If I’m Lyin’ I’m Dyin’ (Warning–Raw and Whiny)

I have stated that writing these weekly reflections is therapeutic. Each week, I re-center myself through these mini-chapters that chronicle my mental and emotional journey around my physical dis ease experience. And you have been so kind to me in your comments, private messages and snail mail cards and letters. In fact, your kindness worries me. I just don’t feel like the guy you tell me I am, especially lately, as it has been getting harder and harder to negotiate the regression of ALS.

For some reason, my physical losses have really focused this week. Walking is almost gone. The muscles in my torso and lower back have lost their strength. And of course, this means that normal things like dressing are harder to accomplish. This week, more than usual, grief and despair have been close to the surface. I came back from a program on Tuesday so exhausted from standing with a handheld mic for a half hour, that I sent out one of the whiniest missals I can recall. I’m not proud of it. It had a quality that could have been interpreted as blaming the world for what has befallen me. Self-pitying, fatigued, and in a voice that sounded like aluminum fingernails on a slate blackboard, I really showed just how small dis ease can make you act. “Wow!! Who was that guy?” It took a morning to kind of patch it up, although everyone knows that once you say something, it cannot be taken back, not completely. It has been a hard week on me, my family, friends and colleagues.

And then there is the preparation of our new place. We are working with an accessibility designer who has learned to be sensitive but matter of fact about such things as lift and transport systems (since everybody knows that you won’t be able to move yourself), and discussions about the finer techniques of toileting for the paralyzed. These conversations are accomplished with care on their part, but nothing is off the agenda (so just get used to it). Of course, each of these conversations, from the layout of the transport to the need for a mattress that will raise you up, to the location of the toilet, the special sink, the roll-in shower, desirability of remote controls for lights and heat and locking the door illustrate how lucky I am. The fact is that we sold our house and are downsizing to a point where we can put these controls into the finish of the condo, and still get a lower mortgage payment. Most of my fellow PALS cannot even begin to put together the resources to help them manage, and if it wasn’t for the ALS Association, they might have nothing to support them (and I know that not all local chapters are as good as our local in Minnesota). Yet, I cannot help but feel resentful that others “know” where I am going in a way that I cannot. I hate the fact that we have to do this. I grieve both inside and out as each accommodation is planned and made, because it says to me, “You are dying. Each plan made is just another step closer to your final reality.”

I warned you this was raw and whiny.

But that is why I write. Therapy for the fingers and the soul, these weekly postings have become for me a cross between aspirational wisdom and physical malady. They help me to acknowledge my dis ease losses, while describing the space that helps get me through them. What I want you to know is that this writing is not the story of some Judeo-Christian Buddhist Saint who can look back on the physical existence of life with no regret. That would be a lie and a misrepresentation. Dis ease is not graceful. I guess I am writing because I value honesty. I don’t want you to think I am something that I am not. I’m just trying to make sense of all the knowledge and experiences that I continue to gain, while at the same time negotiating all the physical functions that I continue to lose. And I want you to know that it isn’t easy, even if I make it sound like it is sometimes. It is damn hard, in spite of the fact I have family and friends and colleagues that have chosen to stand with me in this process. Every once in a while, I just find myself crying at the loss. Every once in a while, I can’t help but shake my fist at God and curse my dis ease and this path I am on. Believe me, I am no saint, and it would be dishonest to pretend to be as much.

So what is the point here? I’m not sure. I certainly don’t want pity. A couple of weeks ago, I went to my primary care physician for the normal yearly check-up (I have ALS, by the way), and having not seen each other since my diagnosis 11 months ago, she came into the room with that “tragic look” on her face. I told her to stop it. I just cannot take the pity. Treat me normally. Her response was to brighten up and say, “Thank you, good to know.” So I know that I am not looking for that. But I also have to say that it doesn’t mean I don’t need empathy either. This is a very complicated space to occupy. I want to be as normal as possible, and want to be treated that way. At the same time, it is impossible not to acknowledge that what is normal for me is about accelerated loss and a shorter lifespan. It is the attempt to reconcile the need for honesty with the need for grace that frames my life.

And sometimes, God help me, I just need the melt down.

The great DJ of the sixties, Wolfman Jack, used to have a line that he would growl into the microphone–“If I’m lyin’, I’m dyin’.” I’m sure he meant it in a way that was supposed to be glib and hip and cool. But there is a weird truth in the contingency. I cannot help but feel that one of the very few things I can keep intact is my honesty. Sometimes it feels like that is all I’ve really got. It is almost like saying that covering up the experience feels like it is hastening my demise. Lyin’ is dyin’.

So forgive me for the corrective today. I will regain the space that has helped me thus far; I have faith in that. But the dis ease that requires faster than a speeding bullet negotiations of every little physical loss, the need to be planful for the eventualities that are almost 100 percent assured, the trying to keep just ahead of the awful creature that is nipping at your ankles, even when you cannot move your ankles, sometimes obscures the space that I know I’ll find again. Sometimes, I just need to let it out, feel sorry for myself, wallow in the anger and self-pity, and then be done with it.

The Wolfman was right. There is death in the dishonesty, and in the end, honesty is all we’ve really got. If I’m dyin’, I shouldn’t be lyin’. Honest.


13 thoughts on “If I’m Lyin’ I’m Dyin’ (Warning–Raw and Whiny)

  1. Arvid and I have been watching Star Trek Voyager episodes. In tonight’s episode, B’elanna Torres (the half Klingon Engineer), is having a horrible day….everything is going wrong and she is bottlling all her misery inside. Then Neelix (the self-apointed “morale office”) comes over to talk to her. He tells her that it is dangerous to keep all these feelings bottled inside and he offers to be her “punching bag”. He tells her to go ahead and yell and scream at him, call him names, rant at the world…..it is ok because he won’t take it personally. He knows she needs an outlet. So I guess what I am saying is that it is ok to lash out at the world–to whine—to cry—to shake your fist at the physical losses you are experiencing. And if I was with you in person, I’d also say to go ahead and yell at me or have a melt-down in front of me. I won’t love you any less. Everytime I get an update on your latest regression of ALS, I also rant and plead and beg the Lord to spare you…but after my ranting, I can go back to my life as a temporarily able bodied person, while you still have to deal with your dis ease. It’s not fair. In fact, it sucks. You ARE more than you think you are…we all see it. And we’ll continue to stand by you, no matter how cranky you get. 🙂

  2. Oh Bruce. I’m sorry you had a tough week. You are carrying around a burden that is much heavier than just about any of us, yet these posts have been for the most part very positive. I for one have been astonished you haven’t been *more* whiny; Lord knows you’re “earned” the right to whine whenever you feel like it. And even when you think you’re being whiny, it’s not that bad and you continue to be witty and insightful in the process.

    As a pathetic attempt to contribute something helpful, I’m going to email you an mp3 to “Clap for the Wolfman”, in case you’ve never heard it before. It’s a lesser-known Guess Who song from the 70s that features quite a lot of the Wolfman’s classic patter. I grew up in Chicago, not LA (we all listened to Larry Lujack on WLS), but the Wolfman had his own TV show for a while so we knew of him even if we hadn’t seen American Graffiti. Great voice. 🙂

    Peace, Brad

  3. Hi Bruce,

    On the whiny scale, I’d call that only about a 3 or 4. Grieving, angry…..yes. And with good reason. And I agree with Barb. Go ahead and do what you need to do. We can take it, we’re here to listen and we will still love you. I’m feeling my share of raw emotions today myself.

    After our family returned from a great trip to Disneyworld this evening, I talked wtih my dad and he shared some bad news regarding his liver cancer. After several good check-ups, and monthly chemo injections, now his oncologist at MD Anderson says his tumor is no longer being held in check by the treatment. That is the best treatment he has, so Dad’s best bet now, and get this, is to wait until his tumor gets large enough and then, to “try to get into a clinical study” somewhere near where he lives. I was surprized he didn’t follow that up with, “Are you having any suicidal thoughts?” Seriously?!? That’s it?

    I had/have quite a few things to say to that, and more than a few questions to ask. ….And a lot to process!

    I think that is the hardest thing about ALS, Cancer……probably many types of disease. Sometimes they seem to progress so fast that we don’t have time to really process. We’re so busy just getting along, dealing with what we have to deal with at the moment, (sort of like your first sky diving experience) that we don’t have time to really process (or grieve) our losses. Then finally, that one thing pushes you/me/us over the edge and we have to scream and cry and curse God and ask why us?!?

    I’m not sure there is any way we could do it differently. But having shared in some losses of my own, I recognize a rhythm in it: live, lose, adjust, process, grieve, and around again. It’s just that sometimes the losing & adjusting parts of the cycle seem to come so fast that processing & grieving get passed right by. Eventually, of course, we do have to let our grief and anger come spiling out. So, maybe the trick is to know that that’s probably the way it will happen. Know you’ll have angry, whiny, crying days. And that’s okay. You’re allowed. But make sure you have plenty of those ‘living’ days, when you are intentional with your time, and savour every moment with those you love, doing things you love.

    And on that task, Bruce, you and Ev are doing great! Keep doing what you’re doing and keep being honest. We’ll be here.



  4. Bruce: I am a lover of daily cartoons and read many of them each day. I am not
    exactly sure what the appeal is, but it has to do with joining a mystical world, some
    what parallel to our own, that brings a smile. Many years ago Ziggy took his broken
    toaster to a repair shop, saying, “I’m getting a new one for Christmas; could you fix
    this one temporarily?” I love this because all fixes are temporary. This includes our
    bodies, “all aching and racked with pain.” So we get a little retrieve now and then,
    but deep down inside (which is what your blog today is all about) we all know the
    “problem,” and many others will return. We are all standing by you because you
    speak for all of us. Your loses are our loses, but yours are coming at an exhilarated
    rate. Looking at life with your honesty is therapeutic, both its highs and lows.
    Christ’s greatest pain, hanging on the cross was not from nails in his hands
    and feet; it must have been from the fact that he was dying all alone. You are
    dealing with nails, as we all are, but you are not alone. We all want you to know
    how you and Ev are adored and how you are surrounded with loving hearts. We
    all appreciate your weekly “temporary fixes,” and we all look forward to the
    strength you will give us with your next one. Just saying, “Thank you,” seems
    like such a lightly spoken verbal fandango, but it’s deep, and it ain’t lying.

  5. One of the truths of humanity is that sometimes it just sucks having a body attached to our brains. It just is. I’m truly sorry this week was tough.

    Peace ( and I mean that)

  6. Whew! I’m just glad to know you’re still human – not some super-saint. Keep telling us the good, the bad and the ugly of it all. Sometimes the life-sucks-and-then-you-die gets to all of us, and heaven knows you have reason to hit that point more often than any of us. So rage against it or collapse under it, we love you through it. Thanks again.

  7. I don’t have to tell you that it is human and normal to whine and feel angry sometimes, and I certainly understand you don’t want pity. But you have my empathy, my love, my emotional support and, believe it or not, you are in my thoughts every day. I used to think that when people tell you “you are in my thoughts” or “I pray for you” it is a nice gesture which doesn’t do anything to alleviate the pain. Now that I am grieving for my father and worry about my mother, I know how much comfort and healing those words can bring.
    Bruce, you are never alone. I love you and I am thinking of you.

  8. Hard to know what to say as words don’t do it. I guess it is best said in the words of a ski area that has runs beyond black diamond, “O Shit!” Sorry but that is how I feel about what you and Ev are going through. Count me as a friend, I will be there as long as I am able.

    Love you both.


  9. Bruce,
    Your honesty is a gift to us all. You are entitled to “dis” the Dis ease and what it is doing to the life you love so much. Thank you for letting us in on the journey. God’s deep peace and strength to you, and to Ev right now. — Katie

  10. Brucito…

    As Gerry stated back in the drug-induced days of yesterday, “What a Long Strange Trip It’s Been!” Your writing is inspirational, thought-provoking, humbling, and wrought with reality; it embodies the essence of Star Trek’s mission statement, “To boldly go where no man has gone before” although many have and will for sure; you’ve just chosen to make it public and for that you are to be commended for your courage, , love, compassion, fear and all of the other emotions that embody the human condition.

    With each passing day, we are all one step closer to closing the chapter on this phase of life; you’ve been dealt a card that forces you to enter the express lane of reality transition and have decided to play it in a manner that helps you and many others make sense out of all those things in life that we tend to either avoid, ignore or are just completely ignorant of for a variety of reasons.

    Whine away, my friend, and be brave in sharing the reality of life in its rawness – maybe we’ll all learn something from you that will help us become a little more patient, compassionate and caring if in even the smallest way.

    With love…

    T. Factor

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