Eleven
years ago, on August 7th 2002, after a day of outreach with the Baby
Steps team at Marcus Garvey Park in Harlem in honor of Breastfeeding Awareness
Month, I called my significant other.
An unfamiliar voice answered his cell: “Ray went code blue. Who is his doctor? Do you know if he
takes any medicine?” Code blue,
code blue, my mind played the words back to me over and over as if they didn’t
register the first time until I caught my breath and finally uttered, “Oh my God,
it’s Dr. Patel on 125 St. He takes
Coumadin...”
Eleven
years later, I am in an ambulette on the same highway leading to New Rochelle
that I traveled alone on that day which would change my life forever. The day my faith was tested beyond
measure, the day I was given strength I never knew I had. Only this time I am not alone. We are riding together, me & Ray, strapped in an ambulate, and the equipment in the back is bouncing up and down
making a huge racket. By far,
taking these scary rides (which I don’t have to do) is probably the greatest
sacrifice I make for Ray. All the
other stuff I do as his primary caretaker, I don’t mind. It’s funny too because throughout the
years people have always told me “Ray is so blessed to have you.” No,
no, you don’t get it, you have it all wrong, I am the one who is blessed! I am the lucky one!
Ray
suffered traumatic brain injury secondary to cardiac arrest, which occurred
while he was working out at a gym.
He lost his memory, his childhood, his adulthood and many of his inhibitions. Ray lost his career and many “friends.”
He lost a lot of material things and eventually after a series of TIAs
the strength of his legs, leading him to be dependent on a wheelchair.
Two
days before our annual cardiac appointment in New Rochelle with Dr G, the
doctor that was a huge part of saving his life, I participated in Ray’s annual
care plan meeting at the nursing home (TBI floor) where he lives. One of Ray’s challenges every day is
speaking; let’s just say that it takes him some time to “warm up.” In fact, I never call Ray before 12pm
unless it is simply to tell him to get ready or that I will be there soon. But for some reason the nursing home didn’t
consider this. They set the
meeting for 10:30am.
Good
thing Ray & I spoke about the meeting the day before during a trip to the
South Street Seaport in lower Manhattan.
The only thing we had on the agenda to discuss was his menu. More diversity needed. Perhaps some veggie burgers or eggplant
parm to supplement the daily tofu, rice, veggies and salad.
Ray
had JUST started physical therapy two weeks prior to this meeting. Dealing mentally with his brain injury
took many years. No matter how
graceful, happy & good-natured Ray is, he hasn’t been ready to deal with
his physical limitations until now, more than 10 years after he first started
using a wheel chair. Getting him
to agree THIS TIME was easy because he was ready. Getting the nursing home to remind him to come down every
day was another story. Good thing I’m back from school. Good thing I’m done with STEP 1 now
because I have to stay on top of them.
Finally
it is the PT’s turn to report. “Ray has been in PT for almost a month now and will be
discharged next week. He is not
making any progress.” Just like
that. No consideration of Ray’s
efforts. No consideration of his
feelings. Nothing strength based
said. Not one positive thing. I look at him, see his face and know
inside that his heart is breaking.
“Excuse me (my voice is cracking. My
voice is expressing the hurt I can see on Ray’s face), first of all, Ray has only had 8 sessions. He keeps track on this pad of the days
you come to get him and the days that you do not. This is the FIRST time he has EVER been in PT at this
facility in almost 10 years. He
deserves a chance. He wants to
walk. He should have never been
given a wheel chair to start with. When he came here in 2004, he was using a
cane, not even a quad cane, a regular cane. Plus, Ray can walk.
He walks with that quad cane but his left leg is weak. Show them baby how you can walk. .........” Ray looks at me and I can tell this is
not the right time. But there is so
much pressure in the room and everyone is looking at us. “Baby, they are going to discharge you
from PT. Show them that you can
walk.” Nothing. The PT looks at the head nurse and asks,
“Have you ever seen him walk?”
“No” he says. “Has anyone
here ever seen him walk?”
“No.” “No.” “No.” “No.” “No.”
The
meeting ends with no performance.
No more than 5 minutes later, Ray’s warm up is complete and he is
talking to me: “JT, they don’t even want me down there. There is no encouragement to walk. There is no one there to encourage me. I want to get stronger JT so I can walk
but honestly the way they treat me makes me feel like I don’t even want to be
down there. I will just do it in
my room.” “Ok baby I get
it. I know. I am so sorry. I can’t believe they said you made no
progress. They are wrong. You have to show them Ray.”
Ray
agrees to talk to the social worker and show her that he can walk. Once the social worker arrives, Ray
gets up and starts walking with his quad cane, across the room six times,
talking as he is walking, “All I want to do..... is have... the opportunity.........
to exercise ........so I can ........walk....... again. I need to..... strengthen....... this
leg...... Why do they........ want
to....... cut me off? I just want........
the chance...... to walk.” “Wow,”
the social worker says, “I’m going to get the director of PT.” Half an hour later, the director shows
up and the social worker says to her “Ray can ambulate.”
I
find myself telling the PT director what a physician mentor recently taught me
during rounds on the NICU “Medicine is as much an art as a science. You simply can’t treat everyone the
same. You say Ray has made no progress
but really your conclusion is based on the wrong assessment. Your assessment of
Ray was on the parallel bars with two people holding him. He can’t walk like
that. He needs more freedom to
have proper range of motion. So
you see now that he CAN walk with a quad cane, which is actually more advanced
than you thought....”
Ray
was not discharged from PT. In
fact, we went out the very next day to buy him a new pair of sneakers.
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