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“8 Powerful Insights My Mom’s Stroke Has Given Me”, Thrive Global

Jan 14 2022

“8 Powerful Insights My Mom’s Stroke Has Given Me”, Thrive Global

This article was published on Thrive Global, here.

Her stroke, my lessons.

By Sadhvi Bhagawati Saraswati, President, Divine Shakti Foundation

On March 13, 2021, the day before I turned 50, my mom had a stroke, a massive cerebral hemorrhage in her right temporal, parietal and occipital lobe. Three years earlier she had a stroke in her left occipital and temporal lobe from which she’d recovered completely. The stroke of 2018 was also severe, and the surgeon removed an ounce of blood from her brain, but while it debilitated her significantly, her self-awareness remained intact. She knew “I’ve had a stroke and I need to get better.”

My mom has always been a fighter. Life was an exciting (sometimes) battle (always) for her.  Whether it was neighbors whose dogs barked too loudly, a rental car clerk who had the audacity to say that the car would be available only after a wait of 30 minutes, my high-school administration who wouldn’t refund her for the outrageous “free” periods in my schedule, or a young non-English speaking Latino immigrant mom started tutoring when he was in elementary school and whom everyone said didn’t stand a chance, whatever the circumstance mom loved a good fight.

“Okay, sure, I understand” was not in her vocabulary. She fought and she nearly always won.  When she was diagnosed with Grave’s disease in her late 40’s she flew to Pune, India (I was still in college – years away from my transformational experience on the banks of the sacred Ganga River) where she studied with BKS Iyengar who gave her an intense several hour-a-day yoga practice to restore the health of her thyroid.  She avoided an operation and a lifetime of thyroid medications through yoga. A few years later when she was diagnosed with virulent breast cancer, she fought back tenaciously, with everything that Western medicine and Eastern medicine could offer. By the time her second stroke hit this past March, she was nearly twenty-five years in remission from the cancer without any recurrences or metastases.  The young Latino student was now graduating high school with honors and had been admitted to college.   She was batting a thousand.

This stroke, however, wiped away not only her eyesight and ease of finding the right word, but it also destroyed her self-awareness.   The parts of her brain that made her know “this is who I am” and that place the present-moment on a continuum of past and future, filled with blood, swelled up and were forever damaged. So, after emerging from her several-hour brain surgery, she never had any awareness that “I’ve had a stroke” and thus neither a willingness to participate in rehab nor a comprehension of where she was and why she was there.

I flew back to Los Angeles from India on the 31st of March, two and a half weeks after her stroke, as my dad and I realized that this time would NOT be like last time and we needed all hands on deck.

After spending seven months in the United States, the longest I’ve been there since moving to India twenty-five years ago, and after the doctors told us conclusively there was nothing more they could do for her, I brought my mom back home to India with me.

Over the last almost ten months since mom’s stroke I have learned some very deep life lessons:

1. Sometimes there is no solution, and maybe not even a problem.  When I landed in Los Angeles on April 1st, I arrived as “the fixer.” I was going to fix this situation, bring mom back to her senses, convince her to participate in rehab and get her on the road to recovery. I bought a return to ticket to India for the 16th of April, confident that within two weeks I’d have the situation under control and between my dad and the rehab specialists, mom would be on her way to a good recovery.

In those days she was psychotic. She saw people who were not there: “Get everyone OUT, O-U-T out!!!!” she’d scream.

“Mom, there’s no one here. It’s just me.”

“I said O-U-T out! Everyone out!”  she’d continue to yell, tears filling her eyes as no one seemed able to fulfill her wishes or follow her commands.

She held conversations with people who were not in the room, sometimes speaking directly to them and sometimes dictating messages into her phone or iPad that were off and not even in her hands.   The neurologists tried a wide variety of antipsychotics – alone, in combination. Nothing worked.

I spent all day every day with her, first in the hospital and then eventually in the memory-care facility we moved her to, trying desperately to love her back to health.  But she was not even aware there was anything wrong with her. The problems, as far as she was concerned, were the wall that wouldn’t move out of the way, the people who wouldn’t leave the room or get ready fast enough to catch the train (what train?) and the general incompetence of anyone and everyone around her.  I talked to every neurologist whom I, and all my friends, knew.  From brain-scan experts to neural-health experts to neurosurgeons to vascular neurologists….  Each time I was introduced to a new expert I was convinced that he/she was the answer we’d been looking for. Now, finally, someone would tell us how to bring my mom back.

I am a do-er, a manifester, someone who gets things done and gets them done well. Whether  it’s building schools for impoverished  children and vocational  training centers for impoverished women, building ashrams and medical clinics in the high altitude sacred Tibetan region of Mt. Kailash and Lake Mansarovar,  changing values, societal norms and cultural behavior around both defecation and menstruation, or copy-editing every page in the 11-volume Encyclopedia of Hinduism –  during my twenty-five years in India I have been blessed to be able to play a major role in the creation and manifestation of many projects which people had deemed un-doable.  Surely, I would be able to get my mom to snap out of this psychosis so she could begin her road to recovery.

For the first four or five weeks, life was a sprint – a frantic and frenetic run to find the right doctor, the right healer, the right treatment, the best probiotic, so she would “wake up” and grab the quickly dissipating critical window for rehab after a stroke.  Nothing worked.

I shopped for her nearly every day at the best organic health food store and hand-made her kichadi with just the right spices and veggies. If I could just feed her the most healing food and find her the best superfood date-and-cacao-balls, surely her brain would start to function again.  Nothing worked.

Finally, the top vascular neurologist at UCLA explained that mom was not going to get better and there was nothing we could do. He showed us the scans of her brain, the hugely damaged areas on both sides and, without giving a detailed cause-effect map of which damaged area led to which deficit, he made it very clear that there was only one direction this would go. Down. He also reminded us that even if, with God’s grace, she recovered a bit (as was still possible in the first six months post-stroke), it was only a matter of a short time before she had another stroke. Amyloid angiopathy, the disease causing her blood vessels to leak into her brain, is progressive. We had 3 years between the first and second stroke. Maybe we’d get a year or two between the second and the third, he explained.

As it turned out we had barely a month.  Throughout May mom had a series of additional bleeds as well as two falls that, while minor, caused subdural hematomas. The effect was pronounced – she got much worse on all cognitive levels but amazingly the psychosis and agitation disappeared.  Where she had been quite fluent in speech and able to walk well, she began speaking only a few words at a time, and over the next several weeks she became confined mostly to a wheelchair.

It took me all of April and most of May to realize that her situation was not a problem for me to solve or a crisis for me to fix. It just WAS. While I certainly wished I had a magic wand to make it all go away, there wasn’t really anything I could do.  If there was no solution, maybe it wasn’t a problem to be solved after all. Maybe it just WAS….  When frustration, grief and anger arose, I stopped using them as catalysts to run faster and harder and started simply sitting with them and allowing the feelings to be present until they naturally dissipated.

2. Acceptance isn’t giving up. It is leaning in.   Too frequently we think of acceptance as weak. One should only accept their circumstances if one cannot fix them. Acceptance is seen as a euphemism for throwing in the towel.  I learned that acceptance doesn’t mean I wouldn’t change the situation if I could. It’s not conceding defeat. It is simply a choice to be present with what IS rather than with what cannot be. Acceptance doesn’t mean “Oh I love this, isn’t it great?” It means I am able to sink into a depth and spaciousness within myself in which this current unchangeable situation also exists and my internal peace, joy and freedom also exist. I don’t need to remove or fix the unpleasant situation in order to experience peace, joy and freedom. I can expand my awareness, my sense of “I Am-ness” such that this situation and my grief can co-exist with the highest truth of who I am – love, joy, freedom.

3. Nothing in nature is stagnant and all stages are beautiful. It’s so tempting to hold onto that which WAS rather than be present with that which IS.  If only we could rewind time, everything would be better.  It’s so tempting to imagine we can re-do the past in order to change the present. If only mom’s neurologist had scheduled her for an MRI immediately when mom called her to report unusual symptoms rather than scheduling it a week later, maybe the stroke could have been detected and prevented.  If only we had brought her to India immediately where she could have gotten the special marma therapy and nadi yoga treatments, we might have been able to prevent the loss of so much.

When we speak of the need to “let go,” it’s not about giving up. It’s about relaxing into the truth of what IS instead of the fantasy of what might have been or the memories of what was.  In nature we see seasons – dry seasons, wet seasons, hot seasons and cold seasons. Seasons when fruit trees bear fruit. Seasons when they don’t. Seasons when green leaves adorn branches. Seasons when they dry out, shrivel up and flutter to the ground.  The seasons of autumn and winter are just as beautiful, although distinctly different, from the seasons of spring and summer. Leaves turn brown and fall to the ground, flower buds close and drop from branches.  And it’s exquisite. Not in the juicy-fruit or fragrant-flower form of exquisiteness. but the red and brown leaves of autumn and bare branches against a winter’s sky have their own glorious beauty.

Youth and health are vibrant, full, juicy.   Aging and drastic loss of our abilities have a beauty of their own. Not the beauty of plump, fresh youth, but the stark beauty of leaf-less branches against a winter’s sky, the beauty of red and yellow leaf-covered roads and gardens.  As I began to let go of the idea that I was going to rescue my mom and “bring her back” I began to appreciate a new beauty in her. A calm, still beauty, unencumbered by the dramas of her past, unhooked from the identities and personalities she wore for 77 years.  These days mom smiles most of the time. It’s a soft, gentle, peaceful smile – one unconnected to a funny joke she just heard or a movie she loved. When we ask her “how are you?” she either remains quietly smiling or she responds with “I’m good,” or even “It’s fantastic.”  As I loosened my own death-grip on that which WAS and therefore that which I believed should continue to be, I became able to drop into an ability to recognize the beauty of that which IS.

4. Love exists in a space of its own. It is not dependent upon a shared history or a continued ability to converse, or occupying the same mental, cognitive or emotional place at the same time. Love requires nothing from the participants other than to permit love to exist.   These last ten months have given me the gift of being able to exist in the state, the place, of love with my mom completely free of any history or relationship or drama or even meaningful verbal communication.

It’s a gift to share that with anyone but it’s a special gift to share with a parent. Even for those of us walking a deep spiritual path there are always dramas with family members, especially parents. There are agendas, expectations, aspects of ourselves that we may feel we’ve long since outgrown, but our family members continue to relate to us as though we are still squeezed into decades-old personalities.

No matter how good and healthy our relationship with our parents may be, nonetheless there are unavoidable patterns of behavior and interaction that we all get stuck in. I think it was Jack Kornfield who so aptly advised something like, “if you think you’re enlightened, go spend a few weeks with your parents.”

In the beginning I tried to bring mom back, to get her to engage as my mom, to remember the things I wanted her to remember, to care about what she used to care about, to be interested in things I was sure should interest her.  When I could relinquish my own suffocating attachment to what no longer was, I developed the ability to drop into the beauty of what IS. She’s no more able to “come back” to us after her brain damage than she would be able to hold my hand if her arm had been amputated. I slowly became able to stop expecting and hoping that somehow she would “snap out of it” and to open my heart to the identity-less, personality-less, history-less experience of just pure love in this present moment.

It’s been such a blessing on so many levels and especially on my own spiritual level. As she let go of her mom-ness, I have been able to let go of daughter-ness.   As she no longer engages in her role as mother, I no longer am stuck in a role of daughter. We can exist and love each other beyond the roles, beyond the dramas, beyond the identities.  Two hearts loving together.

5. There is perfection even in misery.  There is space for it all.   In the third week of May, after being in Los Angeles for seven weeks, I left for a two-week spiritual pilgrimage through the mountains and forests of California with a couple of close friends. Nature has always been the temple of my soul.  As I walked then ran then skipped with arms floating in the blue mountain air, I KNEW everything was perfect. Exactly perfectly perfect. And that day mom needed not one but two shots of her antipsychotic medicine to stop a complete meltdown. And the buttercups were in bloom covering the mountain meadows with bright orange polka dots. And mom was getting worse. She could no longer walk to the bathroom. And the redwood trees reached up out of the earth hundreds of years ago to cradle me. And mom wasn’t speaking now at all. And the clear-as-glass mountain lake glistened in the sunlight and absorbed all of me – past, present and future, body, mind and soul — as I swam and swam till my breath ran out in the frigid water under a blazing afternoon sun. …   That pilgrimage in the woods and so many shorter ones over the following months enabled me to experience the pervasive, unbroken perfection of the universe that exists NOT isolated from suffering, illness and death but whose perfection permeates and pervades all, even that which is so clearly far from perfect.

6. Law and Order isn’t a panacea but it’s close.  As my days were consumed by the logistics of mom’s medical care, the aptitude (or lack thereof) of her caregivers and nurses, her grocery shopping and concern over whether she was or wasn’t eating, I found my mind preoccupied in a way it hadn’t been in years. I found it more and more difficult to quiet my mind in the mornings for meditation and prayer as there was just SO much to be done, and yes it really was a life-or-death situation, or so I told myself as I justified my own stress and pre-occupation.  One evening I found myself watching a rerun episode of Law and Order, which seem to stream relatively continually on cable. I who live in an ashram where we don’t even have TVs, I who haven’t been to a movie theatre in more than two decades.

There I was thoroughly absorbed, enjoyably so, in the “good guys catch bad guys” police and courtroom drama.  Of course, quickly the spiritual seeker/spiritual teacher identity in me decided this was “bad” and “wrong,” and suddenly I was wracked with guilt. I should be able to just be fully present with the anxiety, with the sadness and despondency of hopelessness at any and every moment.  I shouldn’t find comfort in a momentary distraction. That was a cop-out.

Over the many months I was in Los Angeles I realized that while distractions are certainly not solutions, and are, in many cases, impediments to the conscious, aware, connected lives we are meant to live, they do have the ability to serve their own purpose if used with intention and attention.   I was no less sad or worried about my mom’s situation after watching Jack McCoy nail some lying, scheming murderer but my mind had gotten a bit of a much-needed rest and was able to engage in the logistics of mom’s care again.

7. I and my life are not the one exception to the universal law of nature.  The law of nature is just that, a law. Not a suggestion.  In the law of nature, everything and everyone eventually will fall sick and eventually will die.  As unfair as it feels when someone we love falls sick or dies, especially when it is so much earlier than we’d expected or hoped, we must realize that no matter how nice, or good, or generous we may be, we are not exempt from this natural law.

I discovered as I plumbed the depth of my own psyche during the spring and summer that, in addition to the despair I felt around my mom’s intractable and unsolvable condition, that I also felt interestingly let down by the Universe. This is not supposed to happen. My parents are such good people. Honest, caring, generous, compassionate. They were supposed to have another good ten or fifteen years left together, at least.  My dad was not supposed to be left alone at a healthy, strong, vibrant seventy-five. Mom was not supposed to be confined to a wheelchair or bed, unaware of her situation or surroundings, having to be fed, bathed and changed. This was most definitely NOT supposed to be happening.

One of the things I share frequently in satsang is that God, or the Divine, or any saint, sage, prophet or real guru does not ever promise us that if we are pious and devoted and good that no one we love will ever get sick or die. We are not promised, I teach frequently, in any scripture I am aware of, that the stock-market won’t crash or that our house won’t burn down or that we’ll never get fired or divorced. Instead, we are promised that, despite the inevitable ups and downs of life, that if we are pious, devoted and spiritually connected, we will stay anchored and grounded. We are assured that, as the world goes up and down, we will not, as my Guru says, go up and down with it.

And yet. And yet, despite having personally taught this truth dozens of times over the last many years, I realized with great interest that I didn’t actually believe it pertained to ME. Yes, of course it’s true. For others. For me, if I’m good, kind, caring, generous, spiritually evolved and evolving, surely I and my loved ones will be protected. Surely nothing bad will happen to us.

As I sat in high altitude meadows in the Rocky Mountains of Colorado in August while on my book tour, I watched the yellow blossoms get blown off their stems by the gusty wind. I sat beneath trees whose leaves would be drying and dropping in a few short months. As I looked out over the Rockies, I allowed myself to drop into the grassy meadow and into the awareness that yes, I, too, am part of the natural law of the universe.  My loved ones will get sick and die. I will get sick and die. And the flowers are in bloom, and the sun is shining…

8. Milk and cookies is the best time of the day.  At any age. Starting around August and then getting worse as September wore on, mom seemed to lose her ability to chew.  In the spring I could give her a piece of toasted bagel with hummus or almond butter, and she could put the bite in her mouth, chew and swallow. She could easily eat vegan oatmeal-raisin cookies, and she happily did so.  But slowly as the summer wore on, that ability deteriorated and by autumn I had to instruct the kitchen at Silverado Memory Care to puree her food.  The doctors told us that soon she would also lose her ability to swallow.

When she first arrived in India, we ensured everything was liquified. Kichadi (the Indian vegan chicken-soup dish of rice and lentils) was cooked with veggies and blended for her main meals along with pureed sweet dishes. Pureed oats or the Indian equivalent of Cream of Wheat for breakfast….

That was until we discovered cookies! I don’t remember how her caregivers suddenly discovered she loved cookies (who doesn’t?) but they quickly realized that the cookies did NOT need to be dunked until they fell apart in the milk. In fact, mom could bite and chew the un-dunked cookie very well and even open her mouth for more.  Over the last several weeks, we’ve realized she happily eats un-dunked biscuits and cookies, and even eagerly opens her mouth for more when she’s done.

“Of course you can chew,” I laughed out loud. “We just weren’t feeding you the right foods!” Slowly, we’ve started giving her pieces of apple and even paranthas. She has no problem chewing. And whenever she is unwilling to open her mouth wide enough for a bite of food, we have learned to put a small piece of cookie in.  Once the taste of the cookie permeates her taste buds, she quickly and happily chews and then opens widely for more.

My mom has always been committed to a healthy diet. I grew up in a home with no white flour, no sugar, no bags of potato chips, cookies or sugar cereal.   When I went to summer camp as a young child, mom sent boxes of roasted corn-nuts or trail mix or carob-coated rice cakes to be my daily “treat” rather than the sugary candy that other kids got.

Yet now, with that conscious, determined aspect of her personality gone, she eagerly savors all desserts, but especially cookies.

It’s made me realize how very simple and almost primal these pleasures are. It’s the reason that children, universally, rich or poor, black or white or brown, love sweets.  If you offer chocolate to any child, anywhere in the world, of any race or religion or culture or color, that child’s eyes will shine bright, and he or she will eagerly reach out to receive the treat.

How beautiful that mom, in this stage of her life, has come full-circle, that she’s able to let go of the do’s and don’ts of dieting, able to go beyond “good” and “bad” foods, and to just deeply enjoy the sweetness of a cookie, or five!

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