Journal Memories
March 2001
This is to keep track of so many memorable moments during this period of ensuing blindness. They are so much like life itself; full of miraculous moments, sometimes faltering hope, fear, sorrow, despair and sometimes, a few moments of sheer terror…but always the Comforter is there…the Holy Ghost. I believe He is given not just as a witness that Christ lives, but as a special Comforter to help me walk the path that has been chosen for me, and for many others who walk in darkness at times, not knowing what the next day or the next test will bring. I know my friend, Sharon Fuhr, walks this same path and has the same comforting presence with her…it is almost like being insulated from the rest of the world. It is a kind of cushion against the daily grind that would normally bother me but doesn’t anymore. It is a calm acceptance of whatever is next. It is there when a new test is needed and uncertainty and fear is right around the corner. It is a cushion I wish could be given to my family; especially to Tom who suffers so through this process.
I have thought many times in the past 5 months that I should be keeping track of these amazing events because they are amazing and because I want always to remember them. I want them for my family who may gain strength from the struggles and trials I am experiencing and may not understand why we must struggle. I am not angry with the Lord; I am not bitter and I have never asked why it should be me that goes through this. It has always been true in my life that we must struggle to purify ourselves before Christ; to have “clean hands and pure hearts” for His Second Coming and to be able to be worthy to be in His presence someday and be among so many noble and great souls who have suffered more than I could image for the privilege. So, it doesn’t really surprise me that I am called upon to go through things; if not this, what? It could be anything and I can think of many things far worse than what I have been experiencing the past 5 months. So, I want it to be understood that I am not confused and angry by this turn of events; I only view it as a part of life that is my particular, tailor-made trial; it will purify me, make me better, more humble, more focused on what is most important in life and I can only learn from it, regardless of where it is going and where it ends up. My greatest struggle is with an occasional gripping fear that one day, before I have a chance to do everything I want to do with my eyes, my sight will be gone in some kind of sudden flash. Every now and then, that possibility hits me and I feel a panicky, dark kind of fear and I have to fight very hard to dispel it. But the Holy Ghost is always there and I can pray and ask to have the feeling lifted, and it is…but it is very scary.
So, I want to start to relate some of my experiences and instead of trying to be orderly and do them chronologically, I will just write about them when I have time and add to this. All along, I have been receiving wonderful, insightful and comforting blessings which I now wish I had recorded. Because I didn’t, I have to rely on my faulty, 57 year old memory…but some things really stand out so I should do OK.
The night we went to see my new ophthalmologist, Dr. Matt Parsons, who is in our ward (which is no coincidence), Tom gave me a blessing. He blessed me that although this would be debilitating, I would learn to compensate and one day there would be a cure. He also told me that I would not get cancer, another promised that seemed strange as there was no mention of cancer initially. He said that my friends and family would see my strength and courage and great faith and it would help them in ways I might never know about; that this illness would bring family members back into the family and would reconcile some who had been away. It was a strange blessing to me at the time because I didn’t know what debilitation he was talking about, much less how it would affect my life. I asked him after the blessing “a cure for what” and he didn’t know. It scared me a little because this didn’t sound like something simple and quick to solve. Both of us had thought that all the flashing lights I was seeing over the past two weeks were either something to do with a possible migraine headache condition or maybe a torn retina. It didn’t seem like anything long and involved, but that was the impression I got from the blessing.
Well, it has been long and very involved and there is no cure right now for what I have. But the words of that first blessing are certainly coming to pass. The best part of this for me has been what has happened with our son, Ben, who has been estranged from us for at least 5 years. Ben is my stepson, although I hate that phrase. When Tom and I married, Ben was set in his ways; he was very independent and deeply resented my intrusion into the family. He didn’t accept me and we struggled terribly. I resented him and his non-acceptance of me. I worked to try to talk to him, but he was closed and looking back, I can understand why. Anyway, I don’t think that Ben ever hugged me in the entire time Tom and I were married. He had moved to Salt Lake and told Maggie that he might want to talk to Tom one day but not me. It was heartbreaking, especially for Tom.
After we began testing for the blindness, Tom told his Mom what was going on (she is in Alpine Nursing Home not far from our house). At the time, we thought there was a chance that I had MS (Multiple Sclerosis). Ben was visiting his Grandma often and she told him about it. The next day, I was home feeling awful because I had just started on massive doses of steroids by IV therapy. Ben came down from Salt Lake and posed as a delivery man and brought two dozen long-stemmed white roses with a little card saying how sorry he was to hear that I was sick and he hoped I would get better. When Judi from the office described the deliverer, I knew it was Ben. I got his cell phone # and left a message on it, thanking him for his thoughtfulness and asking him to please call me. He did…I was absolutely amazed at his reaction. He said that when he heard the news, he just couldn’t believe it; that I was the most alive person he knew and the thought of me in a wheelchair was more than he could stand. I asked him if he would please come and see us and he said he would…that night. And he did. When he knocked on the door, I opened it…he came in and for the first time in my life, he hugged me…really hugged me. It was such a precious moment; I can still remember it and how I felt. He said he was sorry to hear of my illness. He sat and talked to us for several hours about what was going on and what he had been doing since we last saw him.
Since that time, about four and a half months ago, we have seen a great deal of Ben. We have basically let him decide how he wanted to be with us. He has stayed very close; we have had some wonderful visits, just the two of us…moments I would never have thought were possible. I have learned to love Ben all over again, as a man who has been through his own tough experiences that have refined him somewhat. I enjoy being with him; I love his personality, his wit, his humor, his tenacity, his ability to keep focused on his goals and to survive. He has compassion and softness I never knew he had and I love being able to experience this with him. He is very tender with me and I feel like he enjoys me as much as I enjoy him. He was here the other night, but I couldn’t spend time with him because I was on the phone with my friend, Sharon, whom I mentioned earlier. Sharon has pancreatic cancer and has a year to live. As Ben got ready to leave, I wanted to say goodbye so I set the phone down and went over to give him a hug. I whispered in his ear “I love you Ben” and he said “I love you too”. Now those are words I never thought I would hear from him…so if nothing else positive ever comes out of this experience (and it already has), I would consider this well worth going through just to have Ben back.
Since I am on the subject of Ben and before it slips my mind, I want to relate a great experience with him a few weeks ago. He called me to tell me about going to San Diego to buy a car and drive it back to Salt Lake. He usually buys and sells Toyota MR2’s, used…he fixes them up and sells them at a good profit. He works on the Internet and has a following he has developed over the past few years. But this time he was buying a Mazda Miata…when he told me that, I said “ah, my dream car”. He didn’t know that, so we talked about what a cute little car it was and how fun to drive. He said he’d take me for a ride in it when he got back. Then he said, “wait a minute, why don’t you just go with me to San Diego?” He wasn’t kidding. Then he said he would buy me an airline ticket and I could go with him. He said it would be good for me to get away for a few days; that he would take me to the beach I loved best (La Jolla shores) and we could walk on the beach; he said that if I was tired, he would do all the talking. What a incredibly sweet, thoughtful thing to do…and he meant it. He said he would give me a day or so to think it over and call me back; and that if I decided to go, he would go right out and get my ticket. I was absolutely incredulous!! This is a relationship with Ben that I never dreamed could happen. I talked to Tom; part of me really wanted to go, but I was on call to see a new doctor at the University of Utah…a rheumatologist who would handle my chemotherapy and he was trying to squeeze me in. It could happen anytime and I had to be available. Not only that, but I was feeling pretty scared and vulnerable at that point and I wanted to be close to home; to Tommy and the kids. So when Ben called back, and he did call back, I told him how I was feeling and he understood. So, as it turned out, I had my meeting with the doctor while Ben was gone. When Ben got back, he called us and said he wanted to come down and take me for a ride in the Miata. It was a beautiful day; the sun was out and it was relatively warm. Ben and I went all over Provo; up and down steep hills and around tight little turns. He was careful with me, but I told him I was a frustrated race car driver and he could take the turns a little tighter. He put the top down and we had a wonderful time, talking and laughing. He told me that he went to La Jolla Shores and walked along the beach and thought of me; he described the day and what it was like so I could feel like I was there. It was such a tender experience that just relating it makes me cry. I am so happy to have Ben back in our lives. It is a miracle that he is back and a literal fulfillment of Tom’s blessing.
Tommy’s Poem: A few months ago, Tommy wrote me a poem, which I will attach to this journal rather than type it over. It is a tender, sweet and very insightful poem about how he is always there for me. I keep it in the little notebook he wrote it in, on the stand next to the bed and sometimes I just read it through for comfort. Many times, he sits by the side of the bed and reads the poem to me. Friday night (today is Monday), he sat in the green, high backed chair and read poetry to me. He is the dearest man in all the world; sometimes I watch his ever-graying head and I see the silent worry in his eyes and his shoulders kind of slump over and my heart just breaks. I wish it could be me on the other end so I could comfort and care for him, but then it would break my heart to have him lose his sight. Reading is everything to him, as it is to me. It’s strange that we could take this miracle so much for granted and how illusively precious it is now. Sometimes when I think about all the stupid stuff I have spent my time doing, I just feel this stab of agony that I wish I could do it all over again and I wouldn’t waste so much precious time. Maybe we don’t really appreciate things or learn any other way, though.
