naked transformantion

i know this space isn't to write about my patients.  it's to write about zoe- about nonverbal learning disorder-about life with her and her challenges-about homeschooling and what works and what doesn't.  i started this space to write it out so other people who were going through similar things wouldn't feel so alone- so that i wouldn't feel so alone.

but on fridays- when i'm surrounded by people who are dealing with much bigger things- heavier things- living and dying things-i'm humbly given perspective, i'm reminded of how good things are.

especially on the day after thanksgiving.

today i had three new patients who were all given the same time slot- 9am. each patient needed at least an hour, and they got it, but i was running late.  each patient needed hospice.  each patient needed full attention- focused attention- we're not just taking about blood pressure, we're talking about dying.

the second patient i saw broke my heart- in a beautiful way.  he's in his 60s. he has ALS- also known as Lou Gehrig's disease- a progressive degenerative neuromuscular disease- and in the last 8 months he'd gone from snow mobiling to and from his colorado home, to being unable to speak, unable to eat and unable to move, except his arms.  breathing is becoming more difficult.  his facial muscles are weak- so he has a blank stare, his oral muscles don't work and he can't manage his secretions so he drools or has a tissue in his mouth.  there is little dignity it that. he is vulnerable.  he can't hide what he's living.

i've said before that having a kid with special needs is like walking around with your underwear showing all the time. you're slightly exposed.  the humanity we all share in is- weakness- embarrassment-feelings of awkwardness;  most people can hide from these things- but some can't and it's like being stripped down. 

he is living naked.  he writes to communicate because he can't speak- and on his lap he had a board and a pen. 

i asked him what he wanted- what his goals were.  he wrote to return to colorado in the spring, and he started crying.  his wife explained that he was the cook at a christian camp for families and that he wants so badly to go back for this in the spring.  but this past spring, when he got sick- they took him out of the kitchen, and gave him an even bigger job- he's a 'prayer warrior'.

this means that he prays for all the families that come to that camp- each by name.

this man, who can't speak, this man who has been given something to bear that he never wanted, something allowed by his God, is praying to that God, for other people, in the deep clear voice of his heart.  this man is giving back out of joy- not crumpling in bitterness.

wow.

he wrote:  'this isn't the script i thought i'd be given' 
(it never is)
he wrote: 'but i know where i'm going'

and i started to cry. 
i had to borrow a tissue from his lap- a tissue he'd brought- and the three of us cried.

i asked him when he wouldn't want to go on anymore-
(because in ALS you can ventilate people for a while- you can breath for them-because their mind still works but the lung muscle don't respond to the signal from the brain to breath)-
he wrote: until  i can't think or pray, until then i want ventilation.

again, tears.

there is beauty- deep beauty in his sadness.  he's making lemonade when he never wanted a lemon tree.

when i was in uganda this summer i met an old woman who had lived many years there as a missionary teacher with her husband.  he had just died and she had become old and frail and was no longer able to go down the hillside to teach the children in the town.  she prayed and asked God to take her 'home' since she could no longer do her work as a teacher.  she tells how she felt God answer her back- He said- you can't go down the hill anymore- but i still need you- i need you to pray. pray for everyone who comes to see you- pray for the children of the town. transformation of purpose. just like my patient. a higher calling perhaps. a bit closer to 'home'.

this thanksgiving was good. the food.  the people. the weather.  zoe did OK.  it wasn't perfect.  she got sticky. she had some meltdowns.  it was a lot of people and a lot going on -out of routine.  but, there was insight.  she was aware of it and felt badly. she was more re-directable. she's in process. she's figuring it out.  and i didn't have that awful feeling of doom or anxiety, i was able to enjoy the day,  the conversations, with out feeling like the other shoe was going to drop.  for that i'm so thankful.

so i set my patient up with hospice.  i arranged a consult with the pulmonary (lung) doctors for next week.  i added a medicine to help with his saliva- to try to help him 'put his clothes on'. and i prayed with him, because that for him, was healing- that for him, was dignifying- that for him, was humanizing.  that for him made him not so alone.

at the end of the visit, i asked if he would add me to his list of people to pray for.

he wrote: why do you think i asked for your card?