My Simple Vision

The leaves that had fallen felt crisp and brittle under the rubber soles of my slide-on sneakers, especially despite such frequent rain in recent days. Though the rubber was fairly thick, I found that every pebble or small stone in the broken-up asphalt-covered parking lot was still evident right through the soles of the new Adidas sneakers I’d recently purchased at the recommendations of family and friends. I mean, it certainly wasn’t painful, but it was the first mental note I had made of a heightened tactile sensation. The breeze was welcome, crisp, cool, and smelled of autumn, maybe more noticeable after spending so much time indoors, though Mike, who held my hand tightly, and my left arm more firmly under his right, had an especially sweaty palm and seemed to radiate his typical body heat. It was quite cold for late September, even in New York. I thought back to the days in high school when we sweat through our clothes in global history the first month of my senior year. My brain started to churn through thoughts as it often does, trying to come up with possible scientific explanations for cooler weather in the presence of global warming, coming up with quite a few random hypotheses, limited by my 25-year-old middle-school Earth Science knowledge base, as we approached the car.

“Almost there” he reassured me and came around with me to the passenger side to open my door and help me inside. I felt so easily winded after such a short distance and wondered if my short time away from home had truly left me this deconditioned and fatigued.

During the drive home, I was glad for the low volume of the satellite radio that broke what would otherwise have been silence. Classic rock shifted from overplayed Black Sabbath and Tom Petty tunes until my eyes started feeling heavy and I had the urge to recline the seat and sleep. We had so much to talk about yet also really needed that time alone in quiet stillness without too much thought or emotionally charged conversations; Mindlessness was a phenomenal remedy for fear and sadness after what we had been through these past ten days.

Unclear of how far away we still were, and dozing between stop-lights and accelerations, I felt too-cool air coming from the car vents and reached out in front of me to shift them away from my seat, near-shivering though it was a mild 60-degree day.

The soft leather of the car seat was cool to the touch, a pattern of smooth leather strips, with a distinct roughness that ran along the trim and piping. As we stopped more frequently and briefly in a rhythm that mimicked local neighborhood driving and stop-signs, as though by some odd sixth sense, I forced myself awake anticipating a nearness to home.

Though I knew it was a gesture of love and protection, when we arrived home, he backed the car in the driveway as though to have the passenger seat closest to the entryway and told me to wait while he came around to open my door. Having been used to decades of hyper-independence, his chivalrous gesture of protection immediately affected my mood, and left me stubbornly thinking I can open my own damn door – It’s not like I’m paralyzed or anything.

Hands still clammy, he held me just the same as the parking lot on the way inside the house and as I nearly tripped, misjudging my foot clearance at the front door, my mood rapidly shifted to gratitude and appreciation.

Though only about six in the evening, someone nearby had a fire going and the smell was the perfect reminder of summer turning to fall. It was crinkled leaves and slightly damp firewood. I could have sworn I picked up on cinnamon and clove but it was more an olfactory hallucination, I was pretty sure. I had just learned about those. The seasonal memory-triggering scents trailed into the house behind us where we were quickly met with another familiar scent, the potent scent of my favorite French onion soup in the crock-pot. Based on the smells alone, it was clear this was my mother-in-law’s classic recipe at the point in the cooking time just before it was ready to dole out into soup crocks and bake with provolone and parmesan cheese on top. I was impressed with my ability to single out the Vidalia and shallots by their distinct aromas, and attributed this to the time I spent missing homemade food this past week. Like a blindfolded toddler, I was lead to the living room couch with two hands, directed to the corner of the microfiber sectional, positioned with pillows and a lap blanket, and Mike left the room to finish our dinner prep. Though this was one of my favorite meals, it wasn’t often something we served for dinner due to our children’s aversion to how “slimy” cooked onions can be.

Every time I shifted my weight, repositioned, lifted and reoriented the blanket, I was met from the kitchen with “where are you going?” and “what do you need?” I provided continuous and adamant reassurance that I would ask for something if I needed it, especially for help and he muffled “yeah right” under his breath, to which we both chuckled. It had broken the ice after an emotionally challenging few days and the near complete silence that filled the space between us since the parking lot two hours before.

The truth was, after fifteen years of marriage and nearly twenty years together, he knew me well. I had a hard time asking for help, and was stubborn as hell when it came to the admission that I couldn’t pull something off alone. I thought back to the time I filled his F-150 truck bed with 400 pounds of mulch while he was at work and tried to finish the front and back flower-beds before his early 4PM arrival home from work that day. After his complaints about my inability to wait for him or ask for help, I insisted on finishing the project alone, and at 6:30 that night, finally came in to wash up and stubbornly insisted on making chicken Francese from scratch, instead of ordering take out, because I can do it.

I hadn’t noticed or taken the time to appreciate, but another reminiscent scent had hit me again, once the crocks were in the oven. Mike had taken the time to light my favorite candle, Balsam and Pine, that I keep lighting year-round despite the argument from some that it’s winter-only strictly seasonal scent.

I acknowledged his thoughtfulness and thanked him from my spot on the couch. My mind had spent the entire past week wandering and wondering, and though I was grateful my kids were enjoying themselves on a family weekend get-away, part of me missed them and wished they were home especially today. It’s not your children’s job to provide you emotional support.

Though he was easily 40-feet away, as though he sensed that my mind started to wander, he called out again from the kitchen “Do you want me to put something on the tel….” He stopped. “How about some music or one of those audiobooks you like?”

I remember thanking him profusely and denying his offer, making sure he knew how grateful I was for the support, the help, the dinner, the candle and all his thoughtful comfort measures. I decided to wait until after dinner to talk about things we needed to address, not that it had to be done just now, but there were conversations to be had, and maybe some time without the kids around was a keen time to start.

I ate very carefully, and cautiously, continuously checking the rim of the bowl and the sides of the spoon, my left hand continuously holding the bowl, as not to make too much of a mess. While I offered to do what I could in the clean-up and was turned down as I knew I would be, I sneakily made my way to the bathroom down the hall without Mike’s physical assistance. I admit there was a degree of furniture-walking and reaching for landmarks to combat the day’s fatigue and weakness, but I safely made it and my spatial awareness based on memory alone combined with years spent in this house must have also helped me through. Weeks prior I would vacuum every cranny. I knew where the dog-hair would hide, and the places dust could collect in 12 hours if you let it go more than a day without a wipe-down. While I knew I would soon have to admit to needing more assistance, I also wanted to prove that I was capable and would only continue to get stronger and more capable as I learned my new restrictions and limitations, and strengthened the senses that remain, what the doctors would eventually call my “new normal”.

Luckily, I was safe and effective enough that Mike hadn’t noticed my attempt to take myself down the hall without help, at least not right away. A meaningless snafu on my way back to the living room left teardrops collecting in the corners, eventually filling and falling from failing eyes. So simple. So stupid. So painful. While washing my hands, I reached for the soap dispenser. It had been a recent online find and I’d fallen in love with size, shape, and simplicity, so I had gone and purchased two. As I scrubbed my hands under the warm water, I noticed that the soap had a greasy, somewhat slimy consistency. The smell was all wrong. Did someone replace them while I was away? It felt like I was trying to wash with and rinse off solidified coconut oil. I reached back out for the pump to wash again, and again, this soap was so difficult to rinse away. I accidentally used the lotion dispenser. I wasn’t preoccupied, confused, and from having filled them myself a dozen times before, I knew the lotion pump was filled with lilac scented white pearlescent hand cream and the other with a clear and gelatinous citrus scented antibacterial soap.

As though it had not been continuously running through my mind since the test results days prior, as though I was just finding out in that moment, as though the month before full of transient symptoms with ER visits, fluctuations from comfort to concern, Doctors’ offices, imaging, and lab testing hadn’t just happened, as though I hadn’t lost my ability to drive, it was my use of the wrong dispenser that put me over the edge.

Just as I had arrived to the bathroom in the first place, I used walls and furniture to find my way back to the corner of the sectional. I reached for and missed multiple times in search of the lap blanket that I knew I had left nearby. I repositioned my head and eyes to try and obtain a clearer view, and finally decided to wait and sit, head back, legs tucked underneath me, without it. I quietly wept, quickly wiping tears, and no longer hearing footsteps or water, was unclear of where Mike had gone – if he was close and watching all of this transpire, or had left the room himself to use the bathroom, change his clothes.

I breathed in deeply to calm myself, taking in all that I could - the strong lingering scent of onion, likely to remain in the house for days as it always did after making this soup; the Balsam Scented candle on the bookshelves behind me, gradually creating a stronger aromata where it sat as it burned down and more and more wax became liquified. Just as I had in the car, I rubbed my hands on the couch to tell where one cushion ended and another began, and propped up two pillows beside me, recalling the one with the fringe had been navy and white with a rust-colored fall - themed fringe and embroidered fall leaves on the front, and the larger rectangular also Navy and white, but in gingham check with a brick red pick-up truck sewn on and a country-style font announcing “Happy Fall, Ya’ll”. I felt the soft beige microfiber on the sides of my feet and remembered how pleased I had been with how these loud pillows looked on our neutral furniture when I’d purchased them the year prior and packed them lovingly in bubble wrap knowing my usual method of newspaper would stain the white fabric with ink.

Just three short weeks prior, as I tended to do early every September before my boys started school, I had turned over the home décor to autumn. Put away the sunshine and watermelon-colored accents, pineapple-covered dishcloths, beach themed knick-knacks from the entry way shelving. I had always associated this time of the year with a New Year of sorts, a fresh start, ever since childhood. This was the start of school – new sharp tipped pencils and neat clean-edged folders of loose-leaf and crisp empty notebooks, a blank planner waiting to be filled with assignments and aspirations, always starting off strong and slacking as the year came to a close by May and June.

I thought back - how at about this time last year, and for years prior, always during a random weekday as October started, I would have left work an hour or two early, and would have added Halloween to the fall décor to surprise the kids. They’d come home after school or practice to pumpkins and fake spider-webs and scarecrows, black gauze, purple lights, skull candles, cute homemade ghosts made of cheesecloth, and fake potion bottles. They were getting older and still, they always seemed to love it. My ancient tacky plastic candy-corn with 1980s bulb light-up to line the driveway and walk…

These silly pillows reminded me that this year, and the years to follow were going to be different. My first three hours back home started to remind me rather quickly and harshly that I was now legally blind, with a confirmed loss of central vision, and likely by this time next year, would have experienced a complete and irreversible one-hundred percent bilateral vision loss.

Without pun intended, things in this life have rapidly started to look different. They will continue to do so until they fade to black.

As I meditated, over-thought, considered, validated and rationalized while lying in bed that night, though I know we will struggle now and eventually get better acclimated to this “new normal,” we must also remember to be thankful. For Mike’s clammy hand that I feel holding mine, the textures easily recognized by my skin, the breeze, the pillows, strong hugs, a favorite blanket, the scents: flowers, candles, bonfires, fallen leaves, a crock-pot dinner. For retaining the ability to taste new and familiar foods, in both sustenance and for pleasure. I am thankful for all the sounds – familiar music on a car ride home, a friend’s stories, my husband’s voice full of reassurance, my sister’s protection, my loved ones’ patience describing the things I used to visually enjoy – flowers and nature, animals, and colors, and especially tonight, having had the gift of sight before, the mental image of my children's’ happiness, as I heard my boys’ laughter on the phone when they called to say goodnight.