Snapshots of a Chronic Illness
Dear reader: if you live in the “Kingdom of the Well” it might be hard to know what it is like to live in the “Kingdom of the Sick” (terms coined by Susan Sontag). If you live in the Kingdom of the Sick, you may feel alone in your experience. I share these snapshots of my chronic illness with you regardless of which kingdom you are in. And it can change. As it did for me.
1. Angry Rest
Picture this: it is a Saturday afternoon. Summertime. I can hear laughter and chatter as people walk by my converted cotton mill loft, heading to the trails that follow the Haw River. Dogs are barking. Children are calling out to each other. Some of the groups likely stopped at the Saxapahaw General Store to grab a lunch or the Farmhouse brewery to pick up a flight of beer to take to the picnic tables, all in this destination mill village in North. Carolina. I thought I would be one of those people, along with my partner, Tom, and Axel, our sensitive beast of a German Shepherd. That’s why we left behind our urban lives and were ready to build a new life together that oriented us to the magic of this place. Instead, I find myself unable to get out of the bed. I am utterly exhausted. I struggle to find an apt word: fatigue or tired is like describing Mt. Kilimanjaro as just another mountain. I can add descriptors like profound fatigue or extreme exhaustion. Or, perhaps liken it to a series of all-nighters while having the flu. What I know is that I am lying on my side facing the wall (that has not yet been decorated) and I am too tired to turn over for a better view. I lie like this for hours.
And so I rest. And I am angry. And frustrated and confused. This is just at the beginning, long before all of the doctor appointments, the slew of blood tests, MRIs, and Google searches. I won’t even know how to capture my feelings about it until later when I read of “angry rest” in Toni Bernhard’s stellar book, How to be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers. Indeed, at this initial stage in the summer of 2020, I have no idea that I need to learn to be good at being sick. I am just angry that my body is collapsing just as I’m poised to begin a new adventure.
2. Dismissive Doctors
If this were fiction, I would be criticized for lack of originality. There is nothing novel in a plot of dismissive doctors who don’t listen, who don’t pursue additional testing, or who, because they do not see a medical condition, advise you to see a therapist. And yet, the story of a chronic illness — a real story — is rarely complete without this element. That is certainly true for me. My internal medicine physician, who has known me for years, shrugs her shoulders at the pages of test results and says there is nothing wrong with me. I ask her for referrals to doctors who work with patients with chronic fatigue and the related host of symptoms of brain fog, dizziness, headaches, sleeplessness (and more) and she says she doesn’t know of any such doctors and it will take her a while to try to find one. She never does. She responds warily to my partner when he asks for additional tests for Lyme’s disease. She ends the appointment by recommending a follow-up appointment in six months without a single suggestion for how I might get better. Except to see a therapist.
I reject her recommendation of a follow up and pull together my own team that includes neurologists, endocrinologists, and neurosurgeons — two of each as it turns out in the search for awareness and understanding. I also find my way to a functional doctor and Shaman (same person), an ENT physician, an infectious disease specialist and a chronic disease specialist. And thus, the medical journey takes shape: a search for health providers who will offer compassion, curiosity, and a bit of that can do attitude.
3. Energy Equation
Energy is prana. Life force. Chi. It also is a complex cellular function in our bodies. In January of 2021, we make the ten-hour car trip to Ithaca College in New York, for a two-day test to find out how well my body generates energy. Not very well I find out. I wear what looks like a gas mask with hoses connected to a computer and I’m told to pedal on the stationary bike until I cannot do so anymore. I’m told to push myself, even though at this point I know that it could cause a crash that will take days of bed rest for me to recover. I last about eight minutes each day. I am dizzy and sweating. I feel like I will throw up. They help me get to an exam table to rest until I’m well enough to be pushed in a wheelchair back to the car where Tom and Axel wait for me. I sleep the rest of the day.
The report translates the experience into science. The Cardio Pulmonary Exercise Test (CPET) measures peak oxygen consumption (VO2peak) and Ventilatory/Anaerobic threshold (VAT) — the point “during incremental exercise when production of energy is derived increasingly through anaerobic (v. aerobic) metabolism.” The test reveals that my VAT score is “very low,” meaning that my body switches to anaerobic energy (without oxygen) much sooner than it should. This matters because of the dramatic difference in how anaerobic and aerobic glycolosis create the energy that is stored and transferred at the cellular level, known as Adenosine triphosphate (ATP): anaerobic glycolosis produces a pathetic 2 molecules of ATP compared to the robust 32 molecules of ATP generated by oxygen rich — aerobic — glycolosis. The combined results of VO2peak and VAT indicate I have a “very low threshold for exertion.”
Another acronym in the energy equation is MET for metabolic equivalent, which is a “physiological measure that describes the average energy expenditure required during seated rest.” Based on my VO2peak and VAT, the report identifies activities that would be within my range of metabolic exertion, including “bathing while sitting “or “lying quietly watching television.” Brushing teeth takes more energy than I can sustain. “Walking around a workplace gathering things to prepare to leave” takes more than twice as much energy as I can sustain.
And what is the point of getting numbers to describe what I already know? It is to give some hard science to my disability insurance company to support my claim for long-term disability. I need to dispute their assumption that I am a malinger. That, in fact, I don’t prefer to just lie on my ass all day rather than engage in meaningful work.
The CPET report concludes that “[t]he collective results of this test indicate that Ms. McColl’s ability to carry out normal daily activities is limited and renders her unable to perform even sedentary-level work on a sustained basis” and that “efforts to perform her own job requirements would not be possible without exacerbating her illness symptoms, including her cognitive dysfunction which is central to performance of her job.” Take that, insurance company. And they do.
The CPET not only supports my claim of disability but also the specific diagnosis, as people with my related conditions of Chronic Fatigue Syndrome and viral-based Myalgic Encephalomyelitis have these kinds of results. And there is something oddly reassuring in that. In this baffling energy dysregulation, I belong somewhere.
What is missing is how to change the energy equation. The test does not help at all with this. That is left for other scientists -primarily scientists of the future — to figure out.
4. Wheelchair I: The Fox
After weeks of increasing isolation, I am happy to accept the recommendations to get a wheelchair from the exercise physiologist at Ithaca College and my infection disease specialist. And it is a fabulous wheelchair. Made with bike parts, it can take on the tree roots, sand, gullies, and other terrain features of the Haw River trails. Tom learns how to take me backwards and then swivel around a particularly challenging pattern of roots. And then we add Axel to the mix. I hold the leash and Axel takes the lead in front of the wheelchair. Tom pushes me from behind. We are our own traveling caravan.
We are in this configuration on the trails one morning when the sun is just beginning to cast a pink glow. Out of nowhere, a fox crosses the path directly in front of us, heading further into the woods. Axel goes bonkers. With his barking and lunging., he is canine yelling, “I am responsible for my Mom in this wheelchair and you, fox, had better stay the hell away!” At this time, the choreography of the entire scene would show that just as Axel is beginning his bark and lunge, Tom is reaching over my shoulder to grab the leash out of my hands. Can you picture this? Slow motion. Over my shoulder. Grabbing the leash from my hands.
In this instant, my anger isn’t invited. It just shows up. I am furious at Tom’s intervention even though I can understand his motivation. Now, stuck in the wheelchair on the trail with no ability to move myself — to flee — I want to scream to the heavens. These trail rides which had been such a source of joy become a reminder of my helplessness.
Back at home, Tom and I agree on how to handle the next fox. But there is a lot to learn about the careful dance of the ally and the ill partner.
5. Disappearance
I take medical leave from February through June of 2021, hoping that this will be enough time to find treatments and solutions to my growing list of diagnoses. It is not. I give notice that I will officially resign June 30 from my position as executive director of the nonprofit that I co-founded, thirty years after I began my career in law and policy. I will begin long-term disability. When June 30 arrives, it looks much like any other day in the prior weeks or months. My day doesn’t change. The organization’s day doesn’t change, with an interim CEO in place since February. And yet, I am unprepared for what it feels like when there is no email, no text, no phone call. I am weepy at my apparent disappearance.
I tell myself that, to some degree, just about everyone has disappeared in June of 2021. In-person meetings are cancelled. People may or may not show up on camera for a zoom meeting. In a raging pandemic, no one is having retirement parties. But it doesn’t talk me out of my sadness. Poet David Whyte writes of having faith in one’s own joys and one’s own grieving. This is my grieving.
6. Mud and Lotus
Thich Nhat Hahn famously said, “no mud, no lotus.” I understand this as an invitation to accept the difficult, messy parts of life in order to blossom. When the phrase is shared with me about my chronic illness, however, it can sound like a harsh admonishment to appreciate pain and suffering without regard for the hardship it causes.
I have come to a different image of mud and lotus to help me see all of life. I sketch the petals of the lotus, writing on each petal ways to experience life, such as “joy”, “beauty”, and “awe”. I draw in the under girding leaves with labels of practices to support this life, like meditation and healthy lifestyle. I sketch the stem of the lotus, gently moving in the murky waters that are filled with nutrient-rich debris. I add sunlight, filtered by the leaves, providing a gentle light along the stem. And at the base, I settle the lotus in mud — soft, deep, and dark. In the mud, I draw the rhizome roots that connected the lotus flowers in an underground support network.
I have such lotuses sprinkled throughout my journal notebooks with whatever pens and colored markers I have handy until the image is well etched in my mind. Now I can spend time anywhere I want with the lotus and mud. On low energy days when I would struggle to be above water, I can close my eyes and slip into the soft swaying of the stem in the water or go even deeper to rest in the comfort of the mud. If I can’t withstand the direct sunlight, I can feel connected through the gentle tugging of the underground root system. And it is all beautiful.
I say yes to mud and lotus.
7. Body Shaming
I have high hopes. In my first out-of-state visit to neurosurgeon number one, he shares a novel theory that perhaps the hyper curvature in my cervical spine is tugging at the spinal column, leading to my medical condition. I have returned for a consult with his orthopedic colleague and then with him for next steps — the game plan for ridding myself of all of this dysregulation and getting my energy back.
He begins our time in the exam room telling me that my diagnosis of Chronic Fatigue Syndrome is a trashcan diagnosis. Doesn’t mean anything. He said this during the first visit and I hated it then as it seemed to wipe away the little explanation I had for this mysterious condition. I hate it just as much the second time, but I sit stoically through the neurosurgeon’s rant, waiting for the main course. Then he reviews the orthopedist’s assessment that the curve on the top part of my spine is an unremarkable adaptation by my spine to the curves on the lower part. He does not come back to his novel theory. Instead, while facing his computer and typing in notes, he says, “all of this could have been avoided if you exercised your neck. You have terrible posture.” The doctor then gets up from his chair, lies stomach down on the floor and proceeds to demonstrate the yoga cobra pose, arching his head and neck away from the floor. He says he does it every day. And we are done.
For the record, I do not have terrible posture. I have more curves in my back than a country road and my body has done its best to navigate a complex geography. We shame people whose bodies are shaped differently from some cultural norm. We shame people who get diseases. And apparently, we shame people for the way their backs curve and compensate.
It is time for neurosurgeon number two.
8. Wheelchair II: Philadelphia
In August of 2021, I have my much-anticipated trip to New York to see my second neurosurgeon. Having traded in my sporty stick shift Subaru for a minivan, we have plenty of room for a wheelchair, Axel, and supplies. Breaks in the trip are necessary, so why not make it interesting, like Philadelphia? Tom wheels me to the museum. He wheels me through the gardens. He wheels me through the food hall.
Our point of contention is wheeling me with Axel. I want us to have an adventure together. Tom is concerned about taking Axel onto the busy streets of Philadelphia. There won’t be foxes, but there will be other four-legged creatures that will get his attention.
Tom ultimately sets aside his concerns and this time the sun is casting its early morning glow over Philadelphia as we emerge from our Airbnb. The sidewalks and streets in historic Philly are cobbled, a disaster for most wheelchairs but not for my bicycle-tire version. Trash day also turns the sidewalks into an obstacle course with bags of trash heaped along the curb and against stairs to the brownstones.
We are in motion. Axel is lead. I’ve got the reins — oops — leash. Tom is pushing from behind. It reminds me of the thrill of riding a bike. I’m paying one hundred percent attention to what is just ahead of us. I’m pulling the leash to move Axel away from the trash, away from the bottom stairs of the brownstones, unconsciously shifting my weight in the chair in the same direction. I’m calling out to Tom about dogs, pedestrians, traffic lights. Move right! Watch out for the pothole! And we’ve so totally got this. I see people admiring Axel. He could pass for a service dog. And then we get to this bridge. The bridge arches towards the sky to what looks like eternity. It is our Rocky/Silvester Stallone moment. Up we go.
It is a glorious ride.
9. Halo and Pulley
I have never imagined these words together. Especially related to my head. And yet, on the morning of August 20, 2021, I want nothing more than for these words — this apparatus — to bring me an answer. To give me a way out. I am willing to ditch my complicated spiritually for the most beseeching prayer I can muster to please, please find that I am a candidate for surgery that will fix my medical condition.
To my knowledge, there is only one doctor in the world who uses an invasive traction test to determine if someone with the kinds of symptoms I have is a candidate for surgery to address cervical cranial instability. And after eight months of completing forms, traction journals, and remote video assessments, I am here with him.
In the hospital operating room, I am put to sleep so that they can insert screws into my skull to hold a halo. Then they attach the halo to a pulley system. I wake up. As I sit upright on the operating table, the assistants add weight to the pulley system, 20 pounds, 30 pounds, 35 pounds. Each time, they take images of my neck and the neurosurgeon asks me a series of questions to find out the impact of the weights. How is my fatigue? Brainfog? Dizziness? Eyesight? Swallowing? When we get to 35 pounds, I just smile. Not a smile from my thoughts. It is a smile straight from my body: I am free I am free! I feel more like myself than I have since before my first angry rest in June of 2020.
The neurosurgeon reviews the images on his laptop computer and calculates measurements to see if the movement in my neck is scientifically significant and corroborates my response. As I continue sitting on the operating table with 35 pounds pulling my head away from my neck and shoulders, he tells me that the results indicate that I have cranial cervical instability and that I am a candidate for surgery to fuse my cranium to my upper cervical vertebrae in the same position as I am in right now. He says this has been a dress rehearsal and they can use the images to determine the location of the fusion and I can have a sense of the results based on how I feel at this moment.
This is pioneer surgery. The theory — best explained so far by the first patient to have a Craniocervical Fusion for this purpose in 2018 — is this: the head presses on the neck in a way to compress the brainstem and keep it from performing well its many regulatory functions, causing massive system dysregulation, including of the immune system (thus allowing previously dormant viruses to run amuk) along with systems responsible for generating energy, allowing for restful sleep, regulating blood pressure and so on. With the vagus nerve running straight through the area, it implicates the entire gastrointestinal tract as well. It is a theory that explains a connection between what might have been thought of as primarily a viral/immune system issue (and labeled as Chronic Fatigue Syndrome or Myalgic Encephalomyelitis) to a structural/mechanical basis. And the theory contends that alleviating this pressure will allow the brainstem to fully return to its functions and the body will reset and will once again be regulated.
I’m giddy. I’m thrilled. Sign me up! Wheel me in! Let’s get to it! But of course, there’s insurance and it takes time. And it is a big deal and important to make sure that conservative efforts like physical therapy have been exhausted. I restrain my enthusiasm and responsibly schedule the surgery seven months out, in March of 2022.
But already, my life has taken a turn. There’s a possible solution. The doctor says to me, “doesn’t it feel good to be told you’re not crazy? To have someone confirm that your condition is real?” Hell, yes.
10. Wedding Album
Tom and I had plans for a modest-sized wedding in November of 2021 and then the next wave of Covid comes and we cancel. With no reason to wait, we move up the date to September for an intimate gathering of us, the minister, my two sons, and a witness. We forgot about lining up a photographer and it is good fortune that we are able to slip into the schedule of an excellent photographer who happens to have our Friday morning open.
The pictures come a month later. During our honeymoon, we pour over the hundreds of photos and Tom stays up late night after night creating our album. When it arrives, it takes my breath away. There are virtually no staged photos. Instead, the photographer scrambled among the shrubbery and trees to capture the unfolding of our service moment by moment. And it is all there. Laughter — the mouth wide open, head back kind, tears (lots of them), kisses (many), hand holding, mirrored expressions like we had been together for 30 years rather than three, and profound tenderness. In the last photo of the album, I have my hand on Tom’s heart and Tom has his hand over mine and our heads rest against each other. We both look as if nothing else could possibly be going on in the world at that moment.
The collection is a treasure, as many might hope their wedding album would be. And it says something more to me: that even with all my diagnoses, all my fatigue, I am capable of experiencing the deepest range of joy and love. It fills me with a sense of great possibility of my life with Tom, with or without my body getting better. Hosanna! Hosanna!
11. Friends Reimagined
The pain of losing friends almost kept me from seeing the love of the friends who remained.
My illness severely disrupted the rhythm of friendships. I rarely had the energy to engage in activities or even meet outside of my home. A friend could easily spend more time coming and going than visiting with me. And it is simply different to be a friend to someone with a chronic illness with a poor prognosis. I will not be well by the time the casserole is eaten. We can’t make plans for a brighter day. And I may be too tired to have anything interesting to say. Over time, some friends gradually disappeared. Fewer texts. Fewer assertions that we MUST find time to get together! Fewer apologies about being so crazy busy.
There also were the abrupt endings when I could not hear someone’s pronouncements of my illness: you are being broken so that you can heal. This is your body’s way of telling you that you were in your head too much. This is a blessing. Mind over body. I try to explain that my energy is just too thin to hear things that are not helpful to me. When a friendship ends over this boundary, I feel rejection and loss, a feeling that lingers longer that I want to admit. I would like to delete this passage and delete the memory but for the reader who has a similar experience, I want to say I understand! It is so hard.
What now strikes me as remarkable are the friends who found a way to stay by my side. The wheelchair expedition with a group of women who pushed me up a huge grassy hill and held on — barely — as we went flying down the wooded root-covered path on the other side. The friends who used texting not to imagine some later conversation or visit but a real communication, right then. Thinking of you. Love you. The friend who came for a walk but ended up sitting in the chair by my bed. The friend who joined me with needle and thread to repair Axel’s stuffed animals. The friend who agreed with me to read Marcel Proust’s amazingly long and winding Swann’s Way, who kept a commitment to regularly see me to discuss the book and who, when I was slow in my reading, reread the book in another translation. This is what friendship looks like. This is what love looks like.
12. Surgery Cheat Sheet
By January of 2022, I am fully turning toward the possibility of surgery in March. Dealing with uncertainty isn’t my strong suit, and I am considering major surgery that could go in many directions, including (1) not improving the main symptoms, (2) causing great pain, (3) adding new on-going symptoms, or, the reason for doing this, (4) eliminating my main conditions.
To help prepare, I pull out all of my journals, notes from therapy and a course on mindful self-compassion and create a surgery cheat sheet with the best of the best.
Breathe! Feel my feet. Remember Joy-Ease-Belonging-Engagement. Wrap challenges with positive emotions. I’m on a heroine’s journey — faith, persistence, resilience. Compassion for self and others. Tonglen breath. Mother Mountain Lion. Tara. Metta Meditation.
And I have a drawing of a lotus in mud. Like most cheat sheets, it may not mean much to someone else, but it is packed full of what I have learned. I tuck it into the wooden craft box Tom has given me, along with a hundred or so of our photos he had printed of us and our family and friends. There is a lot of smiling in these photos which has an obvious benefit of feeling the connection to people. I’m also after the brain science that suggests that even if I am in a hospital bed in pain, my brain will want to mirror that smile and emotion. And with the cheat sheet and the memory box, I am ready.
The Kingdom of the Well
1. Head On
Susan Sontag begins her well-regarded essay on illness as a metaphor with the following: “Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.” When I wake from the Craniocervical Fusion, I realize I have passed from one kingdom to the other. I am well. Mind you, I have plenty of recovery ahead of me, lots of healing, and a spine that will continue to confound me. But I am miraculously — and I use that word with care — relieved of the extraordinary range of symptoms linked to this cranial settling and brainstem compression. I am alert. I have energy.
And I am an inch taller.
Even in a cervical collar with a neck like a steel post, I broadcast the changes. My eyes are brighter and bigger. I exude energy. I’m marching through the hospital halls with my trekking poles. And friends and family respond. They tear up. They are overwhelmed. They have broad smiles. I am sure they feel sympathetic joy for me. And yet, it feels like even more: it is a pause in our ordinarily busy and distracting lives to note that something astonishing has happened. There is an opportunity for a new beginning. So much is still possible. Hope wins.
My husband is dangerous with his phone. He sends the photos of me briskly walking, leading the pack, on the Haw River trails. He takes pictures of us making our way around Rhode Island, which we visit for two weeks so that I can have physical therapy every day with an expert in my post-surgery condition. More and more images accumulate, but they belong to the next story of healing and recovery.
Sontag cautions us on using metaphors for illness — equating a medical condition with an emotional outlook. I agree. And so it is only in gest and jubilation that I say to myself that I finally have my head on straight. That I have moved a head. (Get it?) That I am now heading into the next journey in my life.
