It has been five months since my last cookie.
Even before hearing the official diagnosis, I knew the jig was up... that whatever was happening inside of my body probably wasn't going to improve if I kept up my relationship with sugar. And processed flour. And caffeine. And most importantly, with stress... or rather, the way I react to stress.
I was embarking on an anti-inflammatory journey. Giving up way more than I had ever bargained for.
I haven't touched alcohol in over a decade and tobacco even longer. I've always eaten a pretty wholesome diet, give or take my religious devotion to chocolate. I exercise and get 8 hours of sleep every night. Based on lab work, physical exams, ultra sounds, X-rays, and the results of an EKG, my doctor says I am a model patient.
Yet no one in the medical industry can explain why my immune system is attacking my liver. Until science ups its game, this disease can lead a patient down two roads: drugs that make you feel like shit or co opting some dead guy's liver. Worst case scenario, it's both. Luckily I'm not there yet.
A low white blood cell count is what initially alerted my doctor to run tests which led to more tests that eventually brought me here. I have been down this path with so many of my clients that I feel like I'm at an advantage. I know how to slow down the progression of this disease holistically, and yet it doesn't change the fact that I will have to live with it for the rest of my life.
That's the tricky part. Accepting that aspects of my life will never get back to "normal".
"Isabelle, if you want me to wear black and mourn the death of white sugar and white flour with you, just say the word. I know this is hard," said a friend.
It is hard to give up socially encouraged reward systems, instant comfort, and self soothing tricks you've relied on for the last forty something years. It's also hard to re-train your impulses. In the face of challenge, when your heart is racing and your bowels are clenched, it seems counter-intuitive to pause, slow down and breathe. Because when your brain senses danger your instinct is to speed up, hold your breath, and go numb. Even when the danger is only in your head.
Everything, that for so long has been your intuitive response to life, is now suspect as the cause of your auto-immune malfunction. White sugar is not your friend anymore. Caffeine can't fix the tiredness that is your soul. That person who six months ago didn't seem like a problem is suddenly wearing you the fuck out. And all the things you used to pretend were okay are now not okay.
Saying no to a cookie is hard. Not reacting impulsively to a crisis while a long-standing neural pathway is being re-routed through mindfulness techniques... that, my friends, is Jedi level. But like most kids born in the 70's, I truly feel with all my being that I am Jedi material so at least there's that.
There is a saying that goes, "When life gives you lemons, make lemonade." And though it sounds good, it's not that simple. Sometimes you need to feel the stages of grief when you lose something before you can apply the alchemy.
I'm using this as an opportunity to explore the roots of auto-immune illness which I believe are linked to the way we are trained (or not trained) to cope with stress, tolerate frustration, experience anger, take care of ourselves, and survive in a world where, let's face it, conflict, unexpected change, and trauma will always exist. We humans may not like it, but we're going to have to accept that those things are part of the deal. Change is inevitable.
I'm trying to lean into the experience. Accept that this is my life, now. That in this moment I have no control over anything except the way I respond. Getting my ego out of the way is the first step. I'm powerless over this shit. I didn't cause it, and I can't control it. I also don't need to be model patient in order to be "good". All of this, like so many things, is a big lesson in surrender.
"Lemonade... that cool refreshing drink."
I suppose I am making lemonade. Not Beyonce's chic and glossy Lemonade, but Eddy Murphy in a red leather pantsuit from the 80's pacing up and down the stage impersonating Elvis lemonade. And that feels pretty good, despite the fact that mine has to be sugar-free.
So I had my follow-up appointment with a liver specialist last week.
"I'm not going to start any treatment yet. Just stick to what you've been doing, and come back in three months," says the nice lady at Tulane Organ Transplant Center.
Time. What I've been doing is buying myself more time.
In future blog posts, I'll be writing about things I feel might be helpful to anyone on a similar healing journey. But before any of that happens, I needed to be okay saying I have this thing. This chronic dis-ease. And I needed to believe that it doesn't make me defective. That I am not a fraud posing as a healer because I have something that is one of the most common and misunderstood epidemics of my generation, affecting more women than breast cancer or heart disease.
"While 2.2 million women are living with breast cancer and 7.2 million women have coronary disease, an estimated 9.8 million women are afflicted with one of the seven more common autoimmune diseases." -Donna Jackson Nakazawa
I'd love to de-stigmatize the word disease and to provide an emotionally safe environment for my clients to share their journey, which can often be isolating. The more we connect and empathize with each other, the better we feel. This philosophy has been the foundation of my professional practice for 18 years. It's the walk I am committed to.
But talking about your disease with friends and loved ones can be hard. I, myself, needed to cocoon for a while. To get used to the idea of living with something that most likely will never go away. Like with any major transition in life, I needed time to adjust to my new reality without the pressure of a million reactions and well-meaning opinions. I have a lot on my plate, and it's my right to take care of myself in the way I need... apart from the needs and demands of others.
"We are human. Of the nature to grow older, to get sick, and eventually, to die." My therapist Nancy, who often reminds me of Yoda, shared those words with me, and they are actually quite soothing.
While I don't like to think about aging, illness or death, it's been a relief to face such a giant a fear and retrain myself to believe nothing terrible is happening. That's an old, fearful perception that was planted by someone who, unlike me, didn't learn from the moon and the trees that everything comes back eventually. My goal is to learn how to adapt to these new circumstances, and override my egoic urge to be the exception. Being part of the pack, embracing life as a moment to moment gig, feeling my feelings. That's the approach that feels most sane to me.
It's summer which used to mean fruit pies, tarts, and jam. But I'm a Jedi in training now, and who knows what the universe might be preparing me for. Life is crazy and anything is possible. Nothing ever stays the same, and that's okay.
Anti-Inflammatory Chai aka Jedi Fuel (not lemonade, sorry)
1 TBSP each:
1 stick Cinnamon
2 TBSP sliced fresh Ginger root
1 TBSP sliced fresh Turmeric root
Using a 2 or 3 qt saucepan, bring water to a full rolling boil and then add spices. Lower heat to medium and simmer for 15-20 mins. Turn off heat, cool and strain to drink. You can use coconut milk and a little honey (about 1/2 tsp) to sweeten, but it's good just by itself. You can listen to Bob Marley's "Simma Down" while you chop the ginger & turmeric. You'll feel like a true Caribbean kitchen witch.
When we don't trust that who we are is good or enough, it sends a message to the body. And when those messages are constantly reinforced they eventually become lodged in our tissue, often manifesting into chronic dis-ease.
Culturally, we've also absorbed traumatizing messages around self worth. When I look at what's happening in our country today, it looks like a large scale healing crisis. I am, among many things, a healer, and therefore I view the world through that lens. Right now I see dis-ease spreading like wildfire in a society that is overwhelmed and exhausted by its search for external validation.
We are looking on the outside to feed what feels empty or lost on the inside (if you can't relate, consider yourself privileged). There is a saying that money, property and prestige can't fix our problems, but the blind pursuit of them and the feelings of inferiority for lack of them may create bigger problems.
The path to a healthier society begins with us. Once we've established a core sense of integrity and value we can extend this healing into our families, communities, and so on. We can share our resources- material, emotional, and spiritual- with others. We become stronger and more integrated.
This is the season that celebrates a revolution of the heart, the fire that ignites all revolution. May you rekindle your flame this Beltane and carry it wherever you are. The world needs more light and courage.
Six years ago I said goodbye to my old life. I took what belongings I hadn't stored, sold, or given away and packed my station wagon to the gills. I'm a good packer, but I still had to leave things behind. This made it imminently clear to me what was important and what I could do without. It's amazing what we think we need vs what we actually need.
Throughout the years, I've gotten even better at scaling down and simplifying. Everything from the stuff I own to beliefs about myself and the world. I often have to ask, "If it's not serving me anymore, is it worth hanging on to?"
Sometimes I catch myself wanting to go backwards. To revisit a way that once felt safe and familiar. But life has a way of steering us forward if we're willing to stay the course.
Over time, this little ritual in self reflection and honesty has helped to cleanse my life of unnecessary baggage. But before I let go of something or someone (because let's be real- sometimes we grow out of relationships) I had to learn the value of blessing the endings.
Endings aren't popular in our culture. We are taught to hold on to almost everything, but if that weren't the case and we were taught to honor the beauty of completion, we might celebrate and move forward with a free conscience, ushering in new energies with joyful anticipation. There is a lot to be said about making peace with the past. Not forgetting, but letting go.
Every spring what once seemed like an ending transforms into a new beginning. The mysterious process of death and rebirth, of letting go and receiving... is the heart of the mystery, revealed. And all we have to do is trust the process.
Until your next appointment, may your endings be blessed and your springtime be joyous.
I'm sensitive. Ask anyone who knows me, and I'm sure they'll agree. For a long time my sensitivity felt like an albatross, something to be ashamed of. It's only been in recent years that I've been able to acknowledge it as a gift.
I gained my empathic skills growing up around people who, for the most part unknowingly, trained me to build my sensitivity around their needs. As a result I became a keen observer. Learning to identify my own needs happened much later in life. In the interim, I developed an identity around helping. I attracted wounded people and relationships based on that role and eventually made a career out of it.
One day someone pointed out that perhaps my role wasn't my true identity. That taking it on and making it my "job" helped me as a child, but if I wanted I could choose to be someone else as a grown up. I didn't need to be a helper to be good or loved.
Which leads me to my next point: saying no and hearing no.
In our culture, relationships are built on yes. And just like improv comedy, the scene tanks when there's a no. Yes is a rush. Literally, adrenaline and dopamine course through your veins when you hear it. A green light that promises instant gratification.
But yes alone doesn't build connection and trust. Yes alone can't sustain intimacy.
In my early relationships honesty was too risky. Yes was the only choice I thought I had. No was equated with selfishness, rejection and failure, and I did everything in my power to avoid it. By saying yes I learned to protect your ego even if it meant compromising mine.
I wasn't lying to hurt you. In fact it was the exact opposite. I couldn't stand the thought of hurting you because, again, in my belief system saying no was hurtful. So I said yes and became dependent on the gratification of giving you exactly what you wanted.
I had coffee with a friend this morning, and she said, "I'm starting to feel more okay with people being unhappy with me, and that's been so freeing."
I can totally relate. The day I felt good despite sensing someone's disappointment was the day I got my freedom papers. My therapist named it fierce self compassion.
Not long ago I was diagnosed with an auto-immune disorder. It came as no surprise. The truth is, I had been anticipating the news for some time.
Western medicine doesn't understand the underlying cause of auto-immune disease so it can only treat symptoms which stem from chronic inflammation. The inflammatory response is the body's first response to stress. It attacks anything perceived as a threat. When this life saving function is ongoing, the body begins to perceive itself as the problem.
As a practitioner in the alternative healing industry, I've worked with scores of women living with chronic auto-immune disorders. Hearing their stories always struck a chord because they were all HELPERS in one way or another, and they had all experienced some form of trauma in early life.
Studies have proven that gender plays a significant role in the development of autoimmune disease. This isn't surprising to me. Historically girls are more likely to be groomed for codependent roles and to uphold an image of perfection. Part of the image includes not losing your composure or exposing unpleasant feelings and thoughts, thereby encouraging self-editing.
“I'm not a mess but a deeply feeling person in a messy world... when someone asks me why I cry so often, I say, 'For the same reason I laugh so often- because I'm paying attention.' I tell them that we can choose to be perfect and admired or to be real and loved. We must decide.”
-Glennon Doyle Melton
The most crucial thing that anyone in a healing process has to learn is self compassion. Listening to my clients has given me valuable insight on this so when the tables turned, I had to become the client and practice what I teach about boundaries, compassionate self-talk, and asking for help. I had to get used to the initial discomfort of emotional honesty and to risk being less popular when I wasn't self editing.
Because self editing is self harming.
I needed to feel what it was like to be the inconvenience, to make mistakes, and to live without apology.
I also knew I had to change my behaviors in relationships that felt like work so that I could experience the joy of real connection. And sometimes I had to detach from a relationship if changing my behavior wasn't enough.
In a nutshell, I gave myself more choices.
Because having a choice means I get to trust myself and trust you. I'm trusting you not to make it personal. Not to punish me, silence me, or withdraw your love even if it changes your plans, inconveniences you, or hurts your feelings (which I do care about).
I get to learn what self care means for me and what it means for you. That when we give each other the space to take care of ourselves our relationship feels more secure, and it becomes easier to take care of each other.
Sometimes self-care is saying no. And no is not maybe. It's not an invitation to change my mind or negotiate. No doesn't even mean something is wrong. It's simply telling you that what you want is different from what I want.
I'll end with this.
I believe the physical and the spiritual move at different speeds. On the surface we appear to be flesh, bone and blood... dense matter. But all matter breaks down into hierarchies of information constantly arranging and rearranging. The body listens. And when the body speaks, we should listen.
So I challenge you to join me on this journey by asking yourself, "Where does it hurt, and what do I need?" And meet yourself there. Meet yourself, and listen well.
“Out beyond ideas of wrongdoing
and rightdoing there is a field. I'll meet you there.” -Rumi