For the past several years, I have been keeping a journal to record my thoughts and relate my experiences. I usually make several entries every day, so this is just a sample.
September 29, 1997
A red-letter day! Our geese flew back in this morning honking and splashing. We went for a walk and saw a red spotted newt. There are two ducks on the front pond. They seem too big to be wild. One is white with red around the eye, the other black with white patches.
October 5, 9:30 pm
I'm losing touch with my extremities. Actually, I'm losing my fight against ALD. Do you think it was a gallent fight? Ah, well - fight or not, I'm just petered out. Farewell for now, trusty little journal. A bientot and all that.
October 9, 10:30 pm
I don't know what it making me feel so small but I hate it. I feel like a barnacle or something else of like size. Oh well, I'll leave it and take my tale of woe and be gone. Farewell, trusty little journal.
October 14, 9:50 pm
I feel like I'm slipping backward through time and I hope I am right. Because if I'm not slipping backwar through time I don't know if I will be around very much longer....
October 20, 12:20 pm
I feel like a squash feeling again. I wonder why? Perhaps it is because of my feeling very excited. Today is great, and it only gets better. I also need to open up or else I will go crazy. I haven't felt like this in a long time. It is good to know that I am still feeling this....
November 6, 3:50 pm
I think I know that it is rather hard to talk with somebody who is evidently in the throes of death. I was once close to death but I picked myself up and dried myself off and said to myself that I'm not ready yet. Not ever....
November 19, 7:45 am
Wealthy and wise, so everyone says, is the best of life. But I do not believe this. I believe that the most important things are health and love. All these things combined would be a great life. Farewell, so long, trusty little journal, and all that crap and jazz.
November 24, 1:30 pm
I miss hearing NPR (National Public Radio) at noon and I certainly miss "Reading Rainbow." I wish this would come on all of the time! I've lost my train of thought. I wonder why that is and why they call it a train. Farewell, trusty little journal and all that jazz. I will remain confused 'till the day that I die!
November 30, 11:00 am
I've learned about falling out of bed. I did not feel it. I hate it happening - no sensation. I might as well give up. I'm upset because I did not know that I fell out of bed. Farewell for now, trusty little journal. I wonder how much longer I will write in you.
December 4, 10:30 pm
I want to do something with kids and my disease. I'm not saying that ALD is peachy but I've kept alive to this point. A peach, a peach.... I think I'll sign off now. A bientot.
December 15, 12:50 pm (after hospitalization due to a high fever and seizures)
I must remember to thank the people that were with me. Thanks Crystal, Erica and Dr. Rheuland. I know this was hard on them. I go from hot to cold and I want to attempt to stop this....
December 20, 10:40 pm
Today has been a great day. How can I say that when I am confined to a wheelchair or lying down all day? First, I woke up bright and early and then I had an opportunity to decorate Jane's with Mother, Father and a lot of people. Then Daisy and Shannon came home with me. Farewell, I'm out of energy.
December 24, 9:35 pm
I feel like I'm taking the voyage of the Dawn Treader. Why do I say that? I'm glad you asked. I'm a walking dead person. I mean I'm asleep on my feet....
January 9, 1998, 10:15 pm
I know what it feels like to be a lone voice in the darkness. I like it and I hate it. I wonder if you know what brings that about. Simply put, I feel like the Lone Ranger with nobody. Who can afford me? Farewell.
January 16, 10:00 pm
What I want to say may be hard to make myself known. I will try. Umar and Nellie live on the opposite side of the sea, but I notice how alike they are to me. Umar especially, in his childhood....
January 30, 7:00 am
Awake! I think I need to leave it at that. Whay do I say that? I actually think I'm awake forever now (like the poeple from "Awakening")....
February 3, 11:30 am
I want to make one thing known: the fact that I am a miracle. Pure and simple, because of the staying power and full determination. Farewell, trusty little journal and all that happy crap and jazz (laughing).