I was born to David and Jane Mack on June 5, 1970 in the thriving metropolis of Toledo, Ohio. When by the age of 2, I was still not walking, my pediatrician began to get worried. I eventually was diagnosed as having a form of Muscular Dystrophy called Spinal Muscular Atrophy (SMA), Type 1. My parents were told that I would probably not survive much past my second year.
Despite these grim predictions, my childhood continued on fairly uneventfully. There are only a few things that really stick out in my mind from this time period. First, my younger brothers Matthew and Alex were born in 1973 and 1980, respectively. Second, I did a stint as a local poster child for the Muscular Dystrophy Association (MDA) on a couple telethons. (I never understood why they chose me because I was never able to make myself cry on cue.) And finally, I remember spending a lot time each summer waiting in exits at Cedar Point, while the rest of my family road rollercoasters and other rides.
When I got a little older, I started attending the annual MDA summer camp. It was the one week out of the year that I escaped from my parents and got to behave like the teenage girl I was becoming. And every year I'd develop a crush on one or more of the camp counselors. These infatuations inevitably led to unrequited loves, many hours wasted in adolescent pining, and mounds of bad poetry and prose.
Somewhere during this time, I also started high school. My parents decided I should go to a Catholic all-girl high school named Notre Dame Academy, further frustrating my quest for a serious dating relationship. All the nuns seemed convinced that one day I'd realize my true calling and enter the convent. I felt blest if I could go through an entire school day without being patted on the head by one of them and told I was "a blessing from God". I could've easily burned down the school and gotten away with it, even if I was caught red-handed with a book of matches and a empty can of gasoline.
I continued through the next four years of high school as a bookworm, graduated Summa Cum Laude, and landed a four year academic scholarship at Wright State University (WSU). Packing my bags, I headed off to Dayton, Ohio. I decided on psychology as a major, saying I eventually wanted to counsel other disabled people. In reality, I probably hoped to figure out my own scrambled psyche.
Somehow I managed to pull my nose out of my textbooks long enough to develop a fairly active social life. I discovered the 'alternative' scene, shaved and dyed my hair ever-varying colors of the rainbow, bought lots of black thrift store clothes, and started going to clubs and Alternative Tuesday at WSU. With crazy spins of my electric wheelchair, I could clear out entire sections of dance floors for myself. As I submerged myself in the subculture, I fell for a long line of gay man that obviously didn't return my affections. This led to more pining and bad poetry.
By the end of my first year at college, I became totally disenchanted with the Catholic religion and stopped attending campus church services. Instead, I turned to the occult for answers. By my sophomore year, I was using ouija boards, reading tarot cards, and doing spells. Despite having a few real boyfriends during that time period, my love life still wasn't so great. At the end of that summer, I decided I was going to do this huge spell to meet 'the man of my dreams'. Before I did though, I gave God an ultimatum. I told Him he had a month to find me this man or I was going to go through with the spell and turn my back on Him forever.
A couple weeks later I ran into a guy called Lee, that I had been in a class with earlier that year. I had always thought he was terribly rude because I always said 'hi' to him in class and he always seemed to ignore me. When I saw him at Alternative Tuesday that first night after the summer, I vowed I'd roll right by him and ignore him just as he had done to me in class. I didn't pay attention to him repeatedly calling my name as I nonchalantly strolled by, smoking a clove. My plans were thrawted when he stuck his leg out in front of me to stop me. The rest is history.
I learned that he was partially deaf, and had 'ignored' my greetings because he hadn't heard me. We started dating shortly thereafter. Lee was like no one I had ever met before. He was terribly kind and considerate, yet had the rough edges of a punk rocker. He was a Christian and helped me escape from the occultic mess I'd gotten myself into. Much to the dismay of my parents, we started attending a Protestant church. When we announced that we were engaged just five months later, my parents were less than thrilled. When we actually got married, they were irate. Society at large had pretty much the same reaction.
At the end of 1992, we found out I was pregnant with our first child. We were thrilled but scared, realizing that we were headed into uncharted territory. We soon found that being a mom with a disability carries even more of a stigma than just being a crippled wife. After my first ultrasound, the attending physician about blew a gaskit when he found out I had the test before I had genetic counseling. Apparently, knowing nothing about the recessive genes involved in SMA, he was hoping the geneticist would take one look at me and advise me to terminate the pregnancy. (She didn't.)
Due to a severe allergy to the local anesthetic they used during birth, I nearly died 5 times both during and after my c-section. I spent 3 weeks in ICU and 6 weeks in critical care before I was finally able to return home to my husband and new baby daughter, Emili. The time I spent in the hospital was probably the worst, most terrifying time of my life. But despite her harsh entry into the world, Emili grew into a happy, precocious little girl. She developed the talent of wrapping other people around her finger at an early age. And her bubbly presence helped somewhat to mend the rift between us and my parents. I imagined taking her to the ultrasound doctor and saying, "Look at the child you wanted me to throw away."
When Emili was three, we experienced both the joy and fear of learning I was pregnant again, only to loose Echo through miscarriage a week or two later. But less than 9 months after that, I was pregnant again. As weeks turned into months and the due date grew nearer, I became frantic that history would repeat itself. I wrote a lengthy missive documenting the medical complications with Emili's birth and requesting prayers that things would go much better this time. And things did go much, much better. I was able to return home only 4 days after Ravyn was born! All this is documented in what I call my Epistles.
In the summer of 1998, we moved to the Cincinnati area for a couple different reasons. First, Lee has been working as a computer programmer in Cincinnati since 1996. His long commute each day grew increasingly inconvenient. Second, we had also been commuting to Cincinnati on the weekends to attend Vineyard Central's Saturday night services. Rather than spending the rest of our adult life in the car, we decided to move closer to Lee's work and our church.
At first we rented a house within walking distance of the church. However, the church also ran a common-purse commune that was protrayed as being a sort of Protestant neo-monastery. We eventually moved in to one of the commune's properties as 'prospective members'. We only spent 9 months here, soon realizing through a series of events that the commune was not nearly as monastic as it claimed, but more accurately an economically convenient and comfortable living arrangement for its members. The whole thing was a bit too 'middle class' for the more spiritual and frugal lifestyle we were seeking.
Around roughly this same time period both Lee and I began reading and studying about the Eastern Orthodox Church. We were first introduced to Orthodoxy when two of our good friends were married in an Orthodox Church. Lee and I were both struck with the beauty and meanings behind the different part of the ceremony. In addition, Lee had been studying early church history and would often come across writings of the early church Fathers. He has always been deeply grieved by the divisions and schisms in the body of Christ. His research convinced him the Orthodox church is the original undivided, apostolic church. After much prayer and long discussions with both Orthodox and non-Orthodox friends, pastors, and priests, we decided that God was calling us to become Orthodox.
Lee and I were received into the Orthodox Church through Chrismation on September 9, 2001. Our girls were baptized & chrismated on September 8th. Our family attends Christ the Savior Holy Spirit Orthodox Church, which we love! Emili is in sixth grade and continues to use her unusually strong gift of persuasion on teachers and fellow students. Ravyn is 7. She is still ahead in second grade because of our intensive homeschooling experience in kindergarten.
This is my life as it stands so far. If you want more information you can email me. Or you can wait to read a more detailed account when my currently unwritten biography is published.
Last updated September 20, 2004.