Claire is one of my most motivated, committed, and courageous students. Mindfulness practice can bring about relief and ease, and sometimes it shows us, with terrifying clarity, just how much we are suffering. This is where self-compassion and acceptance comes in. As the Buddha was known to say: pain x resistance = suffering. Well-known author and meditation teacher, Tara Brach, adds to this equation: pain x a loving, embodied presence = freedom. Claire is a living example of the benefits of being kind to yourself:
What brought you to MBSR?
My history of generalized anxiety, depression and insomnia started when I was a young teenager. At the same time, my body started experiencing intense neurological symptoms including severe pain that left me bedridden for weeks. I danced ballet growing up, but in my early teens I could no longer sustain the physical exertion. I started down a dark spiral of pain and mental illness. My condition eluded specialists for 19 years, until I found myself hospitalized at Mayo Clinic and finally, finally received a rare disease diagnosis of acute intermittent porphyria (AIP) at age 32. AIP impacts my autonomic nervous system and causes anxiety, but it was important to me to try and gain some sense of control over my condition. AIP also impacts my central nervous system, leading to unspeakable pain, paralysis and neuropathy, so when I was diagnosed, I numbed out from my physical being in order to survive. I was told my symptoms were in my head, so I started believing it. Learning mindfulness was a way for me to connect to my brain back to my body, and take my power back.
What did you discover about yourself during and/or after the course?
In connecting back to my body, I discovered that I was in far more pain than I ever realized. Body scans were terrifying for me initially, I did everything I could to avoid being with my body in stillness. Now, I am able to listen and respond to the sensations of my physical being. Additionally, I learned to identify the emotional causes of my racing heart beat and define the thoughts around the feelings. I learned the awareness of my anxiety is not an anxious feeling.
Why do you continue to practice mindfulness? What are your deeper intentions?
My mindfulness practice is a nourishing time, it’s a stillness I crave and carefully cultivate, so as not to slip too far off track. Mindfulness helps me find joy in uncertainty and find depths of compassion for myself and others. Being in stillness within made me realize that it’s not about what I want to accomplish in this life, but the kind of person I want to be doing it. Mindfulness has lifted a lot of my obligation to strive and do and achieve, replacing it with an inward focus.
Has mindfulness changed how you live or your outlook on life? If so, how?
Without hesitation, yes. I had residual terror carried over from living undiagnosed with such a painful illness, and medical trauma from being dismissed over and over again by my doctors. I’ve seen a therapist for all of these things, but I couldn’t let go of the shame until I found my own mindfulness practice that works for me, through MBSR. Through daily mindfulness practice, I can focus on the present and I live without a blanket of grief and judgement related to grieving my past life and being a burden on society and my family.
What do you do for your career, hobby, volunteering?
I am a full-time porphyria advocate! I write about porphyria on a weekly column at PorphyiaNews.com. I speak about acute porphyria, being a woman living with an undiagnosed disease and learning to self advocate. I co-founded This Porphyria Life, an online community for porphyria patients, caregivers and advocates. I participate in national rare disease advocacy efforts through National Organization for Rare Disorders and Rare Disease Legislative Associations.
To learn more about Claire, go to: DaringlyClaire.com.