Lemony Snicket could have been scripting my story when he pens the opening of the first book: “There is no happy beginning and very few happy things in the middle…Most everything that happened to (me) was rife with misfortune, misery, and despair. I’m sorry to tell you this, but that is how the story goes.”[i] Like the Baudelaire youngsters, the chronically ill I meet are often intelligent, resourceful, hardworking, and pleasant, but, also extremely unlucky. Despite best efforts and experimenting with every treatment possible, misfortunes happen time and again.
I restart my story over and over; each time, I falter, brush off the dust, and start again. I have been to hell and back so many times I am on the frequent fliers list.[ii] I rewrote Chapter One five times, and finally started my second chapter recently…..
Many years ago, after the swells of tourists departed from my town and the evenings grew crisp and dark, I drove to my favourite canyon. I once spent time hiking here, but now mobility issues and fatigue made that dangerous. Hovering over the edge I called down and across and up, my pleas echoing back. Staring into the gaping coulee always brought a sense of calm, reminding me that there is something older, wiser, and deeper than my existence. It was safe to admit to the canyon that I was no longer able to enjoy any aspect of my existence, and that is how I saw it, not a life, but an existence. The pain and fatigue and dizziness took all the fun out of hobbies and all the joy out of working. Everything was a draining chore that made me question why I was still on Earth.
The severity of physical and mental anguish was hidden behind hair extensions, make up, and a fake smile. For the previous decade I felt “sick” but the symptoms came and went. I experienced good spells and bad spells. There would be months of energy and clear-headedness followed by weeks of pain, confusion, and strange symptoms. Eventually I had a list of over fifty symptoms, from digestive to cardiac to neurological. But now each day was frightening and riddled with medical mystery. There were no more “good” spells. In one fell swoop I dropped out of organizations, committees, and work. Without explanation, I seemingly fell off the face of the earth.
When chronically ill, a person donates work clothes and begins donning pajamas. TV shows replace social outings. IV supplies and medication bottles replace collector items on shelves. A rhythm began for me. No more alarm clocks, work schedules, and meetings to attend. My idea of time changed. The clichés that “the year flew by” and “life is short” became insults. For months I looked out a window, my only occupation watching the sun as the earth rotated through its cycle. My personal world rotated slowly. In being too weak to move or engage in activities, I taught myself to meditate and pray. I forced myself to delight in the way the sun shone off the floor at two in the afternoon, and became more golden at four, and then pinkish against the far wall at five. In concentrating on nature and evaluating the passage of time by the sun, I found a deep peace. Time crept, stretching out in tedious painful ways at first. Eventually, with practice, it became calming to measure the day by hues of light. The sun kept me accountable in a way, and I had to keep going until it became white, then golden, then pink again.
In amongst this rather isolated existence, were constant medical emergencies and trips to the doctor. “There’s no orderliness to chronic illness; it’s chaos.” [iii] And so the lives of the sick pass in that strange ethereal way of shock and grief and detachment. Every day is a routine of treatment and medical crises, like esophagus erosion and ear aches and clogged PICC lines. Some days I walked around the yard, others I had to crawl from bed to bathroom. The intensity of fighting to stay alive coupled with the loss of all that I knew should have led to depression but I went into survivor mode and tried to transcend my emotions. I focused on the minute I was in, then the next. I pretended nothing existed beyond that day. Suicide rates are high among the chronically ill, but somehow the silly lesson I took from my shampoo bottle provided a purpose. Instead of wash, rinse, repeat I decided to wake, struggle, repeat. Open eyes, swallow pills, do injections, hook to IV, force breakfast down, lie on couch, take more pills, eat lunch, more pills, injections, another IV, more TV, more pills, more sunbeams to follow. Repeat every day for months, then a year, then another year. I felt confident in the process to repeat this over and over.
Three seasons passed. The tall window that I peered through showed golden leaves fall, then branches bare, buds forming, and then lush green leaves that whispered in the breeze. Songbirds returned after a long winter away. Of course, I felt a call for me too, to return home. I had previously moved back in with my parents because I was too weak to be on my own, and my husband could not quit work to be my full-time caregiver. That was probably the most significant loss for me.
I moved home before I was strong enough. My body was not really in conjunction with my mind. Within the first few weeks of being home pain increased, insomnia worsened, and coordination issues returned. My trembling hands dropped vials, broke glasses, scattered pills, and made injections painful. Walking was possible but I couldn’t necessarily feel my legs. I wobbled around, bumping into door jambs or corners of walls. Most mornings I walked around with a wet shirt from slopping water down my chin while trying to swallow pills.
Sometimes I did my hair and got dressed and attended a meeting of sorts, or went to the library. But then I would crash at home for the next week. My mom delivered meals every two weeks so that I could just reheat them instead of attempting to cook. I have since learned that this is normal. That many sick people must rely on their parents to cook, clean, pay rent, chauffeur, and run errands. We lose our independence just when we start to find it. And if married, the spouse becomes nurse. Marriage vows are put to the test before the honeymoon is over.
One particular day I remember quite well. I just did not have the strength to get up. My blood was thick; I could feel “lumps” passing through my chest. My joints ached, my limbs felt really heavy. I was experiencing air hunger. I needed a blood thinning injection and painkiller before I could start my normal regime. I made it down the stairs from the bedroom to the kitchen, slowly, leaning against the walls and banister. I needed a glass of water, but for some reason could not recall which cupboard contained the glasses so I opened numerous cupboards. Then I found the bottle of painkillers, but I couldn’t grasp the bottle at first. I saw it clearly, my arm moved towards it but my hand took time to connect. Then nightmares of all nightmares…it had a safety cap. By now the room was spinning and I had stabbing chest pains. My uncooperative hands finally got the lid off with quite a violent maneuver which caused pills to fly out of the bottle and land all over the kitchen floor. I knew bending over would cause too much pressure in my head, it was just easier to crumple onto the floor and grab one pill while seated on the linoleum. Thankfully I had brought the glass of water to the floor with me. I sat sipping water and leaning on the stove.
I was not cognizant of how to phone my husband for help. I couldn’t conjure the energy or ability to dial. Fortunately the phone was in the kitchen and he called in that moment. I muttered something about needing help. I crawled back upstairs to bed to wait. When he opened the door I heard his surprise. “Were you wrestling with a demon or a pill bottle? This place looks like a poltergeist entered!” Cupboard doors stood ajar, drawers remained open. The glass had tipped over, water streaming next to pills scattered across the linoleum. This day stands out for me, but most days were like this. Sometimes I could function for an hour or so, to attend a meeting or get groceries, but then an “episode” would occur. This continued for years, with many other health threats and events that are unbelievable to many. It was enough to make me suffer, and that is what I needed to prevent the most.
Suffering is much different than pain. Suffering begins when we want things to be different than what they are. I desperately wanted to be well. I desperately wanted to have energy. I wanted to travel and work and breathe. My desperation was palpable. A chronic illness often breaks the heart, takes the body captive, and darkens surroundings. As years pass without improvement, the sick person faces one disappointment after another; loss of career, loss of hobbies, loss of friends, loss of finances. The list goes on. All of this “missing out” can cause a broken or heavy heart. Loss of mobility, overwhelming fatigue, and unmanageable pain cause a person to feel imprisoned. This malfunctioning body will not allow “normal” activities, the energy to engage in outings, or even the creative energy to enjoy a hobby. After years of ongoing health issues, a darkness may settle. Sometimes it is a darkness of despair. Sometimes it is a darkness of ignorance, when the medical community can no longer suggest treatment options. Sometimes it is the darkness of grief, having to accept that this is it. How do we then wake each morning knowing today will be like every other day for the past thousand days? What value can another day of fatigue or pain or nausea hold for me?
My answers came when I entered a different plane of living. In this world but not of this world. I never ask “Why me?” in the tone of self-pity, but ask “Why me?” in a spirit of purpose-seeking. I help others through my illness and have had renewed faith. Surprisingly I find joy during endless days of sickness. Amazingly, there are numerous ways to develop community while bedridden. Mostly, I am grateful for learning the value and meaning of life through this unplanned and unpredictable path. It is in gratitude and the spirit of hope that I write this blog, to take a chance in bringing beauty for ashes and joy in the midst of disaster.
More than physical healing, I pray for light in the darkness, protection from despair. Although death is a possibility with chronic illness, it does not come quickly. There is no gentle passing after a short bout of illness, rather a dragging on. Death is perfectly safe; it is the process of dying, the struggling to stay alive that poses the suffering. [iv]The religion I grew up with did not prepare me for suffering, or ongoing disappointment and pain. How freeing it was to read How to Be Sick by Toni Bernhard, Unattended Sorrow by Stephen Levine, Coping With Chronic Illness by H. Norman Wright and Lynn Ellis, and watching Joyce Meyer. It may seem contradictory to clump these discrepant resources together, but each taught me how to quit suffering, and how to live abundantly despite illness. I no longer feel betrayed by my body. I no longer rage against my situation.
A blog by Richard Louis Bruno helped me find much comfort, and helped me release the clinging to what was.
You see that glass? For me, this it is already broken.
I enjoy it. I drink out of it. It holds my water admirably,
sometimes even reflecting the sun in beautiful patterns.
But when the wind knocks it over or my elbow brushes
it off the table and it shatters, I say ‘Of course.’
When I understand that this glass was already broken,
every moment with it is precious.
When we accept that everything animate and inanimate
is “already broken,” a physical disability
— even a terminal illness –
loses its abnormality.
Actually, anything that is not broken,
not “disabled,” is really abnormal.[v]
In future posts I will share treatments (pharmaceutical and naturopathic), recipes, and coping mechanisms that helped me. Of course, every disease and illness is different, and I do not claim to be a medical expert. In no way do I compare myself to others, I just hope to help if I can. I feel guilty that my health is improving slowly while others remain bedbound and pain-ridden. All I offer are my experiences and aides to lighten the burden of others just a little.
i. A Series of Unfortunate Events, Book the First The Bad Beginning Lemony Snicket
ii. Frasier episode
iii. Coping With Chronic Illness by H. Norman Wright and Lynn Ellis
iv. Stephen Levine A Year to Live: How to Live This Year as If It Were Your Last
v. Buddhism Plus Disability