By Fran Houston
Sometimes I wake up. Sometimes not. I hold onto the bed for dear life. I am familiar with the night and its darkness. As a child I lived in the basement of our house as a mole does in his tunnel and could navigate through the narrow path of jagged, stacked boxes to the bathroom in the dark. The lights didn’t work.
Wrapped in my blanket of night, I am safe and warm. In the night are dreams. Dreams of all the things that can’t be done in my body because of its restrictions of fatigue and pain. I indulge my soul’s longing to fly.
The day hurts my eyes with its stinging brightness. Music hurts my ears with its loudness and overstimulation. I like the quiet of night.
I have chronic fatigue syndrome, fibromyalgia, and bipolar disorder. They operate as independent sine waves. At any time, I can be exhausted and manic, energized and depressed. Every combination imaginable. The cycles can last for days or months or even years. It’s an odd assortment.
I had a mate. I had a family. I had a home. I had a career. I had a dog. I lost them all.
I made $14,000 in the last week I worked in the real world as an electrical engineer. Now I barely make that in a year. Fifteen years ago, I paid tens of thousands of dollars to get my health back, conventionally and alternatively. It took ten years to get an accurate diagnosis. Treating bipolar with antidepressants makes it much worse. So not fun to have cfs and fibro creep in alongside.
I finally went to the backwoods of Maine for a year and lived in a camp on 189 acres with no running water and no electricity — an attempt to find my baseline, fight my demons and find the night, or die. No TV, no radio, no books, no writing, no nothing. Just me and myself, grapes and garlic. I danced naked in the woods in the pouring rain. I shoveled snow thirty feet out to the outhouse to go to the bathroom. I made snow angels under the full moon. I watched frost form on the windows. I gazed for hours at the cherry wallpaper. I slept twenty hours a day. I dropped each thought as though dropping a hot coal. I’d think the same thought again; drop the thought again, over and over. I would not get up until I felt the internal impulse to do so. I fasted. I had a sauna each week — the only excursion besides getting water from a spring. And successfully navigated men who were intrigued and unsavory. I reached the edge of madness. I waited for the Jesus experience. There is no god; there is just life that flows. There is no hope. That was the beginning. Stop the search. For god. For healing. Just stop. The maple tree doesn’t want to be an oak. They are what they are.
I moved to an island off the coast of Maine in September 2003. My dad died that Halloween night — the night when the veil between the world of the real and the unreal is thinnest. There was an aurora borealis that evening. Beauty without effort.
I lost my mind. Consumed with thoughts of jumping off the boat, a frustrated friend asked, “Why don’t you?” I panicked.
I found the psychiatrist I still see now. He doesn’t see anyone anymore, but the deal was that I agreed to be in a fishbowl where he trained six to eight other psychiatrists for twelve sessions, and then I would have him for life. He is very conservative with meds, which I am very grateful for, although at times it’s enraged me. I think that psychiatrists nowadays are too pill pushy. Meds take a long time before you can see any results. One has to courageously wade through a myriad of side effects. He also is very relationship-oriented, which few are. He is respectful of me as a human being not just as a patient. Also, making an eye-to-eye commitment to him to stay alive has been a critical component of the process.
I began intensive group therapies. I got pissed off a lot. It was a full time job. I was exhausted. I was depressed. Having to do all this work. Needing to do all this work. No hope of getting better. Homework. It was worse than Engineering school. Cognitive Behavior Therapy made sense though. Event. Feelings. Thoughts behind feelings. Change the thoughts. Huh. Seeing others who’d been stuck in their ruts changing. Me changing. Huh. Not so depressed. My mind actually thinking thoughts other than depressed ones. How refreshing.
Chronic fatigue syndrome can mean days or months bedridden. Or can be as simple as feeling like there are cotton balls behind my eyes and mud running in my veins. Pain is always present. I take Advil when it is too much, or something else. I see an osteopath, acupuncturist, and chiropractor regularly. Once when I was at dinner with a friend I fell asleep. They ushered me out of there swiftly. I’ve been propped up in lazy boys in the corner with a blanket at parties just to be able to attend. Then again friends have broken up with me because of my proclivity to say no, or act strange. As a fellow cfs-er puts it, “I feel minimally crappy today.”
Bipolar I is like mowing the lawn in the winter naked. I have bipolar II. An example of my mania is when I was out in front of my home on the phone talking wicked fast with a depressive friend, and I was frantically picking the heads off dandelions while every square inch of countertop in my home was littered with furiously ink-covered yellow stickies full of ideas and things to do and be and dreams. I am like a pit bull with a bone. Another example is when I found out about the United Nations International Day of Persons with Disabilities on December 3. I found out that VSA (Very Special Arts) out of Washington had a video that would be shown in seventeen countries internationally. My mania launched me into a full-blown attempt to notify media and government outlets seeking coverage for this event. I sent cryptic, confusing e-mails and was very agitated. I wasn’t very successful, and thought that those who I contacted thought I was a nutcase. I felt like a mouse when a cat is playing with it and then the mouse just lies there stunned.
Depression was my best friend, the one I was most comfortable with. It’s been a lifelong companion. A favorite blankie. The one I return to for wisdom. Deep and dark. I remember the pain of trying to wash a fork amongst all the dirty dishes in my sink, wrapping myself in a blanket, wearing clothes that hadn’t been washed in a month, then opening a can of tuna and sitting on the cold floor to eat it. I told a depressed, suicidal friend once that it took more courage to make a cup of tea than to kill yourself. I still do have a stash of pills because I do feel that people should have that right, especially when you are old and everyone else is making decisions for you.
The problem/blessing with my illnesses is that they are unseen by the naked eye. “But you look fine,” is the response, as if arguing with me would help. I was going to write my behind-the-scenes story in the Island Times. I talked with a friend about it — a friend who I had “iguana-sat” for during a time of deep depression, where basically the “iguana” saved my life because I had to feed it every day and felt responsible for it, and was therefore not free to commit suicide. The friend was scared of being exposed on the island and advised me to not tell my story publicly. I didn’t. That is the kind of stigma that exists with disability.
I got to go to Hawaii because of a cat. They have quarantine rules and a friend moved there, and was delayed in bringing her cat and asked if I could escort him and stay for six weeks. I didn’t blink twice before saying yes. It was beyond my wildest expectations. Some friends gave me mad money and the deal was that I couldn’t do anything responsible with it, so when I was in Kauai I went for a helicopter ride, in the front seat, right next to the pilot, and you could look straight down. I wanted him to teach me to fly. I was so jazzed. Oh, the cliffs, the valleys, the ocean, the waterfalls, the rainbows. It was magnificent. It was absolutely the most amazing experience in my life. Even better than in my dreams.
The librarian on the island asked me to sit with an elder. So I started sitting with older islanders, and it was wonderful. They told me stories. I lived on the front of the island by the ferry boat slip, a great view. I bought a camera and took pictures of the sunsets.
I was frustrated. I wanted to somehow capture the elders’ stories and share them. I went to an exhibit of black and white photographs and storyboards. My heart lit up with a flame so intense. I had never experienced that before. I knew what to do. I spoke with our little art gallery on the island about doing an exhibit. I spoke with the Island Times about doing a column to advertise for the exhibit. At the June exhibit everyone asked, “Where’s the book?” So that began another journey. Mind you, I could only work a maximum of three hours a day. And I would have bouts of depression throughout. And bouts of freaked-out-ed-ness. I leaned on my friends and the community to help me. I busily interviewed and photographed islanders for another two years. Another gallery on the mainland offered to host the book launch/exhibit. In June of 2010 the book launched. By August it sold out. It’s now in its second printing. I never started out thinking I would write a book. If someone had told me that, I never would’ve started. I would have been too scared. Even as I write this today on Christmas Eve 2010, I have friends who are coming to help me clean my little 18 x 18 home next week because I cannot manage it on my own.
This project was such a community effort. This island has given me so much. When I first got here I was amazed at its kindness towards me. I was broken and it loved me. So I wanted to give back by doing this project. I was surprised to find that again I was the receiver. As I sat and listened to the stories of my “lovies” as I called them, they taught me. Some of them have limited lives, pain, memory loss, reliance on others for care. I learned how to live my life fuller. I learned grace, courage, and how to have a twinkle in my eye. My chronic fatigue syndrome and depression limit me, but I can choose to live as fully as I want within those windows and be thankful. One thing we all do is get old. We can be wise to learn how to live our lives now.
“What’s your next project?” I hated that question more than anything. I hadn’t been able to do anything for ten years and could hardly stand up, let alone conceive of doing anything else for the rest of my life. Nobody really knew what toll this had taken on me, but I present well. My pat answer became, “I’m going to take a lot of naps,” which I did until I went into a major depression for the beautiful month of August. I don’t have seasonal affective disorder. I can be perfectly miserable in gorgeous weather and happy as a clam in the bitter cold or damp fog or pouring rain. That’s clinical depression.
“How are you?” Another hated and seemingly innocuous question. The simple answer is F–I–N–E. F**ked up, insecure, neurotic, emotional. Most friends really don’t want the long answer. This way I can simply smile and be honest gracefully.
I still have chronic fatigue syndrome. I still have fibromyalgia. I still have bipolar. I manage them. They don’t manage me. They are a part of the package instead of who I am. I’ve learned to live alongside them, as esteemed companions, my teachers. Step by step, thought by thought, moment by moment. A little flame, follow it. Lessons of the night. I have this very simple view of life now. The good and bad come and go. Don’t hold onto anything. I love the moment. Every bit of it. That’s all I have. Heart wide open. It doesn’t matter if someone kicks you; just point yourself in the direction you want to go. As far as god, I don’t know. How can there not be?
The edges of the night are the best. Sunset, when the light slips below the horizon. That one moment taking the light over the rim of the earth, and rest comes. After which, the colors swell and dreams begin.
Fran HoustonPeaks Island, MaineDecember 2010
Postscript
This was the first piece I ever wrote, and chronicles some of my journey of illness and how my creative endeavor helped me emerge from the hole, to know and experience a bigger life of possibility and change. Months after it was written I experienced my most delirious mania, followed by the most hellacious depression ever. Thankfully I had a hand to hold.
Photo by Tyler Clemmensen at Unsplash.
