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.”
It’s true that I’ve stopped doing that so much. I’ve burned out a little: I’ve tired of hearing my own voice tell the tale and I certainly don’t have the energy to make a new 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.
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.
68
Allison — you are a treasure — and an amazing advocate for Vernon. I applaud your boldness and willingness to push past the opposition. There is an place where Vernon will thrive. Reveal it Lord. Have you considered Dr. Amen in Newport Beach as a resource. They deal with Brain Scans and Brain Trauma and they are spiritually really grounded.
amenclinics.com
“Documenting brain injuries—including those in which the person stayed conscious—is essential to understanding a person’s brain health. Even minor brain injuries can have negative consequences for years to come. At Amen Clinics, we understand the impact brain injuries can have on a person’s life, and we conduct a full personal history before beginning any brain scans or treatment program.
SPECT IMAGING
SPECT imaging (which stands for single-photon emission computerized tomography) is a special kind of photograph we take of the brain to help us better understand how it works and what is going on inside of it. SPECT can specifically help people with brain trauma by:
Helping identify if there has been brain trauma
Showing deficits not visible in anatomical studies
Identifying affected systems
Helping determine if treatment is working correctly
Helping determine if there could be co-occurring conditions that need treatment
Increasing treatment compliance by showing pictures of results
Providing scientific documentation that may help with special services or legal issues
Helping people gain a better understanding of their brain through visuals”
Hope this helps a little — at least to know they are there. Their videos are really good too.
first of all big hugs to you Allison, yesterdays post was hard to read, i could feel your frustration ,your sudden slump in energy, Vern was coming on so well at Kindred, how 10 days could make a difference (in the wrong direction), when he isn`t getting the support he needs and was getting from therapy. But todays post is a very different read Allison , i could feel your new energy, your positive outlook..your new fight , just when you needed it , your friends were there, and Mary was just who you needed by your side yesterday …deep breathe and now you have to fight, you are Verns voice, you both deserve the help and support to carry positively on your journey…. x lots of hugs x
Hats off to you, I think you handled that beautifully! I’m also so glad that you had good friends there to support you, and to help arrange a meeting with the staff, etc. Praying now for God to lead you to just the right facility where Vernon will really thrive!
Creative visualization is a very powerful tool for manifestation. Creativeness is something you have in spades Ali. Before sleep or at anytime your mind comes to it, focus on what you want in your future.See it in your mind with total clarity, send it love and I’m sure you will manifest it. I have done this and even written down what I want to see happen, it works for me, I also ask my guardian angels to help out and I’m sure you can ask Vernons angels too.. Your doing great beautiful lady.
thankyou ABI .. Vern has lots of angels around him , gosh does he need them right now xx
We will keep praying that God will continue to bring people to you who can help and encourage.
Frank and Denise