By Karen Samski
It takes some of us longer than others to admit that chronic illness changes life as we know it forever. After a diagnosis of dermatomyositis in 2008, I decided I was going to be the exception to the rule.
Two obligatory years on prednisone, and I am going to be done with this thing. Period. Finito. More than remission, complete healing will be my story.
Of course, starting treatment with 60 mg of prednisone daily may have influenced my euphoric declaration just a tad.
I hit the ground running, metaphorically speaking, from my wheelchair. Mind-body-spirit, allopathic-holistic-integrated, I’m in to win it. Out of the chair in six months, aquatic physical therapy three times a week, exploring the underlying emotions and relationships that helped shape my physiology - I give it everything I’ve got.
Two years later, I’m off prednisone! I feel awful, but I have a date with healing. At this point I’m willing to settle for a date with healing’s brother, remission. Neither one shows up at my door, and even if they do, I can’t get up to answer.
It’s worse than when it began; not only am I back on 60 mg of prednisone, but I begin taking methotrexate. No change. Nearly 1g of Solumedrol … nothing. Blood work reveals I’ve lost half my blood volume, so it’s a ho-ho-holiday in the hospital.
The blood transfusion works, and curiously, the Demerol sedation for a colonoscopy breaks the pain cycle. I go home in a wheelchair, but I feel better than I have in months.
In January 2011, I start bi-weekly intravenous immune globulin (IVIG) therapy. It is the beginning of a physical transformation. I’m out of the wheelchair by the end of the month. Hallelujah! Where have they been hiding this stuff? It’s is a new chapter in my healing story.
I continue my wellness regimen as before, and later in the year, I begin Kundalini yoga classes taught by a good friend. Kundalini yoga is the yoga of awareness and experience. It explores your own nature and creative potential as a human being with physical postures, breathing, meditation and chanting. This awareness becomes a personal guide, encouraging you to look within yourself for support and strength to get through the daily grind, as well as very difficult life events.
We start with restorative yoga, which is a method using props and long hold times to open the body in a more passive way. I feel safe and nurtured.
We add simple healing meditations, and slowly introduce physical postures (asanas). I feel a connection with my body that has been dormant for three years. I think it’s a connection I never really had before dermatomyositis and Kundalini yoga entered my life.
There’s another nascent transformation emerging with my body and my emotional and spiritual self. I start to rethink my relationship to this illness. It takes so much energy to fight, to make the illness and, therefore, my body the enemy. I become willing to embrace what is.
Not a sugar-coated single-minded optimism that I believed was mandatory and that meant denying my full range of emotions. My willingness is becoming a desire to have a compassionate relationship with myself.
Dr. Gabor Maté describes acceptance and “when the body says no,” as “the willingness to recognize and accept how things are. It is the courage to accept negative thinking to inform our understanding, without allowing it to define our approach to the future.… It does require a refusal to deny exactly how things happen to be now.”
I feel lightness and liberation just reading that.
In early 2012, my rheumatologist uses the “R” word for the first time. Remission! No more IVIG, and I start reducing the prednisone s-l-o-w-l-y. Once I drop from 7 mg to 6 1/2 mg, I “flare.” That term does not describe the free fall I experienced. My numbers have always been atypical and never accurately reflect the severity of the disease.
The “flare” is a test of accepting what is without projecting the past onto this moment or the future. I maintain my daily Kundalini yoga and meditation practice to the best of my ability. Restarting the IVIG brings me stability in a couple of months.
It’s taken five years. My first stable year is 2013!
I move from private Kundalini classes to studio classes. I continue to develop strength and flexibility I thought I would never have again. I adapt most postures, but that’s OK because intention is the most important thing to bring to the mat.
The integration between my body, mind and spirit has indeed changed my life. I need to share it with others like me. I took a giant leap of faith and entered the 10-month Kundalini yoga teacher training course in January 2014. I am now a certified Kundalini yoga teacher.
The qualities of transcendence from this practice are ineffable; you know it when you experience it, but cannot describe it. The tangible benefits beyond the physical are that I’ve challenged and discarded belief systems that no longer serve me.
I now truly believe I am “good” enough to be whole just as I am. IVIG and 8 mg of prednisone daily, I live a happy, healthy and wholly aware life. That is my story of complete healing.