IT’S GOT TO GET BETTER! OR HOW COULD IT GET ANY WORSE?!
The last week in July of 1993, was the second J.A.F. family retreat. Thank God we were able to attend this one. The best part was that the air conditioner was working the whole time. There were several pluses during this retreat since God was definitely in control and I also felt that I had some control back with my new chair. I learned quickly that most people do not know how the chair works, or had ever seen one like it before. I was excited about one of its features, because if someone or something wasn’t exactly in my line of sight I could adjust the chair until I had a better view. The schedule, as always, was very busy for the children as well as the adults. There were lots of volunteers and they helped to make the week go so smoothly. This is a great time to be able to concentrate on the Lord and not on the usual basic necessities of life.
Starting out on Monday, just to reach the retreat, is always an adventure for us. But this particular time, my biggest problem was trying to get my hair washed and styled before we left. The only beauty shop I could find in town, that was open on Mondays, was a number I found in the yellow pages. I called ahead of time to find out if it was wheelchair accessible and she assured me that, although her shop was in the back of her home, that there would be no problem. It was called the House of Beauty, but afterwards I had a few names for it! Like, House of Horrors! House of Was! House of Big Furniture!…But definitely the House of No Return!
The beautician, and I use the term loosely, was very interesting and wheelchair accessible was not as easy as she had led us to believe. Thank God Greg is strong, because he had to move half of her household furniture just to get me into the area where she had the sinks. She had two operators chairs, but of course, the closest one didn’t work so I had to be lifted into the far chair. (I was thinking, we’re never going to get to the retreat because Greg’s back is going to give out right here in this lady’s washroom.) So, I started praying for strength for him and endurance for me. I kept giving him a look that, let’s just forget it and go back home. He kept saying, “Just relax, it will be fine!” As the woman washed my hair she told me how she mostly set hair on corpses before they were buried and how the families were always so happy because they looked so good when she was finished. Actually, I would have preferred a different recommendation than that of making dead people look good!
As we went into her styling shop, after moving more furniture, I explained that my regular hairdresser would blow dry my hair and style it with a curling iron. She told me that she didn’t even own a curling iron or a blow dryer, that she used rollers to set the hair and a hair dryer that, you sat under, to dry it. I thought…I’M OUT OF HERE!!! Greg kept giving me looks that said, “Calm down, it will be fine.” I kept thinking, I have an egg beater at home that he could have used and my hair would have looked just as good. Thankfully, I kept smiling and kept thinking that as soon as I got home I could re-wash this and fix whatever she’s doing to me. As soon as we were out of earshot, Lindsay looked at me and said, “You’re not going out like that are you?” I thought, Oh God, I’ll have to go to the retreat with a sack over my head! Greg merely said, “Don’t worry, we can fix it.” I think the worst part was that the beautician kept saying that anytime I needed my hair fixed that she’d love to have me come back. Somehow, in choosing a hairdresser, I prefer one that is recommended by people who are alive! Well, the Lord must have really wanted us to go to the retreat because we did get there and I was thankful that I didn’t have to look in a mirror unless I chose to…which I didn’t!
THE CHAIR IN ACTION
The retreat was very good because one of the helpers would come over first thing in the morning to do my make-up for me and the girls were taken care of by our family volunteer. Since I could move around by myself in my new chair, Greg was able to attend the men’s sessions on his own without worrying about me.
I learned something very quickly about using my chair. I can either drive, talk, drink water or eat, but I cannot do any two of those at the same time! The Pastor, for the week, was the man who had served as Senior Pastor at Crossroads, where we currently attend church, and it was wonderful to have the opportunity to get to know him and hear him speak. He and his wife both sang, as well as the Minister of Music, so it was good seeing, and hearing, the three of them together. They fit like a hand to a glove. The Pastor was always so encouraging and at one of the meals, Greg was giving me a hard time about moving the chair quickly out the door, so instead of going forward, I backed up! I think I almost impaled my husband against the wall. The Pastor laughed so hard, and he got me laughing so I couldn’t move anywhere. I swore to Greg that I didn’t do it on purpose, but I still don’t think he believes me. Maybe there was a little vengeance in my heart which shouldn’t have been there, and I think I would have felt sorrier if it hadn’t looked so funny. The Pastor was laughing but Greg thought he might end up singing soprano for the rest of his life! I discovered another rule. Don’t laugh or you can’t move the chair!
The week was over much too quickly again. I was definitely feeling weaker, but I was so encouraged by seeing friends and other fellow “chair people” that I felt like I could do most anything, with the Lord’s help. The only sad part was that Friday comes much too quickly and you have to go home and wait until next year. After getting back home and settled, although I didn’t make it back to work, I decided I would like to try putting some thoughts down in a book, for my kids. One of the first things I needed to put down was how this silly chair worked.
WHAT CHART?…WHAT FINGERS?
In the fall of 1993, the eyes went bonkers on me again. This time the vision in my right eye was so poor that when I opened both eyes the world became fuzzy. I went back to my Ophthalmologist, who is a very good, kind man, and his nurse gave me a preliminary vision test. She asked me to read (with my poor eye) the smallest line on the chart that I could read. I told her that it would help if I could just see the chart! She said, “You mean you can’t see the GIANT E?” No, I replied. I know the chart is there, but the letters seem to be missing. So she held up her hand with fingers extended and said, “How many fingers am I holding up?” I said, if I could see your hand I would tell you how many fingers! So she started walking closer to me and said, “Tell me when you can count my fingers.” I decided to stop her before she punched me in the nose with her extended hand so I finally said, two! Thankfully she stopped. Obviously, something was not right.
Then the Ophthalmologist came in and put the drops in my eyes and looked into my eyes with the bright light. (I’ve always wondered how they managed to put a huge piece of the sun into those tiny little lights.) According to the exam, my eyes appeared to be undamaged. This lead him to believe that there must have been some kind of pressure, from the brain, on the optic nerve. (Now my family was always giving me pressure but I didn’t think I could blame this particular pressure on them.) He suggested that I have another MRI to see what was going on inside my head.
The test was scheduled to be done on Labor Day 1994 which turned out to be a real blessing. The technician running the test was the senior person because of the holiday and he said that he had been doing these MRIs for six years. I said it was nice to have somebody who knows what they are doing since I had been doing them for ten years! He looked at me with a funny expression and said, “Wow, you must have had one of the very first MRIs available.” Yes, I replied, my first was in 1984 when the first machine was at the City of Hope. Thank God the test had shortened in time duration since way back then!
When the test results were in, Greg and I went to see what they had found. A neuroradiologist had looked at the pictures and immediately told my doctor that this woman had Multiple Sclerosis. My doctor told him about the history of the spinal cord tumor and the radiologist said, that can’t happen! Basically, he said it was so rare to have a tumor inside the spinal cord and it’s also so rare to have Multiple Sclerosis, that it would be one in a gazillion chance to have both. Well, I’ve always thought of myself as an over achiever…here we go again!
We were given three options. Number one, they could do an autopsy to see what was going on inside my head. “Oh no,” he said, “I shouldn’t have said that!” (It didn’t matter, I thought, I wasn’t going to choose that option anyway)! Number two, they could drill through my skull to try to locate one of the lesions and see if we could identify what it was. (This sounded as good to me as option one! Besides, they never knew what FRED was so why would they be able to identify this one?) Number three, they could start me on massive doses of steroids which sometimes help shrink tumors. (I immediately thought of famous people who had recently died from taking steroids, and, why would the doctors want to shrink something that they didn’t even know anything about in the first place!) Number four, they could just do nothing at all. Finally, an option I could live with! As we left the office I was thinking, you do nothing…I’ll pray about it. It was suggested, as we were leaving, that I should go back to Fontana and have a neuro-optical response test which would be more definitive in diagnosing M.S.