What’s up, Doc?

I think we are wading through thick, gooey mud, stuck on what we believe other people think of our physical realities and how they relate to us. Or do not. I for one want to find my way back to dry land. I have asked, who cares? Obviously, a lot of you. I would tell you to get a life, but I started the food fight, so I guess my options for positioning myself above the fray are limited.
If it is fair to label this an obsession, I wonder why this seems so important to so many. I cannot abide amateur shrinks, but here I go. I will begin with the guy in the mirror. Maybe I am so uncomfortable with if not alienated from my body and view of myself that I project it on others. I see myself as flawed and physically weak. Those observation ns are grounded in reality. I move awkwardly, hobbling on a cane, though I am not in a wheelchair, at least yet.
I am certain many of you can outdo me on physical limitations. Are we judging ourselves harshly and taking what we think of ourselves and attributing it to others?
I know I think less of myself because of my illness. I know I apologize profusely to all who are around me when I fall in New York. What is that all about? I certainly can be a misanthrope, perhaps defensively. I wonder if any of you can relate to this. Maybe carrying those chips around on our shoulders is making us tired of playing a game that can injure a brain as much as football.
There will be no charge for this session.

38 Responses to What’s up, Doc?

  1. michael April 27, 2015 at 4:22 pm #

    Perhaps “having it” and then finding yourself “losing it” is more difficult than never having it at all. The sense of loss is profound, and private, until venturing into the public, whose eye is always open, always looking to get an edge, an angle, somehow feeling” better than”when confronted with a person perceived as” less than.”

    The insidious nature of this disease runs far deeper than persons without can ever imagine, even those like me who share their lives with somebody who is slowly falling victim to its creepy, relentless assault.

    “Who cares?”

    Everybody cares.

    • Richard M. Cohen April 28, 2015 at 6:38 am #

      I care deeply about the condition and not at all what others think.

      R.

  2. Erin April 27, 2015 at 6:18 pm #

    I am not in a wheelchair full time, but do use it for outings (the other choice would be to not go). I definitely feel less of a person, less of a mom, in the chair, I hate the feeling. I often wonder if others judge me too as harsh as I judge myself. I am constantly apologizing to everyone around me too, how annoying is that? These feelings definitely affect my quality of life…I just can’t let them go! It’s weird, I think if the disability would have came all at once, instead of slowly, it would be easier to accept….instead of the constant steady changing let down of slow progression. I also think if I accepted it more, others would see past it. The battle of the mind definitely does not help the physical situation either. Ugh…

    • Richard M. Cohen April 28, 2015 at 6:40 am #

      Agreed.

      R.

    • Becky May 3, 2015 at 8:00 am #

      I too fight the battles in my mind,always wondering if tomorrow I will be ale to get up and walk. At times depression takes over and I am sure gets in my way but it is the feeling of being in quick sand and a fight I will not win.

  3. Jan April 27, 2015 at 11:58 pm #

    Michael, a neighbor with an adult son physically in a wheelchair since birth has a few times echoed your comment about loss (but I have not queried her son directly).

    Erin, I’ve also used wheelchairs on some outings. Yes, I hate it, too – but in hindsight it is far easier to not grimace through an airport, pursing my lips to forge ahead (as if that will really give me added energy), and stopping to lean along a wall every few gates. Brutally taxing for me; emotionally taxing for my husband. (When alone, I still opt for the struggle over the smooth ride).

    My friends don’t see treat me differently. (I may get a helpful drop-off near an entrance, but other than kind courtesy, I’m still me). At the end of a meeting tonight a few people noticed my cane, two asking about it in an appropriate way, I thought. We all laughed over my borrowed “quidditch” retort before I briefly admitted to MS (okay with telling after their genuine confusion after seeing me twice a month for a year). “Wow, I didn’t know—I had no idea.”

    So yes, Richard, I do think we all likely judge ourselves far too harshly and can transfer erroneous perceptions onto others. I’ve mostly found that what I may be thinking that others think of me as it relates to this simply isn’t true and can now mostly rise above it (wasn’t always that way). And if someone people are rude, they’ll likely be rude, MS or not. You live in NYC, you know!

    Seriously, I’ve met nice people in NYC and France, to dispel those myths. MY issue is that I can have a hard time rising above MY OWN FEELINGS about it all. Yep, the real brain issue. Just wake me up when this nightmare is over and let me walk normally, jog, skate, cook and serve dinner/clean my house easily, be pain-free, not think about health stuff every waking hour, minute sometimes. What? SPMS means that it’s not going away? It could get worse, like a slow drip filling up a bathtub?

    So yes, I can relate. (You likely could have charged for this session).

  4. Dale April 28, 2015 at 8:50 am #

    I’m torn lately in here between simply writing “Well we’re all f****d” or wanting to pull out the pomoms and say c’mon guys, we can handle this. So much of our concern over how others see us is in our own minds. Most people are too worried about themselves to notice anyway.

    Michael I do hope you show a more positive side to your wife. But if this is the crying room for everyone so be it. I know I carry a deep seated guilt for things I cannot do as ‘the wife’. So I try never to ask for help.
    it is a lonely place.

  5. Elizabeth April 28, 2015 at 12:53 pm #

    I think that personally I have put up a bit of a wall because I have gotten a strong impression that much of the questioning is a back door way to try to encourage me to think more positively and it will improve the way I feel.

    Example: So how have you been feeling? Response: I’m ok, thanks for asking. Reply: Well, hopefully you’ll start feeling better __________ fill in the blank. 1. If you can get back to work. 2. You get on some meds. 3. The stress from your life starts to subside. 4. The weather breaks and you can get out more.

    This is my 2 year anniversary of my diagnosis (on my bday or I wouldn’t remember the exact date-I’m not that focused). I have had about 4 months of feeling like my disease was under control during those two years. The rest of the time has been spent with test after test, steroids, altering treatment plans, Deciding which symptoms are showing progression and which are just my baseline.

    I’m just tired. There’s no rule book. I’m still in the closet for fear I’ll never get a job again. I’ve spent as much of those two years trying to be someone without MS even though it slaps me in the face almost every day. I pushed myself to take care of things I shouldn’t be doing to deal with the stressful things in my life even though it affects my physical and mental health. I guess I am stuck between denial and diligence. I’m not afraid to say it here. I feel shame and I’m discouraged. I’ve always been a strong person and I’m not anymore. I can’t reconcile that.

    • Jan April 28, 2015 at 5:39 pm #

      Oh gosh, Elizabeth, such a “birthday present.” (The kind to throw out).

      May is my 10-year mark, and your mention of year 2 gives me pause, reflecting back on a busy work day. I write part-time freelance, self-employed. My clients are aware: no issue, as it doesn’t affect what I do. Hmm. Maybe that’s my key–finding something where it doesn’t matter, or where it can be used to enhance insight and perspective (being a friend to another) to balance, make that offset, the many things it does mess with. For me, it has taken some time and emotional work. (I can “still have my days”).

      But an outside job is another issue: I think that what Richard has said about disclosing health stuff has much merit. Sad but true: reality and perception. Very difficult, various issues there, indeed.

      And I think I can relate to all of what you wrote.

      While I aim to not give advice or sound flippant, I risk both in saying that I hope you will treat yourself to something special on your birthday. Just to know that you matter, this is a safe place, and you’re not alone in your feelings.

    • Richard M. Cohen April 28, 2015 at 7:22 pm #

      Shame is an awful word. I am sorry you feel it. I hope you realize you are punishing yourself for a crime committed against you. Clearly many of us feel variations on the theme. All have to work our way past it. I hope you can.

      R.

  6. David April 28, 2015 at 4:44 pm #

    I judge myself too harshly , yes,so easy to do when you cant walk like most others.I could hope that others treat me like I would treat them if they were in my shoes, some do.

    Most people are nice and feel bad for me, I understand that.MS has changed my life and continues to do so.

    I remain positive and hopeful for my future.

    I do that for me, Its all I can control

    Actually MS has made me a stronger person .

    I endure more pain and keep smiling through it.

    I have become an actor, almost always!

    • Richard M. Cohen April 28, 2015 at 7:23 pm #

      Join the club.

      R.

  7. yvonne April 28, 2015 at 6:15 pm #

    Welcome to the CHRONICALLY ILL SCHOOL OF ACTING. Your lifetime Membership is non-refundable and comes with many restrictions based on your illness. Our school symbol is the comedy/tragedy mask. 🙂 🙁

  8. yvonne April 28, 2015 at 6:18 pm #

    David-Welcome to the CHRONICALLY ILL SCHOOL OF ACTING. Your lifetime Membership is non-refundable and comes with many restrictions based on your illness. Our school symbol is the comedy/tragedy mask. 🙂 🙁

  9. Jan April 28, 2015 at 11:29 pm #

    Richard, just a blog peek after watching 20/20 and two of the three Cleveland women interviewed. I heard no mention of shame, even after the horror of their past 10-year situation. But I did hear and see the word “hope.”

    Wow.

    I’ve long said that people’s issues are their own and that no one needs to feel shame in mentioning to me a temporary sinus cold–They can really hurt; it’s all relative and individualized, I say.

    Yes, some issues really are worse: Cleveland. Nepal. It all is what it is, and MS has its place amidst certain challenges, for sure. For me, it seems that what I do with whatever I do have, and do not have, is most pronounced in how handle whatever journey I have faced, moved through, am in, and will face in the rather uncertain future. I suppose that “hope” to me may be more synonymous with resilience than cure.

  10. Dale April 29, 2015 at 9:07 am #

    It would be nice if ‘hope’ translated into something physical that’s actually working for someone out there. Like stem cell transplants. Or biotin. Or B-12, co-Q10 or fish oil. Or even the latest snake oil like the stuff we’re supposed to inject in our bodies.

    This seems an educated group. I know we’re all praying for that reproducible little lifeline of something that will make us better. Anyone have anything that actually seems to be working?

    • Joan Z April 29, 2015 at 5:38 pm #

      Dale, your question was timely for me. Just forced to switch docs and finding myself really annoyed to have to relive it all. In my version of heaven there will never again be another new patient intake form. I’ve done Avonex, Rebif, HBOT, removed fillings, chelated mercury for so long I figured I had no bodily fluids left to give, acupuncture e-stim, Swank, Paleo, vegan, B-12 injections, IV glutathione, meditation, PT, LDN, everything but the kitchen sink. And I have absolutely no certain idea, but after spending a lot of money and energy, what I’ve stuck with, and assign importance to is B-12, glutathione, acupuncture, meditation, and believing it matters to live a good life, kindness, empathy, and compassion. I no longer think a big fix is out there. Trying to enjoy life as best I can, grateful for a good husband and friends.

      New doc brought up Mercury chelation, I said no, been down that road before, ad nauseum, to which he replied “what if that is the one thing that will make a difference”? I’ve chased so many of those “one things”, done with that. I’m pretty convinced the answer lies within.

      • yvonne April 29, 2015 at 8:54 pm #

        Wow Joan. That’s quite a list. After all that I’m glad you found something that gives you some relief from these crazy disease. SPMS seems to develop new symptoms every couple months or amplify the ones I have. Swimming was my only relief and now not sure if I will be able to continue. I haven’t tried as much as you but I’m done with any aggressive expensive treatments as of 2013. Still doing B12 and since I read on this blog about Biotin I may try mega dosing it for a while. Hey, nothing beats a try 🙂

    • Christopher May 1, 2015 at 4:03 am #

      Yes… moving forward one step at a time no matter what.

    • josie May 5, 2015 at 11:22 am #

      I keep hearing about HCST being done in Moscow, Germany, Tel Aviv….
      with very good results. Has anyone heard anything else about this? I am afraid to hope.

  11. Louise April 29, 2015 at 2:06 pm #

    Dale,

    I’ve had my eye on Lemtrada for years, way before it was renamed and monetized. My doctor is only using it on his “sickest” patients but I think that it might actually be really effective early on. I think it is what Ann Romney had early on. I know that recently she has not mentioned it, but I read an interview she gave about 10 years ago and she said when she was diagnosed her doctor gave her several days of chemotherapy and said most doctors would not treat you with this…. So I always thought it was the Campath aka Lemtrada. Check out its reported efficacy. There are significant sode effects but I am on tysabri so… I guess I am ot risk adverse. Anyway, if I was younger I would really try to get Lemtrada. I don’t know your circumstances, Dale. The Biotin results presented at the nuerolgy meeting were good, not what was hoped, but good. I started taking a “mega” dose, but it’s not medicine grade or regulated. When I get the energy I will look into getting the right kind of biotin. It’s water soluble so very low risk, I am guessing.
    I am certainly not a doctor or scientist so just my opinions from reading.

    • Dale April 29, 2015 at 8:23 pm #

      I was wondering about Ann Romney. She seemed to hang in there pretty well with all the campaigning. This is interesting.

      Joan you look like the poster child for clinical trials, but good for you, The mercury cheleation is up there with voodoo in my book. If you lived in Hackensack Meadowlands where the mercury spoil piles were or had fun like we did chasing drops of mercury around a table, but then toward your mouth, well yeah maybe. Otherwise it’s just another guess.
      I did 10 years on Avonex and switched to Copaxone which actually seemed to make things worse. At least a copy of the prescription was enough for my daughter to get a $3000 college scholarship from the MS Society. They started to look better after that.
      I need to find a new neuro but doubt there will be anything new. I’m in soft-money science so I’m pretty skeptical anyway.
      Will say my kind of high stress job trying to save our little corner of the planet is nothing compared to having to move the inlaws into a house we owned and then having to uproot with a 9 month and 2 year old to take care of them after my FIL had a stroke. That seemed to trigger the start of this MS joyride. My mother in law didn’t think women with kids should have careers. And so on. Well at least I got some good stories out of it.

      • Dale April 29, 2015 at 8:30 pm #

        But seriously, this is the kind of first person info I’m really hoping for. Tips and tricks and survival strategies. There’s a lot of knowledge in this group!

  12. Jan April 29, 2015 at 7:22 pm #

    I get much writing inspiration in different ways from everyday life.

    The ending NBC Nightly News story this evening came at a rather good time for me. Can’t see properly with eyes still dilated from an annual eye exam (that I’ve not done for three years–but will do so annually going forward, as there is a reason for disequilibrium and a second appt. upcoming). To type this now, I’m closing one eye, hoping it’s just the dilation. It also brings more succinct awareness about what it could be like for Richard to see the screen)…

    At the end of an interview about real-hair wig donations and a woman with breast cancer, she said, “If I can feel good about myself, it makes me think of the bad stuff less.”

    Today, I agreed to take over teaching an ESL class this summer at church. Mind you, this is not about me (the adult students will definitely work harder than I). It’s about a way to set aside MS to focus on something else, to give back, and, as a result, to find something that will no doubt make me think of the bad stuff less.

    • DianeT April 29, 2015 at 8:15 pm #

      Well said, Jan. You have figured out a great way to give back to the world. Your students will be lucky to have you.

      • Jan April 29, 2015 at 9:11 pm #

        Thanks for your kindness, Diane. (And hoping that my eyes will at least return to the way they were! Incentive to go to sleep on time, at least).

    • Dale April 30, 2015 at 10:27 am #

      I’m with Diane. Your positive approach will be great for these students.

      Sharing knowledge with a captive audience is great therapy. Although I can’t lead field trips anymore, giving talks, especially to the K-12 set, has always been huge for my attitude. They get excited when you get excited. That’s why my special lecture pin says “I come, I disrupt, I leave” on the bottom for the benefit of new teachers.

      • Jan April 30, 2015 at 6:10 pm #

        Thanks; I’ve actually looked in the children’s section of Half-Price books for a couple of appropriate materials, also enjoying the trip back into the elementary school memory lane. But two people have told me that my “audience” will be more receptive and easier to manage!

        Now, to just get this to where I can see the computer screen again without closing one eye. Richard, you inspire with your vision status and initiating/managing your blog content… uh, all but the stats that Brooke does, that is. (Excuse my humor). Truly, a newer appreciation.

  13. Jan April 30, 2015 at 6:31 pm #

    One thing… I like to watch the evening national news. But if it’s not hard enough to know all of the challenging things going on world-wide, the lion’s share of the commercials are from drug companies. And who, may I ask, is footing the bill for that? (Rhetorical question).

    • Dale May 4, 2015 at 1:29 pm #

      I feel sorry for doctors that have to deal with all the patients demanding this stuff just based on advertising….

  14. Dale April 30, 2015 at 8:09 pm #

    Jan, I told Richard about her, if you want to be inspired by a legally blind gal, google Rachel Scdoris. She ran and finished the Iditarod in 2006. Although i didn’t care for the style of her ghostwriter, her book “No End in Sight” is one of my favorites. Her story including trying to run cross country in high school has always been a favorite of mine to share.

  15. MB May 1, 2015 at 3:47 pm #

    If MS was a disease that gave every person the same outcome, we’d probably be closer to society understanding the challenges we face. Instead, some of us have sensory issues, others motor impairments, some have vision problems, or maybe cognitive lapses, and then there are those with a combination of some or all these (plus many I haven’t even named).

    Of course there are those who are highlighted in the news collapsing from exhaustion after running a marathon, because they “might have MS but MS doesn’t have them.” Some dance with the stars which is fantastic, but I can’t even tap my toe. Why aren’t patients who expend all of their energy walking to the mailbox in front of their house to get the mail considered “heroes,” too? I think it’s because it’s too uncomfortable—everyone can go get their mail, right? Wrong.

    We have members of our “group” who are eternal optimists, some who are gloom and doom pessimists, and even the total fakers (“This stinks, I hurt, but let me cook a 7-course meal for you…”so you think I’m okay even if this act puts me in bed for a week) We can’t even agree on what level of help we are willing to accept because some view it as a sign of strength while others view it as pity.

    I think Michael was correct when he said, “Perhaps “having it” and then finding yourself “losing it” is more difficult than never having it at all.” I miss what I once had and still find my limitations difficult to accept. I swallow my pride every time I ask for help doing ordinary tasks even a five year old can do. Although people jump to help me out, I often forgo drinking a bottle of water if I can’t twist off the cap by myself.

    I have an idea. Let’s start an Academy Awards of Disability. “And the award for having the fewest spills from the kitchen to the family room goes to SPMS Patient #321!” And instead of receiving an Oscar we’d receive a Mickey in honor of all those lucky bastard lab mice who somehow get cured during research studies.

    • yvonne May 2, 2015 at 11:34 am #

      MB I totally love your observations. Spot on. I cracked up when I read “lucky bastard mice rats”. Of course cracking up now means I nearly choked to death if I’m eating or drinking ANYTHING! Swallowing issues is the newest manifestation of this freaking disease. What next? But like teeter tottering trying to stay upright because I will walk dam it, laughing out loud can not wait. Just gotta learn to take small bites and sips when I reading. Thanks MB for the “choke” of the day 🙂 🙂

    • Joan Z May 2, 2015 at 12:48 pm #

      …and don’t forget that which makes us REALLY fun to live with. Today I show optimism, tomorrow gloom & doom, the next time I’m the total faker. No wonder we’re all frustrated and confused (movie title!!)

  16. Dale May 2, 2015 at 8:54 am #

    Just saw an article about Ann Romney’s http://www.50millionfaces.org. Looks like she and Montel have something going with this, her name is on a center for neurological diseases at Brigham and Womens up in Boston. You can put your story on the website.

  17. Betty May 2, 2015 at 12:40 pm #

    Bravo MB! You nailed it. Us, it, and them. Thanks for this post. You made my day!

  18. Michele P May 6, 2015 at 3:22 am #

    Through my experience, I’ve begun to wonder if MS is one of those diseases to which the overwhelming majority of people can’t relate — possibly because its impacts are so variable and subjective? It takes a sprawling imagination to even begin to know what it’s like to endure the chronic sense of isolation and live a day, a week, a month, a year with this perplexing and fickle condition. Several years in, it’s now getting harder and harder for me to remember what it was like to live without it. However, that may be a positive in that it softens my judgment of myself — unlike what I field from others around me who simply don’t get it.