A Test of Faith
I grew up in total poverty in a small town in northern Michigan, the middle of 5 kids. My father, who had wanted a career in the Air Force, was out on a medical discharge with Lupus and AS. He was completely fused, but he fused straight. We used to joke that he walked like he had a broomstick up his butt! We didn't realize he COULDN'T bend. What little he worked as a bartender didn't bring in enough to support the family. Most of what he earned he and my mother drank. My brother and I worked picking strawberries, picking potatoes, pedaling newspapers and finding raw copper to sell to the tourists. Mom had severe back and stomach problems too. Looking back now, I would say she most definitely had AS. She lost a lot of her range of motion and had 3/4 of her stomach removed because of ulcers. Also IBS and Iritis. I think she and my father drank to relieve the pain. And of course there was a Bad gene pool. Really bad.
Needless to say, between constant pain and heavy drinking, my family life was dysfunctional. My brothers and sisters and I knew first-hand, abuse, hunger, fear and pain. But, for the most part, we were able to deal with it with humor and hanging on tightly to each other.
When I was around 7, I got rheumatic fever. I remember being very ill and not able to walk. My older brother was babysitting. He tormented me, telling me that I probably had polio and would never walk again. Or that I'd end up in an iron lung or dead. I was hospitalized for quite a while and after I got back home I started having leg and back pain. They called it "growing pains." I really hoped that I was growing, as I was the shortest, fattest kid in my class.
A few years later, I started having seizures. I was taken to a hospital in Green Bay, where they did a lot of testing. I spent my 12th birthday there. They had a hard time doing a spinal tap on me because of the arthritis in my spine! The diagnosis was spinal arthritis, and a calcium deposit on the inside of my skull, which was causing the seizures. The calcium deposit was most likely caused by getting hit in the head with a chunk of firewood. Medication was given to dissolve it. By the time I was 13, the seizures had stopped.
By age 14, I was almost 200 lbs. and only 5' 4" tall. My back and leg pain was then blamed on my weight. Gradually, the pain was getting worse.
Dad died when I was 14 leaving Mom with 4 kids still at home ranging in age from 4 to17. My older brother got married and moved out, leaving me the oldest child in the house. Mom's way of coping with the loss of Dad and the constant pain was to drink. I took care of my younger brother and sister until I couldn't stand it any more and I ran away from home. My back hurt all the time and Mom's drunken boyfriends would beat me. I was afraid they were going to cripple me for life! So I left. Back in the mid 60's, kids didn't have a lot of rights. Mom called the police, saying that I was a runaway. I spent the next 2 years going from one foster home to another. In all, 4 institutions and 13 foster homes. Some were good. Most were not. Many people then wanted foster children to be farm hands. My back wasn't strong enough for that kind of work so they called me lazy and was beaten. I spent a year in the Girls' reformatory for being a runaway and incorrigible. They never looked at what I was running away from.
The year I turned 16, there was a major transformation. I went from being 5' 4" tall (I still hadn't grown, in spite of all my growing pains) and 220 lbs., red hair and glasses.... to 5' 10" tall and 110 lbs. My hair darkened to a rich auburn and I got rid of the glasses. People didn't recognize me! I hadn't dieted or anything. My metabolism changed and I blossomed.
But this rapid growth played hell with my bones. I would lay in bed in the morning and cry, thinking about having to get up. I knew once I was up and moving I'd feel better, but getting started was so painful! I didn't associate the pain I was having with the disabilities my parents had. I just never made the connection, and no one bothered to tell me about it either.
When I was 16, I went back home to live with my mother again. This didn't last long. She hadn't changed, except perhaps for the worse. I dropped out of school in my senior year. After a couple of months I got bored, took my GED, passed in the top 10 % in the state, and entered into Michigan Tech. I was going to be a med tech. This isn't what I wanted, but this is what was paid for through the veterans, social security, and Voc rehab (rehabilitating me because I was a delinquent) I wanted to be a commercial pilot, but in those days, girls just didn't do that. They told me what I could be and what I couldn't be. After a couple of months I quit and got married.
In all there were 3 bad marriages to drunks. All of them much like my father. And 3 kids. My shortest labor was 73 hours! And with each one, afterward the doctor said, "That one probably should have been a c-section." (20-20 hindsight!) For some reason or other, they said, my pelvis didn't want to spread!
In 1972 the drinking age in Michigan was dropped to 18, I turned 18 and I started drinking heavy. It was a good pain killer. And I found I could drink men twice my size under the table! Sobering up was pure hell though. Besides the hangover, I'd have the back and leg pain. And by this time I started to have bowel and stomach problems too. I know now that drinking didn't help it any, but at the time all I thought about was killing the pain.
When I was 25 years old, I had 2 kids, and my body was falling apart! I blamed bad nutrition, childhood abuse, and working too hard. There were times when my back and legs weren't too bad. During those times I was very active physically: running, horseback riding, skiing, water skiing, snow shoeing, hiking, etc. Then out of the blue, I'd be laid up again. My back would go out and I couldn't straighten up. I'd shuffle along, unable to lift my feet. If I came to a rug, I couldn't lift my feet high enough to keep from tripping over it!
During those bad times, my bowel would act up. I'd for many days, afraid to eat, knowing I'd get sick. I got thinner and thinner. Then, with no reason that I could figure, I'd be okay again for a while. Mostly I blamed stress and lousy nutrition as a child.
Kenley was born 3 months premature and weighing 3 lbs. in 1981. Shortly after his birth, he started to deteriorate. He was losing weight, bleeding internally, and not responsive to pain. The doctors told me that he probably wasn't going to make it and If I was going to have him baptized, I had better do it soon. Unable to find a pastor to baptize him, I did it myself. And I prayed. A lot. I prayed, "God, please don't let my baby die."
After a while, the prayer changed. And I spent one whole day where every breath I took was a prayer. It was: "Lord, if you have to take him, please give me the strength to live with it, and please take him quickly. Don't let him suffer. But if you choose that he should live, help me to be a Good parent to him." That night I got a call from the hospital. I totally expected they would tell me that he was dead. Instead they said, "He gained an ounce!" From that point on he gained an ounce or 2 a day. His internal bleeding had stopped and he started responding to his surroundings. A miracle? I think so. He was3months in the neonatal intensive care and came home at 4 1/2 lbs. I dressed him in Cabbage Patch doll clothes!
Two years later I started working at a small newspaper as a reporter. I loved my work and I was good at it. My husband stayed home with the kids. I was putting in 60 hours a week. Then, covering a story one winter evening, I got out of my car, slipped on the ice and wrecked my back. I got up, dusted myself off, went in and covered the meeting. I went back to the paper to write up the story until the editor sent me home. My back was killing me!
The next morning I woke up more sore than I had ever been in my whole life! I bent down to get a pan out of the cupboard and my back locked. I couldn't move! I called the Dr. and couldn't get in. So I called my chiropractor who took me in right away. He did a manipulation, something in my back crunched, sending pain down my legs. The next day I was in the hospital, in traction. He had manipulated a broken vertebrae! A month later I had my first back surgery and then spent the next 4 years in a wheelchair.
When I filed for comp, the newspaper fired me. No income, not a pot to pee in or a window to throw it out of! I was home with my husband and seeing what he'd been up to... he'd been drinking and abusing the kids. When I tried to kick him out he went nuts, beat the bunch of us, threw me down the stairs in my wheelchair, and left us for dead. He threw Kenley, head first, through a wooden door, taking chunks out of his scalp right down to his skull! The state filed abuse charges against him. Because his father was a GM bigwig and could afford fancy lawyers, the man never spent one day in jail.
But good things can come from the worst situations. I was alone with my two youngest kids, Casey and Kenley. Annie was living with her father. I had a small farm and raised dairy goats. I was in a wheelchair. I was broke. I got a very small comp settlement. And in the next month, I had THIRTEEN marriage proposals! Every mutant, moron and cretin in the county! The BEST one of the bunch was almost 400 pounds, alcoholic, hadn't worked in 10 years and smelled moldy! They were all willing to profess undying love for me... for a piece of my settlement. Looking at how ridiculous the situation was I found some courage. I decided to be the best parent I could for my kids. I would do whatever I needed to improve their lives.
I sold the farm and the goats, packed up everything I owned into a beat-up station wagon and a small U-haul and moved to Tennessee. Just me and the kids and the dog. A fresh start. And I started going to church. I was told that kids who go to Sunday School are easier to raise and I figured I needed all the help I could get! (By the way, it's true!)
From that point on my life has improved. After a year I moved back to northern Michigan where my family was and where rattlesnakes aren't. I used what money I had left from my settlement to buy a house.
In response to the desperate depression I was in, where I was suicidal, came a rescue from the church. I started attending every Sunday. The church wasn't handicapped accessible and someone would be there to bump me up and down the steps in my wheelchair. I swear I don't know how they didn't jar every tooth out of my head!
After another surgery, physical therapy and just plain stubbornness, I was up and walking again. And I met the man across the street from me. Marv and I hit it off immediately and are now engaged to be married. We aren't rushing into things. (It's been almost 10 years now!) Both of us are a gun-shy, and there's the problem of health insurance.
About that time, Kenley started having problems with his knees. Overnight he lost 50% of his range of motion. His knees and hips were swollen and sore. I took him to the University of Michigan and they diagnosed him with AS. Based on family history, and the problems I was having, they suggested that I be tested too. I got back home, told my Dr. what they had said and she ran the tests. I was HLA-B27 positive. Suddenly all of the health problems became linked. Before I saw no connection between the eye problems, IBS, arthritis, stiffness, etc.
Finally, I had a name for the problem! Didn't know what to do about it, but there was some comfort in knowing that it wasn't "all in my head" as I had been told so many times. I put it in the back of my head and didn't think much about it for several more years.
I went to back to college. 20 years out of school, and there I was on Campus at Suomi College in Hancock Michigan. And I managed a perfect 4-point! That year I had surgery on my neck. A fusion where they took bone from my hip. For a good part of my second term I was in a neck brace. But, to make light of the situation, I found the most ridiculous hair bows I could find and wore them like bow-ties on my neck brace.
I wanted to go into theological studies. I was being drawn toward that field. But, again, I ended up in something else. Human Services. I enjoyed it, but it still wasn't quite right.
Then, in 1993, the Presbyterian Church started a new program... Commissioned pastor. My pastor suggested that I enroll. I could do my studying at home & work around the health issues. I balked but it seemed that every time I turned around, there it was again. I thought that I was about the last person on earth who should become a pastor. My past life seemed to have eliminated that option. But, it kept jumping back in my face! So I enrolled, thinking that I would never be accepted. No one was more surprised than I was when they told me that I was in and they felt That I would be a good pastor.
I studied hard at home. I found that when I couldn't sleep, the best sedative I could take was 3 or 4 pages of systematic theology. Put me right to sleep every time! On bad days, I studied in bed. On good ones, I went to the church. And I felt, beyond a shadow of a doubt, that I had found what I was meant to be doing! I loved it!
In 1996, our pastor left for another church. Our small congregation couldn't afford to hire a full-time pastor. They approached me and asked if I would lead their flock. After consulting with the Presbytery and getting their approval, I agreed. I hadn't yet finished my training, but I had become a pastor! Preaching every Sunday, Bible studies, visiting shut-ins, taking care of all the "church business." The congregation knew of my physical limitations and made allowances. They knew that there would be days when I wasn't able to do much at all. They also knew that on good days, I'd make up for it.
And finally, in June of 1999, I was officially commissioned. I am, officially, "Pastor Rebecca Koivu." For the first time in many, many years, I cried tears of joy.
Getting back to the AS...
By this time, I've been having bouts of Iritis 8 to 10 times a year. IBS flares up regularly, being worst during the spring and fall. Almost every joint in my body has flared up at one time or another. The pain is constant. It never goes away. Some days are better than others. Some are pure hell. And with the pain comes depression. I use humor to deal with pain and depression. laughing DOES help produce endorphins! And besides, if I didn't laugh, I'd have to cry. And if I cry I get a snotty nose and then my sinuses infected and then I get bitchy.
And I have my animals. Robert Service once wrote a poem about how it's a good thing that dogs can't talk. I tell things to my dog that I could never tell another living soul. T-bone, Larry (the world's oldest hamster) and my hedgehogs (Chance, Claire, Hobbit, Spike and Fluffy) have been an immense source of comfort to me.
And I have my faith. Without that, I would not have survived.
Last year, when Kenley was having a particularly bad flare-up, he decided to do a report for his science class on AS. In searching the Internet, he found this site. He was so excited! He called me in right away to show me.
And through this site we have learned more about AS than we ever knew before. Before, it was just a name for all of the problems. Now we found there was more to it than just that. And there's hope. There's support. And I thank God for that. I thank God for every one of you.
God bless you, every one.