I was mixing the second of five concoctions that I would ingest that day. This cleanse was serious; five drinks and one colonic each day for five days. No solid food. Just water. As I stood at the kitchen counter, intently mixing bentonite clay, psyllium seed husks, apple pectin and peppermint leaf, I turned to see my husband staring at me with amazement. “Do you think I’ve gone over the edge?” I asked. “Well,” he began, “I just feel like you should be wearing a sari, not an outfit from the Barney’s sample sale.”
I saw his point. I had changed significantly since embarking on a journey that began in 2009 when, in an effort to stand in solidarity with my son as we dealt with his apparent GI disorders, I took dairy out of my diet. It was so radically beneficial for me, I went further. I helped myself by changing my diet in other ways, deepening my yoga practice and finding and releasing the great stressors in my life. Over the course of four years, I went from buying food only sold at my neighborhood co-op, to reading the labels at the co-op, to making many of my own ingredients in order to cut out additives and chemicals - even those generally deemed harmless. I also went weekly to a craniosacral therapist, participated in a yoga teacher training program, and started writing as a way to deal with the difficulties in my life. I came up with the idea for this blog in an effort to share the nuggets of knowledge I managed to pick up along the way with a community of like-minded people.
As most readers of this blog probably know, there are many of us out there; individuals with autoimmune disorders seeking answers and advice as to how best to cure, or at least minimize, our afflictions. We look for community to connect, share ideas and commiserate.
Meghan O’Rourke is one of those people, as she explains in her beautifully written piece that appeared in the August 26, 2013 New Yorker magazine, entitled “What’s Wrong With Me.” O’Rourke’s essay chronicles her struggles with autoimmune disease and the mysteries surrounding her illness. She is always aching, fatigued, in pain and confused about her ailments. She is unsure what is going on with her body and wonders how she can get the energy and strength she needs to get through the day. But she goes on to talk about a deep emotional side-effect of her journey – a fear that her efforts to heal and understand her body were altering her identity from person (perhaps with some mysterious ailments) to patient. She engages with other sufferers online. She completely changes her diet by eliminating many foods and she turns to a varierty of supplements, vitamins and minerals. She engrosses herself in the Specific Carbohydrate Diet for a month. She makes her own almond milk (no easy task), brushes her body to help stimulate her lymphatic system and rid herself of toxins. She swallows pills and liquids that can make one gag. It is very compelling and extremely familiar. And although it’s working – she is healing herself somewhat – she questions whether the incremental medical gains are worth the nagging feeling of obsession and seeming loss of self. Her excellent piece challenges us to look in the mirror and ask the questions she asked: have I gone over the edge? Am I letting all of this define me?
Those of us with disease do have choices. We can immerse ourselves in the world of the healing. We can read everything, connect to others with similar struggles, change our diets, our habits, our environments and open our minds to new therapies and answers so that we can change our bodies and live a healthier life. But along with that comes the risk of becoming obsessive about these ideas and driving ourselves and our loved ones nuts.
Of course, we also have the choice to do nothing, avoid change and carry the risks that go along with just living (in some cases for many years) with disease. In our efforts not to get sucked into the fanatical world, we can go on living a “normal” life and hope for the best.
We also have the choice to find balance.
O’Rourke chose to eat well (but not always following everything to the letter) while living her life and accepting her disease. I chose to immerse myself completely. I allowed my journey to unfold before me, taking me on retreats to learn about proper digestion , working with different healers and eating many different foods. All of this has worked wonders for me on a physical and psychological level. But when I asked my husband if I had gone over the edge, what I was really doing was asking myself. I realized that I might have been farther gone than I was emotionally healthy. For years, I had followed a strict diet and created many wonderful new recipes which I loved. But once I moved to Vermont and had more time on my hands, I went many levels deeper. Defeating illness became my life. That moment in the kitchen gave me pause; it alerted me that my ability to dive so deeply, while incredibly helpful and useful, could also be causing me to lose myself in a never ending quest.
The yogis say that just by noticing and acknowledging one’s behaviors, we can create the change we need. By acknowledging, out loud, that I was close to fanaticism I was able to see things more clearly as how to approach my illness. Yes, I continue to educate myself and encourage my family to try certain foods. I still watch what I eat and try new things. In fact, this week my son and I are eating soup, trying out the GAPS diet (so we can both possibly eat dairy again one day). But by taking a moment to pause, I was able to see this all in perspective. What came out of this for me was the importance of living mindfully and with intention to feel good both physically and emotionally. For me the key is focusing on family, friends, work, interests and hobbies - so that this disease is a part of my life, but isn’t it entirely.