Last night a group met at my house to discuss Magda Szabo's novel The Door and eat Hungarian food prepared by my old friend Erika. I think we all agreed that the book was wonderful and the meal outstanding. The novel is about the complicated relationship between a peasant woman and an intellectual writer, taking place in the sixties in communist Hungary. Erika, a native Hungarian, informed us of the novel's distinct "Hungarian-ness," but each of us found something to relate to whether it was female friendship, the role of caretaker and receiver, the complexities of mother/daughter relationships and even that of writing and material. The book was written in the 1980s and only recently translated into English, but The New York Times included it on their list of the Ten Best Books of 2015. It's a short book, but I think most of us at Books & Bakes would recommend it.
Now, the menu. Good Lord, ya'll. Not only is Erika a beautiful writer, a Caretaker Extraordinaire of a beautiful little girl with severe disabilities, but damn. She can also cook. I milled around the kitchen a bit before acquiescing entirely to her skill and concentration preparing authentic Hungarian dishes. I won't divulge that the night before I had attempted to make a traditional Hungarian pastry that I had to throw in the garbage and left me in tears. I thought I'd lost my touch, but Erika assured me that the recipe I was using was at fault. Perhaps that's true, but I think that I have too many proverbial frying pans on the fire and have just lost my mind. I guess I just divulged that.
I learned today that the beloved osteopath who changed Sophie's and my family's life over twenty years ago died this week at the age of 95. All three of my children were patients of Dr. Frymann -- Sophie began treatments at ten months, when I'd fly to La Jolla for six week trips, living in a little motel by the sea. When I gave birth to both Henry and Oliver in Santa Monica, I traveled down to see Dr. Frymann when they were each less than ten days old so that she could give them a newborn treatment. She believed that treatment at birth and through infancy and childhood was of enormous benefit and freed the child from digestive issues, colic and the ailments that we've grown to expect and accept as we age (ear infections, "growing pains," back and neck pain, etc.). Over the next fifteen plus years, we made the trip down to San Diego multiple times a week and then month -- a drive that I never complained about because I knew what lay at the other end.
I credit her for setting Sophie on the path to true healing (something distinct from curing), and for ensuring the boys' vitality and ease (they were, quite simply, always jolly and rarely ill through childhood and neither ever on any antibiotic because of her treatments). I couldn't possibly describe this woman's impact on my own life and thinking. She is probably the only true healer that I will ever meet, the woman responsible for our move to California and for setting me on the path of integrative medicine and treatment. She guided me forward when I didn't know what to do. I believed Dr. Frymann when she
told me about the body’s inherent ability to right itself, to heal itself, and
that her work was to help the body find its optimal path. She never claimed to
cure a person but to rather help that person reach his full potential. When she
did speak of curing, it was in religious terms, an expression of her deep faith
in Christianity and God’s power. Her work, though, was not religious, in the
sense that she was a scientist who had studied and practiced osteopathic
manipulation for over fifty years. If it weren't for Dr. Frymann, I have no doubt that Sophie would not be alive today nor she and her brothers in such good overall health. She was your first ray of hope, my father emailed me this morning when I told him of her death.
Yes. She was my first ray of hope. She taught me nearly everything I know about healing and curing, about what it means to be human and whole. Her life not only affected ours but those of thousands of people around the world, and she worked and traveled and taught until her retirement at age 90, five years ago.
We will miss her and are grateful to have spent so much time, literally, under her powerful hands.
Here's an excerpt from a chapter in my book-in-progress about Dr. Frymann that gives you a small idea of her power and worth.
Dr. Frymann believed in the
inherent dignity of each child, no matter how “damaged.” She never used the
word “damaged” at all, in fact. Every
child is worthy and has potential. Every child can understand what is going on
around him or her, able to sense the environment and whether it is positive or
negative. Her beliefs resonated with me and with those who made such an
effort to bring their children to her. The simplicity of those beliefs tapped
into our most fervent hopes but also affirmed the things we already knew about
our children.
I sat in the “quiet room” at
Dr. Frymann’s office while Sophie got her treatments during my first few visits
to California at the La Jolla office, flipping through old Reader’s Digests and prayer books. Sometimes, I closed my eyes and
leaned my head back on the old chintz-covered armchair, my hands loose in my
lap. I knew that outside the sun was shining and that the palm trees were
swaying from the ocean breezes off of La Jolla Cove. I heard the faint sounds
of piano music coming from the music therapist in the treatment room and the
gentle opening and closing of the front gate. When I opened my eyes, I saw that
a woman had walked into the office with a girl in her arms. The girl appeared
to be made horizontally the way she lay flat on top of the mother’s bent arms.
Her feet, twisted inward, stick-straight out, level with her head, a long black
sheath of hair hanging down over the other bent arm. She made no sound and
there was no way to tell, really, what her age might have been. I tried not to
stare, smiled awkwardly, instead, and said hello to the woman. She sat down,
still holding the horizontal child, murmuring to her. The girl didn’t move in
her arms, lay straight like a board.
When Dr. Frymann came out with
Sophie, she handed her to me and told me that she’d see us in two days. When I
asked how Sophie “did,” she replied, “Fine. Her vitality is much better.” She
then turned to the other mother and lifted the girl into her own bent arms. The
transfer was effortless, and now it was Dr. Frymann who carefully balanced this
child over her arms, walking back toward the treatment room. “You are an Indian
princess, yes, aren’t you,” she crooned to the girl as she walked away.
I might as well have been speaking in tongues yesterday, at least when I declared Sophie had turned a corner, was on her way to a better place. She had multiple seizures last night, all night long and into the morning. I'm not sure what to do other than continue to tinker with the cannabis. She seems all right this morning, which is confusing. I imagine only those well-versed in these things understand my restraint in not consulting the neurologist. I am not lacking in hope, just tired. A bump in the road I will not climb or walk past but perhaps, temporarily, rest beside. I wouldn't feel responsible leaving yesterday's post up without today's, so here it is. I'm going to close comments, though, because I don't have it in me to listen. That's what comes, sometimes, from exposing too much, elation spilling over, taken over by a language that no one understands, including the speaker, me.
Sophie's turned the proverbial corner and appears to be responding to the new strain of cannabis. I'll provide the details if you leave a question in the comments below, but for those who are still struggling with getting cannabis or using cannabis, know that patience is in order and that much tinkering has to happen. I still believe that this natural plant medicine is vastly preferable to anything offered by pharmaceutical companies, and I'll be able to write more about it as I learn more (which is a given very soon because I am starting a new and full-time job in the cannabis information business). More on all of that at some other time. Can I hear an Allelujah?
Within one week of switching to this new strain, Sophie's seizures, which had become near constant and were characteristically worsened by a virus, have dropped down to -- well -- next to none, and that's with a full moon shining in the Los Angeles night sky. I, too, was reduced to a wreck or to a sort of full-figured wraith, transparent, despairing. It was like days of old around during the last few weeks, the days before cannabis when I plead on my knees to a god in whom I had no belief. My night-time psychotic self had returned, the woman who lies in bed churning over years past, convinced there is something I've done wrong, a dark hours before dawn narcissist. The boundaries between Sophie and me are porous at best, and if I were to be totally honest, I'd say my identity is so entwined in hers that there's no getting out. Singing the blues, really. when my baby doing bad, I turn sad.
Speaking of blues, Mary Moon suggested that I attend a house concert last night featuring a friend of hers, Spencer Bohren. It turned out that the house was literally in my neighborhood and about four doors away from the original house we rented when we first moved to Los Angeles eighteen years ago.
This man could sing and write and play and spin stories and spun me into a mesmerized state. I talked at length to his beautiful wife Marilyn, also a friend of Mary's and felt as if I'd known her forever. I also sat on a couch next to a legend -- Harry Tuft -- considered to be the godfather of folk music in the Rocky Mountain region and whose center was visited and revered by people like Bob Dylan and Joan Baez and the Mamas and the Papas and all manner of blues and folk musicians. Holy mackerel! He introduced himself to me and said it'd been a long day, that if he fell asleep I was to poke him awake, and when I told him that I wouldn't do that, he told me that he had narcolepsy and I very well should. Spencer dedicated the first song to Harry, a Bob Dylan tune, and Harry whispered in my ear that it'd be amazing, and it was. The whole night was amazing, a perfect cap to and for a week and a woman turned glad from bad.
How to remain coolwhen navigating the treacherous waters of Verizon customer service, trying to figure out why I am being charged hundreds of dollars a month for a hotspot that I returned in July after my sojourn in Hedgebrook that I thought was taken care of but that I apparently didn't according to the Verizon people and now that I've switched to T-Mobile am being punished with the most incredible round-abouts and garbled technology talk that took hours and hours and is still not resolved even though I had to go to the actual Verizon store as well and take it up with them.
Gratitude that I don't live in a concealed carry state because surely, if I hadn't learned #1, I would have been hard-pressed to not just go ahead and "settle things" Texas-style
How to "dab," a dance move that Oliver told me about, demonstrated and then judged harshly with the utmost scorn and mockery when I attempted it (see photo above). Oliver has no idea that I actually do have a sense of rhythm, and while I wouldn't profess to like the music that goes with this dance move (at some point he screamed over the jarring cacophony that whenever the pounding bass line dropped, I was to DAB!), it's not that far removed from the Hustle or the Bump, both of which I excelled at in my day.
We have to continually be jumping off cliffs and developing our wings on the way down.
Such a great site -- poke around on it, reflect about it, support it and share it. And if you know someone who could use some cheering up or who's going through a difficult time with a sick child or a disabled child or who might be grieving for a lost child, share the video with them. It was certainly a labor of love, and I'm eternally grateful to have been a part of it.
Thought: I have to admit that I greatly resent my skill at drawing up Sophie's medicine into a syringe. Do you know that we have never, ever forgotten a dose in all the 21 years she's been taking this mess?
Thought: I also have to admit that I hate the fact that Sophie can swallow any size pill you toss into her mouth without gagging, choking, biting down on it or spitting it out. I hate that she is A Really Good Pill Taker.
Thought: I hate that David Bowie, Alan Rickman and Glen Frey all had to die.
Over the weekend, I had a dark hour before dawn that followed a day fraught with some anxiety about things unbloggable and things of Sophie World, so being the kooky cat I am, I decided to ask the I Ching a question and get some guidance, in lieu of lying in bed in a cold sweat of fear and trembling. Actually, I'm so not kooky in consulting the oracle, as it's guided me through countless conundrums over the past thirty years, and I've learned a lot about myself, my proclivities, my weaknesses and strengths as well as those of other humanoids. So.
In general, I asked the oracle what I should do about a certain situation and how I should proceed. The certain situation is very complex and life-altering/changing. It's all closing in and coming to a head or a point or whatever other cliche you can call life/changing events. I feel overwhelmed with everything, basically, despite many, many good things happening.
I got Hexagram 18 as my answer. For those of you new to the I Ching, it's an ancient Chinese oracle with 64 possible results/outcomes. It operates under the principle of what Jung calls synchronicity. I studied Chinese in college, and while I remember exactly nothing of the language (except to say hello and thank you), I did keep my Wilhelm/Baynes copy with the forward by C.J. Jung and highly recommend it. I also use R.L. Wing's The I Ching Workbook to help clarify the hexagram. If you're going to do any work with the Book of Changes, you will want that workbook. I realize it's sort of weird to type out what the I Ching said to me, but it's an exercise, and it'll help me to continue my pondering and mulling.
This is what Hexagram 18 says:
Repair (decay) The object of your inquiry is in a state of disrepair. This may be an inherited difficulty or it may have come about because you have been unaware of a need to constantly monitor, analyze, and attend to the details of the situation. You cannot ignore, or discount as unimportant, even the smallest detail of any situation over which you wish to maintain control. All things have built-in weak points, places that decay and eventually collapse. This is especially true in human affairs. Stop now and think about it. Your problems may seem to be overwhelming; things may appear to be out of hand. Yet the hexagram REPAIR bodes great success. Through work you have the opportunity to totally eliminate the past indifference that has created the present uncomfortable situation. Work hard. You can see the problems clearly. The time is excellent for making amends. Do not be afraid to take assertive action. Outside forces do not influence the situation. Your own past attitude has allowed the damage to occur, making you uniquely equipped to REPAIR it. Before taking action, it is important to consider the winding path that has led to this state of decay. Only through intelligent deliberation can you be certain that the action you take is correct. Think it over carefully. The original Chinese text recommends three days of consideration before making a move, but you will know when to act by the nature of what you propose to do. The correct actions now are constructive rather than combative and lay the foundation for continued growth toward the good. This is not a time for radical or reactionary reforms. Look, instead, for an avenue of constructive action, an area of positive growth. Be energetic once you've found your path of action. Don't be lulled into inertia by the magnitude of the task. The situation will develop new energy and inspiration once the problems are removed. Also remember that you must keep things in line once the change has been made. Don't slip back into an attitude of complacency. Your problems could easily recur. This hexagram in its static form points to the necessity of a change in attitude about your environment as a whole. Too many elements of your life have reached a state of neglect, disrepair and inertia. You cannot hope to guide your destiny with any effectiveness when you do not have authority or control over everyday situations. Hope lies in an unrelentingly energetic and conscientious attitude.
Are you actually still here? Wow. I can't tell you how relieved and nearly thrilled I feel with this answer. There've been plenty of times when the hexagram I "get" is not so thrilling or plunges me into worry or makes me wish that I hadn't done the consulting. If you have doubts about this whole shebang, you should try it. It'll surprise you.
Henry and I left Friday afternoon for Palm Springs where he played about seven thousand games of lacrosse while I watched.
Here are a couple of good action shots. Henry is the one on the far left at the edge of the photo, number 15.
Here's another one:
Here's me, watching the field. I have a really shitty sports-mom chair that is sort of broken, and because it was Palm Springs, and the sun was shining mercilessly at times, I rigged my sweater as a sun shield and hid out.
Normally, I wouldn't post such an alarmingly close photo of myself, but I sort of like the weirdness of the colors -- my upper lip has entirely disappeared into what appears to be lily-white skin (that I've never had), there's an enormous line running down the center of my forehead (that I've had for a short time, but it appears to have lengthened and deepened), and some horrifying crepey substance below my neck which I swear to you is NOT my skin. All moles (beauty marks) and errant eyebrow hairs are original. Posting this here is a rather vain attempt to purge myself of vanity. Humor me.
I also got to do my favorite thing which is to sleep in a hotel bed made up with white linens. I threw myself down onto this bed on both nights we stayed in the hotel, eventually making my way under the duvet with my little chapter of War and Peace (yes, I'm still going strong with a chapter a day, are you?) and then a few pages of Magda Szabo's The Door (my Books & Bakes selection for January) before literally crashing around 9:15. Henry, I believe, watched television from his own bed and claimed that I snored. Good thing he's so handsome. Here he is taping his lacrosse stick.
Here's a photo that I took at sunrise from the balcony of our hotel room, where I most certainly did not snore:
In all seriousness, being the parent to a teenaged boy is really the best, especially when your son is nearly always charming and patient, drives well on southern California freeways and never complains. All of the superlatives more than make up for having to charade as a sports mom which means yelling out every now and then in excitement, wincing when said teenager goes sprawling into the ground, tolerating the Screaming Dads and every now and then throwing in a comment or observation about the game which appears out of my mouth like a sort of cartoon bubble. Since I barely know any of the other parents on the team (there are actually some really great ones this time around), I imagine they think I know what I'm talking about, but I can assure you, Reader, I absolutely do not know what I'm talking about when I talk about lacrosse.
What happened up there is that Henry came running toward me -- I mean, the player with the ball -- and I was able to take that amazing action shot. Two seconds later, he lay sprawled on the ground, and good lacrosse mom that I am, I barely winced and certainly didn't gasp and might have even yelled at the ref, but I can't remember.
Did I say anything about living in southern California and how fantastic it is? This venue was just a two hour drive from us -- desert and blue skies and snow-capped mountains ringing the fields. Whoa. Right?
Tonight I dragged my sorry ass self, newly recovered from a cold and cough, to a screening of a remarkable documentary about the movers and the shakers of the feminist movement from 1966-1971. It's called She's Beautiful When She's Angry.
Wow, people. Just wow.
I watched the movie with a few hundred other women and a scattering of men in an historic building in Los Angeles called the Ebell. The women were of all ages and races. The movie is funny and moving and most of all, rousing. I feel such gratitude toward these women who came before me, who so doggedly and -- yes -- angrily demanded their rights as equal citizens. The movie isn't just about white, straight women but about all women, including women of color and homosexual women. It does an excellent job, too, of demonstrating that despite all the radical goings on of the time -- the anti-war movement, the student rebellions, black power, etc. -- women were left out and not counted even by these so-called liberals and radicals. I sat on a little hard-backed folding chair and laughed and teared up at the audacity of these pioneers and radicals, realized how much I take for granted and how much left there is still to do.
I felt galvanized by these women and their history, and I felt strengthened and more accepting of my own anger and radicalism -- not just about women's equality and, particularly, reproductive rights that are being whittled slowly away, but also by this cannabis movement and my role in it as, often, a quite angry mother in confrontation with an established power structure.
I received an email the other day from our local Epilepsy Foundation affiliate with an announcement of the annual Epilepsy Pipeline Conference in San Francisco. Last year, I attended this conference and was an invited speaker on a panel. I spoke of our experiences with cannabis and didn't get the greatest reception from the physicians and "professionals" in the room -- they were either dismissive or uninterested, one was downright hostile -- but I had numerous people come up to me privately and confide their gratitude that I had spoken so openly and honestly about our experience. One guy told me that when I spoke it was as if a bomb had gone off in the room and blown everyone up. I have to say that my ego surged when he said that, but deep down I was embarrassed, too. As a woman pushing against boundaries in the medical world (and it started long ago for me and well before the cannabis revolution began), I haven't always been confident. I'm even now not always confident, particularly when I am admonished for being angry. I've been called too angry, too outspoken, undiplomatic. Several relatives have publicly shamed me and called me a miserable person. Someone anonymous not too long ago left the condescending comment You're a great writer, but you're too angry. I'm going to be honest and say that those comments hurt me, that I hold remnants inside of me that dictate what a good girl is, what a humble woman does, what makes a lady, and that I'm none of those things.
This year's Epilepsy Pipeline Conference, as far as I can see (and the schedule could very well change), has no representation of cannabis as therapy except from a huge pharmaceutical company. This doesn't surprise me, and my initial impulse is to feel cynical and bitter. Now, don't think that I haven't done a lot of soul-searching, wondering if maybe I am too angry and combative, that I'm not going to ever be invited to speak at any of these functions again because I don't tow the party line. I wonder if I should be less angry, perhaps even tone down the truth of our story with the goal of persuasion. Is it better to tone it down and try to reach more people? Is it better to compromise one's truth? Nah.
Watching this documentary and seeing what those women (and those before them who struggled for suffrage) did and how they handled oppression opened my eyes and strengthened me.
I am beautiful when I'm angry. You are beautiful when you're angry.
Here's a trailer for the movie:
Here's the website with information about screenings and the forthcoming DVD issue.
My mother gave me that little painting, and I can't quite figure out what's going on. I think it's Italian or maybe French, and there are bunches of women everywhere. They're rowing the boats, huddled on the street and marching with flags. I imagine it's a Kingdom of Women. Who knows where the men are -- perhaps behind the closed doors and windows? The little plastic soldier has been sitting there, on top of The Kingdom of Women, for years. I'm not sure what he thinks he's doing, but I like him there. There's a little plastic rhino perched just so on the useless owl butter dish on the kitchen windowsill, gray plastic on yellow. He lightens the owls' gravity.
When I was a young child, the mean kids would call me Elizabeth Aqueero. Sometimes it was Elizabeth Aweirdo.
In the exceptionally dark hours before dawn, I felt the usual dread and existential terror. I got up and stood in the dining room window watching the sunrise, again, the brilliant streaks of red and pink and orange over the neighbors' houses across the street. They last about a minute or two before fading, overtaken by gray and blue. I felt silly, insignificant, for having those dark night of the soul thoughts, again. What I need is someone to be always beside me, under the gray sheets and pink linen, whispering in my ear pay no mind, those are lies, the world is pink, orange and blue, someone, something, a tiny plastic soldier-man who thinks he's keeping guard over The Kingdom of Women, a gray rhino restraining a yellow owl.
This is the reason why Sophie struggled so for a few days, and now that it's actually settled in, she's much better. True, the Diastat is still doing its magic, keeping her nerve endings sluggish, but her pattern is a ferocious bout of seizures before symptoms. With a full-blown virus, including fever, she generally has no seizures at all. Even high fevers (which she hasn't had in many years) make her seizures better. Smoke that, you Seizure Afficionados! I know you've heard it before, but some kids with epilepsy or autism or both have improved seizures or even behaviors when they're feverish. That's been Sophie's pattern since she was an infant. In the days building up to a virus, she will have concentrated bouts of seizures and then none at all or far milder ones for the remainder of the illness. Are your eyes glazed over? Mine are. In the same way that some women act surprised when their period comes or even exasperated that they, once again, have no products to stem it, even though such occurrences happen regularly each month for decades -- well -- I forget in the dark hours of the night or early morning when Sophie is seizing unexpectedly that she might very well be coming down with a virus. To be fair to myself, it's not always a virus and countless bad days in her life are attributed to nothing, but you'd think I'd know the pattern after nearly twenty-one years. Sophie honestly hasn't been sick, sick in a very long time (which I imagine has something also to do with CBD as it has both anti-inflammatory and anti-microbial effects), so I must have gotten a little rusty.
Do I sound giddy? I am! Giddy with relief! And we're trying a new product this week -- a different strain of cannabis that I hope will improve her SIT U AH CEE ON even more. Stay tuned.
Love,
The Happiest Person With A Cold and Cough on Earth
I'm a bit obsessed these days with Los Angeles winter sunsets and rises. I'm wondering about the edges of days and nights, why they come in with such glory and go out the same. There's something significant about day disappearing with such drama and then appearing again, aflame, here on the edge of the continent.
I was up off and on all night with Sophie as she struggled with seizures, with agitation, with who knows what. Was it a cold coming on? Was it the weird weather? Withdrawal effects? Was it the fracture in our family? CBD saturation? Something wrong with the new bottle? A stroke? A brain tumor? A virus? In the morning, she had four tonic-clonic seizures within forty-five minutes, broken only by bouts of collapse/sleep. I sat on the edge of the bed and watched her. I put it off and finally caved to Diastat, an emergency medication that I haven't used for nearly two years. Making the call to use Diastat is always difficult because while it has an immediate and blessed effect, it's also in and then out of the system in a matter of days, and that is a type withdrawal for Sophie. She'll be sluggish, maybe irritable, maybe jumpy from residuals. At no time did I consider calling The Neurologist or any doctor, for that matter, other than the one who helps us with all things cannabis-related. I didn't panic beyond the questions I listed above, the questions that have no answer. We live the questions, here on the edge. Nor did I think that something was going to happen and that something would be really bad if I didn't get "help." It crossed my mind that something could happen, but I felt no urgency. I didn't pray for mercy like I might have done in olden times, although the word mercy crossed my mind, was on my lips with please and please stop and guide me. I'm not sure how to get across these edges of things, this feeling that I have after "dealing" for over twenty years, this sort of existential dread that there's no one to consult. This edge, with one side resignation and the other acceptance. Perhaps you think me jaded, over-confident. Or you know exactly what I'm talking about because you, too, have done and thought the same with your own child or young adult. Do you have a way to describe it beyond that?
This morning, Oliver asked, worried, What's happening with Sophie? Is she going to be all right? I told him that she was having a rough spot, that she'd be ok. A few minutes later, he exclaimed over the sunrise, ran outside and took the photo above. It's only for a few minutes that the sky is on fire, before the edges of clouds bleed into blue. Sophie seems none the worse for the wear given the last twelve hours. She's resting, a little congested, but eating and drinking and sitting up, looking around. My edges feel blurred. I'm tired.
