I like fancy words. I won’t remember how to say them right and feel silly when I use them, but I love it when other people do. They catch my attention and I always learn something extra. And when I was an anthropology student* there were a lot of fancy words to learn. Each quarter I began to notice that there was always one that would rise to the top, one word that every professor all seemed to think at the same time was super important for me not to forget. My first quarter that word was hegemony.
So at the risk of sounding silly, I want to explore a few things I’ve been percolating on that keep bringing that word to mind. The first I hate to even comment on because its exactly what I try my hardest to reassure families won’t happen to them. “You aren’t doing anything wrong. You don’t need to be afraid.”
And yet last week a family just up the 5 freeway from us in Orange County found themselves in what is being called an attempted “medical kidnapping.” Kennedy May has Dravet’s syndrome, one of the most catastrophic forms of epilepsy with a devastating prognosis. She was actually doing pretty good when her seizures returned and she was transferred to Children’s Hospital of Orange County. You can learn more about her family’s horrific experience with Dr. Mary Zupanc here. The allegations are that this doctor called CPS and charged her family with medical neglect when they challenged a series of decisions Dr. Zupanc made that they knew to be dangerous for their child.
When I saw Dr. Zupanc’s name I shuddered and didn’t have to read any further. I’ve heard a number of stories about this doctor from her previous patients. There is a family in our group. This mama is STRONG and she would drive the long way back to San Diego in tears after meeting with this doctor. Dr. Zupanc has THE WORST reputation for having THE WORST bedside manner among parent’s in our community. Parents around here do NOT like this neurologist.
(Nobody likes a bully. But its kind of in California’s air these days. I’m thinking about SB277.**)
I’ve also been thinking about this analogy I’ve heard shared a few times by a neurologist who I DO like. When asked if he would recommend cannabis, his answer was to compare trying it to blindly putting your hand into a bowl on the table filled with a variety of pills and taking whatever it is you pull out. There are so many cannabidiols and we don’t know whats doing what, he reasons. So he cannot recommend it.
I cringe whenever I hear this and think, “Yikes! I’m not sure I’d be using this one if I was a doctor of pediatric neurology.” My mind jumps to another mom in our group. In fairness they are not this doctor’s patient. But this is not unusual – her son is on 5 pharmaceuticals without seizure control. He is going blind and 2 specialists have confirmed this is a side effect of his medications. They aren’t really sure which are causing the blindness or which are helping his seizures. In effect, hasn’t this family been sticking their child’s hand into that big bowl of pills on the table?
And since March I’ve also been thinking about another mom I know – Elizabeth Aquino. She has been Sophie’s mom for over 20 years, treating epilepsy for over 20 years. She is so on point, across the board. I insensitively laughed too soon after she oh-so-bravely shared Sophie’s miracle experiences with cannabis to a conference room full of neurologists at the Epilepsy Summit in Los Angeles. But the reception was so unbelievably cliché I couldn’t help myself. You can read her response to her beyond disappointing experience here. Suffice to say, they weren’t really that impressed that cannabis has helped Sophie in ways that nothing they have ever offered her in 20 years has. Elizabeth has a running joke on her blog about her trademarked “tiny little mother mind” and sometimes I can’t laugh at that one because it can be a maddening reduction depending on my mood.
My “tiny little mother mind” has been thinking about all of the above and how the idea of hegemony might help highlight some important pieces of our struggle and why its so important that we band together. If I’m remembering correctly, hegemony is about the ways those in power influence cultural ideologies so that what is in their best interest is accepted and reinforced by the rest of us as common sense, even if it isn’t in our best interest.
So as I turn it all over, I question the “common sense” that allows doctors to bully intelligent, responsible parents. I question the common sense that isn’t open to cannabis but is more than willing to allow (or in Kennedy May’s case, force) children to be prescribed multiple medications that we don’t have good research about either. And I question the humanity, in addition to the common sense, of any person who doesn’t get excited when a plant stops a seizure that nothing has ever stopped before.
Again, I’m fairly new to all this, my son was only diagnosed in 2013. But by my observations, the “common sense” paradigm that puts western medicine as the dominant perspective informing intractable epilepsy treatment is fairly ignorant to their own issues. I do question how much of what they have to offer is actually in our best interests. By their own admission, pediatric neurologists simply don’t have many effective tools in their belt. That’s actually why catastrophic seizure disorders are called intractable, because medical treatments don’t work.
Trust me, there is not a parent in our community who didn’t want all this to go away with a pill. And it does in about 65% of epilepsy patients. But for those of us in the remaining intractable 35%, we HAVE to look at alternative therapies. Maybe it makes sense to some parents to always follow doctor’s orders. But I’m with Kennedy May’s family, putting my child through extreme medical interventions that have less than a 10, 7, 5, 2, 0 percent chance of working is not a cultural value I share. And it needs to be okay to have different values and to be working with professionals who respect your right to self determination.
Unfortunately, one problem with hegemony is that it doesn’t like to be challenged. This places parents in an offensive double bind. It is absolute bullshit to invalidate the other forms of healing and wisdom that we have no choice but to consider. Particularly by those who have little to offer that is effective.
But they do. Because there are gaps in the research about medical marijuana, (like the doctor above with the bowl of pills) they tend to propose we place it on hold as a treatment option until they can look at it their way and make it their own. And of course we need their perspective. But let’s not over think things. Let me suggest applying common sense: For thousands of years humans have wisely cared for their bodies by trying plants, by trying this plant, and observing the effects and sharing their experiences. I propose that sometimes it can be that simple.
We can all make observations. When I looked around and followed hope it didn’t lead to more medical interventions. (I would have followed it there if it did!) The families in our group whose children are on the most medications are those who struggle the most. In my direct observation working with these families, cannabis has yet to cause the harm A LOT of these medical interventions already are. Observation and communication informs us that maybe we actually do know a little something about how some of the cannabidiols are working and how to use them safely.
While it can be a struggle, it is very encouraging to watch alternative treatments move closer to the center. Because by definition, intractable epilepsy has to be treated alternatively. Seizures can be triggered by stress, environment, diet, illness, etc. Lifestyle is key. Yes, neurologists have important pieces to contribute to the puzzle. And I’m incredibly grateful for all they’ve put into learning what they know. But it’s not just their puzzle. I have a number of people contributing to my son’s treatment plan: from the doctors at Rady’s neurology department, to our magical chiropractor Dr. Steve Tullius, to naturopath Dr. Michelle Sexton, to Ray at the Realm of Caring California, to the art therapy program at A Reason To Survive, to his dance instructor Claudia Gomez, to the staff at his school, to the intelligent parents in this group and their beautiful children. I’d have an entire interdisciplinary treatment team if we could all get in the same room. It is the combination of everyone’s wisdoms that I observe to be working for my son.
While some of us in our group have had better experiences than others at Rady’s neurology department, most of our children are treated there and none of us have been threatened. Overall they’ve joined with us, expressing curiosity and encouraging open communication. Maybe they’re just putting up with us, but compared to the stories coming out of CHOC and ULCA, their response is fairly progressive and we are getting a surprising amount of “support.”
Despite all the shuddering, cringing and laughing in this post, I mean no disrespect to the medical profession. I work in healthcare, so did my father, my aunts. I always have good luck with complementary approaches. I haven’t been in this as long as Elizabeth and some of our other friends and am fortunate to have come behind them. My son is on one pharmaceutical medication and has only tried 2 instead of the 7, 10, 15 plus my friend’s children have. So I’m not necessarily angry at “big pharma,” nor am I here to make assumptions about how this cultural hegemony serves doctors as individuals. I could only guess at what they get out of reinforcing a treatment modality that every one of us can observe with our own eyes isn’t working.
What I do know to work, and why I am writing this blog, is to offer a perspective and community that validates and supports those of us who share a different and equally valid value system. Part of the power of hegemony is found in consensus. And so my work here is to add my voice to the building consensus that shares holistic healthcare values because this is the common sense I know to be in my son’s best interest. My hope is that our community creates a sense of safety and normalcy around these treatments that remain controversial to some.
We aren’t doing anything wrong. We don’t need to be afraid.
* I took every class offered at UCSD by Dr. Erica Prussing, an epidemiologist and medical anthropologist. Two books she assigned that I continually think back to are The Spirit Catches You and You Fall Down and The Greatest Benefit to Mankind: A Medical History of Humanity. Looking back now, it feels like foreshadowing. Apparently you don’t have to be Hmong to end up in a nightmare.
** SB277 is the hot button healthcare issue among California parents right now threatening to take away our children’s access to education. This is such a clear violation of my rights I can’t even comment other than to scoff and refer to this report here. The National Vaccine Injury Compensation Program actually pays the medical expenses of children who have been damaged by vaccinations. This game of Russian roulette may have only one bullet in a million or so rounds, but someone is taking that bullet. I know a beautiful young woman who did, who our government is paying the lifelong care for. These numbers may or may not mean anything to you, but I think its only common sense that parents get to decide if they want to play or not and have that be respected.
Elizabeth Aquino says
You are one strong woman, and I am honored to know you and share and learn with and from you. Thank you.
A Ray says
Elizabeth. I learned it from you. So much love for you, Sophie and those boys xo
Ray Mirzabegian says
Thank you My friend. Great writing. I couldn’t agree with you more on all of it. Keep doing what you’re doing. Changing and opening minds. You’re awesome.
A Ray says
Ray how would our lives be different without you? I get sick at the thought. Love you forever and ever.
MaryLou Connolly says
Well said Allison! After 25 years and about that many meds I surely can say I’m mad at big Pharma and I’m furious at doctors who dismiss alternative/complementary treatment when traditional medicine is clearly not working. Kennedy May’s story is terrifying. We definitely need to band together—- there is great strength among us. Thanks for this thoughtful post!
A Ray says
MaryLou I am so grateful to have you and Michael here in our local community. I have learned so much from you both. I admire the way you always smile w one raised eyebrow. That’s my style too.
Stacey Rojo says
Allison - Fantastic view point! I read it twice and love how you articulately expressed how many of us parents feel. I am sick of being on the defense for loving and caring for my son! Thank you!!!
Rebecca peery says
❤️ This. So well said. Thanks for being such a big voice in this community and expressing how most of us parents feel. Kennedy May’s story is heartbreaking and so scary. I am so glad I chise miller children’s hospital instead of CHOC for Haylees care I could not imagine having to deal with this doctor or group.
Wow Allison, that was wonderful. So very well spoken. I come here from - A moon worn as if it were a shell, a long time supporter of dear, dear Elizabeth. And now I am so glad to add myself as a supporter of you and your wonderful blog.
This whole community is so much better for people like you who stand and add a clear and lovely voice to this so, so important issue. Thank you for further informing all of us out here!
Susan Pierce says
“Because by definition, intractable epilepsy has to be treated alternatively”.
That has been my mantra since I looked up the meaning of my son’s diagnosis. Why keep him on 6 AEDs and refuse to talk about an alternative. Thank you for putting into such eloquent words what I have been thinking all along!
A Ray says
Susan I’m with you. 6 medications. I’m giving that an “I’m so sure” because I’m going to venture a guess that that medication combination has worked for no one ever. Quality of life matters.
Wow!!! Awesome! Great writing and even greater message!!!!! You are simply amazing!
Great read my Allison. I thank you for your inspiration and for fighting with all of us. I’m glad to call you my friend and another Mom on a Mission!
Thank you for sharing, articulating & percolating on what is an interesting time in medical history. Perhaps that is always the case. You are one of the strongest women I know & an even stronger Mama. I am so grateful that you have had a community around you and that Angel is receiving love, support & alternative methods of care because of your open mind. Without openness we are somehow lost. May our voices continue to be heard, respected and perhaps one day honored even if it’s not the norm. Keep standing up sister. ❤️
Loved what you said and how you said it…