YOU DO NOTHING… I’LL PRAY!
I went back into the hospital after Christmas in January of 1990, and saw an oncologist, who said that the only way to treat the problem inside of my brain was to give me radiation. But after checking my records he found that I already had maxed out on my allotment of radiation therapy. Then he told me that there was a chemotherapy available that MIGHT work, but, by that time I’d had enough chemotherapy that to affect the trouble in the brain stem, it would be toxic. This was an option!? I think not! My only other choice was to do nothing. So medically I decided to do NOTHING, but inwardly I decided I could pray about it. That formula has proven more beneficial to me than any chemotherapy, radiation or aspirin ever was. Prayer can heal where modern medicine fails almost every time. I ended up on permanent disability because of this, which was an easier pill to swallow than to keep on struggling to try to get back to work. Besides, I had my adorable baby and little girl at home to occupy my time and thoughts. It’s hard to frown and be negative when I could hear children laughing and see their smiling faces.
NO!! I AM NOT A PIRATE!!
One of the worst problems that started to develop was with my eyes. If I would look at something with both eyes, I would see a double image. but if I closed one eye I could focus and see only one thing. So, I would keep one eye closed most of the time. When I talked to my neurologist about this, he suggested I wear an eye patch every day. For example, Monday was left eye patch day, Tuesday was right eye patch day, Wednesday was left eye patch day and so on. That worked pretty well except when I would hold Brittany I wouldn’t wear the patch at all, because I didn’t want to scare her. Actually I think the only person that was scared was me… when I looked into a mirror!
I remember I prayed so hard about that because I wanted to look at my new baby with both eyes and only see one baby! Of course, I thought she was so beautiful that I really didn’t mind having twins half the time! Again, I tried to put what was happening with me in the background and concentrate on playing with Brittany and the supervision of the first of many LIVE-IN housekeepers. (The housekeepers are another story altogether. In fact I have a catchy little title already made up for that book! It will be entitled, THE HOUSEKEEPERS FROM HELL!)
I spent most of my days in my hospital bed so, on the triangle exercise bar that hung above my head, I would hang baby toys that would entertain Brittany while I held her. I concentrated on alternating the eye patch each day and was bound and determined to go to church with the family, and to see straight, by Easter Sunday. Thank God, the double vision started to get better, and I did get to go to church on Easter Sunday, with no pirate patch on! This was the spring of 1990. It was right after that I was able to graduate to an electric wheelchair with hand controls. I remember I was in my electric chair (no pun intended!) during the Christmas season. I could move up and down the aisles, shopping faster than lightning. I only ran into trouble a few times when the aisles in the stores would be too crowded for me to fit through and I would get stuck and knock down display items. I could just imagine that the store clerks would cringe when they saw me coming in the door. Like… well, there goes the nice display I just set up!
OUR FIRST J.A.F. RETREAT OR THIS WAS REALLY A HOT BLESSING!
As we arrived, the camp volunteers met the van and started unloading everything. Wow, I thought, how nice is this! We checked into the hotel and went up to our rooms. I remember it was so nice to feel so welcome and to be greeted by so many smiling faces. There was only one minor set back. The air-conditioning in the hotel was out. They had put a fan in every room but unfortunately southern California in July is much hotter than any fan can handle. At this point I probably need to explain something about my condition. I do not function well in heat. Several years after Lindsay was born, I had decided to get into a jacuzzi with my friends and stayed, chatting away, forgetting how long I had been cooking. Well, I could barely get out of the water! When I explained the problem to my neurologist, he said, “you shouldn’t be anywhere near a jacuzzi.” He went on to explain that this was a very typical side effect of my condition. That my body will completely shut down if I get too hot.
Luckily the main dining room was air conditioned and it was almost dinner time. The hotel was hoping that the problem would be fixed very soon. After dinner, the families were scheduled to hear a speaker in another building, where the air conditioner was actually working. I think at that point I would have listened to just about anybody as long as they were in an air conditioned room! Another positive was that the program planned for the children, for the entire retreat, was absolutely wonderful! Their days were full of singing, crafts, skits and activities that kept the abled, as well as the disabled, kids happy. The girls couldn’t have cared less about the air conditioning problem. I wouldn’t have been able to pry them loose from their new friends and plans for the week if I had wanted to. One of the highlights of the retreat was, the evening before we left for home, the children were able to perform on stage with Joni.
The pastor who spoke, that first evening, the J.A.F. coordinator and the music minister were all so wonderful that I completely forgot about our hot rooms, until we had to go back and try to sleep in them. That was a very long, hot night. Greg was very concerned for me and said that we were going to have to go home. I agreed that I couldn’t take another night in the hot box. However, in the morning, once we were downstairs and met with some of the uplifting people and saw the agenda of what was planned for the day, we didn’t want to go home. Besides, they practically guaranteed that the air conditioning would be back on that evening! It was cooler downstairs than it was up in our rooms so I started perking up a bit. I could manage my hand-controlled, electric chair, unless it got too hot and then my arms would not work well enough to manipulate the controls.
The music director was so uplifting and the teaching sessions were so inspiring we didn’t want to miss out on a minute of the activities. For a change, nobody looked at me differently because I was in a wheelchair. We made such good friends and were learning so much valuable information, that the week passed by much too quickly. I was fortunate enough to talk with Joni herself, and I felt like I had made a new friend. She was so willing to share information about corsets and catheters and how she managed to be on the go all the time in spite of her disabled condition, that I couldn’t wait to get back home and ask my doctors to try some of the suggestions I had learned about.
I remember during the last session of the retreat, the coordinator had a microphone and went around to all the different families so they could share their thoughts about the week. I finally raised my hand to share before my voice broke and I started crying and couldn’t talk anymore. I said, “I was so thankful I had attended and that I didn’t feel disabled anymore. That the things we had learned and the people we had met had taken the DIS out of DISABLED. Thankfully Greg took the mic and tried to finish for me, but be broke down also. I can count on one hand the number of times I have seen this man with tears in his eyes. What a blessing and a joy to have been able to share that week together, that leant such a positive focus to our lives.
Most of the volunteers and one of the staff coordinators live close to my home and one of the most beneficial aspects of that was first retreat was the connection we were able to make with Crossroads Christian Church in Corona. The music director at the church was also the director at the church. I had not spent five straight days in the wheelchair before so the first weekend back home I spent in the hospital bed, resting up. The following Sunday that we were able to be in church, we felt like we had finally come home. The church had magnificent classes for both of our children and we were greeted by many friends from the retreat and introduced to so many nice people who were welcoming and friendly. The piece de resistance was the music director. He was as exciting on Sunday mornings, or more so, than he had been at the retreat. It was quite different from any church we had ever attended in a very positive way.
After the retreat I made an appointment with my physical medicine doctor and related all the good information that I had learned. He concurred that physical medicine can be 20% medical and 80% informational and he began to help me put some of that information to work. At first he had me try a binder which I wore under my clothes, but the weather was very hot at the time, and I remember taking it off and it would be soaking wet. Besides, it did not work as well as the corset, which had metal stays in the back for support. It took several months before I actually had the corset to wear but what a relief.