understanding pain

Pain is good for you, I keep wanting to say to Mom, or as my brother says--no pain, no gain. For Mom, however, this is a foreign idea--her world does not include the concept of physical exertion equals pain. Unlike my brother and I, Mom did not/does not exercise to the point of feeling her muscles talk back to her. So, I can't tell how much of Mom's pain is "real" pain, as in "I can't stand this much longer" or "good"pain, as in "I just used my body and now it's sore." In PT, this is an issue. As Beverly stretches out Mom's dorsal and gastroc muscles in her legs, Mom's face is working overtime, grimacing, contorting in pain. I have no doubt that these stretches hurt, but I can't seem to communicate to Mom the idea that this is the kind of pain one must endure because, in the end, it is "good for her." Without it, she will enver regain use of her legs. Instead, Mom moans and screams, and acts like I am single-handedly and sadistically imposing this torture on her. I keep looking around, wondering if anybody else in the room is as uncomfortable as me.

When we get to the bicycle machine, Beverly straps in Mom's leaden feet and legs. The machine is going to do most of the work--Mom is just along for the ride or for as much effort as she can give those pedals. I watch the pedals spin and Mom's feet following along; its set for 11 MPH and Mom is adding an additional 1 MPH, not enough to register in the machine's calculations but enough to indicate that maybe Mom's doing something, that one or both of those legs of hers have something still there, even if it's not much. When I ask her for a report, Mom says "this is easy"--I don't have the heart to tell her that she's barely spinning the pedals.

Finally we get to the PENS machine, which Beverly hooks up to Mom's legs so it can pulse while Mom is spinning the pedals of her bike. Electrical impulses course through Mom's muscles,. trying to fire and stimulate her deadened legs. Mom says she can feel the sputtering pulse--Beverley and I both say together--"good...this means your legs are working." What we don't say, is that there's a long ways between feeling the electrical sparks in her legs and actually moving her legs on her own. A very long ways. I try not to think about this.

When we get back to her room, HC201, Lorna (Mom's caregiver) and I just sit there on the edge of the bed, waiting for Mom's pain to come on, as it has on other days. We sit and Mom sits in her wheelchair and we all consider where we have just been. Mom croaks out--"I don't...I don't want..." leaving Lorna and me to fill in the blanks. It's not hard, as we both know how difficult this is for Mom--that she doesn't want to go back to PT the next day and the one after, even though she will, because I won't let it be otherwise.

We sit like this for a while, and I feel my eyes drooping to a shut position like Mom's are--like sleep is inevitable and there is nothing I can do but give in. I feel the back of my head pound, the sore little spot at the top of my cervical spine that generates headache after headache. I reach behind my head to dig the tips of my fingers into the lip below my skull, hoping that pressure here will stem the migraine. It doesn't. I say nothing and just sit with my pain, like Mom sits with hers.

When the ST, Lisa, comes for her visit, Mom is deep into her drowsy mode and it take a lot of work to get her awake and fully present. Lisa tells Mom she is going to ask her some questions and wonders if Mom would mind answering. Mom says, "okay," so Lisa begins.

"Can you say these words back to me?" Lisa asks--"rose, sweater, hamburger."

Silence. Mom's stare is fixed on her knees and she is not answering Lisa. Lisa asks again--

"Can you say these things back to me?"

Silence and more silence, and when Mom doesn't respond at all, Lisa take a different tact--

"Repeat these after me will you Dorin? Rose?"

Mom finally looks up with the word "rose" and her lips begin to form the "r" of her flower. Finally her mouth sputter with something that sounds like "rose" but is actually just half of the word--"ro...o..." But this is good enough for Lisa. She looks relieved as she moves on to "sweater"--

"Can you repeat 'sweater' after me?"

Silence, and I can't tell if Mom is thinking about saying this word or not or whether she is back to her semi-conscious sleep-mode. As nothing comes out of her mouth, she must be dosing, I conclude.

"Dorin," Lisa repeats. "Dorin can you hear me"?

Mom jumps at the sound of Lisa's voice, and it's clear that she's been gone for several seconds, gone to the world of sleep where pain doesn't register.

When Mom can't repeat the two other words--"sweater" and "hamburger," Lisa tries to take her through them syllable by syllable. It's clear Mom is not comprehending. Finally, Lisa moves on to ask other biographical questions. Things like--"what is your name"..."what education do you have?" Mom struggles to tell Lisa about her life-story, explaining in one-word spurts about her degree with honors from the University of Washington and then her "extra thing"--the closest Mom can get to referring to her Master's Degree in "Whole Systems Thinking" from Antioch College.

"Do you want to tell me about your 'extra thing?'" Lisa asks Mom, hoping to draw Mom into a real conversation rather than the sporadic one word offerings Mom has made so far.

"What school did you go to, what degree did you get?"

Mom is either confused by these questions or can't get the words out, as she stumbles with--"don't know...Anti...no longer...it's like...wonderful fellow...really liked him...can't say...what the...we read a lot of..."

To Lisa none of this makes sense. To me, I see the arc of a life, a biography I know almost as well as my own. I know that Mom got her degree in 1989 and that she read everything that Gregory Bateson wrote and that she was a star pupil and that she loved her professor there at Antioch College and that he loved her too.

When Lisa asks her what she did with her degree, Mom is stumped again, her language reverting into a string of disconnected nouns and pronouns. When Mom says finally that she doesn't know, I am ready to step in--tell Lisa about the children's grant Mom worked on and how she was going to use her degree to promote the well-being of indigent children in King County. But before I can decide whether to interrupt and say these things or not, Mom comes out with a startlingly clear statement, something that rewrites her history and mine.

"But at about that time my husband died and I had three children to look after, so I had didn't have time for a career."

I look at her in disbelief and then in some-fledgling-kind-of-anger, as I can't process what she has just said--my father died ten years before Mom got her Master's and by that time all of her children were long since grown up: my eldest brother had run off with his religion and his schizophrenic wife some ten years prior and hadn't been heard from since; my second oldest brother had been married for nearly ten years and was living in self-imposed isolation in Darrington; I had migrated to Eastern Washington and was unhappily practicing law. None of us were there, none of us took Mom's career from her.

Neither Lisa nor I say anything for a second or two--Lisa's taking notes and I am still silently marooned in my surprise. Then Lisa smoothly moves on to other more mundane questions like--"do you know where you are"..."do you know what day and year it is"..."do you know what day of the week it is?" Some of these Mom can answer, some she can't.

When Lisa gets to her finale--"Can you tell me the names of the objects I told you at the beginning of our conversation?" Mom is stumped. She can't name a single one of the three. I can remember just one--"the rose"--but I don't say a thing about this.

Turns out Mom has "expressive aphasia" Lisa reports to me in the hallway, outside of earshot of Mom. Knowledge and ideas are still there in Mom's head but she just can't get them to migrate from her brain to her lips. All of her sentences begin so hopefully but then peter out into silence as her mouth is unable to grab a hold of the substance of what she wants to say. Every now and then, there's an exception--a sentence that migrates its way intact to sound, in spite of Mom's roadblocks. And every now and then, a fabrication emerges--like Mom's children as her excuse for never having pursued a career of her own--something so incredible it cannot have happened, but for in the muddle of Mom's aphasic mind. In these moments, a person like myself is stopped cold, wondering what part of Mom's subconscious self needed that untruth to be easy with herself, to be okay with the choices she made.

As I drive my way through the afternoon rush hour, nursing my headache with a pain med and a bottle of diet Coke, I feel myself as speechless as Mom. Unlike the muscle spasms Mom howled over earlier that day with her PT, Mom's aphasia is a more subtle kind of pain, the kind that defies even articulation. What must it be like to have speech taken from you? How might it feel to live in a wordless world of your own making, where the truth and the untruth exist comfortably side-by-side?

Deeply, a mother's daughter
--this is alifewithmom--