Tuesday, July 2, 2019

    Wow! I forgot to make any notes for Monday. I am relaxing. I’ll make entries when I can.  I will include several days in one entry. Also, I’m getting feedback. “I no longer read the details of your daily routine.” “I skip the details of what you do in Bikram.” “ I look forward to your ‘musings.’”  I respond to feedback.
    Today, Bikram, as usual. I have been working on bending my left knee while walking. I’m trying to get more flexibility in the joints of my left leg, ankle, knee, and hip.
    While I was pulling out of the parking lot at Bikram, Judy called to tell me that Luke had an unusually long seizure and was taken to the hospital.  Luke is about 1 ½  and suffers from a rare genetic mutation called the Fox G1.  There are only 300 people in the world who have been identified as having this problem.  It is one of the most serious disabilities I’m aware of.  The white matter in his brain didn’t develop normally. He will never walk, talk, or even think. While he can see, it is questionable that he can form a concept of what he is seeing.  He does seem to respond to music, mainly Mozart, but so do plants.  He is a lovely, sweet child.
    FoxG1 children suffer from seizures. Luke’s so far have only occurred once or twice a month and lasted for 30 seconds. This one went on for 30 minutes; his parents called the EMTs.  He was rushed to the local hospital.    Even pediatric neurologists are shooting in the dark when it comes to treating these children.  The EMT workers were familiar with seizures and gave Luke something to knock him out to stop it. Arrangements were made to fly him and his mom to Oahu, where there were specialists. Medical emergencies are flown over either in a helicopter or a Cessna.  Mike and I were on a Cessna; Luke and Jazzy were on one too. His father and four-year-old brother flew over that afternoon on a regular commercial flight.  Because the major medical facilities are all on Oahu, being flown over is common.
    The sedative helped Luke with the seizure.  They kept him overnight, but this may be the new normal for Adam and Jazzy.  No one knows what to expect with these children. They do know that there is a limited life expectancy. I know they will be sad when he does die.  Adam and Jazzy are doing an amazing job facing this together, helping each other out.  I can only hope that remembering their behavior with each other and the love they gave Luke while he was with them will comfort them way my five weeks with Mike provides me with comfort.  Of course, Mike was a 78-year-old man, and Luke isn’t even two now.
     I learned the correct spelling of Katrin’s name when she witnessed my signature on the LSW change of beneficiary form. She put in the mailbox and commented that if you want to mail a letter in Switzerland, you have to drop it off in a mailbox or the post office.  Now that’s true here too in most places. I don’t know where she lives in Switzerland, but I would imagine that rural areas have the same drop-off/pick up arrangement we do.
    Kathrin replanted the two plants that Mike bought around Christmas time to decorate the house.  One plant looked bad before she did anything with it. Both look bad now because she forgot to water it after the transplant.
    Katrin and I went down to the bottom of the property to pick some limes she needed. The tree doesn’t have a single large yellow one and has dozens of little green ones. It’s like the tree is starting a whole new crop, except there are no flowers promising additional ones after this batch.
    Katrin also picked the one ripe mango that was accessible.  I was screaming at her not to put her nose up against the stem to smell it.  Mango sap has the same chemical as poison ivy and the same effect on the human body. Kathrin said she’s not allergic. I hope she washed the fruit thoroughly because I am- terribly.
    I went out in the upper backyard and continued ripping out that overgrown vine on the fence.  Very rewarding clearing all that out.  I grabbed hold of a vine, pulled and pulled, and got six feet of foliage ripped out.  Ah!
    I took my shower afterward, did MELT, and read some more of Mike’s book. I am finding it very dull to read. Too pedantic. Too repetitious.  If no publishing house accepts it, I’m going to work on rewriting it.  I’ll have to work with someone who knows the material better than I do, but I think I can do a decent job. Mike said I was a good writer.  This is one of the many ways that I improved because of Mike’s influence.  He made me a better writer.  If I reworked his book, I’d just be rewording what he already wrote.
    Kathrin made me a salad before I had breakfast. Every time she prepares something for me, I can feel Mike being joyful, exuberantly so.  He fought for his life because of me.  He gave up only when he believed I would be okay.  No matter how much he fought, his body no longer had the ammunition to win that fight. But it was sweet of him to try. Talk about self-sacrifice.  He was in agony.  But then it all came together: Damon’s willingness to let him go, mine and finally Mike’s letting me know that he was ready.  When we met with the palliative team, we agreed to wait two weeks after we thought the end was near. I  pulled the plug after one.
    While I had my usual salad, bread, and lemonade for dinner, Kathrin also prepared some food. She made some vegetarian patties that were in the freezer.  Again, I could feel Mike’s joy. I loved the way he cared about me. Even though it was a little bit much at times;  he assumed he always had to protect me.  Anyone who has met me is quite sure I can take care of myself.  While Mike was protective, he never limited me. He also loved my courage and zaniness. I had a mate who not only loved me but liked me as well.  I was so proud of him too.  What a wonderful human being. Perfect? No, but made every effort to be better. That was good enough for me.