Importance of Staying Stubborn

I am sick of being called stubborn, as if it is a crime.
When my doctor and I found ourselves at the Vatican to participate in an adult stem cell conference a few years ago, we toured the endless long corridors of the Vatican Museum on our way to the Sistine Chapel. I had declined to use a wheelchair, which I soon regretted. My neurologist watched me struggling to stay on my feet and later commented that I certainly was stubborn.
Years earlier, when Blindsided was published, Barbara Walters interviewed Meredith and me for a long segment on 20/20. Barbara noted that I still was taking subways and demanded to know why. I understood from previous conversations that the image of me stumbling along some platform with a train roaring into the station was unfathomable to her. When she demanded to know why, I leaned into her and touched her arm. Because I can, Barbara, I answered.
I had been riding the subways for decades and was not about to jump into a taxi to make someone else comfortable. Meredith had given up the argument long ago. Am I stubborn? I guess so. And so what? All of us should be stubborn and cling to who we are and how we want to live. There are no medals or merit badges in play here, only small satisfactions and the strong desire to maintain a strong sense of self. I think those are critical in combating a chronic condition.
For me this is about control, a valued commodity most of us are forced to trade in much too early. I have stopped paying much attention to others. I listen attentively to myself. I decided what is sensible and what risks are worth taking. Others see risk where I think slow, steady movement is almost foolproof. When in the subways, I keep track of who is around me and stay away from the edge of the platform.
That is called common sense. I see no downside to staying stubborn. I am not going to abandon my identity until it leaves me. I trust my instincts. I believe I will know when to give up and fold my hand. And by the way, after I ran into my neurologist in that crowded corridor at the Vatican Museum, I spotted an empty wheelchair and sat down. I may be crazy, but I am not stupid.

68 Responses to Importance of Staying Stubborn

  1. Grandma June 29, 2015 at 4:26 pm #

    Amen!

  2. Christopher June 29, 2015 at 4:38 pm #

    No one will ever know most of the struggle(s).

    • Richard M. Cohen June 29, 2015 at 6:24 pm #

      Amen.

      R.

  3. Brian L. June 29, 2015 at 6:41 pm #

    That’s funny; I consider myself to be stubborn also, but it manifests itself differently with me. I too was avoiding the wheelchair because it had come To represent surrender to the disease. But then one day I realized that I didn’t go places anymore because it was too exhausting. My life had become stagnant, relying on television and reading to pass the time. And worse, my wife’s life was being affected also because she didn’t like going places without me. So I bit the bullet and got a power chair. Not for everything; I still struggled with walking whenever it was prudent. But it opened up a whole world that I had largely tried to forget about. The grocery store, the mall, sporting events, even walking the dog. Then we started going places we had never been. Las Vegas, LA, DC, cruises, etc. To me, I felt I was being stubborn and not letting MS rule my life. It was how I was showing who’s boss. It’s okay to be defiant, but life is short. Don’t let your pride cause you to miss out on some of it. Just in April, we spent eight days in New York City. Oh my gosh, what a fascinating place!! By the way, anyone considering exploring New York in a power chair, The Wellington Hotel on 7th Avenue is the perfect location. Lots of tourist stuff, all within walking distance. My wife and I both think it was the best trip so far, and it never would have happened without the wheelchair. So why did I go on such a great adventure and create some awesome memories? Because I could!

    • Richard M. Cohen June 29, 2015 at 8:28 pm #

      Thank you. I need to hear this kind of stuff. You are a teacher. This is whjat this blog is all about.

      Best,
      R.

    • Louise June 30, 2015 at 8:43 pm #

      I love your post, Brian. And I am so glad that you and your wife both had a good time in my city!

    • Jan July 1, 2015 at 10:21 pm #

      Yes, Brian… there’s Richard’s word again: perspective. For me, it is something I can gloriously control.

  4. Brian June 29, 2015 at 7:28 pm #

    I concur COMPLETELY!!!

    A phrase I detest is, “quality of life.” I have been in a wheelchair because of progressive MS for 5 years and none of my ambulatory-challenged compatriots have EVER used that term. Life cannot be described as, “quality.” That term can appropriately describe a cut of meat or a product lasting an unusual amount of time, but not life.
    The reason that term continues to spread like an uncontrolled virus is so the abled bodied can feel better about themselves when they visit Uncle Joe in the hospice and he doesn’t pee on himself anymore because a catheter was installed. I’m sure Joe would agree that the days are grand now. Quality is based on perception, it’s not absolute.

    • cohen June 30, 2015 at 1:53 pm #

      A relative term, indeed, though with a bitter tinge. Am I wrong?

      R.

      • Dale June 30, 2015 at 11:29 pm #

        Yes a bitter term indeed. I’m reminded of a woman who decided to opt out of a final round of chemo and enjoy the rest of her life before breast cancer finally overtook her. I didn’t get it back then but I do now.

  5. Dale June 30, 2015 at 12:00 am #

    I was just going to post on “A Wish” that “I miss Richard”. Wow Lily’s graduation must have been great, this is a great topic. You sound inspired and rejuvenated. We tried not to wreck the place.

    I almost gave up being stubborn a little while ago. That would have been a huge mistake. I just have to work harder at not getting angry at those who seem to miss I can’t do everything I used to.

    • cohen June 30, 2015 at 1:55 pm #

      Who among us can?

      R.

  6. Yvonne June 30, 2015 at 11:13 am #

    Man does stubborn cost you. Visiting my sister and family this past week They had an agenda that was filled with stuff I wanted to do. I push my Rollater around and maneuvered obstacles and did almost everything because I stubbornly refused to be left behind. The final day I was exhausted but was going to tackle the Jersey Shore in 90 degree weather when my family said not a good idea. They said you just moved from stubborn to foolish. They were right. 5 hours at the shore in the sun to watch a singing competition on the beach that my g-neph was in would have been fun….5 yrs ago! I think we just have to know when our stubbornness effects other people it becomes selfishness fueled by denial. I stayed home and watched the video and enjoyed their stories knowing if I had gone they would have been to focused on me not passing out 🙂

    • cohen June 30, 2015 at 1:57 pm #

      Stubborn should mean what you want to do, not what others are pushing.

      R.

  7. MB June 30, 2015 at 1:44 pm #

    Being self-conscious has slowly removed me from society. I’d like to be where Brian is but I can’t find the bridge that will get me there, and (I think) the moat is filled with alligators.

    • cohen June 30, 2015 at 2:01 pm #

      Arew you serious? Self-conscious? Please don’t go there. Screw everyone else. They don’t care about you, so why bother with what you think they think, which probably is nothing.

      R.

      • Elizabeth July 5, 2015 at 10:45 am #

        I understand where MB is coming from. I feel like people that know me have certain expectations of what I will do and how I will participate and it’s hard to feel guilty for not helping and participating as much as I used to. I wonder what they are thinking…lazy, anti-social, moody. You’re right Richard screw everyone else but I’ve always been a giver and it’s hard not to be what I used to be. That’s where a little bit of acceptance is needed to cut myself some slack but it’s hard.

  8. Sandy Stolaronek June 30, 2015 at 2:14 pm #

    I always think that I can do things that I should know that I can’t, lol! I always want to try at least. Then, when I realize that it’s going to be too much for me, I give in and give up, haha! I grieve for the ability to do the things that I used to, like just be able to clean the house. I can’t stand up long enough and if I do anything like that, I get fatigued too quickly, although; I take uppers all day to try and keep ahead of the fatigue. They are never enough though. I don’t think I will ever accept this disease and what it prevents me from doing, so yeah, call me stubborn. When it comes to that, I’m stubborn as hell! Hahaha!

    • cohen July 1, 2015 at 10:15 am #

      Good. Keep it up.

      R.

  9. Christopher June 30, 2015 at 2:48 pm #

    You make a very good point, Richard. Albeit, sledgehammer bluntly.

    Being self-conscious (in the vein of insecurity) is a strange monkey to be clinging to someone’s back. How could someone be worried about how he or she may be judged by others when everyone else is pretty much preoccupied with themselves. Here’s something for y’all…

    THERE IS NO AUTHORITY!

    In other words, nobody holds the key and no one wrote the book. We all take cues from the world around us and invent along the way. Life is about discovering yourself in a gigantic universe, not comparing some traits to a meandering flock of sheep. Nobody can tell you what you can and cannot do. Nor can anyone else dictate who you are–he or she would be an arrogant fool to think he or she is an authority. And I’m not referring to the Law here. I completely understand what MB is saying and feeling. It took me years to unlearn bad habits like that. But Richard is right, MB. People, for the most part, give little to no thought about others around them. We’re all barely blips on others’ radars. Life is hard enough by itself, without any further complications from us complicating it with non-issues. We’re all somewhat self-conscious… no one else lives our lives for us! Just got to bust through the fear and trepidation, or you’ll never realize yourself. There’s no secret to any of this! There’s very few people who get what they want or need handed to them. The rest have to work hard, and also bust through their illusions. And they are illusions.

    I apologize for the long rant, but I really do care and I think I have something important to add to the conversation. I also could be very wrong.

    • Linda Lazarus July 1, 2015 at 7:17 am #

      Christopher,
      Your post had one line that was the shot that I needed. So, I threw my head back and swallowed a perfect whiskey of a line. Ah, feels good.
      The line? “Life is hard enough by itself, without any further complications from us complicating it with non-issues.”

    • cohen July 1, 2015 at 10:19 am #

      Amen, though I worry about anybody who agrees with me.

      R.

    • Elizabeth July 5, 2015 at 10:47 am #

      Not wrong. Very well said.

  10. Elizabeth June 30, 2015 at 3:02 pm #

    Ah control! This post hit me on the bullseye. The one thing I have learned in my few short years of being diagnosed is that I have control over what I can control and that is my zone which I am taking as my own. Yes I will push myself too hard. I will collapse after a day of gardening in the sun, but I can still collapse. I can still get up which is the blessing if I fall, that I was standing to begin with.

    I have had to push away those that try to tell me what I should be doing, eating, enjoying. That is my world, in my control at this point and so long as it is in my control. Don’t touch that remote. It’s mine for now.

    With that being said, bless those that support us while we fight these sometimes invisible battles that only we can see. I don’t even understand this crap, how can anyone else. So I do what I need to do for me right now. Fantastic post Richard. It was worth the wait.

    • cohen July 1, 2015 at 10:24 am #

      Too many want to tell us what we should do and warn us about the opposite. Smile and ignore. You are in charge.

      R.

      • Elizabeth July 5, 2015 at 10:50 am #

        That’s funny that you said that Richard. I have been smiling a lot lately. Maybe it’s because I am ignoring and taking control. Progress!

  11. Hannah June 30, 2015 at 3:10 pm #

    Your comment is really helpful, Christopher! Tangent…I believe our American world in particular creates a grand illusion that a lot of people (including myself sometimes) subscribe to. We constantly compare ourselves to a “standard” that is fake and unattainable…unless you have an army of people in the background. Don’t be intimidated by the glossy reflections that appear out there (Facebook, tabloids etc.) The only thing that isn’t edited, and therefore perfect and whole, is your real life. GET AFTER IT!!!

    Richard the Sledgehammer. I like that.

    • cohen July 1, 2015 at 10:26 am #

      That is how I think of myself.

      R.

  12. Betsy June 30, 2015 at 4:49 pm #

    One person’s stuborness is another person’s determination.
    Who is to judge?

    • Jan June 30, 2015 at 9:30 pm #

      Betsy, I liked that. A lot.

      • Amy Corcoran-Hunt July 2, 2015 at 8:33 am #

        I like stubborn but it’s all in how you exercise it. I waited too long, stubbornly, to sell my two-floor condo and get a single floor with elevator. Seemed like giving up to me. But that was wrong. Life is easier now, and not just for me. I can come and go, emphasis “go!” That, in combination with my wheelchair, means I can, for example, finally go play in the neighborhood park with my daughter. That is something to be stubborn about. I suppose we all define stubborn in ways that work for us. This is mine.

  13. Christopher June 30, 2015 at 5:51 pm #

    I forgot to add a Yiddish phrase my great grandmother used to use. It’s very good for people who presume to tell you what you should be doing. It’s:

    “Gay kocken offen yom!”**

    It means, ‘Go shit in the ocean!’

    **glottal stop sounds optional.

    • cohen July 1, 2015 at 4:18 pm #

      I am on Cape Cod. Please don’t.

      R.

    • cohen July 1, 2015 at 4:19 pm #

      I am on Cape Cod. So please don’t.

      R.

      • Jan July 1, 2015 at 10:22 pm #

        I am laughing now.

    • cohen July 1, 2015 at 4:20 pm #

      C.-

      I am on Cape Cod. So please don’t.

      R.

      • Christopher July 1, 2015 at 5:15 pm #

        I won’t. I like the Cape.

  14. Jan June 30, 2015 at 8:04 pm #

    Oh, my, oh, my… that brought an understanding tear. (Thank you).

    I have been called stubborn. And crazy, especially with SPMS and a worst-ever Feb. 2015 attack at about year 10 in which I couldn’t walk through the house. (Stress of a new, non-paying, lying client). Contrast that with…

    Stubborn? Determined? Crazy? Well, I can possibly admit to any of those. But you know what, in a hot city last week, at about 104 deg. at 1 p.m. (no neurologist would recommend this, for sure), I was determined, even if with more labored movement in the heat. Some friends helped find a cool store entrance and water just prior to the start of being crazy happy (backside visible at 56 sec.): https://www.youtube.com/watch?v=ejPbbFYkJVI It was worth it to me. (And I, too, sat for a while afterward).

  15. Jan June 30, 2015 at 9:55 pm #

    …Because I decided what risk I could take. In hindsight, I paid somewhat later in being too tired to walk around a reception room–something I would have easily done if it were not for MS. But really, I spoke with my main friends, saw a few others, and accomplished what I had intended to. The positivity did wonders for my mood, my overall being, it really did. Underneath all of the hoopla, we are all really just people.

    (People who need people, too… and Richard, was your wife really driving you crazy with that song for a few days??!)

    • DianeT July 1, 2015 at 4:10 pm #

      Jan, I watched your ice capades reunion video with admiration and a smile on my face. What a fun, memorable event for you to celebrate, especially in spite of the heat. So glad you were stubborn ( ie. determined) enough to show up and participate.

      • Jan July 1, 2015 at 10:31 pm #

        Thanks, Diane. Of my lifelong skating friends, I was the one of the mind to still skate for fun until well into my 70s. It wasn’t meant to be: and an example of how I can talk about MS, no problem–I just can’t “think” about it too much or too deeply.

        And yes, very glad that I came! 🙂

    • cohen July 1, 2015 at 4:22 pm #

      C.-

      I am on Cape Cod. So please don’t.

      R.

  16. Dale July 2, 2015 at 12:25 am #

    Some folks almost shit in the ocean with all the alarms going off with tornado warnings on Old Cape Cod this morning. I forgive any of you that did. Besides the sharks shit bigger.

  17. Annan Paterson July 2, 2015 at 1:53 am #

    Wow! I can relate! Visiting the UK. Just yesterday I was navigating the crowded, bumpy sidewalks of rush hour Dublin with my numb, weak right leg dragging and walking poles keeping me vertical. My dear husband paving a path. My anger welling at myself, him, the world, the MS. We made it to the commuter rail to find hordes of people taking train to ACDC concert. SRO in trains. But we made it home thanks to friendly taxi driver and promise of takeout Thai food. I am stubborn too. I don’t know how else to do this life! Thanks Richard.

  18. Amy Corcoran-Hunt July 2, 2015 at 8:37 am #

    I’m on Cape Cod too. Our little getaway place. The ramp is finally going in. I have ways of getting in and out with the wheelchair, but it’s unnecessarily difficult. Done with that stubbornness too.

  19. grandma nancy July 2, 2015 at 11:33 am #

    Yes, I also have been called stubborn…I always thought I was determined. And yes, I too worry about how my actions will affect others. I need to learn if others are bothered or if these concerns are just in my head. Working on accepting the wheelchair if too much walking is involved. This blog has really hit home. Can’t imagine getting around NYC – need inspiration as I love the City.

    • cohen July 2, 2015 at 2:53 pm #

      NYC is the best.

      R.

    • Nik July 2, 2015 at 10:54 pm #

      NYC is the best, but take the wheelchair so you can enjoy more of it!

      Great topic Richard. My stubbornness and refusing to give into this is keeping me in denial though. I walked 5 miles today though, so denial must be working for me.
      I have never been to Cape Cod…it might change my attitude about the Atlantic. For years all I have experienced is the Jersey shore. Yuck! Lol

  20. Dale July 2, 2015 at 11:56 pm #

    Cape cod off-season is great. But most who live here hunker down for the summer unless they own a tourist based business.

    My kids always carry around extra maps from the chamber of commerce and hand them out to folks who look lost. We’re in the center of town so go through a lot of maps. But the kids know what its like to be a tourist. They have been tourists too.

    Maine is where it’s at these days if you want real New England.

    • r. cohen July 8, 2015 at 7:26 am #

      The only problem with the Jersey shore is…Jersey. They take such a bad rap.

      R.

      • Dale July 8, 2015 at 11:24 pm #

        That watery stuff isn’t really chowder anyway. But yes gotta get myself back up to Boston. Easier said than done lately.

      • Dale July 8, 2015 at 11:31 pm #

        The pine barrens are amazing. We worked on marshes out of an old coastguard station in Tuckerton. Pretty sure Parts of Jimmy Hoffa were there. But the lights of Atlantic City were really enticing…..

  21. MB July 3, 2015 at 11:20 am #

    Is Cape Cod the grownup version of Disney? My son flew out last night to spend the weekend at his girlfriend’s mom’s home there. Hopefully those tenacious Carolina shark don’t decide to get away for the weekend by going there, too! (Always a mom…)

    • Candy July 3, 2015 at 8:06 pm #

      Cape Cod must be amazing b/c my parents just got back from driving a RV there. I asked them if it was the adult Disney and they said it was much better: less strollers and crying kids though there were still some Goofy people 😉

    • r. cohen July 8, 2015 at 7:27 am #

      There have been sharks here, too. I play poker with them.

      R.

      • Dale July 8, 2015 at 11:25 pm #

        Bwahahaha

  22. Rob M July 4, 2015 at 4:36 pm #

    First, congrats to Richard and family on your daughter’s graduation.
    Thanks to Richard and Brian for supplying food for thought. I think it’s important to hold on to personal preferences to maintain some sense of self. But it’s time to reconsider when those preferences start interfering in your life and the lives of the ones you love. Knowing when to say “when” isn’t caving in, it’s common sense. I went through a similar situation with bladder control. I would take frequently bathroom breaks, stress out about finding the nearest bathroom and go through other weirdness to cope with a dysfunctional bladder courtesy of my MS. Then my doctor suggested self cathing could give me some independence. I initially resisted, but a few weeks later realized it was the way to go. I was sweating bullets the first few times I did it, but that was more than ten years ago and I haven’t looked back. Self cathing puts me in control.
    I agree with Richard and other posters re: caring about what other people think. I used to, but not anymore.

    • r. cohen July 8, 2015 at 7:30 am #

      There is much to be said for seizing control.

      R.

  23. Dale July 6, 2015 at 1:26 am #

    Cape Cod really is a neat place basically at an ecological convergence. It sits between the colder Labrador current from the north and the Gulf Stream from the south. A 9 foot tide range on Cape Cod Bay but only 1.5 on Vineyard Sound. Tons of sand dollars on the north shore, jingle shells on the south. Bluefish and striped bass take turns on each.
    Woods Hole was established as a marine science center based on proximity to so many different marine ecosystems. The national seashore is a treasure, and the sharks have now become a school mascot. Nantucket is awesome, the cusp in Nantucket harbor are a geologic wonder. The whole cape and islands is so much more than most realize.
    But it has NOTHING in terms of decent neurologists. Good cardiac surgeons, oncologists, etc. that like the lifestyle. I so wish I could find one that ‘gets it”.

    • r. cohen July 8, 2015 at 7:33 am #

      I don’t rely on Manhattan for clam chowder or the Cape for docs.

      R.

      • Dale July 8, 2015 at 11:22 pm #

        That watery stuff isn’t really chowder anyway. But yes gotta get myself back up to Boston. Easier said than done lately.

  24. Kim Lubeck July 7, 2015 at 12:03 pm #

    Another masterpiece Richard! It sums up my state of mind perfectly!! Thank you

  25. MB July 7, 2015 at 7:36 pm #

    Have any of you tried meditation?

    I’m reading, “Learning to Breathe: My Yearlong Quest to Bring Calm to My Life,” by Priscilla Warner and she has me hooked since MS robbed me of my ability to feel calm—it’s always lurking in the shadows. Maybe some answers can be found by looking East instead of staying in the West.

    What do you think? Have any Eastern practices worked for you?

    • r. cohen July 8, 2015 at 7:40 am #

      Priscilla is a great friend who grew up with Meredith. She has thought it through. I just cannot sit still long enough, and I have a scrambled mind.

      R.

  26. Yvonne July 8, 2015 at 1:02 pm #

    My mind is also not wired for meditation. Have tried many times over the years and basically I find it boring after 5 mins. Guess I’m too spastic to sit quietly for long period of times. Everything is not for everyone but I’m glad some things are for some. 🙂

  27. Dale July 8, 2015 at 11:52 pm #

    Time is always my limiting factor. I’m currently on “The To Do List From Hell – Book 9”. USGS government issue, best journal/field books ever. But I truly have lost the ability to relax except when scoping the ocean or the night sky.
    I often think of Hawkings, he says his disability allows him to retreat deep into his own mind which may actually be the source of his genius.
    But the one guy I will always regret not meeting was Richard Fyneman. What a hoot. Some of his physics lectures are on youtube. Anyone that picks locks on file cabinets full of classified information just for grins is my kind of guy.

  28. Roberta July 12, 2015 at 5:52 pm #

    Yes, you are correct on all accounts! I have lived my whole life with this philosophy.
    My dad used to say that I was stubborn as a hog on ice! I am proud of my independence
    and my common sense. 🙂

  29. Janet Davis August 14, 2015 at 2:20 pm #

    My way of saying, thank you! You’ve opened my eyes and am so glad to have found your blog. Blessings to you!

    http://frontseatimages.blogspot.com/2015/08/if-this-is-how-my-body-is-now-what-will.html