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.