Suffering & hope amidst Myaglic Encephalomyelitis/CFS
by Danielle Martell
Just another father-daughter drive to Shopper’s Drug Mart, but today is no ordinary day. Dad drops me close to the door then parks the car. My legs feel heavy, like I’ve climbed a large mountain and can’t push them one more step. They slow down uncontrolled, resistant to perform. “Baby steps,” I tell myself. Every step my muscles weaken. The mitochondria that produce energy in my cells are misfunctioning like a car that has run out of gas. Shortness of breath follows, brain fog sets in. “Just get to the counter,” I whisper. My speech becomes laboured. I’m energy depleted, deficient, impoverished and bankrupt. I obtain my prescription, not a cure, but a management for my symptoms. I then start my baby steps back to the car, yet this time with reduced capacity. I’m failing to walk.
My dad discovers my dilemma and a kind stranger seeks to aid me but to no avail. I am sick and stuck in the middle of Shopper’s Drug Mart, cannot walk, struggling to breathe and speak. My illness is new to me. I thought I could make it but didn’t anticipate the sudden onset of such total and profound weakness. I’m 33 years old with no diagnosis, have been sick for four months, bedridden most of the time, venturing out only for prescriptions and innumerable doctors. My dad finds a buggy at the store. I stand on the back of it and he wheels me out to his car. Hospital Emergency can do nothing for me. Rest is my dearest, comforting medicine, though not a cure.
At home, I lay on my bed recovering my breath while my parents care for me. A simple shower will fatigue me so severely that I can only tie a towel around me and lay down again long enough to recover strength before I can then dress myself for the day. The Shopper’s Drug Mart adventure has done me in. My mom places a blanket over me while I lay unresponsive. My body is shutting down. I can’t cope with the lights or sounds around me. I can only moan as my body grasps for air and rest. An overwhelming weakness sweeps over me. My arms are weighty and I struggle to lift them. I feel like I’m dying.
“Are you dying?” I ask myself. The doctors say all your organs, MRI’s, CT scans and blood work are good, yet something is changing. I feel like I’m dying. I talk to Jesus. Images of mom screaming, knowing her baby girl has passed, flood my mind. I talk to Jesus. My will for living is fading. My brain is transitioning to another realm. “It’s okay if you take me home Jesus. It’s okay if mom’s sad,” I tell him. The joy of Jesus floods my heart. “Take me home Jesus. I want to go home.”
I know I was transitioning to death that day. It was a mental shift I’ve never encountered before or since. Never in my wildest imagination would I surrender such certain and unbearable trauma for my mother. Not only that, but the assurance of the joy of Jesus in the face of death is a pleasured hope that lingers in my heart today with anticipation unspeakable. I was ready but he was not.
A year and a half later, I was diagnosed with myalgic encephalomyelitis, an illness commonly known as chronic fatigue syndrome (CFS). However, when you tell people you have chronic fatigue, they tend to think you’re too lazy to work, so for the most part, I stick with the scientific name. Doctors tell me my illness is not curable. After five years of hoping for a cure, finding a mix of prescription medications, natural remedies, and most certainly prayer, to improve my symptoms, I finally bought my first wheelchair at age 38. My symptoms have improved significantly. I was initially bed ridden for nine months and dependent on family to care for me. Now I live independently and work. I am more fortunate than many with my illness. I credit the Lord for this.
A rough estimate tells us that approximately 17 million people in the world share my illness. Many face depression and suicide, misunderstanding in society, their families and colleagues. While our illness is fraught with difficulty, I am surprisingly thankful for the grace of God amidst my illness. I don’t know if I’ll ever go for a casual walk again and that’s painful. I can’t wrestle with my small nephews and niece. I can’t hike to see a waterfall. There are many employment opportunities I cannot obtain. On top of this, it’s a struggle that our worldly culture teaches us that the epitome of freedom is to have every option available before you, but for me, the options are very narrow.
I despise this cultural lie, for it is nothing more than a lie. I of all people am free, for like my brothers and sisters in Christ, I have found that I don’t need all the options the world has to offer. The ideal for the world may be wealth and health. However, I have learned that godliness with contentment is great gain, so weather I am rich, or poor, weak or strong, it doesn’t matter. I am in Christ. I have it all. In my weakness he is strong and I am made rich in him. I have everything I need, even the joy of the assurance of my salvation in the face of death, defeating all fear. This is our Christian story because of our great hope in Christ and those who the Son sets free are free indeed! I have wealth and health immeasurable because I have Christ. He is everything I need and more. I cling to him as the joy of my life. Myalgic encephalomyelitis does not define my life. Christ does. While I may be physically restricted in many ways, Christ is not and nor is his great gospel. I joyfully spend my life on him. He is everything I need.
Lessons from chronic pain
By Ann Peachmen Stewart
Fortunately, I can’t write an article about having cancer, or debilitating and frightening diseases. I can talk about living with chronic pain. MedAlert, who gather statistics, estimate 1 in 5 adults worldwide suffer from chronic pain. (https://medalerthelp.org/chronic-pain-statistics). Odds are, you, a family member or friend is suffering right now.
Chronic pain comes from many different sources. Migraine headaches, back pain, continuing pain post-surgery, are just a few common ones. With me, it’s severe arthritis. Let me tell you about Pain.
It’s like having an unwelcome guest living with me. Nothing I do will entice him to leave or even go into the next room for a while. He intrudes into every day: every minute.
When I get up in the morning, he claws at me because my pain meds have worn off but I still need to get up, shower and get ready for the day. I need to move around and Pain pokes and grabs at me while I do. When I finally crawl downstairs, sometimes literally, I take the strongest possible dose of medication and sit on the couch with my coffee. Pain hovers beside me, but remains relatively quiet as I wait for the the medication to work. By “work,” I mean take the edge off. Sometimes this takes forever.
Pain and I get up and begin to move around. Time to go for a walk. “I’m coming, too,” says Pain, and nothing will dissuade him. My daily walks are like a foul-tasting medication – I take them because I know they benefit me. The first 15 minutes or so, Pain controls my slow, lurching walk. Finally, he recedes and walks behind me. He never leaves, but the exercise improves my mobility. I’ve found that I can distract him by listening to music or by observing and photographing my surroundings.
Sometimes I pass people and we smile at each other, but I see pity in their looks. I hate it. I look young until you observe me walk. Pain ages me. The person inside me wants to scream and cry. Pain smirks.
As I move through my day, Pain pinches and grabs and burns. If someone visits I struggle to walk as normally as possible so I don’t have to see that look in their eyes. I joke, hoping to distract them as I try to shove Pain away. I’m embarrassed by my constant companion.
At bedtime, Pain really comes into his own. During the hot bath before bed he sits waiting for me, but it’s the one time he doesn’t participate. I cherish those few minutes without his company. Then pain meds, a topical rub, a natural sleep aid and I crawl into bed. I can’t sleep on my back but when I turn to the left, pain grabs my hip. If I try my right side, my knee burns and often my shoulder. Sometimes I sleep for a while, but like a fussy toddler, Pain won’t be ignored. Sometimes I play Scrabble in the middle of the night on my phone or get up for a cup of tea. Occasionally, Pain lets me sleep most of the night. Not often.
What to do? When I can make a post-pandemic doctor’s visit, I have the name of one I would like to try. Perhaps she can adjust my meds, send me to a specialist or suggest surgery. Surgery terrifies me because I live alone and the implications seem horrendous. Which parts of me should be replaced and will that make Pain behave, eventually?
Pain, you’re messing with my independence. My joy. My life.
Since I started writing, I heard about an acquaintance who just discovered she has cancer and probably has days to live. Thinking about how I began to write this, my perspective has changed.
I may never make friends with Pain, but today I plan to thank God. He has a purpose for me each day; one which Pain can never mess with.
I’m alive. I’m not sick. Life is good.