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!

24 comments:

  1. Such a courageous woman. It's a real inspiration to hear about wonderful people like your mother. It's always amazing to me when I hear just how resilient the human spirit can be for particular people when they're faced with agony and real pain in their lives.

    How wonderful that you've been able to lighten the load somwhat, not only with your love and care, but with the creation of a garden space that your Mum obviously enjoys. I often pop in to have a look at both the gardens you talk about on your blog - yours and your Mums - but don't often leave a comment. Today I just had to. Hang in there!

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  2. Sending hugs and best wishes for your mom's recovery.Lupus is insidious disease.My MIL suffered with it.Wishing you and your family all the best.

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  3. Oh Steve, there really aren't enough words. Bless you for taking such good care of your mom. And plants are tough. They'll bounce back.

    Thinking of you. . .

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  4. Steve, this is a beautiful testament to your mother's strength --- I am inspired. I'm thinking good thoughts for her. What an amazing woman.

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  5. Thank you for this post. Your mother rocks. So do you.

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  6. What a wonderful post! It is nice to hear of others who go through all the strange things we go through here at our house too. I am the chronically ill one, and I am lucky enough to be able to garden and when I am ill, I work on my garden blog. I have a rare swelling disease with its ups and downs and my husband is my caregiver. We do the best we can, when we can, and like your mom, my blooms give me so much joy they've become the best medicine ever! Right now our house is being eaten by weeds, but I don't let that get me down. I just dig sift through them to take pictures of the blooms I can find to post. Life is like that for all of us from time to time.

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  7. So sorry to hear Steve that your mom has had another close call. What an inspiring woman, and how great that you brought nature to her doorstep and even closer. Your mom has inspired millions, thank you for sharing her story with us. I remember when you posted her artwork - she is a very talented lady, and she has a very talented and caring son. Praying it all goes well.

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  8. Wonderful post Steve...I send my love and prayers to you and all the family

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  9. Steve: This is such a inspirational post! Your mom is truly a fighter and so brave! The garden you created for her surely has brought light into her life. Take care, and best wishes to your mom!

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  10. Thanks for sharing that. It must have been a tough day for both of you, though it is interesting the role gardening has played. My prayers and thoughts w/ your mother and you.

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  11. Hang in there, guy!
    Our prayers are with you and your family.
    You're a good son and your mom is lucky, lucky, lucky to have you and vice versa.
    I've spent my share of days in the emergency rooms as well...once when our son almost died of a brutal blood disease..but....be encouraged by all these wonderful garden friends you have out here.
    David/ Tropical Texana/ Houston

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  12. What a woman your Mother is!! And she is blessed to have a son like you.

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  13. Steve, I had no idea it was like this. I've been praying for your mom, and after reading this, I'll step it up. What an amazing woman. As someone who deals with chronic pain (though nothing like your mother's), it's inconceivable to me how she's done what she has for so long. WOW. And what a wonderful relationship you have with her. So precious. Bless you both.

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  14. Hello,

    Enjoyed your post. You both sound amazing.

    I'm also a garden blogger/caregiver with a separate caregiving blog, but more and more they're intertwined, as all things ultimately are, no?

    Flower power is pretty incredible for hope, healing, and solace in these situations.

    Take care!
    Megan

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  15. Very touching post. I had no idea how bad lupus can be, and I'm impressed with your mother's attitude - I doubt I would be so determined. Thank you for sharing! Your mother inspires me to be better.

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  16. Your has become a good friend. I am so blessed to have met her and thrilled i got to record the album along with her, us two being the actual patients on the album. She is a wonderful woman. This is a beautiful tribute to her.

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  17. Thank you all for your beautiful words!

    I just wrote a miniature blog post worth of individual comments to your heartfelt posts... right before all of my work disappeared. AAAAHHH!

    Anyways, I'll just sum it all up in a single big comment instead since I don't have 30 minutes to start over! :( It's been 11 days since the episode at the ER and we've had our share of adventures. One night when I was sleeping on the ICU room couch my mom woke me up because she felt something wet on her side. I put in my contacts and turned on the light to see before me... my mom COVERED IN BLOOD! Don't worry, she's okay. The blood thinners just caused her to bleed a bunch in her sleep. My mother says it "happens from time to time." Can you imagine this being so routine that you would regard it in the same way you would a mosquito bite or a scratch? I pictured her as the black knight in Monty Python and the Holy Grail insisting "I'm not dead yet! I feel HAPPY! It's but a flesh wound."

    My mother and I are so honored to read your beautiful comments, and we're even more convinced that hers is a story that needs to be told. I'm thinking of writing a book with a name along the lines of "Networking from the Intensive Care Unit." People need to know that tragedy and pain aren't roadblocks to success but just having to do things a little differently.

    Steve Asbell and Nancy Asbell

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  18. Oh Steve, you guys have been through so much! It takes a great deal of courage to share such a personal story. I now know that it's been much harder than any of us can possibly imagine. But, it's wonderful to see your mother triumph over this horrible disease. My heartfelt prayers are with you and your Mom!

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  19. Ms. Asbell --

    You must be one helluva woman, because you've raised a nurturant son. I'm just a guy on the internet you've never met, but I have a pot of various epiphytic cactus and bromeliads your son sent me, so I have a little bit of your garden in San Francisco. I just wanted to wish you well and thank you for raising such a kind man. I hope you feel better soon.

    -- Derek

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  20. Nancy,
    You are a INSPIRATION to us all! Your attitude and LOVE for life is incomparable! I am thankful everyday that our path's crossed and I am able to call you FRIEND! Lori and I continue to wish you all the best for a complete recovery. Sending HUGS from Connecticut, STAY STRONG! Keith!

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  21. Steve,

    Your Mom is an inspiration! Your dedication to her makes me feel ashamed that the my Mom's petty idiosyncrasies bother me. In regards to your comment that "The garden's layout wouldn't look too exciting to a trained landscape designer", I can tell you as a professional, the pleasure it brings your Mom is the only measure of success that need be considered. It sounds beautiful!

    I will hold you in my thoughts and prayers for a speedy and painless recovery, and for years for you to share in the future.

    All the best,

    Scott

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  22. I'm sorry I'm so late to comment; wrapped up in so many family activities, I've been less than thorough keeping up with my friends online. That aside, it's so good to hear that your mom has pulled through; you've written a thoughtful and moving tribute. Thank you for sharing.

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  23. Steve thank you for this beautiful share and love for your Mother. I will keep her, you and your family in my thoughts and prayers. We can all learn from her drive to enjoy the preciousness of life we have been given.

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  24. Your paintings are beautiful! I hope everything works out for the best! Things usually do!

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