At one point during my illness career, my best friend dragged me to a 4 night conference to listen to a Buddhist Llama. I had just lost a good transplant buddy and was feeling sorry for his death and my own physical crosses to bear. If you have ever heard a Buddhist Llama speak, you know that they tend to say the same thing over and over again. It may sound boring, but it usually is quite powerful. Llama Zopa began by repeating the phrase “Happiness comes from the inside”. I nodded my head in complete agreement. Here in the west, we have accepted that money, fame and material possessions can not fulfill a human heart. (Despite this, we spend plenty of time and energy striving for those exact things.) “Happiness comes from the inside”. Yes, I was in complete agreement that my own happiness comes from my love of life, myself and The Divine. “Happiness comes from the inside”. Certainly, yes!
Suddenly, however, the phrase changed and my head was no longer nodding in agreement. “Suffering comes from the inside”. What? How could he say such a thing? Does that mean that I have chosen to suffer the difficulty and pain of all of my body’s maladies? “Suffering comes from the inside”. How dare he suggest that my suffering is something I could control! My suffering comes from a physical ailment that was given to me by a genetic twist of the DNA. “Suffering comes from the inside”. What an insult to me and those that I love who have dealt with serious illness. No!
It took me a few weeks to understand what he was talking about. He was talking about the difference between healing and medicating.
When you have been given a terminal diagnosis, hopes of “getting better” eventually leave your mind. I was suffering under the weight of all that it meant to die so young. I didn’t know what to do or where to go for guidance. There aren’t any brochures in the doctor’s office on the steps to accepting death at 29.
One night I was sitting in front of a glass door. I was crying and looking out into the dark night. At one point, my vision shifted and I was no longer looking outside but at the image of myself reflecting back at me. There I was, Tiffany, a young woman with red hair in a green shirt crying and thinking about death. My image was translucent and I could see through it to the trees behind the door. As my eyes danced back and forth, I saw meaning in this reflection. This girl, the one with red hair and a green shirt, was temporary, so temporary she was merely an illusion. “Tiffany” was the name given to her but in no way described her entirety. This reflection was a perfect representation of the reality of my existence. I was able to see my physical presence and my eternal self all in one. It was that night that I was able to say goodbye. Goodbye to the physical image, the red hair, green shirt and the name “Tiffany”. I was also able to embrace the part of that image that I was not able to see with my eyes but feel with my insides. The permanent, translucent part of me that has no name or hair color. With that exercise, I was able to let go of the ideas of medicating my illness. The part of me that felt broken because I had to say goodbye was healed because I was able to see the truth. “Tiffany” is only a part of me, there is so much more that I can’t see that will be rediscovered on the other side.
I have been diagnosed with chronic rejection twice; once it progressed and nearly took my life and the second time it stoppped progressing and stabilized. Each time I asked myself the same question; "How do I live now?". I had to began the process of shifting from long-term thinking to short-term thinking. I had made plans. Plans for my career, plans for my marriage, plans for buying a home, plans to become a "normal" person in our society. When I found myself facing death again, my long-term plans seemed almost silly. Why was I working so hard? On my last day, would I look back on my life and wish I had worked harder? Of course not. I began to design a life in which my relationships took priority and my ambitions no longer revolved around career goals.
While this process has healing elements, it can be a difficult transition. It’s like the peeling of an onion. One by one, the layers of my life unraveled and I gave something up. It started by quitting my job and then, as the illness progressed, I had to give up a hobbies and eventually, I would be giving up my independence. This was a painful process.
What is wonderful to know is that after all those layers are gone, you are left with only the core. The sicker I got, the more I could actually feel the separation between my body and my mind or spirit.My core was never sick or tired or even scared. I found out that my core is an indescribable, un-namable part of my being with no adjectives or duties associated with it. This is one of the greatest opportunities of illness…to transform the Illness Identity Crisis into the deepest knowledge of oneself. Inner Peace.
There is great healing in knowing who you are without any lables. I could have chosen to focus on what I had given up: my job, my hobbies, my independance. This would have allowed me great suffering. Instead, I was eventaully able to focus on what I had gained: a new understanding of my own soul and a deep appreciation for those I love. This filled me with great happiness.
Healing is something that can be done no matter what the physical diagnosis. When we bow to the skills of our medical team, we think that we are asking for healing. In fact, what they have to offer us is merely medicating. Ideally, we would incorporate both into our lives. Let the trained professionals do the poking, prescribing and cutting. It is the patient’s job to do the healing.
Many people pray for and some experience miracles of unexplainable recovery from illness. What I learned is that there is another kind of miracle that is not nearly so dramatic. That is the miracle of learning to love life despite serious disability or terminal illness.
I may have been trapped in a body that wasn’t going to be cured by a miracle, but it was up to me to decide if I wanted to stay trapped in my self made prison or to escape the bars through self love and by learning the lessons this broken down old body had to teach me.
In time, I learned that the illness wasn’t my choice but whether or not to suffer was. If I were listening to Llama Zopa today, I would surely be nodding my head; “Happiness come from the inside. Suffering comes from the inside”. Certainly, yes!