Patience

A well-meaning, little knowing acquaintance recently advised me to be patient. Really? Patient? I had noted that a particular treatment I find particularly unpleasant does not seem to be doing anything for me. Give it some time, the guy suggested. Be patient. Another chronically healthy being was weighing in on something he knew nothing about.

Yes, we are in this for the long haul, but the idea of demonstrating how patient we can be in the face of losing ground is misguided wisdom or a poor substitute. I am freaking sick of disease drama, tired of waiting for the day when events turn around, all the while knowing that day likely will not come. Live with it? Yes. What choices do we have? But patience? Please.

I used to talk myself into showing emotional restraint. Then it mostly was done for show, mostly to put those I cared about at ease. Now I don’t really bother. I do try to keep it to myself. I do not want to inflict my distemper on anyone but the dog. But please do not tell me to be patient. I did that for too many decades. Enough is enough.

The older I get, the more sand I see spilling out of the hourglass. That is not a comforting sight. I want to get better and the time to enjoy it. It is all part of the mind game, of course. I long have wanted to dabble in fiction. A guy can dream. But don’t rub my face in reality. I need a vacation from that. And I reserve the right to be impatient.

 

 

 

67 Responses to Patience

  1. Kim Lubeck November 8, 2015 at 8:52 pm #

    Truth. That’s the reason I keep coming back. They say patience is the key. Well, I’m locked out!

    • Richard M. Cohen November 9, 2015 at 7:19 am #

      Let’s keep looking for a key.

      R.

      • Tannya November 13, 2015 at 1:56 pm #

        I just discovered your blog and your very personal and realistic account of what it’s like to live with MS, is refreshing. I have SPMS and I’m 44…Thank you for sharing your experience.

        • Christopher November 13, 2015 at 9:52 pm #

          Tannya,

          Keep coming back, and keep searching all over the internet. There’s a universe of knowledge out there that can really help. But definitely keep checking back here, and add your voice to the conversation. There’s many good, caring people here… and another perspective only helps. Richard is an awesome guy for letting us all share in his space. He doesn’t post every single day, but they’re worth it when he does. The man definitely has a reporter’s eye.

          I wish you well. SPMS sucks.

  2. Christopher November 9, 2015 at 4:45 am #

    Hear, hear! Well put, sir.

    • Grandma November 9, 2015 at 10:44 am #

      Are you doing better,Christopher? We patiently waited for you to return. We had hoped it would be soon!
      Jeanne

      • Christopher November 9, 2015 at 1:25 pm #

        Hi. It has been pretty difficult to reply to anyone. I was finally able to get a fairly long reply to Richard’s email last night. I can’t repeat it here, it would take too long. But basically, thank you to all of you for all of your kind words of support. I was really moved by all of the kind things you all wrote, and all the words of encouragement. It really means a lot and helped

      • Christopher November 9, 2015 at 1:25 pm #

        Hi. It has been pretty difficult to reply to anyone. I was finally able to get a fairly long reply to Richard’s email last night. I can’t repeat it here, it would take too long. But basically, thank you to all of you for all of your kind words of support. I was really moved by all of the kind things you all wrote, and all the words of encouragement. It really means a lot and helped

      • Christopher November 9, 2015 at 1:43 pm #

        Hi. It has been pretty difficult to reply to anyone. I was finally able to get a fairly long reply to Richard’s email last night. I can’t repeat it here, it would take too long. But basically, thank you to all of you for all of your kind words of support. I was really moved by all of the kind things you all wrote, and all the words of encouragement. It really means a lot and helped me through a very difficult time. It’s still pretty tough, as I know it must be with many of you dealing with this unforgiving and unrelenting disease. I’m going to continue fighting hard, and I hope that I may be able to make a difference for all of you. I don’t know if that’s possible, but I’m going to keep trying.

        As far as “patience” goes… having patience is a good exercise in life skills when dealing with complicated things. But sometimes ya just gotta kick the f***ing door down, or nothing gets done.

        I wish you all well, each and every day.

  3. Kat November 9, 2015 at 9:42 am #

    We have to be impatient. It propels us to keep trying new ways to cope with and to treat our MS. Being patient feels to me like sitting by watching my MS progress.

  4. Ann November 9, 2015 at 10:12 am #

    “Patience is a virtue” says my mother and I have adopted that throughout my MS travel. Patience has caused me to never enjoyed the suana (sp?) bathtub we installed several years ago. Patience is causing me to view the bed for my husband and I sit bagged in the front living room as I wait for the room to be finished. I am tired of patience because experience means MS with take my ability to enjoy what I am hoping for long before it is accomplished. Something like a cure for MS.

  5. JoanZ November 9, 2015 at 11:29 am #

    I always think that patience is my life’s lesson, because I am NOT and the Universe presents me with endless opportunities to learn it. I’d laugh out loud at anyone who told me to be patient.

  6. Jeff November 9, 2015 at 5:28 pm #

    Patience means waiting. When you have MS, waiting means (eventually) getting worse. As a father of two kids who will be out of my house in ten years, I don’t have time for patience. We must live now and continue to look for opportunities to make things as good as we can.

    F patience. (sorry to be so blunt)

    • Richard M. Cohen November 10, 2015 at 7:37 am #

      Agreed.

      R.

  7. Sue in TX November 9, 2015 at 6:19 pm #

    Patient? And Wait and see. That’s what I have heard. The first time a doctor said that to me I thought it was rather useless advice. It sounded like Something told to a child who repeatedly asks whether they are going to get a particular toy for their birthday. I later found out, however, that “wait and see” is a real medical approach when the future is uncertain. One doctor added his spin. He said Sue, “eventually the answer will be obvious”. “Be Patient” or “wait and see”, these phrases seem rather synonymous to me. I think Its a common path one with MS is sometimes forced to take, no matter how much another way is desired. So sometimes I too put on a good brave show to appease my loved ones and walk that path. It’s a forced march. But other times I am better able to accept the unknown, knowing that
    eventually the answers I seek about my health Will be obvious. .however, I don’t think it’s patience that allows me to do this, it’s more a determination to experience the good in the present moment and a reluctant grace.

    • Jan1 November 11, 2015 at 9:22 pm #

      Sue, at the time of diagnosis more than 10 years ago, still living life, ignorant really to what this is really all about, “wait-and-see” seemed rather attractive coming from my Mayo neurologist regarding prognosis and also meds.

      But, in looking back, he was right in that no one had a crystal ball, nor could they fully make predictions — that there is so much (still) unknown about MS. Five years would be the first prediction benchmark — and by the way, ten is even better for that. I get it now. (And what a hard job that would be — I’m serious, really, hang with me on this thought — with what I do, I can see the efficacy, I can make a difference, I can truly grow and improve and assist others in moving forward all in good ways).

      And Richard, being now back from the “mother state” after a week (IL), I will say that I really like the title, “Chasing Hope.” It’s what we’re all doing, really, and it also implies a process. Likely with varied approaches, but a process. Nice!

  8. Vikki November 9, 2015 at 6:21 pm #

    There is no time for patience with this disease. None whatsoever. For me, patience is equivalent to giving in, giving up. That works for a day or two. Then it’s time to regroup and start fighting again.

    Christopher I am glad you are back.

  9. Yvonne November 9, 2015 at 7:48 pm #

    I was never patient person even as a patient. Ironic word isn’t it? MS does not allow for patience because we don’t know what’s on the other side of waiting. Will the treatment work? Will I be worse next day, week, month or will I stabilize? Will I process to SPMS or PPMS and when? So why should we be patient? That’s something reserved for the people that have diseases that are not progressive or are healthy with a mild cold. The people who tell us to just be patient are well meaning but clueless.

    • Richard M. Cohen November 10, 2015 at 8:18 pm #

      There is a difference between patience and a necessary tolerance for ambiguity.

      R.

      • Jan1 November 11, 2015 at 9:27 pm #

        Richard, your reply makes sense. (And clarifies all this).

    • Jan1 November 11, 2015 at 9:26 pm #

      Yes, Yvonne–I never thought of that word “patient” in that way before: interesting!

  10. Dale November 9, 2015 at 11:28 pm #

    Christopher! How wonderful to see you back… I was hopeful AND patient waiting for your return. Otherwise there’s nothing that justifies being told to be patient in all this. Except maybe for Richard’s book.

    • Christopher November 10, 2015 at 5:29 am #

      Thank you, Dale. And thank you and everyone else for your encouragement. It really does make a big difference in being able to cope with adversity.

  11. Christopher November 10, 2015 at 5:26 am #

    When someone (usually a doctor) asks me to be patient, I wonder who he or she is taking to.

    Is it me? Or are they talking to themselves, and projecting? And it seems there’s a bigger question that is somewhat more murky: What does that person mean by “please be patient.” Does that mean sit in a chair in a corner somewhere, waiting without moving, until the phone rings? What am I going to do otherwise? What is the alternative? Live my life without settling for the status quo? Doesn’t seem unreasonable to me. Becoming irate is just an emotional response to a frustrating situation, it’s temporary even though the disability is not.

    • Jan1 November 11, 2015 at 9:29 pm #

      Christopher, I like what Richard said to distinguish the meaning. And I echo the others–good to see you back here!

  12. Amy Corcoran-Hunt November 10, 2015 at 7:37 am #

    Patience. Bullpucky. Of course, I am already patient. It takes me three times as long to put on makeup because my dominant right hand is out to lunch. I have to wait for a hand to get in the shower and into and out of bed. I can’t drive anymore; the spouse will run out for what I need tomorrow. Must it be today? Patience. I do believe we have it. More of it is hardly the answer.

    • Richard M. Cohen November 10, 2015 at 8:20 pm #

      Bullpucky?

      R.

      • Amy Corcoran-Hunt November 11, 2015 at 9:28 am #

        A polite way to dismiss or reject something without having to say bull****. Typically used by parents, teachers, youth guidance counselors, and Rachel Maddow.

  13. Lisa guyder November 10, 2015 at 10:53 am #

    Bravo Richard. I’m tired of hearing the same thing. Matter fact I just told my neurologist I wanted off the drug I started in April because of the side effects they really scare me. Now I have to have an MRI to see what’ going on because I’m in flare up. I hate this disease. And I hate MRIs. I need to get on some solumedrol but she wants an MRI to see what’s going on meanwhile I’m suffering.

  14. Christopher November 10, 2015 at 11:55 am #

    Lisa,

    If that’s what you want to do (get a course of SoluMedrol) then you’ll have to push harder. I myself am tired of hearing that I “need to take control of my care” to “be my own advocate.” Only to then have to fight with doctors about what is important or relevant to my condition. I understand that I can’t really diagnose myself, and that some things may be counterindicated with other things. But that’s what the doctor IS there for. It’s my life and my body, right? Why should I have to argue with a healthcare professional about wanting to get a course of something I’ve had in the past that helped? The doctor needs to explain WHY, and in a way that I (or you or anyone) completely understand. That’s his or her job! Just a vague, ‘we need to wait for a diagnostic picture to see what it’s doing’ is vague and utterly useless for the patient. I recently had to fight to get a nurse to call my neurologist and ask him to order me a vitamin B12 injection. I had to ridiculously defend my plea to improve my health with a supplement that is totally benign at worst for me. It was demeaning. I think too many doctors take on a role of parent as well as healer, and it stymies people since they (doctors) already seem to hold so much power in that they know more than most of us about our bodies. Yet they don’t inhabit our bodies, we do. It’s very difficult, but with this disease we need to be tougher about where we want to go with our treatment. But (and it’s a big ‘but’) it has to be tempered with being well informed and always asking questions, as well as learning good critical thinking skills. In that way we can take an active rather than passive role in our healthcare, and take control of our physiological destiny.

    • Sue in Tx November 10, 2015 at 11:10 pm #

      Christopher, glad to hear your voice. I Also like your coined phrase “physiological destiny”. I agree it’s frustrating and tiring to be a zealous advocate for oneself but I do think the alternative is worse. I fought for b12 too. I consulted with hematologist to get higher and more frequent dose during a flare. Most drs are only familiar with standard dose but there’s esoteric studies out there re high levels of supplementation for demyelination. Keep
      Fighting.

  15. Sandra Schneider November 10, 2015 at 2:14 pm #

    Patience? It’s the opposite of what we need. Patience and complacence? I don’t think HIV would be such a treatable disease if those brave activists were “patient”. The pharmaceutical companies rake it in while we languish and fall further down the hole of disability. Admittedly, we are too sick to externally show the outrage that many of us feel internally. I’ll try and save the patience for my family. After living with this disease for over 30 years, I think I’ve been patient enough-it’s time for a movement and some advocacy over MS.

  16. Brian L. November 10, 2015 at 2:40 pm #

    Yeah, I’m totally over the whole patience thing. When I was diagnosed in ’97, my neuro said he expects to see a cure in 10 years. Ha! The medical community keeps telling us that the research is moving at breakneck speed. From my wheelchair it feels like the speed of continental drift.

    • Amy Corcoran-Hunt November 10, 2015 at 3:48 pm #

      Yup

  17. Lisa guyder November 10, 2015 at 4:55 pm #

    I know Brian I have been in the chair for the past 10 years I have heard the same thing about a cure you get sick of it. I’ve been very passive in my treatment and now I’m taking a little more control, what I want and what I need. I’ll keep you guys posted. Thanks for your thoughts Christopher.

  18. Nik November 11, 2015 at 7:41 am #

    Patience? I don’t want to be told that so I avoid Drs! Instead I see naturalists or dive into my own treatment of a combo of the Wahls diet and other not proven methods of treating my own disease. You need patience and blind faith to try the meds they offer for this shitty disease. The only patience I use is with my kindergarteners every day. I have no patience to watch myself decline, therefore I fight on and ignore my problems. Sure I might be on my backside for a while next flare and then I suppose I will need patience to get up. In the meantime I have been focusing on a saying I recently came across on FB by Richard Gere. “if you are depressed you are living in the past, if you are anxious you are living in the future, if you are at peace you are living in the present”. It’s actually what’s been getting me through each work day. Be well all and Happy Veteran’s Day!

  19. Sue in Tx November 11, 2015 at 1:38 pm #

    Nik, Thanks for posting the quote, it actually helped me recenter myself from an anxious day I am having. I know and love that quote. And I have loved Richard Gere ever since he swept Debra Winger off the factory floor in Officer and a Gentleman ( and I note he has aged quite well). Gere is really into eastern thought. He is quoting Lao Tzu, considered one of the founders of Taoism. Interesting that eastern medicine / thought can sometimes be the best guide for us on this journey. Thanks for reminding me of this powerful quote. It improved my day!

  20. Jana November 15, 2015 at 7:30 pm #

    Richard…Just saw your tweet. Sorry that you are having a bad day. Tomorrow will be better.

    • r. cohen November 19, 2015 at 1:27 pm #

      It frequently is.

      R.

  21. Louisa November 16, 2015 at 9:49 am #

    Tomorrow MAY be better. And that’s what keep us coming back. I hope that it is, Richard.

    • Grandma November 16, 2015 at 10:26 pm #

      Richard,
      Please rest and take care of yourself. Maybe you’ve been doing too much and your body needs to recharge.

      • r. cohen November 19, 2015 at 1:33 pm #

        My body needs an overhaul, a new motor that actually responds, definately a new GPS so I know where I am going, and a map.

        R.

  22. Ann November 16, 2015 at 10:49 am #

    Enjoy your day of rest Richard. For the rest of us, I have a question. What would you enjoy receiving for Christmas? I do not mean a cure for MS, use of legs ……
    I mean a practical gift that would make your life easier. Something a friend, spouse, child, parent could really give to you. Just a thought to play with while Richard is resting.

  23. Jan1 November 16, 2015 at 1:49 pm #

    Ann, I’d say “special time.”

    Time in doing something I’d like and am able to do, something in which to appreciate the simplicity of the holidays and take it all in. And time, with no questions asked (Where is your cane? Should you be eating that? No comments, especially when I trudge through and don’t complain. No looks of sadness or frustration). The simplicity of just “seeing me” and accepting, of being together without thinking about the strings of MS..

    Likely with a coffee and some dark chocolate.

    Practical, inexpensive, and with meaning — the feeling of getting in tune with and addressing what really matters to me–not what perhaps should (and of any accommodations just being business as usual) is something that makes my life easier.

  24. Ann November 16, 2015 at 2:20 pm #

    What a joyous, peaceful vision you paint. I love the “coffee and dark chocolate”. I am limited to one coffee a day and have always loved it. It annoys my bladder so it’s in limited quantities. Thanks for sharing.

  25. Jan1 November 16, 2015 at 2:32 pm #

    Not a daytime TV watcher (but somewhat of a news addict), I do catch the start of the Meredith Vieira Show when able. Today, she and her panel spoke of the Paris attacks. Richard Mentioned the Charlie Hebdo attack in a prior post. I imagine he may speak of this, as well. If too busy, I will comment.

    Given the current topics, that December 7 is approaching, and what my dad said in reference to 9/11, I’ll share the ending portion of a LinkedIn post I made after watching the 9/11 TV coverage this year:

    —–

    …Though farther removed in time, I know that my late Dad always remembered December 7 every year. He fought in WWII; my thoughts always turn to him on that day. He did not speak much about fighting in the war but did allow me to interview him only once — after a Veterans Day event at that same elementary school where I had once volunteered. Not a story for a newspaper but for our family to have, to know about, and to better understand him.

    His memories unfurled at that elementary school flagpole on Veterans Day, and I felt fortunate that he would finally talk about them with me.

    I’ll always remember the pained look in his eyes as Dad recalled, over a simple lunch at a favorite spot of his, stories of what he went through in the war at such a young age and of friends lost.

    He’s gone now (passed away in 2012 at age 87), but his experiences remain on paper for my family, including our then kindergarten and first grade sons who are now young adults and old enough to appreciate the enormity that was not so apparent to them during their elementary school years.

    Dad’s ending thoughts about his WWII experiences were, in his words, “The world never seems to learn as wars go on endlessly. I hope that this world settles down and that none of my grandchildren will have to go through that.”

    ——–

    So Ann, it is not the actual presents I remember but the time spent with my dad — the look in his eyes, the time to pause amidst the busyness of life. His sharing a part of himself — a lasting gift.

    And it is most unfortunate that horrible things do go on endlessly.

  26. Jan1 November 16, 2015 at 2:39 pm #

    Ann, thanks for your kind reply (looks as if we were typing at the same time). And for me, decaf works the best I will say. Yes, bladder and also caffeine makes me jumpy…

    I likely am hyper enough without caffeine!

  27. Cari November 16, 2015 at 3:19 pm #

    I was just diagnosed with MS – I am 34 – and trying to learn as much as I can about the disease. I just came across your blog as I have an appointment with one of your doctors in a few months. Thank you for being so real and sharing your story.

    • Jan1 November 17, 2015 at 12:08 am #

      Cari, while I realize that you are speaking to Richard, I will comment since you are new to MS. Actually, I will give advice (not a typical thing here):

      I think it’s wise of you to do your research–and that can include MS, drugs and drug companies and their studies, no drugs (I’ve never taken them; I’m into year 11), different approaches, the Wahls diet and other CAM and then make the decision that is right for you personally, whatever that may be. No one has a crystal ball, and everyone is different, though we are similar, too. I wish you well.

  28. Pam I Am November 16, 2015 at 3:53 pm #

    My husband told me last night that he feels like he has lost his wife. And since I am the one married to him, of course, I was devastated. He no longer sees the “me” he fell in love with and married 15 years ago. Nope, he views me more as a roommate/friend and himself as a caregiver. I used to feel cherished by him; now I am just another obligation, like feeding the cat or cleaning the garage.

    He married me knowing I had MS and knowing that it is a progressive disease. I was 40 and even though cane-dependent, I had mobility and could still drive my own car. I was independent. It was easy for him to see “me” when my disease took a back seat.

    Now that I have progressed to wheelchair dependency, inability to drive, relentless fatigue, and bouts of intense myoclonus, it has become impossible for him to wink at MS anymore. He has seen me at my worst and most fragile–3 weeks in rehab this summer. The PT and OT insisted that before I could be discharged I had to demonstrate to him what I learned. Transferring from wheelchair to toilet and back, then from wheelchair to shower, my clumsiness, fragility, and ugliness all laid bare and naked before him. He left the room to take a phone call. But I knew. He couldn’t handle seeing me like that. In fact, he doesn’t see me at all anymore. Certainly not as a woman worthy to be desired.

    I’ve never wanted to be anyone’s burden or an object of pity. Now I am both. I’m having a hard time processing this reality. I have been patiently putting one foot in front of the other for the past 22 years; chasing hope (yes Richard!), and always looking for the silver lining. Now it just feels like I’m stumbling forward and MS is poised to overtake me. I feel like my life is over–I’m just waiting for it to formally end. (I don’t mean that in a woe-is-me way; more like a matter-of-fact observation).

    Sorry for the long post. My heart is broken and I have no one else to tell. I don’t want anyone I care about to know how I really feel inside. They worry too much as it is.

    • Sue in Tx November 16, 2015 at 4:37 pm #

      Pam I understand. I’ve been here. I’m sorry. I have decided that some people find it easier emotionally to become angry or dissatisfied with me than to feel the pain of compassion for watching the effect of MS on me. When I break it down this way, it is not a rejection of me personally, but the outright refusal to accept I am suffering from a disease. I do hurt for not feeling loved for my essence sometimes. But this journey teaches us much along the way. I know I’ve been loved and have lovely memories. I tell myself that it is too painful for some to see me visually changed, and due to their pain, they choose avoidance. Trying to understand their pain helps me to not be resentful. So I validate my loved ones’ difficulty of living with someone with a chronic illness. I also encourage living as fully as we can. Reach out to your support groups or church or friends for guidance. positive energy your way. . .

      • Pam I Am November 16, 2015 at 8:26 pm #

        Thank you Sue. That gives me a totally different perspective that I had not considered before. It makes perfect sense. He certainly has earned the right to go through his own stages of grief and loss.

        I appreciate the insight. It does make the pain more bearable.

    • Yvonne November 16, 2015 at 7:40 pm #

      As a single person I understand Pam. My ex couldn’t deal with the future of this disease. Each progression reminded him of the direction it was going and we both knew there was no retreat. The relationship already needed work and adding an incurable progressive disease was too much. It takes a special relationship to face the challenge of disease because it changes you physically, mentally and sexually. I know the baggage I bring. Dating hasn’t been a priority for the last year since I look great sitting down but eventually I have to get up and the visual changes are only part of it. I’m fatigued in pain and don’t like explaining so my level of tolerance for BS conversation is low so I’m not as social. I don’t want to burden anyone. These are the issues single people with MS face. Your husband is still there and probably having a hard time coping with the loss of the person he once knew. Hell we have a hard time with it so we have to expect others will. It’s not easy transitioning from a vibrant independent person to dependency. It’s just as difficult transitioning from a lover to a caregiver. It takes patience and unconditional love. Honestly I not mad at my ex because I am not sure if I could do it if circumstances were reversed. As I always said…it takes a special kind of person.

      • Pam I Am November 16, 2015 at 8:37 pm #

        You are so right, Yvonne. MS demands so much from us, but also from those who care about us. I hadn’t anticipated that our intimacy would be one of the casualties. Perhaps I have been in denial too, so I didn’t see it coming. Then when it arrived I was caught off guard.

        Thanks so much for your words of wisdom. It gives me a lot to think about.

  29. Sue in Tx November 16, 2015 at 4:13 pm #

    Just was watching Meridith’s show on t.v. Meridith was interviewing Kelly Osborne, who said her brother Jack has been discriminated against for jobs because he has ms. I realized that I mistakenly I thought celebrities wouldn’t have experienced this aspect of MS. Employment insecurity. Kelly explained employers need education about the illness. I agree with her. But because of the unpredictability of MS, I think it is hard to overcome an employer’s fear that MS makes one unreliable. Also, MS impacts an employer’s risk profile for health insurers, potentially impacting the cost of their health insurance. Of course, employers can’t openly discriminate, and must give reasonable accommodation , but I do not reveal my MS in my job searches and I find it incredibly stressful to have the secret. After I’m hired, How many times should I make up an explanation about why I am stiff or lame? How do I explain why I can’t pitch in and carry heavy boxes or take the stairs on no elevator day? What about why I can’t drive long distance to a meeting, or get tongue tied during conference call? Let’s not forget the way i must laugh off clumsy trips and falls and walking into walls. Or apologizing for illegible handwriting with my affected hand. There doesn’t seem to be acceptance at work after I reveal my MS either. The good days bad days rhythm is suspicious to co-workers. I look so good, how could I be sick ? (What benefit are co-workers afraid I may be getting) So yes, I totally agree with Kelly Osborne that employers need education about MS. But I haven’t successfully done it. Have any of you been able to get acceptance at work?

    • Jan1 November 16, 2015 at 11:33 pm #

      Sue, my vote, sadly, is with Kelly O. and Richard (clear from past posts). I work part-time freelance from home. (Could handle maybe 15 hours/week at a company, but no one is knocking on my door for such hours).

      Two long-time clients know. It mostly doesn’t even arise, and why should it? I get my work done — in fact, I’m often the one keeping schedules on target and reaching out. They know that I care and go the extra mile by nature. I think it’s two of one client’s clients who know–it came up when it allowed me to extend empathy to an owner regarding a relative’s health challenges. But only after work ethic and work was very established.

      The third is new — they do not know. There is no reason to mention it.

      This all reminds me of leprosy on the island of Molokai years back. Gee, how complicated life can be.

  30. Jan1 November 16, 2015 at 11:19 pm #

    Pam—I think that Sue and Yvonne imparted helpful thoughts. I am so sorry to read of your discouragement. Believe me, you are not alone. Many of us can understand the same or similar experiences firsthand.

    Whether spoken, with glances, or with changed circumstances that include being left out, the reality can be very tough. I am reminded of being called a “cripple” – in supposed jest, but it hurt, and the thought still does, actually. I do think that I have a sense of humor. But I can be sensitive, about that anyway. I wouldn’t call someone that—maybe I expect too much? (No, I don’t think so, not there).

    So he has lost his wife? Yes, a stinging comment to endure when you’re the one on center stage. We don’t ask for this. If taking an aspirin, exercising daily, or giving up something like ice cream would remove this, we’d do that, right? And did we call some MS line and ask to get it? (No). It is far from simple.

    And that’s why we need support. Support on our terms (it’s an individualized thing), and people who care enough to understand reality and then work with us just as we are. To talk about health, if needed. And to talk about other things, too.

    But it is also a loss for loved ones. I likely too often just press on, push through pain, numbness, exhaustion, feeling separated from the norm, but often need to remind myself that the loss is not only mine. I don’t exactly live in the bubble I think I may. (And that makes it harder still).

    So, my hope for you is that you’ll get your own support. And then, strength for yourself, and then strength also in working with your spouse (providing that he is trying—I see differences between “just struggling” and being bitter with another because of the struggles. If blame is present, then life gets tougher).

    We really cannot control another person. But I am in charge of how I will respond to another, how I will view and think of myself amidst it all (not easy, I get that), and how I will respond to this adversity. I’m not the the same person my husband married nearly 25 years ago (good and bad), but then again, neither is he (good and bad). Marriage takes commitment and hard work. Life in general does, too. I personally care more about the core of a person than appearances.

    And I for one won’t complain that your comment was long 🙂 (I think it was fine). And, btw, inside I can go up and down with health insecurities, some tears. This blog and a few close people are key for me.

    • Pam I Am November 17, 2015 at 2:33 pm #

      I so appreciate all of your thoughtful comments. I’ve not posted often, but have been reading this blog and comments for awhile now. When I needed to vent, this was the first place I thought to come. I knew that every reply would be heartfelt and honest, and you more than lived up to my expectations. I now see more clearly how MS changes the dynamic of our relationships in ways big, small, and unexpected. Now that I understand better what my husband may be experiencing (he’s not much of a talker, btw), and how my own insecurities interact with his distancing himself, I feel more hopeful that we can come to an understanding, even if it’s not a satisfactory solution.

      Thanks again, guys. You’re the best!

      • Jan1 November 17, 2015 at 5:21 pm #

        Pam, I think we all learn from and support each other — I extend thanks to you, as well.

        And after an earlier mention, I looked at Richard’s Twitter posts recently, shown above at right here. (I am personally neither on Twitter nor on Facebook. Can you imagine? …I mean, with as long as my replies can get, I’d likely never get anything done!) But Richard, I do hope that you are feeling better. This is no fun. And much less so on really bad days. Extending empathy and a cheerful thought.

  31. Yvonne November 17, 2015 at 9:14 am #

    Good thoughts Jan1 and thanks Pam for sharing. Dealing with loss of Intimacy both emotionally and physically is a new topic here. I am curious about how other single people are handling this as well.

  32. Sue in Tx November 18, 2015 at 10:51 am #

    Yvonne, Pam, and Jan, I appreciate your candor too. I think Yvonne used a good word choice re relationships dealing with MS “no retreat”. All relationships roles and even identities are altered by MS. We have no choice to adapt but those around us may choose to opt out, and it’s a painful process for everyone. It can be lonely though, can’t it? So your voices help me too. Someone used the word “vibrant” to describe their pre-ms selves. I mourn the loss of my vibrancy. I feel occasional glimmers and revel in it. But as I mentioned in an earlier post, I focused all my pre ms vibrancy and passion on my career and left my personal life off balance. Now I am very aware of use of my energy and passions on something, and i deliberately determine if it worth my efforts. In other words, I am better able to find balance in life. So in this respect, I have grown as a person. But this is bitter sweet personal growth.

  33. Ann November 18, 2015 at 2:16 pm #

    My turn to weigh in. Everyone has spoken so eloquently about MS and its impact on our relationships. Every time I read one it makes me reflect on my husband and I. I do not say we have a perfect relationship, how can one with MS in the partnership. I will say I would not choose to be with anyone else on this journey. My husband has become a caregiver but I too am a caregiver. He does shopping, bathing, toileting, working and loving. I take care of digesting mail that he does not understand, managing our as well as my mother’s finances, filing tax returns, calling and arguing with insurance companies and loving him.
    Some of our expressions come out in strange ways. My husband must help me off the toilet every time but we make time for a hug and kiss every time we do it.(Unless we are both not functioning well and the goal has changed to keep me off the floor:)
    I have a computer that is attached to a printer in another room. I will frequently write him a note of thanks and love and send it to the printer for him to find at another time.
    He calls me every night at least 2 times while he’s at work to be sure I am OK and to blow off steam about something going on at work.
    So before you sell yourself off as a burden, look deep, see how everyone contributes and learn to express thanks not only in your heart but verbally too.

    My two cents:)

  34. Jan1 November 18, 2015 at 4:39 pm #

    Ann, I will comment on your reply — truly wonderful anecdotes; dealing with reality in important ways, ways that matter on many levels. And also inspiration to work with reality and understanding how everyone can positively make an impact.

  35. Ann November 20, 2015 at 3:16 pm #

    Thanks Jan1. I was afraid I would come off rude with what I was trying to say. Since my Christmas idea fell flat here, I thought we could try something easier. Topic: What are you thankful for and/or how did anyone make someone else smile today.
    For me I am thankful for my daughter who drove 30 minutes last night to check my heater which had made a loud “boom” in our back hall while my husband was at work. All was well and I’m grateful for her attention.

    • Pam I Am November 20, 2015 at 10:21 pm #

      Ann, thanks for the reminder: I need to learn to appreciate my own contributions in my family relationships. I think I sometimes give myself short shrift when contemplating being a “burden.” I need to also embrace what I offer others as well. And when my husband and family members praise me for something I’m still able to do well, I shouldn’t just brush it off or downplay it like I usually do. Might make a difference in how I deal with my everyday challenges and the value I place on myself.

      Thanks for sharing your thoughts. 🙂

  36. Ann November 22, 2015 at 6:27 pm #

    Pam I,
    You are not alone in brushing off your accomplishments. We all tend to shortchange ourselves on our successes. It is due to everything being so difficult. Even our small successes, which are so big to us may make us feel as if we deserve extra special congratulations. Unfortunately the chronically healthy (to use Richard’s words) have no idea the energy it took us to achieve our success. Next time you receive recognition from your family say I’m happy you recognized my success so how can we celebrate it. Then do what ever it is:)

  37. rachel December 1, 2015 at 1:31 am #

    Richard – Please keep at the plasmapheresis. I have read about it, and believe the hypothesis behind it does have scientific validity and it may help to clean up the blood from any proinflammatory triggers that may be causing symptoms. You have to stop these white blood cells from attacking your own body. So if you can get rid of the triggers, it will prevent further decline. I also believe you need to be getting sufficient Vitamin D to help strengthen your body and you should be getting sufficient sunlight — at least 15 minutes of direct sunlight a day outside, ideally in a sunnier place than Manhattan.

    I have RRMS and am terrified of a decline. I read constantly about different ways to stay healthy and well. I understand what happens when the axon is damaged, and have permanent damage as well to my right eye that happened about 12 months. Thank god for my left eye …

    I send you love and good energy. Please believe the plasmapheresis will help because your attitude matters, and you have to have some faith. I say this based on my experience. I actually think you are fortunate to try it. Most doctors won’t do it for RRMS patients.And you have a platform as a writer to be able to inspire other patients with wellness. If this helps for you, then other people will be inspired to take it on.

    I pray this makes you feel better! So keep the faith and keep at this one.

    Love, love and more love.

    And don’t publish this really. Its sort of private.

    It is just meant for you. I feel better myself sending you good, healing energy online.