“What in the world?” I shout. “Who’s shining a flashlight in my eyes?” I look around my bedroom. It’s dark; no one’s holding a flashlight. My shoulders slump, and tears trickle down my face. It's been two weeks since the prednisone infusions. “It can’t be another relapse. No, not again, please.”
“What’s wrong?” my drowsy spouse mumbles.
“Wrong? It's my eyes. I see flashes of light. I’ll be okay. Go back to sleep.”
Myron drops off to sleep. However, I’m awake, and I’m not okay. The specter of blindness haunts me.
It's still dark, and it’s only 4:30 a.m. I close my eyes. The explosions are still in the upper right quadrant of my right eye. I check out the left eye. There are explosions, but nothing like the 4th of July fireworks in the right eye. What to do?
As if in answer to my question, my legs begin to spasm, and my organs start to quiver. I think, Okay, it’s a party. I can’t sleep anyway, so I’ll move to the kitchen. Maybe this will pass.
I gingerly swing my legs to the floor. Pushing myself upright with my hands, I test standing. My knees buckle, and I’m dizzy. Sliding to the floor, I lean against the bedframe. The pain is bearable; maybe I forgot to drink the electrolyte solution before bed. It's needed as my body no longer stores the sodium my adrenals require. I wake Myron, quietly calling his name.
Myron sits up, saying, “Diane, where are you? Are you okay?”
“I’m on the floor. I need the electrolytes. My eyes are doing the light thing again. There is pain, but not like the MS relapses or an adrenal crisis.”
“We should go to the emergency room,” he says as he walks to my side of the bed. “Are you dizzy? Nauseous?”
“Dizzy, yes, but no to the ER. I’m not sure what is happening. Sometimes, these leg spasms, quivers, and light shows come at night and slow by morning.”
“Let's go to the ER,” he replies.
Ignoring his suggestion, I slow my breathing. In turn, my racing heart calms. I change the subject, asking, “Can you email the Pullman ophthalmologist, then contact The Swedish Clinic doctors on My Chart? Write something like…having pain and light explosions, especially in my right eye, woke me up. Lasting an hour, not letting up. What should I do? ... We’ll call them in the morning.” Myron, a computer whiz, does that in minutes.
With assistance, I move to the kitchen, use the electrolyte solution, and wait for my tremors, quivering, and light show to abate. Only then do I remember I was supposed to take my blood pressure when these events occur. Next time, I promise.
It’s 5:40 a.m. now. Myron and I agree to call doctors and check on My Chart around 8:00 a.m. He heads back to bed, with my assurance that I will phone him if I need help. I feel pressure to be productive at the kitchen table, awake and with a laptop. I am taking a writing course with a story deadline and I hate being late. I start typing, but my vision is blurry, and words and letters move up and down. “Not great,” I mutter.
I dictate, describing the disrupting unpredictability of my Relapsing and Remitting Multiple Sclerosis (RRMS) and its arbitrary selection of what body part function I will lose. I delete the dictation; it’s too simplistic and medical, not complex enough to describe how my MS affects me. Ugh. I need a break and inspiration. Better vision would also be helpful, I think.
Glancing out the patio doors, I push the computer aside. The morning light glints through the trees, with sunbeams dancing on the concrete patio. The leaves have changed color and fall from the gnarly, old box elder at a fast clip. They flitter and twist as they fall, their golden yellow sparkles as the sun hits dew on their leaves.
More red leaves from the red flame maple arrive, carried in on a gentle breeze. They float above the yellow carpeted patio floor and, gently swaying, land in a pile together. Watching the leaves decorating the patio cement, I feel a relaxed smile crossing my face as I lean back in my chair. I sit, watching the leaves fall and this gnarly box elder letting them go. I close my eyes, thinking, isn’t it ironic that trees release leaves and become bare and denuded while the leaves, dying, become brilliant?
I converse with the box elder, saying, “So, tree, does letting go tug on your heartstrings as it does on mine?” I look out the patio doors and notice more bright, red leaves blowing into the patio space, adding red highlights to the leaf pattern. The floor of the patio is gorgeous, an art piece. I pause, muttering; I would love to quilt again if my eyes could sew a straight line. I could use my fabric and design a letting-go-themed quilt, duplicating what the trees and leaves just created.
My thoughts are interrupted by a loud voice and soothing, minor key music. I realize my cat, Kali, has turned on the radio again, and I tell her, “Good choice, Kali, I like this station.” An announcer introduces singer Dinah Thorp, and, with haunting music, a low voice slowly sings these lyrics:
Here are the things you can be afraid of
Getting old
Getting tired
Running out of songs….
My mouth goes slack, and suddenly everything is still. I repeat the first three lines, all I remember of the song. The lyrics touch me and resonate with how I feel now: tired and, with blurry, distorted vision, I have no song to sing, no energy to fight this crappy disease. Tears flow down my cheeks, and again, I hear an inner voice say, please do not take any more of my vision. The chiming of my cell phone grabs my attention, and I answer the call, tears still streaming from my eyes.
An 8:45 a.m. appointment for me is available with Dr. Eiseman. Myron is ready to drive, and I rush to dress. A shrill inner voice says, how can you spend three hours at home without getting dressed, having breakfast, or accomplishing anything? I realize it is a wonder to me how often I am slow and unproductive. Sighing, I acknowledge the voice, promise to listen later, and refocus on dressing.
As we head for the door, Myron asks, “Did you take your morning medicine and bring your emergency medicine?”
Fudging, I say, “Yeah, I’ll check my emergency medicine,” as I move to the kitchen dispensary. I take my morning meds, hoping Myron doesn’t notice that I forgot, and put my emergency medicine in my fanny pack. Grabbing my date book, I head for the car.
“Don’t forget your walking poles,” he says as I approach the door, holding onto the walls.
“Thanks,” I respond. Egad! Disrupt my schedule and I’m a space cadet.
Driving to the appointment, Myron leans over and rubs my thigh. I smile at the comforting touch. “Diane,” he says, “I know you forgot your meds this morning. Well, ah…. I want you to know that my job is to support and remind you. I mean, we all forget, especially when rushing. It just happens.”
I sense a hot redness rising from my neck into my face. “Myron, I am so tired of forgetting things, important things. Sometimes, I can’t deal with being this forgetful person. I want to hide it, even from you. Silly, isn’t it?”
“Silly? Maybe. I can put loud, irritating reminders on your phone. That will grab your attention.”
I roll my eyes, saying, “Might help. Remember, I was the oldest of twelve kids, so ignoring noise was my superpower. But dang, I need to remember those meds!” We both laugh as we arrive at our destination.
The in-office exams reveal I have inflamed nerves in both eyes and a blob, most likely a net of inflamed nerves, is blocking part of the retina in my left eye. Dr. Eiseman gives me prescriptions for steroid and Restasis eye drops to treat the inflammation. With her laptop screen showing my retina image, she discusses other tests needed to monitor the blob and rule out other causes of the light flashes and the blob. I ask why one eye has large flashes and the other a blob. She shrugs, smiles, and acknowledges it’s odd. She schedules tests today for neurological enzyme lab work at the hospital and prepares the required paperwork for an ultrasound and an MRI of my orbital area. She’s called my Swedish medical team for a consultation and requests I schedule bi-weekly appointments to monitor the Ocular Neuritis and the blob size. Relieved to have a plan, I rejoin Myron, and we drive to the hospital.
Myron walks with me to the lab and leaves for breakfast at the hospital cafeteria. The queue for lab work is long. I am bone tired and so weary I don’t mind waiting. Easing into a chair, I feel the tension melting from my body, knowing I can stop rushing and just sit and reflect.
Closing my eyes, I begin exercises to relax my eyes. They feel like marbles and barely move as I gently prompt them to move right and then left. I abandon the exercises. I recall images of the morning leaf display: the leaf's gentle, soothing motion, and slowly, patterns and feelings from the morning begin to coalesce.
A year ago, I had closed the hallway door to my sewing room. Afterward, walking by and seeing my fabric and machine gathering dust reminded me I was no longer a quilter. I was pissed.
This morning, the leaves falling, the letting go, brought a gentle quality to my loss. Images of the leaf-colored patio and my quilting fabrics, twisting and winding, begin erupting into color displays and quilt designs. A thought comes: If not you, then someone else will use your quilting materials. “Yes,” I mutter, “someone else.” An influx of energy flows within me as I imagine my quilting community creating with my fabric. “Thank you, trees and leaves,” I whisper.
Then those lyrics…they felt like a friend sitting with me saying, who wouldn’t feel sad? MS is a thief who robs you and leaves you feeling vulnerable and afraid of being empty. Screw that! This morning, I needed that kind of friend.
Myron is waiting when I finish the blood draw. He hugs me as we reach the car, and I lean into him and his support. As we merge onto the highway, I say, “Those loud, obnoxious phone reminders might be what I need now. I bet I can let go of my aversion to loud, obnoxious sounds and develop a hearing superpower. What do you think?”
He smiles and reaches over for my hand, offering a friendly shake. Holding his hand, I decide lying and pretending are silly, and it’s time to let go of those behaviors. I hear a voice saying, Yes, it is time. But proceed gently though, very gently and with support.
Author: Diane Baumgart