Apologies, Again

I an acutely aware of my blog absence.  I get a lot out of leading or at least participating in our ongoing dialogue about whatever I or anyone else wants to put on the table. This has been a rugged new year so far. I have been very sick with a partial bowel obstruction, adhesions going back fifteen years to multiple abdominal surgeries for two bouts of colon cancer. The scar tissue can come back to haunt. And it has.

Fighting on multiple fronts takes its toll. It is like defending Moscow and landing at Normandy at the same time. Usually I just roll my eyes and try to go with it. But it is getting harder. I rail against becoming a victim but yell that enough is enough. I know I cannot have it both ways. Some times the war is wearying to the point at which discipline crumbles and ceases to be a guiding force.

This is when I try to survey straw and the camel’s back to find my second wind. It is in there somewhere. Self-indulgence has to meet resolute determination head on. The best in me has to rise up on hind legs and breathe fire. All of us have that secret strength. We just have to locate it and know how to use it.

The Hundred Years war was a series of conflicts fought in England between the fourteenth and fifteenth centuries. I guess things could be worse. NBC Universal canceled Meredith’s television program in the midst of all this. “It’s only television, Richard,” she said to me.

 

 

 

25 Responses to Apologies, Again

  1. Jan1 January 9, 2016 at 10:03 pm #

    I am so sorry. Seems that when it rains, it just pours. And often with no umbrella in sight. So all we can do is endure getting soa

  2. Jan1 January 9, 2016 at 10:15 pm #

    (oops–hit something on my phone: back to my computer);

    …So all we can do is endure getting soaked and know that we will eventually dry off (even if shivering cold in the process).

    Yes, things could be worse. A 12th person just passed away after enduring tornado wounds. But I don’t mention that to make us feel better or to minimize what anyone endures–on the contrary, hardship is relative to each person, and often difficult.

    I’m currently emotionally overwhelmed. Richard, I am so sorry for your added physical challenges. Must be tough, indeed.

  3. Nan January 9, 2016 at 10:40 pm #

    Richard, Something made me tune in to your blog tonight. I haven’t done so in a long time as my cognitive issues have left me feeling unable to articulate my thoughts as well as everyone else. Yet here I am, wanting to give you encouragement! You see we go back a few years. Nine years ago you were leaving a certain Drs. office as I was entering, for the first time. I recognized you and figured, if he’s good enough for you, he’d be good for me too. Wrong. Once he found out my husband worked for your old network….. it was all about using me to get air time. So M is correct, it’s only a show. What we’re dealing with is life. The day that’s cancelled it’s over!

    You have shown more resilience and strength of character than most able bodied people. Your ability to express the frustrations of living with the hand you’ve been dealt are so helpful to those of us who struggle to find our words. I’m truly sorry that you’ve had so much to suffer through. I hope you can feel what I know is a collective embrace of love and comfort from all of us who care so much for you!

  4. Jan1 January 9, 2016 at 11:22 pm #

    Nicely said, Nan.

    Question: has anyone had any experience with ABILITY Magazine and also their job searches? I just came across it. Also–I will appreciate any comments, but please do not let my question be a tangent to divert from Richard and his topic. Thanks.

    • Lyla January 13, 2016 at 8:19 am #

      I’m familiar with ABILITY but haven’t used its job search. Are you job hunting?

  5. Christopher January 11, 2016 at 3:46 am #

    Sorry to hear of your recent struggle, Richard. It’s like surviving getting thrown out of a moving car and rolling into oncoming traffic, then surviving that and having to shuffle across a busy street to get home, with your shoelaces tied together. To say you are a survivor is a bit of an understatement. The actuaries are all having conniptions I bet.

    I know that “secret strength” you’re talking about, and I haven’t got a clue where the heck it comes from. Something in the back of my mind keeps telling me to ‘calm down and breathe’ when I’m thoroughly pissed off and flailing around, frustrated and exhausted. It’s akin to trying to relax during a prostate exam from a doctor with Parkinson’s.

    • r. cohen January 15, 2016 at 7:26 pm #

      C.-

      I do believe that secret strength is reall. It is mysterious if not mystical. The secret is from ourselves. We sell ourselves short. We are stronger than we know if we choose to diig in and fight. That is what separates us. The wiill to keep going.

      R.

  6. Andrew January 11, 2016 at 9:41 am #

    Richard, so sorry to hear about all the “misery” that hit the fan for you. You remain in my thoughts for that “secret strength” to move into relief and return to less pain and ordeal. Christopher, if humor is the best medicine, you made me laugh so I hope it lifted Richard’s spirits, too. I’m at the age where I always check out a doctor’s hands and relax when I see the box of rubber gloves in the examining room say “small.”

    • r. cohen January 15, 2016 at 7:28 pm #

      Christopher is the Jack Benny of chronic illness.

      R.

  7. Pam I Am January 11, 2016 at 12:52 pm #

    I was afraid your absence from the blog meant you might be in the midst of a new storm. So sorry to see that I was right. No apologies needed…we’ll be here waiting for your return. Sending positive energy your way and wishing the best for you…for us all. I am reminded of this partial quote from Camus that describes you beautifully:

    “In the midst of winter, I found there was, within me, an invincible summer.
    And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger – something better, pushing right back.”

    Of course Albert Camus was no sentimentalist…his writing in “The Fall” was where I first learned of the “little ease,” which I now metaphorically compare to MS.

    “The little-ease was a type of prison cell used in the Middle Ages. One was thrown in and essentially forgotten. It was made of what Jean-Baptiste calls “ingenious dimensions,” neither high enough to stand in nor wide enough to lie down. You had to live diagonally, in a squat, an awkward bending.
    It was through the stiffening of his own body that a man would learn he was guilty; it would quickly become clear that innocence lay in stretching. It would be impossible to live in one of those cells, says Jean-Baptiste, and not be guilty.”

    I find it impossible to live with MS without being guilty of self pity, anger, hopelessness, and despair. But at some point, I seem to mentally stretch and remove myself from that cell. How any of us are able to do so is beyond my understanding. Perhaps it is that invisible, invincible force pushing back.

    Summer is coming.

    All my best, -Pam

    • r. cohen January 15, 2016 at 7:30 pm #

      Thanks, Pam.

      R.

  8. Sue in TX January 11, 2016 at 3:31 pm #

    Hello. What a way to begin this year. It sounds like so many of us are off to a rocky start. I hope your health issues improve, Ruchard. And while I am quite disappointed about merridith’s show, I agree with her that it is just tv. My January has already been a doozy, with an encouraging medical report followed by some devestating personal news. So I reiterate the quote I posted before. It reminds me that there are good things which exist with the disappointments. It’s a fact that is hard to deny, no matter how dismal something may seem “there’s always failure. And there’s always disappointment. And there’s always loss. But the secret is learning from the loss, and realizing that none of those holes are vacuums” by Michael j fox.

  9. Christopher January 11, 2016 at 4:07 pm #

    Wow… that’s cool, Pam. That living in a bent space without relief is pretty much exactly like living with MS. I’ve only ever read The Stranger, and thought that had a lot to do with issues like MS–the ridiculousness and ambivalence of a disease that makes no sense, and favors no one and nothing.

    We need to find a way to bottle that “invisible, invincible force” for later use.

  10. Christopher January 11, 2016 at 4:14 pm #

    I hope you can find some solace in the good news, Sue, that gives you time to find a place of some peace to make your heart lighter in the face of the devastating news.

    I wish and hope 2016 is a year of profound healing and discovery for everyone.

  11. Yvonne January 11, 2016 at 9:55 pm #

    The good news is we made it to another year. The bad news is still no cure so we don’t know what the new year holds. Sounds like we’re not off to a good start and to make matters worse our blog leader can’t fearlessly lead our discussions on a regular basis so our venting outlet is limited. Here’s hoping things turn around or at least stabilize for everyone here this year especially you Richard. Your family needs your wisdom and strength and selfishly, so do we. Did I just use the “H” word…

  12. Linda Lazarus January 12, 2016 at 1:15 pm #

    I have learned, many times over, to just wait out the bad times. Bad times are painful and scary ….perhaps problems will go back into hiding, perhaps they will ease a bit or perhaps I need to understand my new normal.

    Whatever is happening my struggle is to get my brain wrapped around a waiting stance. “Wait. Wait. Wait. Stop thinking and just wait.” This has served me well. Often I do get better.

    If waiting brings no physical relief, it does give me worry relief. So, when people tell me to “hang in there”, I think to myself that those well intentioned souls have no idea how good I already am at hanging.

    Best wishes…

  13. Lyla January 13, 2016 at 8:15 am #

    No apologies needed here. Life is a wild ride even without MS riding shotgun. The only constant seems to be change and maybe the laundry.

    I appreciate the chance I get each morning to try it again.

  14. Yvonne January 13, 2016 at 5:22 pm #

    Lyla-perfectly put…we get to try again 🙂

  15. Pauly January 14, 2016 at 2:33 pm #

    Just discovered your blog today through NARCOMS magazine. I feel like I need to binge and catch up on all you’ve written over the past 20 years.

    So sorry to learn of your intestinal problems, Richard. I can’t imagine the physical pain and discomfort of it all. My 32-year-old son died five years ago of colorectal cancer, and I wince and cry even now recalling his pain. And then to receive a kick in the gut on Meredith’s behalf on top of it all — How unfair it all seems!

    Don’t want to get preachy, though I am a person of faith. Even believers have to live day by day with feet on the ground and bottoms on toilets. (Can’t believe I just wrote that, but it’s true.)

    I have a “mild” form of MS, which means I look totally normal, have a normal walk, can do yoga and tap dancing, but can’t seem to put two thoughts together before noon. And sometimes those two thoughts, which made perfect yesterday, look like gibberish today.

    Thank you for sharing your life online. I look forward to reading more.

  16. Jan1 January 14, 2016 at 10:01 pm #

    Pauly, you made me chuckle. And self-flushing toilets drive me nuts, but that is another topic. (I cover the sensor whenever I can).

    Very sorry to read about your son. As a Christian myself (perhaps that is what you had meant?) it’s a fact that all of us humans have a terminal condition: life (it will end here for all someday).

    So great that “you can look so good” (go ahead and wince at that one if you like because even if “mild,” it is still not fun). I used to be able to continue normal exercise, but not in the past four or so years. To strangers, I can hide it behind a “grocery cart walker” but those at my usual grocery know when things are not good, as in when seeing me in a scooter. The good news is that I wield it rather well and only crashed into/downed a vitamin display once at a big box store.

    And as I said earlier, I do believe that 2016 is the year to admit that I have this. Not announce it; just admit it for what it is, rather than being/acting ashamed (and that for no good reason. It feels good to not have that “M” necklace choking around my neck. It is what it is; I am still who I am! And that hopefully will better educate others in the process).

  17. Jan1 January 15, 2016 at 10:56 pm #

    Richard, one of my sisters had a kidney stone recently. I understand that it hurts like ever. So sorry to read that, if I read your tweet above correctly. Perhaps at least a reason for some of the pain, but still a hard thing. You are managing well, and with perseverance.

  18. rachel January 18, 2016 at 11:34 pm #

    Richard – I am sending good energy your way. You are in a leadership position and must keep hope alive, not only for you, Meredith and your children, and for every person who has MS and who is working to remain well! I read recently about a superb physician in Queensland Australia who is testing a new adoptive immunotherapy for MS. It is targeted and I believe in his scientific hypothesis. His name is Dr. Michael Pender. It is therapies like these which can help keep hope alive. I wrote to him and he is now doing a pilot in five more progressive patients. I wonder if you ever experienced Epstein Barr Virus / Mononucleosis? If so, you should write him too. I would be happy to discuss with you and Meredith. His therapy makes a lot of sense to me for many reasons.

    Link: http://multiple-sclerosis-research.blogspot.com/2014/02/guest-post-professor-michael-pender.html

  19. Lisa January 20, 2016 at 12:11 am #

    Richard is there any merit to the findings of Paolo Zamboni some MS is caused by a blockage of the pathways that remove excess iron from the brain – and by simply clearing out a couple of major veins to reopen the blood flow, the root cause of the disease can be eliminated.

    • r. cohen January 20, 2016 at 3:41 pm #

      I don’t buy it.

  20. Christopher January 20, 2016 at 2:24 am #

    I am not speaking for Richard, but based on almost all available research–which is fairly paltry–the answer is… none. Also the procedure is unnecessarily risky for healthy patients. One other thing is that it’s impossible to measure iron levels in the brain without a biopsy, which would be unethical, or until after death in an autopsy. Hemochromatosis is an inherited disorder that causes iron overload in many organs of the body. But there would be other symptoms alongside of neurologic problems, such as: darkening skin, cardiac arrhythmias and cardiomyopathy, cirrhosis, diabetes and joint pain among others. Multiple sclerosis is caused by a Th17 cell mediated immune attack on nerve cells and their glial cell support system. It has nothing to do with excess iron.