Ups and downs

The title of today’s blog describes my week – I have had some really good days and feeling my progress mixed with a few down days. Today for example, I am tired and feel like just lazing around and napping. I know this is normal, and am trying to give myself permission to just listen to my body, but I still am harder on myself than I want to/should be.

We are back in New York this week, which I love (we went to a dance performance and to the Met to see an amazing exhibit called Manis X Machina showing fashion made by hand, by machine and by a mix of the 2), yet it is indeed an assault on my senses with so many people, so much noise and so many smells and with temperatures into the 90s F/30s C most days does not help!

Not sure if this is related to my brain, my medication or just getting older, but I notice that I am forgetting simple things like words and names that in the past I would not be forgetting.

Back a bit more regularly to the gym, but still doing short and light workouts: 20-30 minutes and half or less of the weight I was doing before this all started. This is not a complaint – I am happy to be back even if just for shorter and lighter workouts.

I had a wonderful lunch on Monday with Peace Corps friends: Susan Locke, Lyn McClean, Ed Sullivan, MalcolmVerselwith Antonio joining us. While it was in part to just see good friends, it wound up also being to celebrate my and Ed’s birthdays.

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Susan gave me an amazing photo that she did that took that looks like a Hopper painting.

photo 2

Ed is in the process of doing a watercolor of the Fire Island house. He has the sketch nearly done and will soon start to add the paint.

photo 3

Lyn gave me a hat from Disney – much appreciated given I must wear a hat all of the time this year for scar protection.

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As much as I loved being with everyone, I must admit when it was over, I was very ready for a nap.

Yet another candle for my healing – this one again from Kathy and Howie in a church in Stockholm. “My” candle is the tall one – 5th from the right under the stained glass window. I love all of the light coming my way.

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I got a very insightful article from Michelle called How Not to Say the Wrong Thing in Death, Illness, Divorce, and Other Crises Rings very true for me. Not sure this fits into the theory of the article, but I’d add not to overdo the “you look great” stuff on the person in the center. That may seem supportive but sometimes – if it doesn’t match how the person feels – can be a “burden” (pressure to be further ahead than you really are!)

Finally, this from a good friend who has had his own health issues: “As someone who has suffered through my diagnosis mostly in deep silence, I envy your openness with what is happening to you. But you are right, you should manage the way in which your disease is communicated. From you, to you and around you. At the same time, your disease doesn’t define Alan Silverman. You live with it. But Alan is the vibrant (finally slowly a little), intellectual (that ain’t slowing) and warm human being that a few of us know well, many have had contact with, and the rest of the bitches just dream they had. As Mama Ru has said, “If you can’t love yourself, how the hell you gonna love someone else?” As (I) said “one more round.”

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6 thoughts on “Ups and downs

  1. Alan, I've been reading your blog and watching your progress. Such a great way to keep friends updated and good for you to put your thoughts in writing. My thoughts and prayers are with you.

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  2. I love be taking nag naps. I always feel rejuvenated when I wake up. Love you to the moon and back

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