In preparation for an ‘interview’ a friend is going to conduct, as an assignment for their Master’s degree, with me, I was given a series of questions to think about and asked to take some notes. I thought it would be a good use of my blog, to record my answers, and to address my disability and how it’s affected my life, seeing as how I have invested more time and thought on understanding my childhood and the abuse I survived.
The question was “What role does spirituality, faith, or religion play, in regard to your disability?”
To answer this question, or perhaps more accurately, so that others can understand the answer to this question, I’ll need to provide some background.
I was raised in a home where only the most ‘basic’ of ‘religious’ stories were taught. There was no formal religious education, whether through our parents, grandparents or a church. My grandmother, maternal aunt and cousin were Seventh Day Adventists who attended church regularly, I believe there were members of my paternal family who were Pentecostal that attended church regularly, but those of us that shared my childhood home didn’t attend church.
As I matured I was aware that there was a lot of inappropriate language, a lot of fighting, marital infidelity, a lot of dishonesty, jealousy, envy, resentment and hatred within my family.
As a young child my only experience with ‘church’ was a Summer Bible School event at my great aunt’s church during which Native Americans did a demonstration. My sister and I only attended the Native American show.
When my parents were in the process of divorcing my mother suddenly and inexplicably decided we needed to attend church and began taking us to our grandmother’s church. Her church was a one room building with a dirt basement with one bare bulb hanging from wires in the ceiling of the basement. The ‘children’ attended ‘Sunday School’ in the basement. The congregation almost completely consisted of elderly women.
My first ‘real’ exposure to church services and Bible study was overshadowed by the weekly gossip of the congregation. Everyone’s personal life seemed fair game as topic of conversation. I learned more than I ever wanted to know about who had what surgery, who was recovering from what procedure, who had what ailment, who was having marital problems, who was having financial problems, etc. For the first time, perhaps because I never had any interest or cause to be interested, I became acutely aware of my grandmother’s complaints about procedures at the church, the ‘burden’ she assumed to assist the pastor in providing communion, cleaning the church, etc.
During one service the pastor (who didn’t last the full year we attended church) gave a sermon about adultery. My mother, divorcing my father, took great offense at his message. She always said she was offended because he said the Bible taught that if you were married to someone who was an adulterer, then even though you hadn’t committed adultery yourself, you were also guilty. He had said if you are married and divorce and enter into another relationship, then you are guilty of adultery because you were married, for the duration of your life, in the eyes of God to your first spouse.
I learned, much later in life, that she had been the ‘other woman’ in my father’s first marriage, while his first wife was pregnant, contributing to the ending of their marriage.
Just as abruptly as our ‘church experience’ had begun it ended.
I struggled in my heart and mind for many years as a teenager, to digest and understand the lessons we’d been exposed to during that year in church. I was familiar with the general lessons that we are all God’s children, that He loves His children and that we are to lay our problems and concerns at His feet and trust in Him to protect, provide for, love and forgive us.
I had an understanding of the Ten Commandments, but also realized that a number of the adults in my life disregarded them. I had been taught a basic child’s prayer and said my prayers every night before bed, but quickly recognized that regardless of what I prayed, the opposite result occurred.
My mother had been physically violent, emotionally and verbally abusive as long as I could remember. She needed to dominate and control others so that she felt as though she had some power over some aspect of her life.
There came a time, as a teenager, when she beat me, in front of witnesses (something she had never done before) which caused me a variety of injuries that set into motion the development of the conditions that would result in permanent disabilities. She had fractured my skull (which I didn’t know until years later), broken my eye socket, blackened both my eyes, split my lip, bloodied my nose and inflicted a number of bruises across my forehead and down my neck.
The first condition that was attributed to those injuries was chronic, severe migraine headaches. I experienced single events that lasted for 3 week periods of time. I experienced light, heat, sound and motion sensitivity during a migraine attack. My eyes would swell shut, veins would be noticeable on my face, temples, forehead. I lost more than one job during the period of time when I was working with a neurologist on determining a suitable treatment for my headaches, which caused my family financial strain and difficulty.
I became clinically depressed, was put on a variety of pain and psychotropic medications as well as participating in psychotherapy.
During therapy the subject of faith was discussed and I was given an opportunity for the first time to discuss my questions about religion, Christianity and ‘faith.’ No one had any answers for me, instructing me to ‘find my own faith’, telling me no one can help you with that.
I was diagnosed with degenerative joint disease, degenerative disk disease, an unspecified anxiety disorder and short term memory loss, was put on medical leave from work and told I should apply for disability. While fighting for three years to get my disability my husband and I had to declare bankruptcy.
My father had just passed away, I had no contact with my mother, sister, grandmother, aunts, uncle or cousins. I felt so alone. I turned to religion, looking for a sense of belonging, acceptance and family. I attended Bible study groups, volunteered to help with church events, bought various versions of the Bible and read a lot of inspirational books. I just couldn’t get past all the questions and concerns I had. I spoke to a number of church elders and asked my most basic of questions… “If God loved me, if I am never truly alone because He is always with me, if He hears when I pray and He wants me to lay my problems and concerns at His feet and he’ll protect and help me, where was He while I was being beaten all throughout my childhood? Where was He when I was nearly killed during the final beating that led to me leaving home? Why would He allow one of His children to be abused and hurt that way? Why would He not protect His child, an innocent child?
The answer I got was… “He was with you, you didn’t die did you?”
There have been representatives of the church that suggest that disabilities, pain and disease are ‘punishments’ for sins or transgressions that haven’t been admitted to, or asked to be forgiven; perhaps the transgressions of the father or mother being visited upon their children. Perhaps the pain and disability are a lesson, a ‘test’, perhaps there is something God wants us to learn, as everything He does has a purpose, even though we don’t understand.
That didn’t do anything for my ‘understanding’ or search for ‘faith’, what it did do was create more questions and doubts. The more I interacted with people who identified as “Christian”, the more questions and the more doubt I struggled with.
I forced myself to push through or perhaps push back against my pain and disability and went to work for a disability rights organization. I helped other parents of children with special needs, helped other people with disabilities. The organization’s Executive Director was a ‘Pastor’, but again, as a representative of “Christ” and “Christianity”, what he demonstrated to me was cruel, hateful, deceitful and discriminatory.
I lost that job the day after I had an MRI and received news that I had developed a Synovial Cyst in my spinal canal that caused Nerve Root Damage to my Sciatic Nerve, two bulging disks, one disk that was gone – apparently ruptured and absorbed, Spinal Stenosis and Spinal Spondylosis. I was diagnosed with high blood pressure and severe edema of my legs and feet.
I have come to the conclusion that there are too many contradictions, hypocritical beliefs and practices, too many inconsistencies and far too much bigotry and hatred within my realm of experiences with organized religion, Christianity specifically. I’ve learned I have to put faith in myself, take care of myself, that I am ‘alone’, though I share my journey with some special people.
I’ve developed a personal ‘moral compass’ throughout my lifetime as a result of being hurt and witnessing others being hurt. I know how I’d like to be treated and what I dislike about the way some people abuse others. I developed my own understanding of ‘right and wrong’, my own beliefs regarding how I want to live my life, what my role and responsibility is to myself, others and the relationships I’m able to have while living this life.
Religion, faith, spirituality, to my mind, have played no role in regard to my disability.
Let me correct that, I’ve felt abused by religion, I felt wounded by hollow promises and assurances. I’ve felt abandoned by religion and those who profess to be ‘religious‘. Rather than being comforted I’ve been told that what’s happened to me is my own fault, I didn’t believe, I didn’t have faith, I didn’t trust in God. I was weak. Having multiple conditions and diseases apparently wasn’t enough to live with or feel badly about, I also had to assume the blame for not having been successful in my search for ‘faith.’ I guess it HAS played a role… one of negativity, additional abuse, one that complicated an already complicated situation.
As far as ‘faith’ goes, I’ve had the realization that for me, faith would require the suspension of reality, it would require me to put aside rational thought and explanation to believe in something that is a ‘belief’ that completely contradicts everything I have experienced and witnessed throughout my lifetime.