Bitterness

There is a lot that is wrong with me, a host of conditions and calamities. Yet I believe I have not descended into bitterness. Ever. Self-serving? Probably. True? Maybe, though I can come dangerously close. I have offered about 170 posts, each drawing robust reactions and responses. I am trying to sort through perceptions of all that you have offered and I have read.

You often seem beleaguered, living in a state of siege. That does capture a difficult reality. Truth is an absolute defense. Many seem resigned. Who among the chronically ill does not go there? Chronic conditions by definition arte incurable. We are signed up for life. I think I detect anger a lot. So? I like anger. Good fuel for the fight.

But bitterness? Not really. Few among us seem to have crossed that river. I think that bitterness starts out as hurt. A relentless enemy we cannot see stalks us. And why is this happening? Why me? That is the poison pill when coping. I have pushed that question out of my head for years and had a better life for doing so.

I raise this subject because I am juggling a lot. Our burdens are cumulative. Baggage piles up. I worry about slipping into the quicksand of self-indulgence. The issue is not what I say to others. My mask stays firmly in place. I worry about what I scream to myself in the middle of the night, knowing that silence enhances deniability. I didn’t hear anything. Did you? Do I get to keep my martyr merit badge if my lips silently move? In the end, we play to an audience of one. I am my toughest critic, which is as it should be.

 

 

38 Responses to Bitterness

  1. Sue in TX January 26, 2016 at 1:07 pm #

    Yes Richard I think I know of what you speak about. Someone recently asked me if I have self-compassion. A funny question, it caught me off guard. I admit, I am my hardest critic, but could I say I have no compassion for myself ? And if I have some, how do I express it In my thoughts.? ?Do I applaude the day I go from task to task without rest or is it the day that it took more emotional effort to start my day? Or do I choose to partnership with anger or bitterness for a release ? When does self-compassion stray into pity or self-indulgence ? How can I accept my fate as sick yet push for more healthy days? I struggle to pin point Self compassion. I think it’s somewhere near acceptance with condition and contentment with life.

    • Richard M. Cohen January 26, 2016 at 1:20 pm #

      I believe we never will find answers to these questions.

      R.

  2. Yvonne January 26, 2016 at 4:10 pm #

    I know I’m not bitter however I am resentful. Every time I see people doing all the things I use to do resentment rears it’s ugly head. Especially when they are much older than me! When my daughter visits and I am exhausted by hour 2 I’m resentful this disease robbed me of being the fun mom I always envisioned. No one knows it but me. Do I still have fun in life? Absolutely but the resentment is always there. I continue to push through it all knowing it only gets worse even when people still believe it will get better. It’s difficult to get excited about a good day cause I know tomorrow or next week or next year will be a bad one physically. I never say this out loud because people who don’t understand the losses involved with chronic or progressive disease will interpret it as bitterness when actually it’s more mourning…sprinkled with remorse and resentment. I don’t think it’s bitter or angry.

    • Richard M. Cohen January 26, 2016 at 4:51 pm #

      Interesting. Bitter and resentful sound like twins. No way I am going to judge you or anybody else. Whatever you choose to call it, the feelings are there. Please beware of crossing the river. It is hard to find your way back.

      R.

  3. Christopher January 26, 2016 at 8:39 pm #

    “Do not pray for an easy life, pray for the strength to endure a difficult one” – Bruce Lee

    Two monks were on a pilgrimage. One day, they came to a deep river. At the edge of the river, a young woman sat weeping because she was afraid to cross the river without help. She begged the two monks to help her. The younger monk turned his back. The members of their order were forbidden to touch a woman.

    But the older monk picked up the woman without a word and carried her across the river. He put her down on the far side and continued his journey. The two monks continued to walk for many days and this deed wore away at the younger monk. Finally, within sight of their temple, the younger scolded the older, berating him for breaking his vows.

    Once the younger monk was done criticizing the other monk, the older monk replied “I only carried her across the river. You have been carrying her for days.”

    • Jan1 January 26, 2016 at 9:12 pm #

      Nicely put x2, Christopher.

  4. Pam I Am January 26, 2016 at 8:56 pm #

    Richard, I can relate to bitterness starting out as hurt. At least, that is how I experienced it years ago when I was first diagnosed. I didn’t cross the river, but there was certainly a time early on when I wallowed in “why me?” Those feelings lived in such a dark and lonely place, so I let it go and resolved to live as positive a life as I could manage. After all, why not me? Anything that can happen to someone else can happen to you. It happened to me.

    What keeps me afloat these days is when I think of all the awful things I read or see on television that *didn’t* happen to me today. I find a sort of peace with that admittedly flawed perspective.

    It’s not a perfect life preserver, but it keeps me from falling back into the river. I don’t ever want to return to that dark place.

    • Richard M. Cohen January 27, 2016 at 8:17 pm #

      A coping mechanism that works.

      R.

  5. Nik January 26, 2016 at 9:57 pm #

    Two things helped me at the beginning of this journey. One was when I verbalized the “why me” to my husband. His quick response was, “why not you?”. Then one of my friends died from cancer and left her two young twins behind. They are the same age as my son. From then on I realized my son is lucky to have me in whatever condition I am in.

  6. Jan1 January 26, 2016 at 10:24 pm #

    The way I personally see this is that I have choices. Two ways to live, as one might say.

    I don’t have the choice at the present time to omit MS from my life (and from the lives of my loved ones and friends around me). And right now, it hurts physically, has hurt emotionally (still does when I see a H.S. cross-country photo of the team that I missed because I could barely walk and did not make it to the field ceremony), and can be rather daunting when I think about the reality of what I’m even currently dealing with.

    But I DO have the choice to respond to whatever may come my way, to relate to others (or extend understanding even by being appropriately silent when inside I may be thinking, “You don’t have the slightest clue”), and to have a hope that is greater than myself. It is that hope that makes this tolerable. (The hope that I know but may not fully understand at times).

    Can’t say that I’m really bitter or resentful (against others). Is life unfair? You bet it can be, so I choose to recognize that but not focus on it (unless I think of those so terribly oppressed in other countries and know that we all just do the best that we can; that problems and joys are relative to each).

    Can say I don’t love this health situation, that I miss out on things, that a job was ultimately lost because of this, that a song can make my eyes well up when I know what it’s like to use skating muscles to express and “emote” in that way… but you know, I really do have people and things to be grateful for — and do far better when I focus on the positive and by being a friend to someone.

    • r. cohen January 30, 2016 at 8:18 pm #

      Stay positive. You are getting there..

      R.

  7. Jan1 January 26, 2016 at 10:35 pm #

    Yvonne and Richard, I think that all of that is valid.

    Nik, I agree with your story and appreciated reading it — good reminders, thanks.

    That said, I think we all want to help others out of a dark place when it comes. So Yvonne, I don’t think what you said is unusual at all. I for one understood what you wrote because I have had similar thoughts at times. We can’t help our feelings (even if we try not to have them). And they can be different at different times, seasons, and with different people. You have to feel what you have to feel.

    I suppose that is at the point where the choice thing enters in for me.

    And Christopher, I still think your quote and story have more impact than my “talking.”

  8. Jan January 26, 2016 at 10:38 pm #

    And on that note, I’ll omit the “1” from my name because I think we’re back to my being the only “Jan” again now. Janice without the “ice” or the “1.” (I only used “Janice” when I was first out of college because I thought it sounded more professional (ha) — that, and when someone was mad at me!

  9. Christopher January 27, 2016 at 2:44 am #

    The story is actually an ancient fable that’s present in different forms in just about every world religion–this one is a Zen Buddhist version. Richard’s post reminded me of a scene from a Herman Hesse book, “Siddhartha.” So that led me to a story I remember from a world religion course in school about monks crossing a river. I don’t know if it totally applies here, but it seemed relevant in a way.

    The Bruce Lee quote, is just really cool.

  10. Yvonne January 27, 2016 at 12:17 pm #

    Thanks Jan. I really don’t feel bitter but I think we all have our dark place we retreat to so we can do the silent scream!
    Christopher- that really is one of my fav Bruce Lee quotes :-). The Buddhist story was thought provoking so thanks for that share.
    Richard- resentment and bitter are different for me because I can resent that 80 year old taking a jog or dancing to a song but joke with them and compliment them and make them feel great that they are still “dipping it and doing it” 🙂

    • Jan January 27, 2016 at 10:31 pm #

      Interesting, Christopher–and when I read it initially, it triggered the thought of “Footprints in the sand.”

      Yvonne, in actuality, an 80-year-old I know is still doing skating axles, literally — something he has atypically done his whole life. (Truly, what really healthy people can do that).

      But the thought of him on the dance floor is making me smile, actually, and not resentful. I know of so many others who have dealt with all sorts of stuff that it was a joy to see that work out for someone, truly it was. (Kind of like being happy for your child in learning more, doing more than his parent and actually glad about that).

      And yes, Yvonne, maybe we all need some silent spot to just let it out on occasion! And time to laugh–I “misbehaved” and lost sleep in watching Fallon last night with fun guests, older music and memories that made me smile.

  11. Sandy Stolaronek January 27, 2016 at 1:39 pm #

    Yes, I am better and even jealous of older people who seem to be fine, upright with no problem and no pain, as far as I can tell. It’s almost as if they are the have’s and we are the have nots. Although they don’t know it and do not know what we must suffer from, when they see us walking with a cane, a walker or in a scooter. They just look at us as if to say, “what’s wrong with you that you have to use an assistive device”. It is in no way their fault, that we cannot walk around like they can, in their old age, unassisted, still seemingly vibrant, humming to themselves, as if they have not a care in the world. As a 51 year old woman, I certainly don’t want their pity and I really don’t even desire there compassion. I’m just tired of the stares I get while in my car, in a handicapped parking space, before I have elected to get out of my car to go into the store. I know what they’re thinking, which makes me want to put a sign on my car that says; “I have multiple sclerosis and I am indeed handicapped”. I don’t need to reassure other people, that park in these handicapped spaces, that I am truly deserving of my handicapped placard, because I know how I suffer and why it’s important for me to have it and to be able to park close to a store. My only wish, is that I didn’t need it at all, until I was their age and then I would at least feel entitled to it for having gone through a long life of being able to stand upright on my own, with good balance and posture, until I was too old to do so.

  12. Sandy Stolaronek January 27, 2016 at 1:47 pm #

    Sorry guys, haha! That first line was supposed to say; Yes, I am BITTER, not better.

  13. Amy Corcoran-Hunt January 28, 2016 at 11:07 am #

    I complain to myself all the time and, right, my lips don’t move. I try to behave.

    People who don’t get how lucky they are to walk down the street make me crazy. Live one day in my wheelchair, see how you do.

    I’m comforted weirdly by considering fates worse than mine. Sometimes I ponder ALS and I say phew! Yay! My 3 year old isn’t drinking lead water in Flint. I was not born in Syria.

    Every day I Google “multiple sclerosis” to find out if someone’s fixed it yet. Then PPMS. Then stem cells. Amazing things are happening. You could call that not bitter.

  14. Sue in Tx January 28, 2016 at 11:14 am #

    I am envious of every person who jogs, bikes, runs with stroller, as I stop my car at cross walk. I so want to be them. Some fit some not so fit. Some with matching shirts and shorts, others a little disheveled with red faces. I marvel at their bodies being able to do it, as if they were super human, instead of me being less than super. I sometimes convince myself in my soul that I could jog if I just trained a little. Maybe 10 secs on 10 off. Build up to a min. I tried to prove That I had the will. I am fighting. I found a spot outside in a park. So pretty. But I found the legs moved some but not properly. I decided to keep going until I fell. I could do it. I didn’t fall though, no sudden aburpt end to my jog. Instead my muscles tightened, adductors and flexors weak, my joints complained louder and louder and my attempt became a shuffle and stumbles and a few tears. This is my MS. And I do look so good.

    • Sue in TX January 28, 2016 at 2:37 pm #

      I am not bitter, however. I do as Amy c. In odd synchronicity, I too find strange comfort in situations worse than mine. i’ve said out loud, my water is lead free, I’m not fleeing Syria, I don’t have ALS. All true. And I do the same daily searching for hope. I see there are wonderful discoveries and findings on stem cell trials, treatment for spms, and dare even to suggest for a cure. So I cannot be too resentful or bitter, I am still holding hope.

  15. Vikki January 28, 2016 at 2:04 pm #

    I have jumped across the river of bitterness for years but I have not ever fallen into it. Hurt, anger, sadness, loss, resentment and a slew of other feelings are part of this journey. As the ride continues, I ultimately come back to hope for a cure, so thankful for my life and for having the unwavering support of my family and friends who all seem willing to take the ride with me.

    And as to the “silent scream”? I prefer to actually scream, as long and loud as I can. When I am alone in the house and no one else can hear, I find it a wonderful release.

  16. Jan January 28, 2016 at 2:56 pm #

    This reminds me of two things… last fall we visited a man from our wedding party years ago who does have ALS, and it is not pretty. It is what it is… he and everyone does the best possible in any given moment.

    Secondly, a neighbor’s son was born with a disability, and they told me they imagine it harder for me having lost something then for their son who has always been accustomed to life in a wheelchair. I can’t answer that one, not having asked him about it.

    I am unfortunate in having MS. But we do have two healthy children. We have dealt with job losses. But we are working now. We have food to eat. Many, likely most, struggle with something.

    Perspective. I still do best when I am able to contribute to something or help another in some way. Sometimes even just a smile or kind word of empathy can go a very long way.

  17. Ann January 28, 2016 at 5:56 pm #

    Everyone has spoken so eloquently on this topic. I can’t help but notice there are a lot of references to the “healthy” elderly. I do understand the projections we seem to place on them from our perspective, isn’t that something WE hate.

    I have a mom who just celebrated her 92nd birthday. She has lived through spinal stenosis (before they could fix it with a small incision), two children with MS (one who passed away about 5 years ago) and the death of her husband from cancer.

    She is as active as can be and when I call to see how things are she shares tales of going to the movies, exercise class, Spanish class, knitting, church …… In addition to all this, she still drives.

    The other thing she shares is how her memory is not so good, she can’t remember the names of people she meets and is constantly looking for things to shred to protect her identity. I love her dearly and pray she keeps moving but do not assume the look you get from someone is about you. They may be trying to remember why they are where they are:)

    Christopher, I loved the story and the quote.

  18. Jan January 28, 2016 at 6:03 pm #

    And this link just came to me: https://goo.gl/2TPQHM
    I am not bitter; just smiling widely! (Ignore the ending blooper–it happens!)

  19. Yvonne January 28, 2016 at 11:25 pm #

    It is so liberating to come here and read the responses to confirm it’s not me…it’s MS. Thanks everyone. 🙂

  20. Yvonne January 28, 2016 at 11:29 pm #

    Especially after listening for 2 hours to people discuss everything but healthcare in this country.

    • Ann January 29, 2016 at 9:09 am #

      Amen

  21. Jan January 29, 2016 at 10:07 am #

    Just caught a snippet overview on The Today Show and had missed this but pulled up the interview. Much appreciated and worth hearing, I think: http://www.today.com/health/jamie-lynn-sigler-today-show-why-i-kept-my-multiple-t69311

  22. Sue in TX January 29, 2016 at 2:17 pm #

    I am glad to have a high profile actress come out and explain how and why she hid her MS for fear it would impact her career. I applaude her courage and know it takes determination to overcome the obstacles to work with MS. But I am saddened that others may think that revealing MS is liberating to everyone. Co-workers see little of the challenges faced and in my experience question whether disability has been exaggerated. ( I found this incredible. ) Employers worry about reliability and how it may impact their health insurance risk. Also, not being married to a professional athlete, my bank account requires I remain gainfully employed. I have no security. This isn’t jealousy directed at ms sigler, but i do not think the typical person gains the same type of liberation By revealing their diagnosis. Although I am sure we all have the same desire to be accepted and embraced. Maybe if people in her position continue to educate the public about the physical challenges she faces, more people will understand it.

  23. Jan January 29, 2016 at 4:22 pm #

    Sue, your reply was so insightful and true–thank you for that. That is true about what we endure: a fact of life for us, but not one that is typically understood or tolerated…I’m thinking about work here, as I think you are correct re employers. And I just looked her up on Wiki–ah yes, few here have the financial luxury afforded to her. I don’t. Point well taken.

    Two of three of my freelance clients are aware — and it doesn’t affect my work at all (other than I work from home and not in an office–a time hassle with record-keeping, I might add). However, without it, I’d be working FT and helping to pay for college x2. Your points, and Richard’s comments about his earlier career, still unfortunately ring true.

    I’m still somewhat upset at myself for mentioning MS in a new unrelated group after a friend had mentioned my former skating (that I wasn’t going to mention then). In hindsight I would have not have mentioned MS that way. (“Yes I did skate but that was a long time ago–I’ve been dealing with MS, no meds, for 11 years”).

    Why did I DO that, I asked myself. (Perhaps to minimize or contrast with life now; own it and just live life; or just am human and wasn’t thinking)–afterward someone came up to me and mentioned (with good intentions) how she has done x and y to help ppl with my and other issues. About groaning inside (with a smile), I really don’t want to deal with that and now have a situation I may have to deal with. I really don’t want to “go there” — maybe I did because underneath it all I was admitting that it is what it is, in case you see me with a cane, walk strangely, or hang on to things. Guess I got caught off-guard in thinking that it was just business as usual. It’s not.

    In the interview, she at least was “real” about some things. Maybe there’s my answer: admit reality (more so to myself), and just move on.

  24. Yvonne January 29, 2016 at 9:10 pm #

    What I appreciated in her interview she acknowledged her privilege and the options it afforded her, like flying to other countries for treatment. She actually mentioned everyday fatigue and incontinence which shocked me. Few celebrities with MS are that real about the challenges faced by MSers. I agree with you Sue rarely is the average person “liberated” by acķnowledging they have a disease. My company assumed limitations and cut their losses by reorganizing my team without my position after my disease became more noticible 😉 That was the only liberation I experienced!

  25. Jan January 30, 2016 at 1:35 pm #

    Oh Yvonne, I was so sorry to read that. My husband’s former company ever so conveniently eliminated the positions of 6 with cancer and 1 with MS (either the employee or a spouse): the initial cause of an out-of-state move and separations from friends, both for adults and high schoolers–the effects of which still bother me now and create stress.

    “Oh moving will make you stronger.” Well, in some ways, yes, but not in other ways. A rather egregious thing to deal with. And as if the disease itself is not enough. Yes, I have hope, but we have all been through so much. Much to be grateful for that I should train myself to focus on, but on days like today when I can barely walk around the house and do chores, with pain and vision issues, it is easier said than done and just doesn’t feel that way.

    • Sue in Tx January 31, 2016 at 6:23 pm #

      Yvonne and Jan, I am sorry to hear about the negative work experiences you wrote about. I hope the general public will come to better understand what MS looks like and that positive experiences like the one Christopher reveals below become more the norm.

  26. Christopher January 30, 2016 at 9:02 pm #

    Jan,

    I used to skate too. Mine was done on a skateboard. Most of my friends back in Scottsdale (where I graduated from high school) still skate, and it’s tough for me. They never give me a hard time though, and they all know I have MS.

    I completely understand about the problems with divulging to people, especially at work. I originally was scared as hell to tell anyone at work. I eventually confided in one of the secretaries who’s a pretty good friend. She in turn was forced to tell one of my bosses what was going on with me because people thought I was coming to work drunk. It was actually bad ataxia. Then I got ‘called on the carpet’ by one of my other bosses–I have 10 direct bosses, btw–and he was pretty irked that I didn’t come forward to tell anyone. I told him why I was hesitant, because I was scared of no one understanding it and getting let go. I didn’t get let go. He basically told me, “Chris… you know we’re a law firm, right? We can’t fire you, by law, for having a disability. And we certainly won’t do that because everyone here likes you and you do a good job. You should have come to us, otherwise we can’t help you because we’re thinking you’re coming to work wasted. Just promise me you’ll do your best to fight this, and come to any of us anytime if you need more help.” That was 14 years ago, and I’m still there. Mostly because I had to drop out of college because the MS made it to difficult to keep up, and I needed a way to make a living. I know not everyone will have the same experience, and I know how lucky I am.

    I have a blog now too, but it’s still very hit-and-miss. I’m amazed how Richard can write such great posts so often… it’s REALLY hard!

  27. Jan January 31, 2016 at 5:07 pm #

    Yes Christopher, post topics can be challenging, but I find much content in everyday life. My posts are limited to a client’s clients… (A goal is to have my own website… when I can carve out and dedicate the time someday: currently a PT copywriter for others; still a FT family gopher, and with a goal to stretch every day and swim–all more more complex with MS). Cool that you could skateboard (but sorry that is in the past). I have always been motivated by music — it can still make my eyes water when thinking of skating to certain songs that I hear (but not that I would really do that a lot anyway).

    And re your work, I do believe that your colleague is correct, esp. related to disability laws and your doing a good job. (I think it is good that people at a law firm, especially, understand and adhere to the rules — it is unfortunate that not all do: and why Richard and Jamie-Lynn kept silent about it, I think. And why we had, with our experiences).

    Matt Lauer’s (in the interview) being rather incredulous about the “guilt and shame” aspect I think spoke loudly about how many of us have felt/feel. And that it is all misplaced (or should be–“should” and “work” haven’t always been in synch; and people in general may be insensitive, too)–the MS guilt is something I’m working on this year, actually. It’s like classic abuse: not my fault!

    I’m sorry you had to drop out of college because of MS. And it also reinforces the point I have been known to make about the “almighty piece of paper.” Yes, I have one and worked hard for it–but, even though it seems to be more important today–it doesn’t define work ethic for all. It reminds me of someone with whom i had worked more than 20 years ago who was passed over simply because he did not have a degree–and he was dedicated and knowledgeable. I did not think that was right and still don’t. But he found a good place thereafter.

    There’s a place for everyone, I think: healthy/MS, degree/not, young/older, etc.

    And btw, I think we are all enjoying your insight here on Richard’s blog.

  28. Sue in TX February 4, 2016 at 10:50 am #

    One of the ways I struggle with MS is how to redefine myself and my life. How to find meaning and contentment it what I do so that even though I do less in quantity it counts big. Sounds good, but not easy to do. So sometimes I search the Internet for other people who have found a way to live well with a chronic illness, with grace if you will. Richard here inspires me with his perseverance on the book. Others here show me I can be part of living life. I got an automated email notification today that one of the blogs I was following by a woman with a chronic illness had a new post after 6 months of nothing. (Her name is Lee McGowen and she has pulmonary hypertension ) I was excited and followed the link. But instead of discussing her illness and its impact on her life and family, it was about engaging people in politics, politics girl. I was confused, I knew her as the very ill woman with a family and how they struggle. Her struggles have pushed me forward. I can do it if Lee can do it kinda thing. So I watched the video she posted again, she explained that her diagnosis is terminal and she wanted a project that meant something and was important. And for her it was to engage people in politics. She does it in a genuine fashion and I found myself cheering her on. Wow, She found a way to redefine herself that isn’t illness related. Now I need to figure out how to do that for me. I wish I could ask for you all to tell me how I can do that, but I see from her endeavor, redefining is very personal. But I see that there must be a satisfying way to do it somehow.

  29. mary February 4, 2016 at 11:58 pm #

    I stay silent most of the time even when I am feeling horrible. Why tell anyone how I feel? They can’t do anything about it.
    I certainly hate to see healthy individuals wasting their lives arguing and fighting, being lazy or hateful, when some of us would give anything just to feel good/normal ONE MORE DAY.