FOOLED YOU…YES I AM STILL HERE!
Upon arriving at Fontana Kaiser, the Doctor said, “Hi, it’s good to see you’re still here.” I thought gee, was I supposed to be dead? FOOLED YOU!! Instead of saying anything snotty, I was a good girl and said, Hi, it’s nice to see you again too! The test was set up in a small room and the nurse put the electrical conductor patches on the top of my head and back. I had to stare at a screen with black and white checkerboard patterns on it. As you stare at the center one of the rest of them change all around. When it was finally all finished I felt like I had seen too many bad Purina Dog Food commercials! Then they said there was one more test where I had to roll my eyeballs around. So I lied and said, Oh GOOD, and inside my mind I was going GRUMBLE GRUMBLE! Finally the patches come off and my first thought was that my makeup and hair was ruined. I had a date, with Greg, that night!
So, at last, the results were in and Greg and I sat in the Doctor’s office and he said that it looked like she definitely had Multiple Sclerosis. (I love it when the talk about me in the third person when I’m really sitting there in the first person!) Greg wanted to know just what was in store for us and the doctor said it meant that I had TWO diseases. I could see the fire in Greg’s eyes, that was not what he had meant. When he asked for further clarification, it came down to whatever the doctor is treating me for, they may not be sure which disease is causing what problem. I told Greg on the way out that I thought it was a good time to stop at Coco’s for a hot fudge sundae!
DON’T MAKE ME LAUGH…I’LL GET STUCK
By the winter of 1993, I was able to maneuver my chair fairly well, thank God. Our church offers a wonderful women’s Bible study, and in my sip and puff chair, I was able to attend, along with my sister and my Mother. Barbara and Mother are always keeping me laughing and I make them laugh also. There are a few rules that I have to remember when I am out in my chair. It is a very complicated, high-tech, piece of machinery, with many electrical wires, computers, etc. on the back of the chair. It should not get wet, so if it’s raining, I wear a poncho that covers me as well as the back of the chair. On our church property, I knew which way I had to go to avoid any big puddles, and also, the shortest distance from the van to our meeting room. The difficulty came one day when we were running late. As we were just outside the door, with the rain pouring down on us, Barbara said something that struck me funny and I started laughing. Barbara and I were outside the door in the rain, laughing like two crazy people, and my Mother was inside the room saying, “Hurry up and get in here before you drown.” The poor woman at the door, who work as greeters, looked on helplessly and didn’t know what to do. I couldn’t even tell them to make Barbara stop making me laugh. I finally calmed down enough to get inside and then I tried to explain why I was sitting out in the rain for such a long time. Thankfully, the woman in the Bible study are very loving and caring, and they didn’t tell me that I looked like a drowned rat! Even when I did! When I finally reached my table, I closed my eyes and thanked God for helping me to get in out of the rain, and also for funny sisters!
SO YOU THINK YOU CAN GO ANYWHERE…HUH?
There have been some precarious days in my chair. A friend was picking me up to take me to church and afterwards we were going to a luncheon and fashion show. My chair had developed a glitch and it would only operate in high, fast gear. There are times I would need to switch down and slow gear, especially when in unfamiliar territory. My friend was concerned and asked if I was sure we should try to go to the luncheon and fashion show. Of course, I told her. Just don’t let any slow people get in front of me! That turned out to be a long, tiring day. I prayed a lot and laughed a lot with my friend and that got us through. People are so nice and offer to give me a push and it’s hard to explain that a big sip and puff chair just can’t be pushed. Anyway, the repairman showed up the next day, thank goodness. I much prefer my chair when it’s working properly.
It truly has been such a blessing to have my chair. I feel I can go almost anywhere when I’m in control of my wheels. There have been a few times when God had to give me his undivided attention. In May of 1994, I was at a Crossroad’s Women’s Retreat with my Mother and Sister. The speaker was fantastic and I was so happy that we were all able to escape for an entire day. Because the chair operates by my sipping and puffing into the straw in my mouth, which connects to a computer that tells the chair what to do, it is necessary for all the tubes and wires on the chair to be fully connected. My Sister was watching some people play tennis so I was just driving around in my chair taking in the fresh air. I was supposed to meet my Mother back at one of the buildings at a certain time, and as I headed through the doors I realized that I was no longer controlling the chair. Thank God my Mother was standing there in the lobby, watching, as I was headed, full speed, for the two wooden double doors on the other side. I yelled, HIT THE KILL SWITCH! (Now I feel that I should interrupt this story and explain that the KILL SWITCH is a small piece of red rubber attached to be back of my chair, that when bent, stops the chair from moving.) My Mother is in her seventies but managed to race across the lobby and reach the kill switch before my chair and I crashed into the doors. Of course she said, breathlessly, “What were you doing?” Obviously not stopping, I replied. When both our hearts started again, I asked Mother to go find Barbara and she was able to re-connect the tubes so I was back in business again.
Barbara could see that we were a little upset and she saw some grape juice under one of the tables in the conference room, so she gave us all a cool sip of juice while we sat and rested. It was much later that I realized that the grape juice that she found under the table was to be used for the communion service during the meeting. Oh Great, I thought, they’re not going to let me come back next year! First I almost damage the building and then my Sister steals the communion juice! However, no one discovered the missing juice that evening. (Sorry Barbara, your secret is out)!
July 1994 quickly approached and we were very blessed to be able to attend our third J.A.F. Family Retreat. It was a very special blessing because the Disabilities Minister, from our church, had informed me that a woman from our church would be attending the retreat with her family and that she had agreed to be my personal volunteer. That meant I could attend all of the sessions for adult women and someone would be with me, which at the time, was what I needed. The main duties entailed giving me sips of water, since the medication I was taking, made my mouth very dry.
Why it turned out to be such a blessing was, come to find out, she only lives five minutes away from me. Besides her helping me out so much, we became fast friends. She has always said, you are my friend first, who happens to be in a wheelchair. So many people tend to see the wheelchair first and not the person. I like her attitude! With the girls being older and the family volunteer being older also, they were so well cared for that I hardly saw them at all. Which made the girls extremely happy, I might add!
Seeing familiar faces and renewing friendships made this retreat more than worthwhile. One of the girls that attends with her two children, one of whom is in a wheelchair, said how the retreats were her vacations each year and how it was like spending time with her family. I agreed with her completely. We all have separate lives, but we shared a bond that is very special. It’s not just a group of people in wheelchairs with problems, it’s a group of Christians who share the same love of Christ with hopes and dreams, that happen to be sitting in wheelchairs.
The week, as always went much too quickly. The Thursday evening before the last day of the retreat is always a big show. This time it was even more spectacular as my youngest daughter had a solo line to say with Joni and she couldn’t have been more proud. (A year and half later, she still says that line)! The program was simulcast on a radio broadcast, too, so the girls were thrilled to be a part of the show. They had worked hard all week to prepare.
The week was a special blessing because it offered opportunities for the families to experience much needed individual activities, yet it also provided time for families to share special moments together. Many people had only attended one retreat and were looking forward, eagerly, to our forth. The local basketball team had just won their third NBA title in a row, so after their repeat performances they coined the term, “three peat.” We hoped to experience a “four peat.”