Living Well with a Bad Diagnosis - Lung Disease

Saturday, August 8, 2015

Goal: Getting Through Today

Just weird. I awoke several times last night. It was too quiet. Too still. It is a rare event that Michael and I are separated and this weekend, that is the case. Yesterday was fine as I was busy with mom and last evening my friend Christien and I spoke on the phone for well over an hour. That helped. Today is the challenge.

When we bought our first house in 1975, Mark lived around the corner. Barely out of high school, he was one of the smartest people I have ever known. He had a tough family life so he spent a lot of time with us. Friday nights, we would haul him out to dinner and he was always at our house when we would get home from work. I think he felt safe and loved with us. Well after William was born, he began to get jobs and then got busy with life. We always worried that he would waste his brains on the dark side of life. After the suicide of a mutual friend, he suddenly disappeared.

For decades, I tried to find him. About two years ago, he popped up on my Facebook messages. He clearly had been through a lot but was living an honest life. He found a woman whom he adored and who simply loved him. He owned his business and was making a good living in a small town about five hours north of us. He was having problems with his eyes. Retinitous Pigmentosa. I encouraged him to go to my university hospital but he was not happy to learn from them that he was going blind. There was nothing they could do about it. He had lots of anger.

Then he disappeared again. I tried to connect through Facebook and his email. Nothing.

This week, I got an email from him. He was now blind but he was upbeat and positive. He was still in business but had taken on a partner to do what he could do no longer. At my university hospital, he found one of the top eye doctors in the country who still encourages him with lots of evidence of trials: computer chips in the eyes, implants in the brains. He wrote that he was blind but did not expect to die blind. He had an entire computer set up and his environment had been adjusted for his blindness. Acceptance.

He had his act together.

His emails are fun to read as he is an excellent writer. I was so touched when I got the email below after I told him Michael was leaving me for the weekend. It is nice to reconnect with this dear friend.

"I remember the first time Mike went away for a night. You were still on Filbert St. I believe he was delivering a car to a family member in SOCAL. You were putting on a brave face but I could tell it bothered you more than a bit. Apparently that made an impression on me because I remember it 35 years later. You relationship made an impression on me, I fully expected to hear that you two were still together and would have been floored to hear different. It was very obvious to me that it was the right relationship for both of you, you weren't just in love but very deeply in like as well. That's the way I feel about Mary. I love her very deeply but it has been the like that has held us together, especially with my vision. I was ready to leave her because I loved her and didn't want her to lose her dreams but the thought of losing the best friend I've ever had prevented me from doing so."

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