My experience of being terminally ill has made some things seem less important to me, while other things have retained their importance.
Some things that seem less important now:
1. Money/finances. On April 15 (Tax Day) of last year I put $5000 in my retirement account (IRA). That was the last financial decision I've made. In May I was diagnosed and since then I really don't care about money/finances. I'm not claiming that money doesn't matter - it does. Being poor - really not having enough for your needs - is stressful and can make you unhappy. But being rich, research shows, does not make you happy. If I had millions of dollars now, I don't think I'd be any happier. If given a choice between health and wealth, I recommend health. As they say, you can't take money with you.
2. Politics/foreign affairs/most things in the news. I feel a little guilty about this, because I think many of these things are important, but when I read or hear about the latest squabble in the Senate or calamity overseas they seem very abstract. Perhaps that's because I feel rather powerless to change anything outside my immediate surroundings.
Some things that still seem important:
1. Love. Many people have argued that the meaning of life lies in love, and I agree. Loving others, and being loved, is the deepest and most meaningful experience available to us. When all else is stripped away, that remains.
2. Sports. I'm not claiming that sports matters in any deep sense. I just mean that sports has been a consolation to me. Playing sports, particularly basketball for me, makes exercise fun, and exercise is good for you mentally and physically. Watching and talking about sports is entertaining and can be a bonding experience, particularly for guys.
Speaking of sports, the first practice for Seth's YMCA basketball team is tomorrow morning. I am co-coaching his team, as I have for the past few years, with my friend Michael Parke, whose son Will is also on the team. The season runs until February 26 and gives me another thing to look forward to.
Ethan
Friday, January 14, 2011
The Seven Basic Elements
Seth was very positive about school today - the most positive he has ever been about any school he has attended. Lynn and I have dreamed about a day when Seth would actually like going to school. Perhaps it has finally arrived! (Knock on wood, no jinx.)
Jane and Al arrived this afternoon and we all took a walk. This past Wednesday they finished renovating and reopened the section of boardwalk at Boulevard Park, so now I can do my favorite loop walk again from the house to the Taylor Street boardwalk to Boulevard Park and back.
On the walk back Seth saw a screw on the ground and announced to me that he thought screws were one of the seven basic elements of life. I asked him what the others were and, after thinking about it, he came up with this list:
1. Screws
2. Dessert
3. Money
4. ATVs/dune buggies
5. Electric boxes/transformers
6. Plastic
7. Sewage
Jane and Al arrived this afternoon and we all took a walk. This past Wednesday they finished renovating and reopened the section of boardwalk at Boulevard Park, so now I can do my favorite loop walk again from the house to the Taylor Street boardwalk to Boulevard Park and back.
On the walk back Seth saw a screw on the ground and announced to me that he thought screws were one of the seven basic elements of life. I asked him what the others were and, after thinking about it, he came up with this list:
1. Screws
2. Dessert
3. Money
4. ATVs/dune buggies
5. Electric boxes/transformers
6. Plastic
7. Sewage
Some good things
Seth is starting at his new school, Montessori at Samish Woods, and he seems to like it so far (knock on wood). We are easing him in gradually with the goal of him attending full-time by the end of the month, if not before. The people at Samish Woods, particularly his teacher Jessica Tupper, have been really accommodating, supportive, and generally wonderful to Seth, Lynn, and me.
Our family friends Jane and Al are arriving this afternoon and departing Monday morning. I am looking forward to seeing them.
My mom is going back to Maine January 20-30. Although Grace and I will have to relearn how to feed ourselves, I'm glad my mom will get a break and get to see my dad and her friends in Maine.
Grace and I are planning to go to Hawaii February 4-11 - just the two of us! Grace's birthday is February 5. We are flying to Maui and staying at the Ka'anapali Beach Hotel. Grace made all the arrangements. I hope hope hope my health will cooperate.
Ethan
Our family friends Jane and Al are arriving this afternoon and departing Monday morning. I am looking forward to seeing them.
My mom is going back to Maine January 20-30. Although Grace and I will have to relearn how to feed ourselves, I'm glad my mom will get a break and get to see my dad and her friends in Maine.
Grace and I are planning to go to Hawaii February 4-11 - just the two of us! Grace's birthday is February 5. We are flying to Maui and staying at the Ka'anapali Beach Hotel. Grace made all the arrangements. I hope hope hope my health will cooperate.
Ethan
I'm fine
Grace was asked by a couple of people today whether it was true that I had been admitted to the hospital this week. Fortunately there is no truth to this rumor. I am not in the hospital. I am at home researching clinical trials.
Ethan
Ethan
Tuesday, January 11, 2011
A true story
I woke up in the middle of the night at Jonathan and Sarah's house. I had to get to the bathroom quickly. It's embarrassing to mention, but the chemo drugs and painkillers give me an unpleasant mix of painful constipation and alarming diarrhea. My nose was plugged with dried blood (the chemo drug Avastin causes bleeding, especially in the nose). I blew my nose to clear it, but then the blood starting running down my face, splattering in the sink, and running down my throat until I spit it back up. A wave of bone pain hit me, and I doubled over, rocking back and forth and waiting for it to pass. Finally I crept back to the bedroom.
I slipped into the bed that I was sharing with Seth. In his sleep he moved closer and cuddled against me. I put my arms around him. I smelled his hair. I felt peaceful and happy. I vowed to remember this time, this moment, this feeling. I will carry it with me.
I could feel his muscles twitching as he dreamed. Once he whimpered in his sleep. Later he laughed. I think there is no sound so pure, so innocent, so beautiful as a child laughing in his sleep. Especially your child, who you love with all your heart. Who you would gladly give your life to protect.
As I held his small warm body against mine, I could imagine how his body will grow. His shoulders will broaden, his legs will lengthen, his cheeks will roughen. He will be beautiful.
He breathes heavily, easily, face upturned, lips parted. He is part of me and yet alien. I can touch him but he drifts in his own dreamworld.
Ethan
I slipped into the bed that I was sharing with Seth. In his sleep he moved closer and cuddled against me. I put my arms around him. I smelled his hair. I felt peaceful and happy. I vowed to remember this time, this moment, this feeling. I will carry it with me.
I could feel his muscles twitching as he dreamed. Once he whimpered in his sleep. Later he laughed. I think there is no sound so pure, so innocent, so beautiful as a child laughing in his sleep. Especially your child, who you love with all your heart. Who you would gladly give your life to protect.
As I held his small warm body against mine, I could imagine how his body will grow. His shoulders will broaden, his legs will lengthen, his cheeks will roughen. He will be beautiful.
He breathes heavily, easily, face upturned, lips parted. He is part of me and yet alien. I can touch him but he drifts in his own dreamworld.
Ethan
Sorry!
I have fallen way behind on my correspondence. I have received many wonderful cards and emails, and I have not had the time and energy to respond to many of them yet. Please forgive me! I do appreciate every message and I am trying to catch up.
Ethan
Ethan
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