The More things Change

Recently I emailed with a newly diagnosed young woman who was struggling to find perspective on her new acquisition of MS. It struck me that using email instead of the phone allowed her to distance herself from the subject. The Internet: an electronic coping mechanism. The dialogue seemed all too familiar, harkening back to my uncertainties more than forty years earlier. Plus ça change, plus c’est la même chose. The more things change, the more they stay the same.
The issues in my life in my mid-twenties have not changed much. What dio I tell others, especially in the workplace? What do I say to a new woman in my life? How do I live with ambiguity and uncertainty? And the list goes on. I think about all the matters relatingf to MS and a myriad of other conditions that we have batted around on this blog. Our agenda is robust and does not change. Questions seem ageless.
There are no answers, of course. There is no right or wrong. Our journies are our own, appriximating the trip;s and falls others endure. More than one friend has suggested to me that I must drive myself crazy. Yes, I do. Aesyhylus wrote that he who learns must suffer. And that, too, is truth. If we choose not to question, we become pawns of a disease. If we make ouselves mad seeking wisdom, we choose a direction at the fork in the road just ahead. We reject passivity and get tough with ourselves. What is wrong with that?

23 Responses to The More things Change

  1. Christopher May 25, 2015 at 2:55 pm #

    Not a thing, sir.

    This isn’t directly relatable, but I once went on a personal quest to find out more about religion because it really confused me. I visited many faiths at their places of worship, and asked many questions. There were Buddhist temples, Hari Krishna temples, Jewish synagogues, Islamic mosques, Christian and Catholic churches and a few others. The list of questions was daunting but I kept going anyway. I got a lot of information, and I learned a lot to help me better understand ‘Faith’ and the faiths in my world. But I still didn’t get any closer to getting answers to the big questions. I do have more ammunition (so to speak) now to hunt for the answers on my own. But it will have to be a solitary endeavor.

    The best answer I received to anything was, funny enough, in my own neighborhood. A conversation with a local Catholic priest was pretty enlightening, based on my (faulty) preconceived notions. We were having a nice conversation about what Catholics believe when I asked what I thought was a fairly straightforward question with an obvious answer–I was wrong. I asked him if he ever questioned his faith, or the existence of God. He smiled and got up to walk to the front. He made a grand gesture to the alter and asked, “you see all this here?” I just answered, “uh huh.” He went on, “well, you don’t question that much because you can pretty much see it right in front of you… right?” I said, “right.” He then went on to tell me that he constantly questions his beliefs and his faith, otherwise “it’s just blind faith, and pretty much means nothing.” I was so surprised by an answer that I thought I already knew the answer to because I had never really done the ‘heavy lifting’ to find out for myself until right then. He told me, “Chris… there aren’t any easy answers to anything, and the ones you do get may change over time. But you just keep looking for answers and fighting for the truth and you should be okay. If you just give up and accept what you’re given, you lose the chance to maybe find out something miraculous at some point. To me that’s too much to just give up for the luxury of being lazy.”

    I still keep searching and fighting to this day, hard, including with my MS.

    • Richard M. Cohen May 25, 2015 at 6:58 pm #

      A wise man. And not a prisoner of orthodoxy. Sounds like a good exchange.

      R.

  2. Rob M May 25, 2015 at 6:21 pm #

    I’ve had MS for 19 years. When I was diagnosed I had plenty of fear and anxiety. I asked myself all the questions you mentioned. Back then I worked for a paralyzed veterans organization. I saw paraplegics, quadriplegics and vets with MS, doing their best with the hands they were dealt. Some succeeded, some didn’t. The ones who had good lives were proactive and didn’t give up.
    My advice to someone newly diagnosed: Don’t be passive. Find out all you can by checking out sites like the National Multiple Sclerosis Society. Consider adopting the diet and lifestyle changes described by Roy Swank or George Jelinek. You stand to benefit the most from those approaches if you adopt them early and stick with them. The meds out for MS now (e.g. Techfidera, Gilenya, etc.) look promising, but they are not cures. I used Avonex for many years. After a while it seemed to do a number on my head, so I stopped. I suffer from fatigue, limp and have other issues, but since I adopted a low fat diet approach and more exercise, I feel more empowered, my stamina is better and my last MRI showed no new lesions. Know that MS can chip away at you physically and cognitively, so don’t beat yourself up for tripping or forgetting stuff. Check out past posts on this blog. There’s wisdom here that can help you. Keep a positive attitude. Your perspective is one of the few things you can control. Good luck.

    • Richard M. Cohen May 25, 2015 at 7:00 pm #

      Thanks.

      R.

  3. michael May 25, 2015 at 7:03 pm #

    We can wait for a miracle or we can get dirty, stubborn, a tad arrogant and busy taking MS on. Been fighting since 1991 ( Cheryl, my wife is the fighter that is, I’m Mickey, the Cut Man:)

    I spend far too much time bouncing around the Internet, trying to get a feel for what others are going through. What I have learned is that it is those who refuse to wait for a miracle, a new drug or device and keep learning, keep trying and continue to live their lives on life’s terms who manage best.

    I guess it’s all about managing. Somehow, we manage.

    • Richard M. Cohen May 25, 2015 at 9:18 pm #

      It does not matter what others go through. Focus on your own reality and deal with it.

      R.

      • Dale May 25, 2015 at 11:58 pm #

        You sound good Richard. I was worried.
        Christopher yes this priest of yours does sound like a wise and thoughtful man. How refreshing.

  4. Betty May 26, 2015 at 11:42 am #

    I loved waking up to these posts this morning. I’ve missed the good minds and voices I find here. Happy for the light, and strength this day. Keep going !

  5. Marie Grace May 26, 2015 at 3:39 pm #

    Hi my name is Marie Grace. My husband is Ed.

    Ed has been following you since we saw you on a TV show with your wife.

    I have read your post or Ed shared with me since private battles. He is very moved by what you say and what all the others say in there comments.

    I want to let you know that Ed has had MS for 23 years-progressive now.
    I have had MS 17 years now. I am secondary progressive.

    We have known each other for 17 years but we separated when I got dx. and we found our way back into each others lives 6 years ago. He needed a caregiver and I needed a roof over my head after getting out of a very bad abusive situation. so we needed each other.

    We stared out as caregiver and care recipient and them we developed a relationship and have been married five years in October.

    I have much to say but I don’t have time now. But I can see things from may different directions. I have MS Ed has MS I am a wife and I am a caregiver. private battles really hit home with me. I am in a very complicated situation. I wear many hats. Our relationship with two have been a blessing and a curse. we live latterly in an MS bubble most of the time.

    We have learned much from each other and we have grown much from each other.

    We have had many challenges. We are growing and changing every day. But also progressing everyday. we live with all the uncertainty as you all do but times two and three as a caregiver.

    We/I have recognized recently that most of what I go through is anticipatory grief. I have from the beginning but didn’t know there was a name for it. I am know learning to take care of myself so I can continue to take care of Ed.

    I have been looking for a place where I fit in because my situation is unique.

    Smiling through the tears: Anticipating Greif Book has been a god sent for me. To help me understand all I am going through and all I feel. Always waiting for what is next and what do we have to adjust to again. its daily for us because its one or the other or the weather or my stress. There is always something. The book is amazing. It works for the sick or caring for the sick. we are all in grief one way shape or form. I highly recommend it.

    I have to go for now, but looking forward to spending more time here.

    Thanks Richard for what you do. being real and transparent. We need that. My husband cannot use the computer to type, but he reads everything. He feels validated by all of you. As well as myself. I see a difference in him when ever He reads and follows all of you.

    I am glad you are back also, My husband was worried and me too!

    Blessings to all and look forward to coming back here.

    Have a great day! Marie Grace

    • Richard M. Cohen May 26, 2015 at 7:18 pm #

      My thoughts are with you.

      R.

      • Marie Grace May 27, 2015 at 5:03 pm #

        Thank you Richard. Much appreciation.

        Marie Grace

    • Joan Z May 27, 2015 at 12:21 pm #

      Marie Grace,

      I read your post last night and can’t stop thinking abou you and Ed. I’m a 20+ year MS teammate and always praying it doesn’t get any worse. My husband is devoted and healthy and I wonder what toll caregiving is taking every single day. I wish I had better words for the two of you. I’m sending loads of positive energy your way. And by the way, I love your name.

      Joan

      • Marie Grace May 27, 2015 at 5:09 pm #

        Hi Joan! Thanks for your comforting words. I hope the best for you and your hubby also. I highly recommend the book if hubby needs a resource.

        Caregiving for your husband may not show a toll but it can take a toll if he carries most of the weight. If he is taking care of himself that is good. If it is affecting him it is normal and not your fault. You cant help it.

        Thanks for the compliment on my name. I personally changed it almost two years ago. Through counseling and many challenges that I have over come. I didn’t feel I was that person any more. My old name was Linda

        It nice to meet you also Joan

  6. Yvonne May 26, 2015 at 6:07 pm #

    @MarieGrace-“Anticipatory Grief.. I have never heard that before and actually it probably describes many of us here. We know just enough about this hideous diseases progressions that when things go wrong we automatically think OMG what next-walking,driving,seeing,incontinence,talking and the list goes on. The anticipation of what’s to come is probably worse than what we’re dealing with right now. Thank you for your insight. We all learn here.
    @Richard -glad you’re still up to blogging. We miss and worry when you’re gone too long.

    • Richard M. Cohen May 26, 2015 at 7:19 pm #

      Thank you for your concern. I am here.

      R.

      • Dale May 27, 2015 at 12:23 am #

        Well that’s good. Didn’t end up sailing Figawi last weekend (haven’t talked my way onto a handicapped boat yet) but did think of you and Merideth and the great weather you brought.

        We’ll have to find a boat next year. One with a good bar. That might be an entrance requirement so not too difficult.

        Do find it amusing both Figawi and the Falmouth Road Race started as bets by guys over drinks at a bar. But so did the idea for International Talk Like a Pirate Day. Pretty sure we could come up with something cool like that too.

        And Marie Grace, you give Ed a hug from us. Seems we were all waiting for more words of wisdom from our fearless leader. Like a bunch of mother hens in fact. Ahhh back to normal.

    • Marie Grace May 27, 2015 at 5:23 pm #

      Hi Yvonne! Nice to meet you! Yes I believe we are all grieving, It can also be call early grief. Like you said the anticipation of what is to come.

      I grieve my loss and my husbands loss and our relationship loss and changes.

      We know we are not getting any better and I think the worse thing is that watching someone you love progress is painful and then for me losing my own health. I am most of the time grieving something.

      This situation causes me to think about MS and the future almost every day.

      I am just now learning how to take better care of myself, so I don’t lose my health or self in this process. It helps a lot.

      I wanted to always protect my husband and do everything I could for him because I didn’t know how much time we had or how long this journey would be. But I was always burning out, depressed and unhealthy.

      I now know I can not protect him from his destiny as well as he can not protect me.

      We are here for each other and we support each other. we get each other. But We have to have separateness in this journey also. Balance and processing in our own ways.

      Hang in there and stay strong. One day at a time.
      I have realized that diet, exercise and sleep is so important. And most importantly watch the stress that is my biggest trigger with MS.

      When I do that which I have just started. I do much better. Do what you can and leave the rest as much as you can.

      Blessings, Marie grace

  7. Henriette May 27, 2015 at 8:56 am #

    glad you are back… I didn’t realize how much this blog inspires me till you weren’t here for a few weeks. Absense makes the heart grow fonder, even on the internet. Thanks.

    • rmcjourneyman@gmail.com May 27, 2015 at 7:38 pm #

      A few weeks? Really? Just needed to get away.

      R.

  8. Liz May 27, 2015 at 12:54 pm #

    I am selfish. Richard, you and the others are my caregivers. I want to hear from you everyday. Thanks to all for helping me.

  9. Marie Grace May 27, 2015 at 5:27 pm #

    Liz I am grateful for others at this time also. I never gave myself time.

    Even caregivers need caregivers. I am hoping this will be a good fit for me as it has for my husband Ed.

    Nice to meet you! Marie grace

  10. Grandma May 27, 2015 at 10:54 pm #

    Does anyone know a good neurologist in the Portland ,Oregon area? My granddaughter hates her neurologist. She calls me crying almost everyday with a new symptom and she feels as though no one is helping her. Medicinal marijuana helps her at night but work is almost unbearable! She loves her job and is afraid to tell them anything but they have spoken to her about her performance and attendance this week. She was just given a promotion about a month ago but lately her vision is disturbed and she is dizzy. I went through the same thing 20 years ago so I know what she is going through. However, I had a husband to support me and she is alone.

    Also, has anyone ever been told by a neurologist that it is normal to have a lesion in your brain for every decade of life?

  11. Christopher May 28, 2015 at 5:48 am #

    Also to answer your question…

    Yes, you can have age related brain lesions. But they aren’t the same as MS lesions. The comment by her neurologist is incredibly careless, and just plain stupid to say to someone with MS. Your granddaughter needs helpful information and reassurance, not a gross anatomy lesson.