Everyone who is born holds dual citizenship, in the kingdom of the well and the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.
Antibodies invade at will and without mercy. They alter your reality from a cellular level. While the science is still out on exactly how it occurs, it is clear that autoimmune disease resulting from the body’s aggressive antibodies is not brought on by any action of the person. It results from a cataclysmic convergence of internal and external triggers. And, it has a life of its own with ups and downs, healing and resurgence.
The individual living through the mystery and uncertainty of disease is the only one who can truly understand their circumstance no matter how much doctors and loved ones want to comprehend. The same condition in two people manifests differently, so even someone with the same disease will not completely understand another’s experience. So my experience may or may not resonate with someone else’s.
I have lived with rare autoimmune disease for over forty years. Yet, if you were to see me in person you probably would not know that I have any health issues, since it is not visually apparent. Despite appearances, chronic illness is my daily and lifelong companion, with cycles of good health punctuated by complications, and managed with medication, nutrition and the regular care of a dedicated physician.
During times of illness, in order to maintain the illusion of health, I live in a state of duality between managing symptoms privately versus my healthy self, presented to the world. I projected this polarity through the camera in some of these images.
Moreover, The Soul of Common Things illustrates the dichotomy between my childhood memories coping with seizure and the severe sustained muscle spasms of tetany, in contrast to my present state of being. Using photographic technique I aim to take the viewer into moments of emotional and physical disorientation and back again to clarity, like what was my daily reality as a child, but filtered through the distorted lens of memory.
This photo narrative is also about my relationship with my mother who weighs heavily in the storyline of my life. She diagnosed me, then taught me how to live and thrive with chronic illness. She was my rock, my inspiration and my friend and came to my rescue medically and otherwise more times than I can count. You will hear her voice, along with my father’s, drawn from interviews that I tape recorded with them around thirteen year’s ago. I also provide audio commentary throughout.
Ultimately, The Soul of Common Things alludes to the philosophic underpinnings of the collective unconscious coined by Carl Jung. My life experience is individual. But its quintessence is universal. The ebb and flow of being sick, facing crisis, fear, loneliness, resolution and joy, are all ingredients of the shared human experience.
My road was not straight.
My landscape was altered.
My legs would give way.
I would fall to the ground.
I would tell no one at first.
I was scared.
I did not understand what was happening to me.
I found escapism.
By way of a bedroom window.
I studied the house next door.
I contemplated the texture and changing colors of the sky.
I listened to the noise and life outside and downstairs.
Solace through solitude.
Walking through a haze. Brain slows. People walk by as if spirits in a dream.
Losing control. Pain in slow motion.
It’s a dream. Keep going. Find a place to be.
Space and time distorted. I am in space and time.
Walking through school, the halls are long.
Can’t think clearly.
Go to where I can be safe. Getting there takes forever.
Relief coming. Weakness. Not real clarity, but not slow motion.
The fog is lifting.
Time to go to class.
Movement. Walk. Trot. Canter. Moving, faster and faster, or slower, over a fence, walking.
Up to me.
I am in command.
I have legs.
I have speed.
Power and control.
.….illness tells us more about an era or an individual than health does. We now find ourselves at an intersection, lodged between the promises of science and technology and lingering assumptions about people who are forced to dwell in the kingdom of the sick.
Laurie Edwards, The Social History of Chronic Illness in America
From around the age of nine through twelve, I was misdiagnosed as having epilepsy. During this time, my symptoms could not be controlled despite my taking anti-convulsant medication.
Eventually my mother, who was a pediatric neurologist, took a leap of faith that her intuition was right, and against the advice and pressure of her medical peers looked for other reasons for my condition. She then found her way to correctly diagnosing me with idiopathic hypoparathyroidism (HPTH).
She took me off of Phenobarbital and started my care under an endocrinologist for the treatment of HPTH, which includes calcium supplementation with Vitamin D. The seizures, tetany and other symptoms immediately stopped and I regained my health just before entering high school.
Since my childhood, other autoimmune disease has developed over the years; meaning that my condition has ebbed and flowed over the course of my life, with the aforementioned pattern of relative good health bedeviled by periodic challenges. Thanks to the thoughtful guidance of my parents when growing up, even during the bleakest of times, I have sought out what I could do rather than focusing on what I cannot.
It may sound incongruent to my perspective, but by and large, I have found life easier when not disclosing my condition, other than with close friends and family or as needed. On occasion people write their own scripts regarding what they perceive as my capabilities, influenced by their bias, experience or knowledge about chronic illness. Since, I have rare autoimmune disease, I believe it makes it even harder for someone else to comprehend.
On the contrary, when someone is unaware that I live with chronic disease it does not add or detract to their idea of who I am and what I am capable of. As a result, I feel more capable when someone sees me as “healthy”, since another person’s concept of me influences how I feel about myself. And as mentioned in the introduction, this leads me to live a double life during times of ill-health; privately managing symptoms in order that I may publicly present a healthier version of my self.
I see universal principals in my own search for selfhood or identity. When a person’s identity is incongruent with society or the perceptions of other’s, there may be a loss of human potential. This not only applies to person’s with disability or chronic disease, but may also resonate with any person in society who is subject to the judgment of others for the color of their skin, who they love, where they are from, or other reasons for marginalization.
Ultimately one’s selfhood is fragile, mutable and beautifully ever-changing, and directly relevant to finding meaning in one’s experiences.
Living with a rare disease is a major learning experience, comparable to aging. It leads to the realisation that one lives in one’s body like a captain in his boat. The captain is not the boat. The captain may be excellent but the boat may have a manufacturing default, or it may have a breach after a hurricane, or it breaks down because of a problem in the engine. The captain’s sole responsibility is to lead it as best as possible until it goes down. The other realisation is that finding meaning and joy in life is unrelated to the state of the boat. Between other things, what counts is the wisdom and enthusiasm of the captain. It is linked to his ability to live in the “here and now”, his ability to link to others, to promote capacity, courage, hope, trust and so many other constructive human traits in himself and his crew. It is linked to the conscious decision not to let oneself slide into fruitless comparisons with others or what should or could be.
Rachel Chevallier, Swiss psychologist
My experience with rare disease has been that it requires perseverance, faith, luck, help from friends, family and experts, and resilience, just like with the multitude of other challenges one faces in a lifetime.
As I am the captain of my own boat, I can influence the shape of things to come or at least how I react to them. Moreover, I can derive meaning and purpose from the heights and depths of my life experience; a process that only I will ever truly comprehend.
In his novel, Of Human Bondage, Somerset Maugham considers the meaning of life as like an intricately weaved rug made all the more beautiful for its complexities. In other words, for life to be a masterpiece it needs to integrate its many layers of pain, joy and varied experiences, and can only be truly understood and interpreted by the individual person – the artisan.
It would be a work of art, and it would be none the less beautiful because he alone knew of its existence, and with his death it would at once cease to be.
This photo narrative is dedicated to the loving memory of my mother.
Mary MacKenzie Malcolm Leydorf
November 13, 1933 - January 08, 2013
In lead up to producing The Soul of Common Things, I met with a number of people who live with different forms of chronic rare disease. It was the first time that I had ever met someone who lived with my own condition, even though I have had it for over forty years. These meetings, talks and shared stories influenced the evolution of this project and helped me to find understanding and resolution of my own experience. It is with gratitude that I acknowledge the contribution of these individuals towards this project.
Iliana lives with Takayasu’s Arteritis, a rare condition affecting the blood vessels. She is pursuing a Bachelors degree in bio-chemistry, while also training in and teaching Salsa dancing.
Emma lives with Addison’s Disease, a condition that I also have. She is an accomplished and award winning Irish dancer.
Claire lives with Hypoparathyrodism like myself, which is the disease focus for The Soul of Common Things. Claire works in a full-time professional corporate job, loves to travel and play netball and is close to her partner and family.
Isabel also lives with Hypoparathyroidism (HPTH) and was the first person who I ever met with my same condition. Isabel is a mother, daughter and a wife, with a career in multimedia production.
Evanne works as a web designer, while also co-facilitating the San Francisco Lupus Self Help Group, helping others who have Lupus like herself to find their way.
Phil is a retired lawyer who now advocates on behalf of patients living with Waldenström’s macroglobulinaemia in the United Kingdom. He chronicles his life and experiences on his blog, “Leaning towards the light: Life, Love and Photographs”. http://www.lifewithdoctordoubleyou.blogspot.com
ii: The Domain of Dreams
Audio 1: Mother - The unthinkable.
Mary: I think our greatest worry was that something would happen to one of you in your childhood. We did not think that we could stand it. We really though that would be the most devastating thing that could happen to us. And we talked about this. It would have been just absolutely crushing. I don’t think we could survive that kind of loss.
Audio 2: Myself - My small spaces.
I liked small and contained spaces. No one could react to my episodes when I was alone in my room. It felt secure. Peaceful.
Audio 3: Father - On an introverted child.
Especially when you were younger you were very quiet.
iii: An education like no other
Audio 1: Myself - A window of time.
My hands and face would start to cramp, and my legs would go weak and at this point I would have about thirty seconds before it could get so bad that I could barely walk, or even completely lose control from all of the muscles in my body going into spasms. I would have intense anxiety because I never knew how bad each episode would be, like if it might stop with the hand and feet cramps or get worse where I could lose consciousness or go into seizure. I would try to find a quiet space quickly to let it pass in private so people could not react to it. I had about ten to fifteen episodes per day for three years.
Audio 2: Myself - The hardest part.
I think the hardest thing for me about being ill is how people react to it. I remember my father crying more than once when standing by watching me play. Another time I had severe spasms in class and the teacher thought I was making a joke and tried to fail me. My mother closed her medical office to go speak with the teacher directly and I recall passing the class, but barely.
Audio 2: Myself - A child’s lie.
After some time I learned to lie about my condition. I did not want to upset anyone any more because of my illness and I was mortified by all of the attention. So, I when my mother would regularly ask how I was feeling I would say that I was fine and that nothing was happening. I couldn’t carry that off for long though. I finally seized in front of her when we were in a restaurant and it was a turning point for her finding my true diagnosis.
Audio 3: Mother - Intuition.
I was trying to do all the right things. You know. We have gone over this. Two hospitializations, too diagnostic studies, all the reassurance that this was just a prepubertal epilepsy and it would go away as you got older. All this reassurance, and feeling as a physician that it was all wrong.
v: Finding my source of power
Audio 1: Myself - Doing more.
I continued to ride horses during the time of my seizures and episodes. I would go about four or fives times a week. I had friends there, plus my trainer Izzy would be calm when I went into spasm. Plus I could do so much more on a horse. It gave me power. And I got the impression that the horses could sense I was not well and kind of took care of me. Like I remember falling off from seizure once and the horse stood by and lowered her head down close to me to see that I was okay.
Audio 2: Father - Couldn’t watch.
Some of the worst moments of my life as a parent, where I had an absolute lump in my throat, when you would go over some of those jumps. You were so small (Mary interjects “and the horse was so big”) and not very strong, but you just flew over those <fences> with no fear at all. I just had my heart in my throat. But you were awful good.
Audio 3: Mother - A philosophy
And your father…..do they need to jump horses over fences? And I said, well, you’ve got to go for the gusto!