 9:29 am #

    I think its healthy to know we are not alone. MS is certainly not the worst diagnosis a person can get. Even healthy people have challenges in their lives that I would not be able to endure. I know that every group has their own blogs and if we all stick to our own kind we lose the perspective of the broader society.

    We need to talk to each other but at the same time we need to find our place in the big picture. We want people to understand us. So why not understand others?

    Now having said that…I dont read other blogs. I dont read other MS blogs or those for other diseases. I used to but that got old. My inner Eeyore said so.

    Richard, you have a real knack for stepping back and seeing the big picture and how we fit into it. I say go with it. I think it will be healthy for all of us.

    Sandy

    • Richard M. Cohen September 18, 2014 at 8:28 pm #

      Sandy-

      Thanks.

      Trial and error makes us better.

      R.

  13. Sandra Schneider September 18, 2014 at 9:45 am #

    Well..You are a journalist with MS. As a journalist, your instinct and responsibility is to see the suffering world and chronicle it. As MS patients, we are, selfishly, hungrier to read and commiserate about this disease. We are certainly all snowflakes, none of us exactly alike in symptoms and experiences. But we are caught in the same blizzard: sometimes it helps to know we are all trying to shovel out together. So, despite the fact that I suffer from many more illnesses than MS, I choose to visit MS blogs almost exclusively because they seem to ring the truest to my reality. So, I guess, selfishly, I vote for an MS blog. But, this is truly your blog and I will continue to visit it faithfully regardless of your decision.

    • Richard M. Cohen September 18, 2014 at 8:31 pm #

      I should always be on trial. I trust I will hear about bad verdicts.

      R.

  14. Julie Duke September 18, 2014 at 12:37 pm #

    As someone with MS and Rheumatoid Arthritis I find your blog refreshing and real. You give an honest picture of life with a chronic condition. You may already be touching many with multiple chronic illnesses. Keep it up and expand if you want…… You have become a friend that I look forward to hearing from.

    • Richard M. Cohen September 18, 2014 at 8:32 pm #

      Thanks, pal.

      R.

  15. Joan September 18, 2014 at 12:51 pm #

    I’ve read enough to know that whatever moves you Richard, is interesting. I’d vote for zero hard and fast rules about content. Just keep doing what you’ve been doing, write about what you’re interested in, and I’ll read, maybe comment, and hopefully remember to say thank you. If today is MS, and tomorrow you write about banana pudding, so be it. I’ll try to figure out if there’s a deeper message in the pudding! Thanks for your most generous writing…that’s what keeps me coming back.

    • Jack September 18, 2014 at 2:00 pm #

      As I was reading the comments and formulating my response, I came to Joan’s comment that expressed my sentiments exactly. No rules, no restrictive percentages, write about what moves you at the moment. Our personal experiences create the lens through which we see the world. You can’t escape the influence of MS on your perspective, no matter what topic you choose to explore. Whatever you write about, the gorilla in the room still looms and those of us in your loyal community of blog followers will continue to recognize that, between the lines, you are writing about us.

    • Yvonne September 18, 2014 at 6:03 pm #

      Joan-I love banana pudding 🙂 and finding a deeper message in the making and consuming this delicious treat from Richard’s perspective would be interesting indeed. I’m in 🙂

    • Richard M. Cohen September 18, 2014 at 8:34 pm #

      Thanks. How about rice pudding?

      R.

      • Yvonne September 18, 2014 at 10:33 pm #

        My second fav pudding 😉

  16. Geof September 18, 2014 at 2:57 pm #

    I have read all your books, and Blindsided was the first book I read about living with MS. Your insight into what you know and ability, to write about it in ways we don’t have to be ashamed to say we relate, is a gift. The only downside I see to this post is the potential limits of your experience. Ultimately, we are but onlookers and hangers-on for the Journey Man’s trip. I have no doubt MS will continue to be a part, and many of us want to read about that part.

    However, the reminders of MS being only part of a shared of the trip are welcome. I for one, like reminders my MS is not the be all and end all of experience. Many days, I need that reminder.

    BTW, did you know there is still a group of us keeping up over email from the message board started for Strong at the Broken Places? That message board was great, and the thread which we all came back to was one simply asking how we were doing today. Across conditions, what we needed was the touchstone, someone able to understand the emotions of living with chronic conditions. I suspect many reading/posting on here do so for similar reasons, to see the daily trials and triumphs of living with/despite chronic conditions. Thank you.

    • Richard M. Cohen September 18, 2014 at 8:39 pm #

      I read and hear comments about that message board. What a source of satisfactiopn. And I love the connections here.

      R.

  17. Brian September 18, 2014 at 3:10 pm #

    Stay the course and remain focused on MS. I was diagnosed with Primary Progressive MS

    on 10.9.06 and I feel the core should become more taut for the entire MS community!

    Chronic illness sucks, no matter the disease DX, but trying to accurately cover a sweeping

    range of sicknesses would be daunting at best. To be metaphorical, the Multiple Sclerosis

    community has been concentrating on removing the splinter while the hand is becoming

    gangrene.

    I enjoy writing although I share your distaste for blogs. I wanted to start a website called

    “Minutia.com” so, hopefully, all the cute pictures of cats and other trivia could find an

    exclusive home. I can dream.

    Thank you, though, for putting a voice out there to help those of us and their families with

    this potentially life changing illness.

    Brian

    • Richard M. Cohen September 18, 2014 at 8:42 pm #

      Thank you, Brian. It is a privilege.

      Best,
      R.

  18. Vikki Iannucci September 18, 2014 at 8:20 pm #

    I have had MS since I was 17 years old, I am 45 now. In all of the years I have had this disease, I have never found myself able to fully relate to what others were saying until I found this blog. Richard, please stay focused on MS, for your words are inspiring, and do more for others than you can ever possibly know.

    • Richard M. Cohen September 18, 2014 at 8:43 pm #

      I hear you.

      R.

  19. MB September 18, 2014 at 10:17 pm #

    I always wanted to ask but never found the right post until this one.

    How are the five people whose lives you followed in “Strong at the Broken Places” doing today?

  20. Christopher September 19, 2014 at 2:16 am #

    I just like reading your entries, and couldn’t tell you which would be a better direction. I think any direction would be good, and the truth would shine through with the way you describe what you observe, Richard. That’s what people seem to connect with. The particulars are just superfluous. All chronic conditions suck. Maybe not equally, but they all have a common element of being misunderstood… like the island of misfit toys. They were all messed up toys, but all different types and somehow managed to find solidarity despite that.

  21. anne NJ September 19, 2014 at 10:00 am #

    Richard,

    I was given the most helpful advice when DX from my Dr…. find a support group….. which I have….. in addition to a monthly MS support group, I also go to a support group for people with autoimmune diseases 2 x a month, , which we share many similarities. The MS blog is important, but I learn from other people w/chronic diseases.. I have a nametag that says “TROUBLE” that was given to me because I seem to ask questions. I always wondered what is the purpose for me having this disease… if I can help someone else it’s ok….. you never know when something u said helps someone else. and laughter is the best medicine…..

  22. Jenny September 19, 2014 at 3:58 pm #

    To sum it all up….we trust your instinct!

  23. Jenny September 19, 2014 at 3:59 pm #

    To sum it all up….we trust your instinct!

  24. Sandy September 20, 2014 at 9:46 am #

    I guess what we really need to figure out is how these other diseased folk will fit in to our bank robbery plan.

  25. Jerry Denick September 20, 2014 at 12:01 pm #

    Richard,
    There is no need to doubt yourself. Your blog provides a close-up view into your journey that we, the readers,can identify with. Your journey may offer much encouragement to many MS sufferers. Please keep blogging. Your blogs have strengthened my spirit Thanks.

  26. Bill Garcia September 20, 2014 at 12:07 pm #

    I vote to stay with MS as the major topic. Though I am also Bipolar I have a much clearer understanding of Bipolar. MS is Amoeba like always changing it shape and you never know what to expect. It’s refreshing to read posts from one who has an undeniable wealth of knowledge to share. It gives some a perspective on what they may expect in the future. When is doubt use the “KISS” method. It stands for Keep It Simple Stupid. I am by no means implying you’re stupid because you are far from it. It’s just a saying I have adopted in my life. MS all the way.

  27. GW September 20, 2014 at 5:00 pm #

    Richard,

    I agree with many of the posts, not a blogger, mostly an observer. Searching under “MS”, when I was diagnosed 9/2012, I came upon your page. Every post has given me reason to think, hope and just get out there. (No easy task as the event that brought me diagnosis was a paralyzing one) Despite the challenges this forum is the one place where all come from the same perspective, I enjoy and appreciate that, so Thank YOU. I say stick to MS and if/when the topic goes elsewhere, so be it.

    This page has been a portal to feeling normal and for that I am very grateful to you!

  28. David September 20, 2014 at 5:30 pm #

    Richard,

    I think you should continue the blog mainly about MS, your journey and ours.

    Like in your second book, please always also include other peoples stories too.

    When I was first diagnosed fifteen years ago I vowed never to be part of a support group.I didn’t want that because I always wanted to fight and beat my ms, not talk about just coping with it.

    Now I am comfortable here, this is my support group and you are the leader.You try new things and always make us feel we just might walk again.

    I feel when I root for the Journeyman I root for all of us

  29. Angela September 23, 2014 at 1:19 pm #

    Richard – Write what you know. And you know a lot. Life is indeed a ‘journey’ and as that journey unfolds to include an awareness and knowledge of other illnesses and challenges, or life’s simplest joys and achievements, my guess is your audience will welcome those observations too. Write on. – Angela

  30. Laura September 26, 2014 at 1:23 pm #

    Write on Richard

  31. Candy October 21, 2014 at 10:24 am #

    I feel a bit like a voyeur since I don’t have MS nor have a relative with the disease. I found this site after following up on how Richard’s stem cell treatment is going. I am a mom of an only child with a chronic disease. Four years ago my son was diagnosed with aplastic anemia: bone marrow failure. He quit making blood. No white cells to fight infection. No red cells to carry oxygen. No platelets to prevent internal bleeding. The only “cure” is a bone marrow transplant and without siblings that wasn’t an option as non-related transplants aren’t worth the risk. My son is in “remission” but I live with the daily fear that this disease will rear it’s ugly head once again. Damn T-cells! By trade, I’m an occupational therapist. I’ve worked with many patients with varied conditions. I have found the MS group challenging to work with. Too much exercises exacerbates symptoms. Often as an OT the goals focus on returning a pt to their prior level of function and with a progressive disease that’s not usually possible. I try to help people adapt to remain modified independent but (in my experience) MS patients are stubborn and don’t want gadgets that will make a task easier, ie, reacher, dressing stick, sock aide. In reality, that stubborn streak is a blessing because it keeps people going. Acceptance often spells defeat. Anyway, I’ve learned a great deal reading these posts. I know with my son’s diagnosis I feel connected to people in the exact same boat. Though I’ve only met other AA families online, I feel like I KNOW them. Family and friends can try to understand but connecting with a bone marrow failure warrior, for me, is priceless. Richard, you are one hell of a writer. You’re like an artist with words. And you’ve mastered the art of sarcasm while writing which I thought was impossible. Keep writing about MS since that’s what you know. I’m hoping your stem cell treatment brings good things your way.