Saturday, June 10, 2017

Yet another random list of random thoughts


Honeysuckle is the best smell in the whole world. Well, honeysuckle is the best natural smell in the whole world. Johnson's caramel corn on the Ocean City, NJ boardwalk is the best man-made smell.

The smell of honeysuckle brings me back to twelve year old me, walking around Roosevelt in bare feet. The asphalt would burn my feet and I would run from shadow to shadow in order to get some relief.

I went back to Roosevelt today for the 80th anniversary of the school and saw some more people who  knew me when. It's emotional to go back to where you came from. It was a beautiful event but I was more tired than expected so we didn't stay as long as I wanted or see everyone I wanted to.

I'm more tired than I was even just a week ago.

I'm physically leaning more to the right. I've noticed it in my wheelchair and more so in bed where my head is falling to the right. Time to find a propping pillow.

I overheard/semi-participated in a conversation today that went like this:
Woman 1: How are you?
Woman 2: I've just been diagnosed with (blah,blah,blah)
Woman 1: I'm so sorry.
Woman 2: At first they thought it was Lou Gehrig's disease. Thank G-d it's not that. That would be really awful.
(This woman did not know me or my diagnosis so she meant no harm but in order to make myself not break into hysterics, I told her to fuck off - in my head of course! That was for you Tina.)

My Dad took me to Sharon School this week and I saw the first graders perform in their Spring show. We went to visit old students and teacher friends. I got hugs and kisses and pictures and questions. It was so much fun. My heart is still full.

Our home is in construction mode. Two-thirds of our garage is slowly becoming an accessible bathroom.

Our home is in construction mode. Two-thirds of the stuff from our garage is spread throughout our house and yard. Patience. Patience. Patience.

I've been seeing more chipmunks lately. They are very cute.

I was in a wheelchair in my dream the other night. I believe that was the first dream I had where I was in a wheelchair. Does that mean it is finally becoming my normal? Was that a dream or a nightmare?

A woman from my online support group recently challenged others to come up with ten reasons it is good to have ALS. No, I do not accept that challenge.

There was a common theme among others who did accept the challenge that ALS opened their hearts, minds, and souls to appreciate all the moments in their lives - big and small.

I agree.


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