The Garden is Dying and My Mother is Living

Last Sunday I was awoken at five in the morning to hear my mom incoherently ask for the keys to the house in the event that someone would need to take her to the hospital. I've received calls like this from her before, for a variety of other lupus related emergencies. Normally my first stop after the thirty minute drive to her house is my garden, but this time I only gave it a passing glance while I let the dog outside, and the paramedics struggled to save my mother's life in the ambulance, unknown to me.



While a team of about ten paramedics raced to bring her blood pressure up from its dangerously low levels, I spent a brief respite from the chaos scanning the garden that my mother might not ever see again. A bottlebrush tree in full bloom tried to reach beyond the tangled mess of passionflower tendrils that I have neglected to trim lately. Out of the callas that I planted following my wedding, all were suffering from drought and one simply collapsed entirely after giving up a few days too soon. Rains have since resumed and though I haven't had time to visit the garden since then, I'm sure that things are looking up by now. Somehow dead plants didn't matter so much at the time anyways. My mom is why I started a garden in the first place, so that she would have beautiful scenery to paint from her own windows even when her health wouldn't allow her to enjoy the salt marshes that inspired her to paint. I could lose the garden but not my mom.

My mother Nancy Asbell has been through so much, and yet she is the most positive person I'll ever meet. She has already had her share of terrifying and painful scenarios. I grew up accepting ambulance visits as the norm, watching my mother attempt to speak to us without success, in a jumble of incomprehensible words. Later on, a brain stem stroke nearly killed her, afterwards compromising her cognitive abilities and making simple tasks frustratingly difficult. Still she struggled through learning to walk again on unsteady and inflamed legs with a smile, choosing to look at horrific brushes with death as mere inconveniences and trials. Blood thinners were used to treat her stroke, but then worked all too well. Yet another ambulance took her to the ER with massive internal bleeding. Just a few years ago her stomach ruptured and wouldn't you know it, almost killed her yet again. She is still the very picture of positivity and shares her happiness via Facebook every day as a Lupus advocate.

Here's a rough idea of what my mom's life was like a couple of weeks ago, before the latest episode. This is a particularly bad side of lupus. My mom lives life from a powerchair with incredibly painful inflammation and swelling all over her body, especially her legs. Her abdomen is huge and swollen from the steroids she has to take. Her hair is patchy from the chemotherapy and she occasionally has spasms from her broken back, rheumatory arthritis, swollen painful legs from peripheral nueropathy, She has an ostomy bag to process her waste... one time I was interrupted from dinner with my wife to learn that my mother was covered in her own feces after her ostomy bag had failed. I helped clean her up before the nurse could finish the job. These 'inconveniences' aren't unusual for her... and she usually makes do until the nurse comes, spending the wait singing with the dog and watching Joyce Meyer. She's proud to navigate around the kitchen on her aforementioned painfully swollen legs to make dinner or empty the dishwasher, even though she has to take breaks when her broken back seizes up. She has five broken vertebrae that cannot be operated on because of how her steroids have turned what used to be muscle into mush. All of this without painkillers.

Three years ago she was strapped into a wheelchair with an ostomy bag and a catheter with a sling holding her in so she wouldn't fall out. All of the doctors told her that this would be her life from now on, but she proved them wrong. She's even taught herself to walk again, despite the incredible pain that she feels with every second on her feet, and broken back that sends jolts of immense pain down her spine. She's learned to take the garbage and recycling to the street by herself with the aid of her powerchair and while it takes some time, she even vacuums the entire house. She is a full time piano teacher, art teacher and artist, spending the majority of her day networking and promoting herself. When strokes had rendered her left thumb useless, she thought that her piano playing days were over. It didn't take long for her to learn how to improvise, learning how to play all over again. Every single thing that brings her joy is paradoxically incredibly painful, but somehow it's all still worth it.




These gloriosa lilies are miracles to my mother.


My mom says that the garden I've planted for her is her heaven. To her, those passionflowers and blood lilies are miracles that she can enjoy without pain and suffering. Gardens are a gift, especially to those who are unable to garden for themselves. The garden was always a gift to my mother. When she has difficulty seeing the hidden ginger blooms, I cut the plants down to the ground so that she can enjoy the cut flowers hiding between the leaves. I bring her gardenia flowers and passionflowers to float in tiny bowls of water so she can enjoy the fragrance. When I'm dividing the Liriope spicata, I'm sure to let her smell the earthily aromatic roots for herself even if it means wiping some dirt off the floor afterwards.

Like a cat bringing dead mice to its owner, I'm always sure to bring my mom a treefrog from the garden just so that she could marvel at its tiny translucent feet for a while before I release it at a safe distance. Every now and then my hands are uncupped to reveal something special like a baby box turtle or some other mortified little animal, but the abductions are brief and their tiny reptilian memories allow them to forget the disturbance soon after.

The garden's layout wouldn't look too exciting to a trained landscape designer, with the unbalanced plantings along the fence with nothing of interest to lure visitors beyond the patio.. at least until it's revealed that the garden is for a woman in a wheelchair who can't travel beyond the paved patio. I paved a small courtyard in front of the house that must look odd to passerby. With the exception of a small metal chair for piano students to wait on, there is no furniture to impede my mom's movement or obstruct her view of the bromeliads and palms. I have loads of neat ideas involving stained concrete paths and terraces that allow for further exploration, but with a nonexistent budget I've done everything I can to provide a panorama of greenery for her to enjoy from the windows and patio. She has no complaints.

I'm writing this on my wife's laptop in the ICU while I listen to the encouraging sound of my mother sleeping across the room. Once in the ER last week, I talked to her about the garden, just to distract her while she convulsed in pain from her broken back and dehydration. Once in the intensive care unit, things were looking up before I asked to take a look at her swollen right leg since it was causing some discomfort. What I found was a grotesquely shaped balloon animal of an appendage with a blister the size of a hot dog bun along her shin and a grayish white foot that looked like it belonged to a dead man during rigor mortis. The horrifying part was that with the exception of the blister, this was nothing unusual for her. Lupus causes painful inflammation, as well as bacterial infections such as the cellulitus that had consumed her leg in a matter of twenty four hours. I ran out in the hallway to flag down a nurse. My mom quickly became the most popular patient on the fourth floor, with doctors in diverse fields as infectious diseases and wound care weighing in on their solutions. The problem was clear. The infection was strep, and if it reached the bone she would die. It had already traveled up her thigh in a matter of hours and showed no signs of stopping.

Her leg began healing after the barrage of heavy duty antibiotics, just in time for the nephrologists to tell us that her kidneys have become damaged by the drop in blood pressure. Every tidbit of bad news delivered to my mother's puckered and swollen ears is yet another challenge to tackle. She's emerged victorious over so many other obstacles, so while hearing that painkillers are no longer an option is discouraging, she's already clenched her teeth into a grin while enduring plasmapheresis, a brain stem stroke and a broken back. She's taught herself to paint, draw, walk and live again. She's just happy to have narrowly escaped death eighteen times by now... and I'm not making that number up. Hey, that's nine lives times two!

My mother is already planning her escape and thinking of ways to build her business as a piano teacher and artist. I'm just thinking of ways to bring her garden back to life!