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.”