Fear of Failure

Before I start this week’s reflection, I would like to thank all of you for your kind words, thoughts and very considered advice after my last blog. Your willingness to walk with me as I roll along is often the best part of my day.

Last night, we watched the Tony awards. I love musical theater, and I like serious drama, so it should be no surprise that we decided to forgo Game of Thrones and Mad Men in favor of this giant, three-hour advertisement for one of the great joys of New York City. With all the revivals showcased last evening, it was a little bit surprising not to see a show by Stephen Sondheim represented. Of all Broadway composers, I think Sondheim is my favorite, and with the week that I have had, I found myself humming a tune from his show, A Little Night Music – “Every day a little death.” I know this sounds maudlin, but the song actually represents the antithesis of how I have wanted to live since my diagnosis with ALS.

Every day a little death
In the parlor, in the bed,
In the curtains, in the silver,
In the buttons, in the bread.
Every day a little sting
In the heart and in the head,
Every move and every breath
(And you hardly feel a thing)
Brings a perfect little death.

Invariably, you cannot approach ALS without thinking, at least a little bit, about death. When I was first diagnosed, I thought about my death a great deal. Then, as I seemingly worked through each ALS challenge presented, it became less and less apparent that my death would be sooner rather than later. In many ways, I would acknowledge death’s presence, but only begrudgingly and only within the larger context of dis ease. But especially in the past week, as I have dealt with a physical pain that I have not known before, as I have dealt with the emotional pain of saying goodbye to my hand function, as I have dealt with the pain of realization that there really is no going back; death has entered into my conscious space, pushing out the comfort and teaching of dis ease, replacing it with the sparkling clarity only its presence can bring.

Don’t get me wrong, I am not looking to be relieved of life just yet, but the hopeful sense that I can do this and do it well has been replaced with the realistic sense that I will do this and perhaps not with the grace and hope I expect of myself. Such realization causes me to reflect, to ponder, to become introspective on the value of my life as it is now, as it was, and as it will be. And of course when you begin to question value, then you begin to superimpose success and failure into the interpretation of life that is and was. And believe it or not, it calls into question the way you are blessed or graced or forced to die.

How do you fail at death?

In the past, I have chosen to reflect on such questions by turning them aside and asking instead, how does one fail at life? By turning the question to a life question, it seemingly delimits dying’s impact. I think it’s a good way to think – that a good death is based on a good life. But there is a small scratchy voice that asks me if I am avoiding the question entirely by turning it on its ear. After all, unless you choose to take your life, it really does seem that the choices around death are few and far between. So the question of failing at death might seem to be illogical or even silly, yet I find myself asking how that might work.

I have no way of knowing how much time is left between today and the day that I will die, but I am aware that the chances of having one year, a little over one year, a year and a half, less than two years are very good. I know this based on physical symptoms and how quickly they have come on. I know this based on what mitigating factors are available to me and how developing systems for catastrophic disease management are skewed toward profit and not cure. I know this intuitively in the depths of my gut and my soul.

There is nothing like impending death to focus your thinking.

So today, I find myself in a strange position of feeling urgency to bring certain parts of life to fruition while at the same time recognizing a lack of physical strength for the task. Here is an example. From time to time I receive lovely personal comments from friends. Sometimes these comments are soul baring, graceful dances, wisps of ether or shocks of electricity as friends and loved ones struggle in their own versions of dis ease, seeking to share a further understanding of my plight through theirs. They share thinking that perhaps I might have a broader capacity of empathy for what they experience. They share to comfort and question the humanness of living. And the energy that it takes to respond is so great, the physical needs for written response are so beyond me, that I just don’t. This is not the way that I wish to be engaged with my friends. This is not the kind of friend I wish to be. It feels like I am projecting apathy about issues that are truly troubling for my friends. It feels like I am not offering the love and care that I feel. There is urgency to respond, and fatigue in the planning.

It feels like failure.

I suppose that nothing focuses this urgency like the upcoming birth of a granddaughter. What little she may know about me will be in the stories of her parents, of Ev and of course what she discovers on her own. So I have been plotting a presence in her life, yet questioning if it is possible to achieve. For example, I’m beginning to think about digitizing photographs of our family when her dad was just a boy. I’m wondering if I could write stories around these photographs that would help her to know how special her father is through her grandfather’s eyes. Such an offering is a gift that children love. They love to hear stories about their parents when their parents were young. They love to hear of the childhood adventures lived out before their time.

But you can see how the logistics will be tricky. I cannot place pictures or slides on a scanning tray. I will need help putting them in order. I will need to write carefully. Above all, I will need to be mindful of my new granddaughter’s ability to comprehend the stories that are being told. I won’t be there to mediate the scary parts. If I cannot get to this, it will feel like failure. If I do not leave something of myself as a gift for her, it will feel like a purposeless life. It will be the little death I have tried to avoid.

In the end, I suppose it is about the fact that a good death is so tied up in the future beyond the event. It is the translation of one childhood into another, of love projected well beyond the time it was given, of DNA beyond inheritance.

And I suspect there will be no Tony for the performance, although I’m hoping for a long run.

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Just Delivery

If you are paying attention, recall that I have written of how ALS circles around, how just when a suitable strategy for dealing with the current reality emerges, how just when the day to day living becomes something routine enough to handle, how just when comfort in the new normal is almost old normal; one more piece falls away, and the circle morphs into spirals down and down. I have written of circles delivered in packages sparkling with new knowledge or laden heavy with despair, packages complete, with no room for negotiation, no space for discussion, no rejection, no acceptance. I have written about how circling back is not for the faint of heart, for even today, five days after the event, with visits and dinners with dear friends and time with family in between, with the opportunity to physically process and psychically work through the latest loss, I am still amazed at how insidious my dis ease teacher can be.

It was the smallest of things.

I just finished a phone conversation with the editor for the MDA ALS newsletter. She had suggested that an occasional sampling of this blog might be good for persons and caregivers in the ALS arena. You may or may not realize this, but I am sensitive to anything that might be perceived as me speaking for more than me. It is not my intent for this blog to represent anyone’s experience but my own, for that is the only experience for which I can claim any deep knowledge. So I was concerned that in sampling the blog, I might be seen as overstepping the boundaries that I have set for myself. Such boundaries weigh heavily, and I take them very seriously. I am also very aware that for a number of people who read this blog, these descriptions of my experiences are close enough to their own experiences that voice is given where voice might have been silent. In the end, I agreed to the sampling due to her understanding and sensitivity to my concerns. It was a nice conversation.

And then…

My phone is on a piece of Velcro that sits on the right arm of my power wheel chair. It is not the most ideal placement for a phone. Sometimes when it rings, I have great difficulty getting my arm twisted around to slide the unlocking mechanism and answer it. Other times my arm is resting over the phone so that it is totally inaccessible. Usually I try to hold the phone so that I can point the microphone toward my face, as I lack the arm strength to actually bring the phone up to my ear. All of this is to say that were you in the field of risk management, you probably would have easily predicted some minor disaster with the way that I do the phone. Five days ago, I was just weak enough after the aforementioned telephone conversation, that as I tried to place the phone back in its right arm position, it flew over the side of the chair. In my effort to keep it from falling to the floor, my right arm became wedged behind the chair’s arm.

And there I sat.

This has happened to me before, so I didn’t panic. Instead, I tried all manner of ways to get my arm back on the chair. I tried turning my upper body, grabbing the leg guides with my left hand and pulling myself forward, flipping my right arm out and forward, even quasi-fishing my hand up with the seatbelt in order to get it back on the arm of the chair. After about 10 minutes, I realized that I was actually in real trouble. My arm position meant that I could not change the position of my body, which was leaned in just the right way as to constrict my breathing, and with it being my right arm, I could not reach the controls for the chair. I could feel my hand and forearm swelling with the gravitational pooling of fluids so that my fingers would not bend, and awareness slowly bloomed into the full consciousness that I was caught, trapped, unable to breathe deeply, unable to move, unable to perform the simplest of acts.

I watched the time tick forward, one minute, five minutes, one hour. Every once in a while I thought I heard someone walking in our building, and at that point I would yell as loudly as I could, “Help, help, help, help!” I soon realized that this yelling was pointless. It was just tiring me out, and making it more difficult to yell when the time might be right.

So I waited.

An hour and one half after my arm’s tumble, I heard the UPS truck pull up, I heard the rolling door clatter open, I heard the deliveryman come into the building, and I held my breath. Would he bring the package up to our condo? Would he ring the bell and dash off as he often does? Would he come to my floor, to my side of the building? I knew that I couldn’t allow him to get away. I started yelling, and when the doorbell rang, I redoubled my efforts, yelling at the top of my voice, “Help me, help me, please open the door and help me!” And this very kind man came rushing in, “I’m here, I’m here. Tell me what to do.”

I’m sure he was puzzled that all I needed was my arm lifted back onto the chair. I’m sure it seemed like such a tiny thing to him. I’m sure he had no realization of the relief that he offered, breathing and mobility and comfort. But he did it, and I spent the rest of the day seeking some equilibrium. My hand was quite swollen and did not want to operate the wheelchair controls. My body overheated with the exertion of trying to free myself, yet once I was free, sweat evaporated into shivering, teeth rattling, frozen to the core coldness. And when Ev came home, I was so relieved to see her that I burst into tears.

Welcome to the new normal.

Today, I know that our plan, our strategy to try to get me through to the summer at the level of care I currently receive, is not going to work. I am just too helpless, and I hate it. From now on, I need to make sure that somebody is around, at least checking in, just in case. In essence I have turned a corner into a new level of ALS. It seems like just yesterday I had chosen to begin walking with a cane. It seems like just yesterday that I gave up driving. It seems like just yesterday that I accepted that I needed homecare assistance. And today, I have to accept that the assistance that I need is far more significant than the assistance that I want.

I have no words of wisdom or philosophy, no frameworks from which I can turn these cold truths, no spaces of healing or warmth or acceptance from which I can approach this new reality. It will come, at some point it will have to come. But today, I am just shaken up by how easy, how fragile, how fleeting this gift of living is.

And that is quite a package to have delivered.

The Bargain

It has been almost 6 months since I received my diagnosis of ALS, and what a ride that has been. After the initial smackdown of the diagnosis, the ups and downs of medical flurry, and settling in to a dis ease routine, this last 6 months has been quite an experience. One of the most interesting developments for me is what I have come to call the hope bargain. It is the kind of thing that everyone does, but I have to admit that my version is just a little embarrassing. Part über-reality, part fantastic dream, the hope bargain for me is a strange hybrid experience. This past three weeks, as I have reengaged with the medical world–Mayo at the beginning of the month, and this week with the research clinic in the Twin Cities–the hope bargain is front and center for my consciousness.

Everyone has their little hope bargains. In my old normal, I’d hope for a green light and bargain that I’d never be in the intersection when it turned red again (a pretty hopeless Minnesotan thing to say by the way). I’d note that my bike needed work, hoping I could put it off one more ride by bargaining—“Please just let me get this ride done and then I’ll fix it.” I’ll bet you have hope bargains in your own lives—everything from how to lower your cholesterol, to hoping that the extra 15 minutes of cooking didn’t ruin the meal. I think it is human, and it raises questions about why we think it does any good and with whom do we think we are bargaining anyway. For the most part, it has always struck me as a pretty harmless, maybe even healthy thing to do. It is kind of like the Jeff Goldblum line from The Big Chill, “Don’t knock rationalization. Where would we be without it?” I’ve just assumed that hope bargains were an everyday part of the human experience.

Now for me, the hope bargain has changed a bit. With all the effort I make to live in the moment, to accept the things I cannot change, to be as I am to be, with all that work, I have an intense hope bargain going on. Based in a past life that reminds me of its power every single day, and looking forward to a future that I cannot help but want, it is the hope that somehow, some way, this dis ease thing can be slowed or stopped. I hope, I bargain, and it goes something like this.

“I can handle this if it’s just taking my legs. Please, I’ll put up with anything if it is only my legs.” It’s a quasi-whiny version of Cat Stevens old song, “Moon Shadow”—“and if I ever lose my legs, I won’t moan and I won’t beg.” Well, I’m moanin’ and beggin, at least in this little prayer. Or maybe it is something like, “I promise to laugh more and cry less, if only I don’t have to do a vent in this progression.” You get the picture. It is perseverance on a theme of Kübler-Ross, only without the denial or the acceptance. While it is a little embarrassing to admit I do this, I know that these hope bargains have been more than helpful to me. They have helped me to get my head around a precious past and a scary future without needing to be overwhelmed by either. Believe it or not, they have helped me center myself and to feel the spiritual strength I need to face the issue of the day, whether it be dis ease’s relationship with work, home, or something else. In some ways, the very act of the hope bargain is the greatest hope and biggest bargain of them all.

I have two things I want to share that have really brought the hope bargain home to me in the past three weeks. First, it is the wisdom of the Mayo folks and how they worked on me to accept riding a scooter. Second, it is the fact that I reconnected with the great research clinic folks in the Twin Cities, and I am poised to start a drug trial. I’ll start with Mayo wisdom.

My last visit to Mayo left me energized. I’ve complained in the past about feeling like I was a collection of symptoms when I go to clinic, and there was some of that in this visit. But I had decided to get through that part, and I am glad I did. The clinic staff clearly had an agenda: “OK, so ALS isn’t your first choice, but given that you have it, what do you want to be able to do?” What a hopeful question–my answer, “I want to work. I love my job. As long as my colleagues feel I am advancing the cause, I want to be there.” They noted that I talked consistently about conserving energy in an environment that needs energy projected. “How might you project energy?” they asked. “I need to get out more,” I answered. “Would you consider a scooter?” My reply, “I don’t want a scooter.” With humor, gentility, a little tough-love and perseverance, they wore down my stubborn hopelessness, installed a little hope and got me to accept a bargain–if I want to work writ large, I have to be more mobile. “We can arrange for a scooter for you through the ALS Association.” As difficult as it is for me to accept the diminution that a scooter brings, I have to say that it is a great way to conserve and project energy. It is a bargain that presents hope for work. Suffice it to say, that I am learning to do Management/Leadership By Scooting Around. It is a sea change that saves energy, and has freed my sense of place.

My second hope bargain is bigger than a scooter, for this week, I enter the international drug trial for dexpramipexole through the Berman Center. I cannot tell you how hopeful I am about this. First, it is finally an opportunity to DO something, to say directly to my ALS, “you might not get everything your way after all.” The Phase II trials have been very encouraging, and even though, as the Mayo’s very wise and kind Dr. Jones reminded me, there is a long history of hopeful Phase II’s that ALS has crushed in Phase III, somehow this one seems different to me. Yes the trial is double-blind. Yes it is placebo controlled. But I’m in, and even if I get the placebo, I’ve decided to hope in the placebo effect. The bright and caring Dr. Tiryaki took me through a lot of the research numbers yesterday, and I think that even she, with her very realistic look on ALS, is hoping that this time in spite of everything, we might double the number of drugs available to slow down or manage this dis ease. I think we are all in a bit of a hope bargain on this one.

So I want you to know, that I have this hope bargain. I’m not dead yet—far from it. I have hopes. I bargain those hopes, sometimes meaningfully and sometimes not so much. Through the luck of geography that allows me to access the medical expertise of an entire state, and the discipline of naming the bargains and keeping alive the hopes, I see a path, probably with wheels, that is keeping me keeping on.

In the words of Pete Townsend, “I call that a bargain, the best I ever had.”