Thursday, June 25, 2015

Stand up, sit down

It pays to know people in the right places, in this instance Hannah from Dana-Farber resources, who made one call to correct my transportation problem and arranged for me to leave The Ride headquarters in Charlestown at 2 instead of 2:50 p.m. to get to my 3 p.m. appointment at the Kraft Donor Center, where I am now waiting for my machine to prime because the person I told that I was coming in didn't pass the info back to the nurses.

I don't mind waiting because I am gleefully watching CNN's coverage of the Supreme Court decision upholding the Affordable Care Act.

My interview at the eligibility center was strange. People in wheelchairs and with canes and crutches were in the waiting room to confirm the disability qualifying them to use the paratransit program. One woman was so overweight that it looked like she could barely move. I felt so bad for these people and thought about how at one point some of them were flawless little babies.

An episode of 'The Golden Girls" played on the TV. One of them had a bubble in her chest. The others feared that she might die. But they said something funny, and laughter ensued.

And then there was me.

My interviewer, a nice man, came out and walked me to an office in the back. He asked when was the last time I used public transportation, if I ever felt dizzy or faint, did I ever fall and how was my balance and memory.

I gave him my medication list and Dr. Alyea's number. I explained as much of the whole megillah as I I had a bone marrow transplant six years ago and how I have GVHD of the skin and how after three hours of ECP and with bags to lug I can't take the T to Diane's or Margaret's and I how I can't drive because I don't have my car. And how at 6 a.m. or earlier the next day it would be difficult to do the reverse. And how if The Ride fails to reauthorize me the house of cards will collapse.

He asked me to stand up and sit down without using my hands, close my eyes for 10 seconds and report if I felt dizzy, and take a little walk in the parking lot and tell him if I needed to rest. Then he got me cup of water. He said not to worry if it was too easy; he seemed to realize it is a circumstantial disability. I will get a letter in the next week confirming or denying my need to use The Ride.

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