Life isn’t all hard. I just came home from a wonderful party with beloved people (a THANKSGIVING party, no less) and I was even able to bring the kids, who found their own buddies to tuck away with. I think going to parties with my kids (not going to kid-parties) is one of my favorite things in the world! So even if today hadn’t gone so great, the night ended well.
But I still want to record a bit of our day before I forget it forever. (It was a good one, by the way.)
First of all, I want to say thank you to those who have reached out to me since last night’s post with practical suggestions. I woke up feeling ready to fight today. It was as if another gauzy curtain had been lifted. I knew that there were possibilities out there, even if I had to do some detective work to find them. And with that, the Phoenix of Hope rose again.
I didn’t mention it before, but I had a visit the other day from a dear life-friend, Lois Bechtle. She is really more of an aunt, in that she’s known me through my childhood and still remains a pillar for me to return to in adult life. I even lived in her house when I first moved to San Clemente from LA when I was about 30. It was in her house that I was finally able to seek treatment for Depression, and look at is a psycho-physiological issue rather than a shameful failure at self-help.
Anyway, that is enough about my past— I just wanted to express how important Lois has been to me in serious turning points throughout my life. (I became good friends with her daughter when we were about 8 or 9, I think.) Lois has been in the medical profession most of her life…even past retirement age, she is still working as a nurse. And she’s learned to listen to me since I was 8 or 9. She recognizes the truths in my voice when I don’t trust them yet myself. She can help me make sense of my words. On Sunday, when I was floundering, she came over and helped me make a to-do list…of finding people to be on my side. NO, I haven’t got through it all yet. But it gave me some direction. In a nutshell, she encouraged me to appeal to those who had some power, those who could make a difference, or at least guide me forward. She said: “you need to put a face to his situation.”
“In the early days,” she said, “you did that by putting pictures on the wall and bringing his children and friends in. The staff could see the greater picture to his file. You made him a human being they could relate with.”
I don’t know how true that is.. I’ve stopped doing those things so much. I’ve burned out a little: I don’t have the energy to make the parade. Now all I have is questions and annoyances. No fun.
Antoine de Saint-Exupery said: “What saves a man is to take a step. Then another step.” It never stops.
It seems that at this week in our journey, this applies more for the wife than for Vernon. We take turns. Marriage is funny like that.
Anyway…back to today: I visited Vernon this morning with my friend Mary, who is so natural in the hospital-surrounding. She had already visited Vernon on her own last week,not even needing me as a tour-guide. So she had also seen the difference of his clarity from a few days ago to what it is now. She had also visited Mission many times early-on, so she has also noticed the improvements.
Like yesterday, he seemed sedated and groggy in the morning. (I had left a message yesterday with the doctor to pull back on his anti-anxiety meds, but still haven’t heard back from him.) He reminded me of a tired teenager trying to wake up on the weekend when there is no real event to wake up for. It took awhile. And I thought, I’ve seen much stronger glimpses of my husband before now. Where did he go. It wasn’t that bad but it reminded me of “One Flew Over the Cuckoo’s Nest” when a naughty boy who is obviously very sharp suddenly gets a lobotomy just for letting his mind/emotions be known. (On that note, a middle aged Vernon is cuter than a middle-aged Jack Nicholson.)
Lois stopped by the facility today to see if she could help access things with me. She is so wise: she asked for a meeting of the authorities, something I never would have thought to ask for. They all happened to be there within five minutes of the request. I think that in itself if probably a unique moment—a timing-miracle, if you will.
She let me ask the questions, express my concerns. BUT somehow with her there rooting for me, I felt bolder. I felt allowed to speak my piece, which was:
” You tell me everything is about insurance. I understand, I think. But my husband has not had any therapy for 10 days. A speech therapist came today and fed him some ice chips. However, he was so groggy from the medication he was given to keep him from being active in the night, that he could hardly be engaged in his session, and so the therapist wrote him off for not working hard enough. Therefore, Insurance wont approve him for more therapy-time, because he isn’t improving fast enough. It seems to me that there is a vicious cycle spiraling the opposite way that I expect. And we need to stop that and reverse it.”
Who knows if they heard me. The staff seems really great on their own merits. They’ve always seemed to me to be full of good-will and good-energy. Apparently, for me that isn’t enough.
Then Lois brought up something in our meeting that may have been the shifting point of the whole few days.
“What experience do you have with TRAUMATIC BRAIN INJURY?”
Wow. I hadn’t even thought of that. Not lately, anyway. What an epiphany!
Maybe that is the problem. I’ve just gone alone with the tide of recovery because I was looking for the convenient location, somewhere closer to home, so that the family could help nurse him emotionally back to health. But wow! What if we are totally unequipped for this. Even this level of care seems to be lost when it comes to Vernon. As I keep hearing, no two Brain Injury cases are the same. And even with a healthy brain, Vernon never fit the norm. He avoided it.
And so…we are off again. Searching for new places with a different focus. I feel driven. I just hope we can land at the right place…and soon. It appears that brain-injury is a very rare thing indeed. Fitting that my husband should get one. He’s a novelty…always has been, always will be.
I found this picture tonight…from July! One of Vernon’s spiritual mentors reading a Psalm to him. Vernon has always been a bit out of the box. And Eddie is too, not that they always saw eye to eye. But to think: this was only 5 months ago….it does help me put time into perspective.