I’m three days into taking a new seizure medication, and Martin, my husband, is staying home with me because he believes this one could be the answer to our prayers. I’ve tried 5 other medications and responded very badly to each. The neurologist says this is my last, best hope. If it works, I could lead a fairly normal life. I could drive, work a regular job, maybe even have children. We’ve heard this before so I’m skeptical, taking it an hour at a time, but Martin stays positive. Every day after lunch he approaches me with his notebook and ask the prescribed medical questions. Today he seems particularly cheery, coming into the bedroom with pen in hand.
“Rash?” He asks.
“No,” I answer.
He smiles and checks them each off.
“Day three and no major incidents. This is the one, sweetheart!” he says leaning over, kissing me.
I force a smile and nod my head.
We’ve been at this for too many years for me to relax and let myself even hope. I’ve wanted to give up many times over the years, but Martin has kept me going. He’s researched epilepsy and the brain to the point of obsession and has taken me to every brain clinic, and specialist possible. We’ve gone into debt trying new approaches to taming the brain, traveling to conferences and clinics across the country. We’ve tried the best of AMA medicine and the best of holistic medicine with varying and always temporary results. It’s been a very long, and frustrating road, and so I try, for him more than myself, to be positive.
“Yes,” I say, “This could be the one, Martin.”
He lays down on the bed beside me and stretches out his arm. I snuggle in, my head in its place beneath his chin.
“It’s going to be OK this time,” he says giving me a little squeeze. “You deserve it.”
His voice is warm and soft, and I can feel his body relaxing as I lay against him. He’s very tired. I think of all the years he has stood by me, stood with me, through terrible chronic pain and seizures and I think, You deserve this to work as much as me.
The past year has been harder than all the others. He’s been with me for all the years I lived with chronic pain and disability, and he’s seen me defy my doctor’s prognosis and heal from it. Now, he’s put his whole attention on helping me heal the epilepsy as well. He’s been working hours of overtime to make enough money to pay for all the treatments, and caretakers we need when my brain flares up, and I have a run of seizures. I’ve been in a seizure flare up for three months now, so he never knows what he’s coming home to. There are stresses with family, and we’ve had to move several times. The commute to work is way too far, and he doesn’t like his job, but it has great health benefits. I can feel all of this held tight in his body. I place my hand on his chest.
“Yes,” I say again, “This could be the turning point.”
He shifts himself, wrapping his other arm around me. I lay very still, listening to his breathing and feeling the warmth of his arms holding me, as he drifts off to sleep.
There is nothing I can compare to the comfort and kindness of this moment. My head moving slightly with his chest as he breathes, his arms still enfolding me even as he dreams. I haven’t always had Martin in my life. Memories arise of the years and years that I faced illness all alone, trying to be normal, trying to fit in, trying to accomplish the things my body could no longer achieve. Remembering makes this moment all the more precious. So, for him, I try to imagine that everything is actually going to be alright.
I don’t know how long has passed, but as I awaken I hear Martin’s voice, but it’s strained.
“It’s OK,” he’s saying, “I’m here, I’m with you. This will pass.” I hear the words, but don’t see him. There is color everywhere, bright and beautiful colors streaming all around me.
“I’m OK,” I try to say, but the sound is jumbled and I hear someone moaning. I hear someone gasping for breath and whimpering. Some time passes before I understand that it’s me.
A few more minutes and then I can see him, but he’s flooded with light as well, his features blending and blurring into streaks of blue.
“You’re having a seizure,” he’s saying, “your body’s stopped shaking it will be over soon.”
He’s worried, I can feel it somehow in my own body, a tight ball of fear seems to be moving from him to me, and the thought arises that something has gone wrong. I reach out and touch him and a sensation of sour disappointment floods through me.
But I’m not at all worried.
The seizures give my brain a familiar sense of peace, calm and rightness, with everything. These good feelings have arisen within me, and I smile. I can feel my dog, Shasta, press her nose into the palm of my hand, I just can’t tell which one. Left and right seem not to exist anymore, there is only me, big and full and made of light.
The lady in blue—my seizure vision—is beside me, smiling, telling me somehow that everything is going to be alright. And then I shut my eyes and drift.
When I wake up this time, I have a sharp pain in my head and my skin is burning all over my body. Martin sits me up and makes me drink something. He says we have to go to the hospital. I feel very sick, and see that I have a bright red rash covering my cheeks and chest.
When we arrive at the ER and the doctor takes me off the medication. Its only been a few days so the withdrawal shouldn’t be too bad. I may have more seizures and feelings of depression. I shouldn’t be left alone. As the doctor hands him a long and familiar list of things to watch for I see that Martin’s hands are shaking slightly. He stares down at the paper blankly, his face hard and drawn. I put my hand on his shoulder, but he doesn’t seem to notice.
We drive home in silence. It’s late afternoon, in the fall, and the sun is low in the sky making the red and gold leaves shimmer as we drive beneath the trees. I close my eyes and lean my head against the glass letting the warm rays of sunlight touch my forehead for comfort.
When we pull into the drive and turn off the car, Martin turns to me, “Are you OK to go in by yourself?” he asks.
I nod and open the door.
“I’ll be there in a few minutes,” he says.
I nod again and step out of the car, but then I hesitate and turn back to him. He’s gripping the steering wheel very hard and I can see the tension in his jaw.
“Are you OK?” I ask.
He shows me a closed-mouth smile.
“I’m fine, I’ll be right in,” he answers.
I stand there a moment in the brisk air, then shut the door and walk into the house. My dog is there to greet me. I get down on my knees as Shasta comes to me, her whole body wagging. I pull her to me, her soft, black coat pressing up against my cheek, as I wrap my arms around her aliveness.
“It’s OK,” I say softly, and then again, “I’m OK, good girl.”
She calms and sits, her brown eyes looking up into mine. I kiss her silky head.
“Thank you,” I whisper.
Slowly, I get to my feet and take off my coat. There’s a light on in the living room, but the entry is growing dim as the sun is setting. I turn for a moment, back to the door peering through the glass at the changing light. I can still see Martin sitting out in the car. Pressing my nose to the glass I see he’s leaning over, his forehead on the steering wheel, his shoulder’s shaking.
I’ve seen Martin cry, the way most men cry; small tears quickly pinched away with fingertips and a change of subject. What I’ve never seen, not in all the years I’ve shared my life with him, is anything like this.
I step away from the door and go into the kitchen to make tea. Sitting down at the table with my mug of chamomile, I ignore the sharp pain in my head and nausea. I’m good at ignoring body sensations and unpleasantries. The images of light and the blue lady begin to flash here and there, but I shut my eyes and turn away from them with my mind.
This is hurting my best friend, I whisper in prayer to the unseen world. My husband can’t do this anymore. This is too much. Help us!
I hear the door and Martin comes in. Shasta greets him. I offer him tea, but he shakes his head.
“I’ll make you something to eat,” he says. “You’ll feel better after you eat. You always do.”
“Yes,” I say, “Eating will help.”
I don’t know what else to say. I don’t know how to help him.
He nods his head, turning to the stove where he’ll make me the dry toast and eggs he’s made a hundred times before. Shasta lays down at my feet as I sip my tea and let love look like this.