From Medical Catastrophe Comes the Gift of Clarity
Written October 2016
From Medical Catastrophe Comes the Gift of Clarity
Becoming ill at age 18 is an experience that I have learned a tremendous amount from, and one that I never saw coming. Central to this “education” has been adjusting to and becoming competent in navigating the medical institutions I rely on. When my pain and illness began, which later turned out to be growths on my ovaries that required surgeries and intensive treatments over the next few years, I was young and lacked the context, perspective, experience, and self knowledge that I have now.
Prior to illness, I regarded my health and my understanding of the medical world passively. I deferred to my parents, doctors, and other medical professionals. My illnesses and becoming disabled changed all of this. I learned about the importance of my own research, being organized, asserting myself, and being specific about my needs and expectations.
Ma’ayan and Zac
My skills, knowledge, and insights gained
The bulk of my experience before illness was as a student. I was very organized, self-directed and comfortable with adult figures such as teachers. I even graduated from high school early, and was already a couple of years into college when I became ill. At first I wanted nothing else but to get well, so that I could go back to my “normal” life. I naïvely assumed that following doctors’ orders would ensure this outcome.
However, as my experience of pain and illness did not resolve and my condition became chronic, I learned the long and hard way, the value of taking action and initiative on my own behalf. I vividly remember my doctor at the time saying, defensively, “don’t back me into a corner” when I protested that I would not be able to work if I was taking painkillers, the only course of treatment being offered to me for my pain. It became essential that I undertake my own research and investigation into treatments both allopathic and alternative. From being involved in social justice movements such as LGBTQI rights I had the benefit of knowing that what we are told about ourselves by “authorities” is worth questioning if it does not match our own convictions and experiences.
Even so, the exhaustion of being ill and of surgeries and treatments, and witnessing my friends living relatively carefree lives, was devastating. My confidence took a huge hit (one which I don’t think I ever fully recovered from). The emotional anguish and feeling like a failure for not being able to stay in college was heartbreaking.
When I was 23 yet another life-altering medical experience I never could have imagined changed this: my younger brother, Zachary, who was 16 at the time, went from being fully ambulatory to becoming a paraplegic. Unbeknownst to my family up until the moment it started to bleed internally, Zac was born with an arteriovenous malformation (AVM) in his spinal cord. This is perhaps best known to people as what character Nate in the HBO series “Six Feet Under” had in his brain.
Zachary, who has Down syndrome and was adopted by my family as a baby, required around the clock advocacy. In total he was in the hospital and rehabilitation for three months. My mother, father, or I took turns rotating so that each of us had a few days on and a few days off. This is where I began to understand the impact of all that I had learned as a patient, myself. I found that my ability to think strategically, to synthesize a lot of information, to manage many different moving parts, and to have a collaborative approach were valuable. I knew the importance of being skeptical and not simply “going along to get along,” while also building trust with medical professionals. In the process I learned to work with strong egos and personalities to establish mutual respect.
My primary learning included:
Informed decision making
Dealing with the unknown
Keeping as level-headed as possible in an emotional situation
Maintaining a sense of focus and purpose
Not getting overly distracted or activated by the immediate interactions
Keeping an eye on the big picture and the long view to get the best care
Keeping interactions human and personal even if/when the objective is not to have “feelings” cloud one’s judgment
Using and developing critical thinking skills
The importance of empowerment
The fallibility of relying too heavily on evidence to legitimize experience
Creating my own system for evaluating health professionals
The importance and benefits of collaboration
It can be beneficial to doubt, and also to give others the benefit of the doubt
I also realized how much medical insight, vernacular and vocabulary I had gained, as well as an appreciation and a facility with how doctors think and interact. I knew to ask questions and then to ask them a different way or ask a different person. I knew to ask about alternatives. I had learned how to maneuver to assert myself and communicate effectively to achieve what was needed. For example, clearly expressing “that won’t work” or “I don’t agree to that, what are my other options?” are essential to dealing with hospital personnel. There were also times when observing and knowing how to be a silent presence proved important.
My lessons learned
I have found much of what I learned/experienced as a patient and advocate for my brother to benefit my decision-making processes in other aspects of my life, such as asking, “If none of the options on the table existed, what would you recommend?” My ability to prioritize and to zero-in on the “critical path” that has the greatest potential has improved. I am now better at maintaining a focus on target outcomes while simultaneously staying centered, not becoming caught up only on end results.
My own experiences have fortified my empathy and commitment, which has directly translated into my personal relationships and my professional success in representing marginalized people. Being immersed in the medical world has led me to understand how important it is to discuss my experiences and not allow shame due to pervasive stigmatizing attitudes keep me quiet (In fact, I find these prejudices to be some of my best motivation). I am dedicated to being a force for positive change.
The importance and impact
In my childhood, having chronic infections, often feeling unwell, and being sensitive to pain were predominantly met with judgment, dismissal and disbelief. I, too, believed that my actions were all suspect, especially when the symptoms I was experiencing didn’t match up with the “hard evidence” and it was assumed that I was exaggerating. I confronted this prejudicial attitude with my parents, other family members, and many medical professionals.
In learning to advocate for myself I have gained confidence. Experiencing the biases first hand has prompted me to research and investigate for myself where the stigmas and prejudices about pain and people with “invisible” disabilities like mine come from. My perspectives have been transformed through these explorations, from having a deeper understanding of the sociological elements, to the political factors as well as looking at family history and reclaiming my narrative of pain. This learning and opening to conversations with my parents and other family members has brought us closer. What I have learned on this path has led me to what I now see as my life’s work of researching and writing about my own experiences as well as pain and “invisible” disabilities in a social justice context.
Zachary is now 23 (almost 24!) years old and is in an art program for adults with disabilities, which he absolutely loves. We talk and see one another often.