by Melody Holloway
Before I received formal confirmation of misdiagnosis at age 37, I was already coming to understand repercussions of living with a one-of-a-kind set of circumstances. Implementations of survival mechanisms arising as human adaptations, coping mechanisms, and attempts to reach safety were replaced by increasing burnout, depletion, health deterioration, and loss of hope.
One particular afternoon, after a recent uptick in chaotic occurrence, I asked a friend to drive me to an emergency department. The first hospital dismissed my concerns. My driver refused to navigate through construction taking place on Ohio State University’s busy campus in order to transport me to the OSU Medical Center. I ended up bothering my mother after she arrived home from work.
I was triaged, placed in overflow, then taken to a holding room. A thin curtain separated my bed from that of the other patient. As I waited to be assessed by medical, psychiatry, and nursing personnel, I heard a talking book playing on an NLS player. I turned toward the neighboring bed and softly spoke up. “I have a player like yours.” A frustrated, scared, yet determined young boy’s voice replied, “Are you blind?” “Indeed. How old are you?” “I will be fourteen in October.” I felt a wrenching pain stab through my heart. This young man is in survival mode, already being run through the ringer of an unfair, inconsistent mental health system largely peppered with bureaucracy, technicalities, procedure, policy, protocol, lack of consideration or concern for traumatic experiences, disability advocacy, environmental upheaval, familiarity, social deficits, malnutrition, sleep deprivation, and becoming accustomed to not being heard.
“I am 33,” I told him.
As we talked further, I learned this boy was a student at the Ohio State School for the Blind. I graduated as the valedictorian in 2004, a period of time that was as painful as it was memorable. The boy was a residential student living in a foster care home for weekends and holidays. He had the same awesome orientation and mobility instructor that my classmates and I previously had. He expressed tremendous appreciation and gratitude when telling me she gave him $5 during a mobility lesson when he was practicing navigating to a restaurant, placing his order, and soliciting aid at a local shopping mall. This specific level of gratefulness would appear over the top for someone taking financial well-being, kindness, and a guaranteed roof over their head for granted. This boy had no reassurance that any of these would be available for him. I found commonality in this unspoken comprehension.
I had similar memories of this O and M instructor, as would some reading my article. She is one of those people who views mobility lessons as a mission, connection, dedication, and true passion instead of a 9 to 5 job.
The boy’s foster care caseworker came in our joint room to talk with him. He was being discharged after being evaluated, even though life had hurt him to the point of inflicting bodily harm and running away from the school cottages. He absolutely did not want to return to his foster care placement; however, he had no choice due to chronic mishandling and limited availability of foster parents, especially those willing to take time for a visually impaired, emotionally oppressed, mistrustful, hyper-verbal teenage boy whose biological parents projected their invalidation, misgivings, avoidance, and lack of preparedness on a son they most likely had not planned, thereby using him as an outlet and excuse for failing to establish an appropriate foundation.
The caseworker was a kind, gentle, attentive lady who obviously cared about this boy. She kept asking him why he was so apprehensive about returning to the foster home. He was so burnt out, picked on, and frightened that he withheld any information. He probably thought she wouldn’t understand. When someone becomes conditioned to believe they will not be listened to, believed, understood, or considered that early in life, the battles which accompany adulthood become much more unpredictable and informative simultaneously.
I started playing with an idea right there in that emergency holding room, an idea which turned to a full-fledged aspiration as years progressed. Suppose I could adopt a difficult-to-place foster teen living with disabilities, medical complexities, poverty, and/or behavioral trouble before they age out of the child protective services system at 18 and are left to fend for themselves? This boy has potential. He is intelligent as all get out, genuinely compassionate, and has a wealth of technological skills. He was adept and efficient using his caseworker’s two iPhones with VoiceOver. One had a home button.
After he changed into his own clothes, he and the caseworker waited for the nurse to give him his discharge paperwork. He turned to her and quietly said, “The lady in the other bed is blind too. She graduated from my school a long time ago. She’s really nice. She knows my O and M instructor.”
I was admitted that time. While I waited for a bed, I wondered how I would bypass supplemental benefits, societal perception, and extreme low-income category in order to make it out of the unprovable situation which laid groundwork for my own decline in order to apply to become a foster parent, pass a background check, and constructively handle such questions as, “Don’t you need someone to care for you? Who helps you at home? How could you possibly take care of a minor?”
All of the above in addition to incorrect labeling, additional disabilities, health conditions tough to understand, and sacrifice of disability-related benefits, health coverage, and affordable housing have, in fact, stood in the way of this ubiquitous goal. I never forgot the boy whose name I am protecting for the sake of confidentiality. I only hope he found safe, consistent placement which nurtured his tender spirit and allowed him to express feelings, desires, and future endeavors.
After the passing of my dear friend with traumatic brain injury whose advice, lessons, and plight will always guide me, many focused on my loss of purpose. This is definitely applicable, valid, and accurate; however, benefits, welfare, safety, needs, and best interest of the other party are thrown aside. We both faced scrutiny as the undeniable team we proved to be. I continue to face such scrutiny to this day. My emotional wellness, stability, competence, capability, and incorrect paper trail culminate in the crown of thorns interfering with true medical needs, confidence, daily interactions, and basic rights.
During a recent hospitalization, an internal medicine physician asked me if I would like a palliative care team consult. Riding the roller coaster called life yields interesting, often misunderstood results, allowing doors to open which plant communal seeds of prosperity, growth, patience, peace, and love presenting as diplomas from the school of hard knocks. When we use these diplomas to foster future leaders, we honor those who fostered us. “Life is not fair” is not always an ideal mantra to live by.