The days became weeks, the weeks became months, the months became years. Diagnosis. Treatment. Educated trial and error with many medications. Life outside my little bubble continued, even without my active presence. When the initial wave of support subsided, I have to honestly say I was not prepared for the quiet that followed. I knew people had their lives to live. However, in the face of dealing with an illness and pain that became chronic and domineering, I was surprised that the support would not continue in the same way that it had started out.
In the first several months of my Migraine disease and New Daily Persistent Headache, I read a passage in the book, Walking With God on the Road You Never Wanted to Travel by Mark Atteberry. It reads:
Here we can draw a lesson from the redwood forests of California. Those giant trees can be as tall as three hundred feet and fifty feet in diameter. You'd think the roots of such behemoths would reach deep into the earth, but they don't. Considering their height, redwoods actually have very shallow root systems. What, then, is the secret of their survival? How do they keep from toppling over when assailed by howling winds? Simple. Their roots, though shallow are entangled with one another's. They are, in essence, locking arms and helping one another withstand nature's attacks.This was my idea of how my friends and family had been in the beginning. I had not toppled over in the winds of this disease because I had so much support and encouragement. Therefore, when I found myself very alone in my pain and suffering, I was longing for their presence again.
Chronic illness breeds loneliness. It comes along with the territory. I went through several waves of disappointment and sadness about the loneliness. I knew God was with me. But, I felt at a loss in understanding why I felt so alone. In dealing with my disappointment with others, I found that I had to readjust my expectations of them. I had expected everyone to be a "redwood" that was always strong and always there and always supportive. But the truth is that people cannot always be there.
In reading Henri Nouwen's Bread for the Journey, I found something that he wrote that really spoke to me. "We need to forgive one another for not being God." Even though I may want and need people to be supportive as I walk through this chronic illness, I cannot expect them to be there every time I need them. And I also need to give them grace and understanding when they are not able to be what I want. Of course no one is perfect. But, it is not about being perfect or not. It is about realizing that we all have limitations. We all have our own suffering, whether it be physical or emotional or financial or spiritual. Realizing, then understanding and then accepting others' limitations and just plain humanness is what I needed.
God is always with me. He is present in my suffering, which brings up a lot of difficult questions. Despite all my questions, I know for sure that God loves me and that He is walking this road with me no matter what.
Time, prayer and angst have brought me to the realization that the redwoods spoken about in Mark Atteberry's book aren't necessarily a set group of people. They change and transform constantly. And that is okay.
It takes a village to support a person with chronic illness. A phone conversation with my dad. My mom sitting quietly at my hospital bedside. A shout-out from my brother and sister-in-law. Facebook posts from long-lost friends. My mother and father-in-law spending weeks doing household chores, cooking and running errands. MyMigraineConnection buddies who lift me up and encourage me and let me know I can do it. Rotating friends coming to sit and be with me in my pain. An old co-worker who cooked me meals and took me out of the house to get a massage. A friend with Migraines who calls me. Friends who pick up prescriptions for me. Cards and packages from an out-of-state friend. My dad's cousin sending me a note. Old friends with listening ears who send encouragement. A fellow Migraineur who knitted and sent me a heart that I can hold in my hands and remember I am not alone. My husband's steady and unwavering support, love, grace, and presence.
For a long time, I thought I was alone only to be recently surprised to see the redwood forest that was always there. This is not to say that chronic illness is not lonely. It is. There is a lot of time spent in the quiet of my bedroom. However, in adjusting my expectations of people and realizing that support is a revolving door, my eyes have been opened to the surprise that the reason I am still going is because many people are in my life and that God anchors us all together.