Why I am a Disability Peer Advocate
I thought I’d share my back story with you, so you the reader may better understand why Disabilitypeeradvocates.com matters to me and my hope… that the content of this site will be of value to you.
I have had a wonderful and “unique” life. Though I chose the word ‘wonderful’, sometimes I interchangeably use the phrase “living the dream” (a sarcastic moment), as life has a way of feeling less than wonderful sometimes.
As an adult with ADHD (type ‘I’ Inattentive), life moves fast and my mind moves faster. I have an innate knack for seeing patterns, specifically in other people and ‘systems’ I am exposed to, but it seems I (often) have a blind spot applying this gift to my own life (though I actively working on it).
I experienced a spinal cord injury in 2015; I unknowingly lived with this injury for a minimum of 5 months prior to being diagnosed with Cervical Myelopathy. During those 5 months, I experienced: pain and numbness in my extremities, gate changes, muscle spasms if exposed to hot or cold temperatures, leg tremors, fatigue and an all consuming fear resulting from “not knowing what was wrong”. I also learned I have a high tolerance for pain. I remember dismissing the neck/arm pain by thinking or saying out loud ‘I must have slept wrong’, ‘I need a new pillow’ and my favorite ‘I must have slept like a pretzel last night’.
At the time I had HMO insurance, which meant I would have to go through a myriad of medical tests (X-Rays, EMG, blood work, etc.), get ‘referrals’ for each specialist I was referred to, all in efforts to meet my insurance’s criteria to validate the need for MRI’s. By the time I reached the neurologist, he was also testing for Multiple Sclerosis, which introduced another layer of fear and ‘what if’s’.
Certainly a frustrating system to have to navigate, which took time (months just to see a specialist) and money (co-pays at every turn). MRI’s of my neck ultimately provided the answer, which was a relief and surprising; I learned that surgery was imminent due to compression of my spinal cord that had caused signal changes where the cord was compressed (which accounted for the the wide variety of symptoms). I was then referred to a Neurosurgeon, who would perform the necessary surgery to remove the compression and stop further damage to the cord.
The parts of my story not mentioned (the back story to my back story): I was diagnosed ADHD in 2011, after experiencing several ‘Major Life’ events and my life was no longer manageable with the ‘coping skills’ I had previously developed (that allowed me to navigate life in my own way, as an undiagnosed/unmedicated adult with ADHD).
After being diagnosed, at no time was I ‘educated’ or ‘informed’ on what a diagnosis of ADHD meant for me or how it was actually effecting me. Examples: I never knew why I had felt “tired” my whole life (after a good nights sleep), or why I would “zone out” into a calm/quiet/”void of all thought place in my mind”, or the dozens of other ‘Charms’ (I call them Charms as I realized that some of my quirks were not so Charming)… I would come to identify these Charms after being medicated; as I could then see the world and myself more clearly, instead of looking through what I have referred to as “a dirty window screen”or “a fog” of sorts.
Diagnosis in hand, I ‘Googled’ ADHD symptoms, starting with medical websites (Mayo Clinic, Web MD, etc). After exhausting those sites, I switched to blogs; looking for people who had reported symptoms that sounded like me, that I could related to. I just wanted answers, and when ‘you’ don’t know what questions to ask, it feels impossible to get the answers needed. Who is responsible for educating patients about new diagnosis and prescribed medications? If not the doctor, then who? Is ‘Google’ the leading provider of medical information?
In 2015, once diagnosed with Cervical Myelopathy, same experience: at no time did any of the many specialists I was referred to talk to me about this diagnosis, how it would manifest in me short and/or long term, how to manage symptoms or any other necessary information on ‘what to expect’. I didn’t so much as receive a pamphlet. Though one of the doctors did say to me, when I asked about my gate and the likelihood of improvement, ‘most of my patients with your injury are in wheelchairs, or use a walking aid’. Not sure what he said after that. Where was the empathy? I was afraid, in pain, looking for hope or some type of reassurance. Is empathy a lost art in some fields, or just not prevalent in the medical world?
Again, I found myself ‘Googling’ Cervical Myelopathy symptoms, reviewing those same medical sites, desperate to find what I was looking for; to be empowered, and for me, information is power. Versus how I was feeling at that time, which included fear, anxiety (often related to my physical changes), uncertainty about my future (career, as a parent, living with stairs, etc), frustration with the medical/insurance ‘systems’ and of course there was the pain and discomfort.
My goal for Disabilitypeeradvocates.com… to share information on the subject of Disability and Employment, that I have learned in my personal life, and professional experiences. Whether the Job Seeker is applying for Employment Services or seeking employment independently… my hope is to empower that individual with the information needed to make informed decisions, generate questions that the individual would otherwise not have known to ask… to demystify the ‘system’ and shed light on ‘what to expect’… all in efforts to abate fears, reduce frustrations and promote success. I do this because it matters to me, and if your reading this, it must matter to you.
I am a Peer Advocate