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I’m sure that often the Occupational Therapist’s  important job gets overshadowed, as she has to aid so much in the big muscle work of the PT.  But Vernon had her to himself for a bit yesterday, so I recorded a few videos. My iPhone ran out of space before I could get more, but part of the reason I’m sharing these is so that the people who have signed up to visit/help Vernon might have an idea of how easy it will be to give him gentle ‘therapy’ on his right arm and leg. We will be providing simple range-of-motion diagrams as well: the same ones I was left with in the hospital. Its more likely to get it right than get it wrong.  At this point, I’m focusing on quantity over quality. Massage is great too. Anything helps!

And most of all, he will know he isn’t alone. Touch is more healing than we understand.

Here is a basic rotation of the arm and shoulder…

The hand and fingers…

And simple work with a washcloth (or flannel, as Vernon would say.)

“Gratitude is the memory of the heart.”  Jean Baptiste Massieu

Side note to our subscribers: we have had some internet problems at the house  for the last few days, and so it seems my last post from a remote location (Panera Bread: Free Internet for ALL!) may not have been sent to our faithful blog subscriber’s emails.  If you missed the last post, you might want to reload it here, because I feel the blog story there is already a turning point into the next season of Vernon’s recovery.  

Big Breath!

We must have some fresh prayers for us, because I could feel the renewed energy around me today. I had a meeting with some of the staff, including a new social worker that I only met today. It’s so strange to me that they don’t know Vernon the way I do..or even the way people at the past two facilities came to know him. Its a total fresh start. I feel like Bill Murray in Groundhog’s Day, reliving each day but with increased awareness, and hopefully, wisdom.

Because of our past experience, I came into today’s meeting with more authority than I had the last ‘get-to-know-you’ meeting.  I didn’t need an advocate by my side. After the general introductions, I basically said:

“I know my husband will get back to what he was a month ago, which is not where he should be at this stage in the game. I think he should be at least 3 months further along. I feel betrayed by previous care, but that has taught me a few things. I now know I have to stay on top of things even more than I have. I am fantastically happy to be in this new care center. I have seen nothing but positive things here so far. Everyone has been great. BUT…

We can’t afford to lose any more time. If an infection gets septic like  this last round, it will be fatal. Please help me keep on top of the signs.  This place is is his chance…help me collaborate with you. What can I do to help you help him? ”

I hope that didn’t scare them.

The wonderful thing is…

They said they LIKED family involvement. They said these are the cases they prefer.  We will see.  But I do feel good. In fact, even before the meeting, I had a spring in my step.  I knew there would be a connection.

I believe the prayers are carrying us through. Thank you again.  Love is compelling me forward.  And I think in this place, it is moving the staff forward too.

Also…Vernon open his eyes in the middle of his PT session today and point directly at me, saying very clearly. “That’s my WIFE!” He may not be able to say my name yet, but I’m so glad he knows who I am. Things are looking up, proven by HIS opening his eyes and looking up. He expressed that it is hard to concentrate, but the fact that he is opening his eyes more often again, even in small increments, is good news.

I look at the blossoming tree at the front of Vernon’s new home as a symbol. They may have to start fresh with him, no knowlege of his past improvements. But sometimes a blank slate is a good thing. 

Hello, Springtime!

“See the winter is past: the rains are over and gone. Flowers appear on the earth; the season of singing has come, the cooing of doves is heard in our land. The fig tree forms its early fruit; the blossoming vines spread their fragrance. Arise, come, my darling: my beautiful one, come with me.”    —Song of Solomon.

I need to clarify something I said in a previous post. When I mentioned the most of a TBI recovery takes place in the first year, this is based on what physicians have told me. That doesn’t mean he will not continue to recover after one year is up. If we are to think of recovery in terms of a baby’s life, the first year shows the most significant changes, but the child will continue to develop and learn beyond that. So when I say we have a window of the first year, I don’t mean he will suddenly stop healing. I’ve heard these things can take many years before a person begins to seem normal again. But the first year is important. The more foundations laid out in the time, the better his chances for a full recovery.

I believe the previous care home we were in was a bit of a holding tank for Vernon. He did not recover there as quickly as he might have somewhere else. It was frustrating as I felt stuck in the System.  Now that we have the gift of a new care home as well as Medi-Care insurance, I want to make sure we take full advantage of this new season.

But it isn’t enough just to leave it to the carers at the hospital. Vernon receives a half hour of PT/OT in the morning and another half hour at night. The Speech therapist works with him daily. But the truth is, Vernon is now acting about the same as he did five months ago. These therapies are not going to be enough.  Even the wonderful Doctor Close who recently cared for him at Hogue pulled me aside to advise I hire someone to be there with him all the time, just to move his legs and arms so he isn’t sitting in bed all day, getting worse.  She told me how her family had gathered around her grandfather in Poland when he was in a nursing home, taking four-hour shifts to keep him company and massage and move him as they could, and that I should find a way to do the same for Vernon.

You’ll remember Talar, whom I’ve spoken about so much lately. The Doctor spoke to her about this as well… and where I felt overwhelmed (Another thing to DO? Another thing I can’t afford?) she took the initiative with gusto.  She saw it as a fantastic opportunity to get members of the church involved…whether or not they know Vernon or myself didn’t matter. She went to the church and asked for a signup sheet, which people put their names on on Sunday and offered one or two brief training sessions where she can show people how to do light range of motion and simple massage.

I was overwhelmed to see that so many signed up and committed to times over the next 6 weeks to 3 months. Most of these people don’t know Vernon (or me) but they wanted to DO something. I do believe in healing, even Divine healing, but I also recognize that sometimes it requires our involvement. Its an opportunity for more people to be useful and for them to be touched and changed as well. The nursing home is open to Talar’s idea and I expect there will even be overflow that will bless others who live there.

So we begin the new season.  It is strange to relinquish some of  his care in a new way, but I know I can’t do it alone anymore. He needs fresh horses as much as I do. I’m excited to see what changes will happen…and I know they will.

“There is a light in this world. A healing spirit more powerful than any darkness we may encounter. We sometime lose sight of this force when there is suffering, and too much pain. Then suddenly, the spirit will emerge through the lives of ordinary people who hear a call and answer in extraordinary ways.”—Sir Richard Attenborogh

“There should be no boundaries to human endeavor. We are all different. However bad life may seem, there is always something you can do, and succeed at. While there’s life, there is hope.” Stephen Hawking

Thanks to Abraham Lincoln (and his mother) for having a birthday that eventually became a holiday, which Maki and I took advantage of yesterday by catching a matinee of The Theory of Everything. If you haven’t seen it, just watch the trailer and see if you can keep your eyes dry.

Of course it is a remarkable story and the lead acting was phenomenal. We all know Stephen Hawking is one of the great geniuses of our time, in spite of his disability.  The movie shows him starting out young and healthy as his body quickly degenerates with ALS, while trying to have a normal family with a wife and three kids.  He overcomes the doctor’s initial prognosis of a mere two years to live, and continues life as a man of huge ideas who is able to communicate them beyond his physical ability…and is still working, let alone living, at age 73.

It was an inspiring film. Hope above all. A good attitude and the love of a family getting him through the hard times.  Overcoming the most daunting odds. But I left the cinema completely exhausted. I felt exhausted for the wife, who stood by his side as she tried to raise babies and maintain a normal home around him. I took it too personally, as I am beginning to realize I often do these days: always trying to identify deeply with something that may not even be close to my story. Always wondering what I can take away, what I can learn. I thought about how charming Vernon can be on a good day, even though his brain is damaged.  I thought about what a great thinker he used to be.  (Ok, maybe not a ground-breaking physicist, but definitely controversial in a way I think Dr. Hawking would appreciate.) I thought about how much hope she had for her husband in the beginning and how caring for him and the household became increasingly difficult to manage over the years.

Its funny how two people can view the same movie so differently. Maki was inspired and thoughtful. I was tired and sad.

On the way home, Maki asked me why I was still crying. I said: “I just felt that it was so much like our story.”

He said: “What are you talking about? Its completely different!”

“How is it different?”

“Vernon is getting progressively better, where Hawking was getting progressively worse.”

I was startled by Maki’s words. Did he really still  think that?  A better question was when did I stop thinking that? I must have let these past few weeks take more out of me than I had realized.

Oh, I know, I know… Hope Springs Eternal. I’ll come back to it, maybe even tomorrow. But the idea of doing this for another 50 years doesn’t feel very invigorating to me. I obviously missed the point of the film. I told you I am taking things too personally.

I don’t know where this will all go. I don’t know how completely Vernon will recover. The doctors have told me the most recovery of a traumatic brain injury takes place in the first year. We are rapidly reaching that point and it still feels pretty slow to me, though I also recognize that in the eyes of others, he has come very far.   Maybe there is a freedom in admitting I don’t know if he will recover much more than he already has. I don’t know that either.  I guess I don’t have to.

I also don’t know if, like Hawking, Vernon’s greatest contributions to this world, have yet to be made.  He deserves the chance to find out anyway.

Last night, I started this painting. She’s not anyone I know. It’s not supposed to convey or mean anything.  But I’m sharing it because she looks exactly how I feel. She looks tired. She doesn’t look like she understands anything either…but she’s trying to.

And then there is this:

“The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge.” —Stephen Hawking

So at least I’m in good company there. 🙂

Though Vernon returned to the Care Home with a few extra PT challenges and some eyebrow-raising bedsores, he is still in one piece.  And today I could see that he has turned the bend mentally once again.  Whereas he couldn’t remember my name all week, even coming up with such stabs in the dark yesterday as  Melissa, Heather, and Debbie (No, I have no idea, either), we were back in the realm of the familiar today. I never thought I’d be so happy to be called Vanessa and Synnøve.  One day, I’ll do a proper study on how men categorize important female relationships deep in their psyches. But for now, I’m happy to think that my name might be next on the list.

Welcome back, Vernon.

As of tonight, Vernon has been sent back to Mesa Verde.  This round took a lot out of him and he still hasn’t returned to the Vernon of two weeks ago. I have been hearing stories of other brilliant men (without Brain injury) who were thrown off mentally for months because a UTI got the better of them. So we crawl slowly out of this space, believing that his mental and physical setback is only temporary.  The doctors think that getting back to a more normal environment will be better for him, that he will be less likely to contract MORE infections, as he won’t be prodded and poked every couple of hours.  And if there is a need to return to the hospital, his care home is only a couple miles away.

A couple of weeks ago, when I asked for suggestions for Vernon’s birthday playlist, his sister Vanessa sent in ELO’s Mr Blue Sky. She mentioned the vivid memories of their sitting around their childhood lounge, listening to this song on repeat.

https://www.youtube.com/watch?v=DhFy4qZ0ah8

It came to mind again today as I took a coffee break and the winter sky was blue as can be. Shocking how just getting outside and lifting my eyes up can make a difference.  There is ALWAYS something bigger than my little world. Always something more. In the course of my travels through the hospital halls this morning (an elevator trip or two, sitting in a waiting room) I overheard two stories of people preparing to say their last goodbyes to a beloved parent and another story of a possible overdose death. And I’m sure there are many more stories like that every day inside those walls.  As I walked out into the sunshine of the cafe patio, I remembered to count my blessings. Vernon is leaving this place. That is a GOOD thing.  When I start to feel sorry for our family or overwhelmed because we seem to have just taken another long-cut on the recovery journey, I am reminded we still have HOPE.  We still have a future. Vernon still has hope and a a future.  It doesn’t matter how he will get there, but that he will! It doesn’t matter how we will function till then, but that we will.

“Clouds come floating into my life, no longer to carry rain or usher storm, but to add color to my sunset sky.” —Rabindranath Tagore

So there’s that…