In my Chronic Illness Manifesto, I make the case that:
Chronic illness does not need to result in a miserable, meaningless life. You *can* feel better, and live with purpose and joy.
And I committed to writing more about each part of manifesto. In this post, I want to discuss the importance of faith in a higher power or higher purpose. As I wrote in the first part of the manifesto,
Though faith in a higher power, or higher purpose, spiritual practice that brings insight, and reaching out to others who suffer, you can gain perspective on your own suffering and find joy and meaning in life.
I had previously defined my purpose by what I could do; what I could accomplish in the world: Raising children and all that entails, helping them learn through homeschooling and other activities, even simply being able to put a good meal on the table were tasks that gave me purpose. Certainly serving various churches in interim ministry gave me a strong sense of purpose, as I planned Sunday services, wrote inspirational sermons, visited the sick and lonely, and worked with people on preparing for the arrival of a new, more permanent minister.
Even delivering newspapers in the early morning hours gave me a sense of performing a job that was useful, gave me some exercise and fresh air, and paid enough to help cover our family’s expenses.
I was sick and getting sicker. The best the doctors could do was to diagnose me with depression, and prescribe antidepressants, or to check my thyroid levels yet again and adjust my medication if needed. And immediate family members kept getting sick with terrible and scary disease, like ulcerative colitis and leukemia. And the resulting stress only made my own symptoms worse.
Antidepressants did help with some things. Some gave me a bit more energy. Some made me not care that I was miserable. And I didn’t realize it at the time but they helped with that mysterious symptom that happened when I laughed. Sometimes my knees would buckle when I got to the punch line of a joke or laughed, a symptom of narcolepsy called cataplexy. I didn’t realize that taking antidepressants made that go away.
At the worst of the symptoms of my undiagnosed chronic illness, I could barely get out of bed. I was so sleepy that even the 10-foot slog to the bathroom to use the toilet seemed like a monumental undertaking. Forget about cooking, cleaning, or driving the kids to their homeschooling activities. It seemed all I could do was sleep. I could not even read, because reading just made me fall asleep again. I listened to audio books, but would fall asleep after a few minutes, and lose my place as it continued to play for an hour or two.
I would wake for a couple hours, then feel myself dragged under by a tidal wave of sleep, to spend the next couple hours dreaming. And when I was awake I felt completely drained and unmotivated.
My Christian faith was not a lot of help to me at this time. I could not make it to Sunday morning worship services, nor participate in any real way. And no one ever called or emailed to find out why I was not there. As a minister, who could not work in ministry, I felt that I had failed in my calling. I certainly believed in a life after death of some variety, but had no real insight into the point of this life, when I could not do anything. Reading scripture could be meaningful, and even comforting, but I wanted to live. Out there. In the world, and not inside my own head.
In my search for answers, I found myself reading books written by mediums like George Anderson and Maureen Hancock, “The Medium Next Door.” I had always been interested in near-death experiences and what they might teach us, and found great comfort in the perspectives of various mediums, who talk to those who have passed on. The message I got from my reading was that we are here, in this life, to learn specific lessons, and all our life experiences work toward that end. According to Hancock,
Coming into each physical lifetime, we have a set of goals to help us reach our highest vibrational level (some call it “enlightenment”). The most basic challenges and lessons we must face and learn involve loving unconditionally; letting go of unwanted anger, guilt, and hatred; being nonjudgmental; acting kindly toward all; volunteering and sharing; being honest; and working through fears.
What on earth, I wondered, is my life trying to teach me? What could be learned through the misery of chronic illness, with its isolation and grief?
When my husband was going through treatment for leukemia, I had attended a cancer support group. What became clear to me in this group was that people going through cancer treatment can either become more self-centered or they can become more compassionate and giving. With my own illness, I wanted to a part of the second group.
Slowly I came to see the illness, whatever it was, as a force for positive growth in my life. I was indeed becoming a more compassionate person. I realized that, though I felt all alone, that there were many people like myself who were going through similar trials. And, even if I could not work in ministry, there were small ways to reach out to others.
Part of the increasing compassion was learning to take a more loving and compassionate view of myself, in light of living with an illness. I had to learn that I was a valuable, even lovable, human being, even if I could not earn money or hold a job, or even do much of anything. Even if I was the worst wife or mother ever, because all I could do was sleep. We are all valuable just because we exist. Many need to hear that message. My Christian faith had taught me that there is nothing we can do to make God love us more, and I started to actually believe that each of us is lovable, just because we are alive. And we need to learn to love ourselves most of all.
Learning about my own value, apart from what I did, was a huge life lesson. I did find things to do, though. Some actions seemed quite small and insignificant, like clicking on the Greater Good websites to donate a small amount to various charities. Or signing online petitions for causes that were important to me. I could also pray for people, as well as for myself. And I could engage with people in online forums and offer small words of encouragement. In time I would be asked to become a moderator of a few online forums relating to different chronic illnesses; a job I did willingly, if imperfectly.
And I could keep putting one foot in front of the other and keep trying to find answers about this mysterious illness that was beating me down. I could see one more doctor and ask one more question. I came to understand that the human will to survive is amazing, and that admitting defeat was not possible. Eventually that drive to find answers paid off, and I was diagnosed with narcolepsy with cataplexy. But that is a different post for another day.
I truly believe that we are spiritual beings having a human experience, and when we connect with our souls, we are led to find answers and purpose for our lives. How about you? Have there been times in your life that you seriously questioned your purpose, and what led you to find it again? Please comment below.