Seth-n-Jode's Adventures

Seth asked me this today.  So I thought I'd write a love letter to let him know how I am.

To my best friend, mate, and lover,

The mountains and rivers are calling and you are alive to see them. 

The wind rustles through the trees and you are there to breathe the sweet air.

The sun shines each day healing you in body, mind, and spirit.

The fresh rain washes away your wounds.

What keeps me in the present of today is to know that I have you with me tomorrow.  I love to walk in to your room each day and see your smile and get a kiss.  I know you are hurting but this too shall pass.

We have a whole lifetime ahead of us!  New adventures. Many mountains to climb and wildflowers to witness. Rivers to kayak where we will be sure to always take a lunchtime snoozesta!  Trails to mountain bike.  Deep powder days with friends (if there is such a thing!).  Sharing laughs with old friends as well as family and making new friends.  Many more evenings of "setting a spell" on our swing outside in the cool dusk as the moon rises overhead.  Snuggling with you each night. 

And knowing that each new day, I wake up to your smile and a kiss.

I love you so much...like the rustling of the creek that comes down from Highland Mary's Lake. Like the views of the Grenadiers with newfallen snow.  Like a field of wildflowers in full bloom.  Like the smell of pine trees on an early summer ride.  I love you a million, billion, trillion times around the universe and three times.  That's a lot.

That's how I'm doing. 

When we walked in today, Seth was slouched down in his chair and asked if we could please unslouch him.  They had cam strapped him in to the chair as they were worried with how far he was leaning forward the previous day and that he could possibly topple out of the chair.  But his behind slides on that chair and then it causes him to slouch.  Problem 1001 in a series of problems that we'll work to fix!

Its going to be a long road guys. This part where Seth can't move about actively but can mentally.  I told Seth that too and he agreed.  And he actually seemed to believe it when I told him this time.  I told him that he needed to think like Doug Mawson or that man in Touching the Void where he just focuses his way to the next rock or ridge and doesn't try to find the goal just yet because its too far uphill.

I asked Seth if he remembered what I told him yesterday about what had happened.  He said he thought he had been in some sort of car accident and that he had injuries but didn't remember the exact nature of what happened.  I told him again.  He knows where he is now.  He knows the date.  He remembers most things that I ask him about but then there are odd things he doesn't remember.  Like he didn't know who the democratic nominee was for president but he knew that McCain had been nominated for the republicans.  Its so random...He definitely doesn't remember anything about the accident.  He doesn't even remember that we went mountain biking that day.   The therapists say this is all normal and will work itself out with therapy.

Seth is definitely asking more questions.  He wants to know if there is some way we can arrange to get him into a shower or to be able to sit on a toilet.  He now says when he hurts and asks for pain medication when it gets too bad.  He's not squirming around so much.  He seems calmer.  I'm starting to feel like he is better able to fend for himself now although he is still fragile...my little bird that is trying to fly from the nest with his still broken wings. 

One thing I've been working on lately is to try to rethink my thoughts on this "system" that I've talked about in previous posts.  That is such a scary word. It literally makes me shake with fear.  And the fact is there is nothing I can do, in this moment, to change the overall health care system in America.  It is what it is.  I just need to think of it in a different light.  Not as this scary place where I have no control but rather as a playing field or plane of consciousness that is different from what I've ever known and where I need to learn the rules, restrictions, and where I can push the boundaries and then see how I can best work to bring Seth through this place.   One of Seth's favorite movies is called Empire of the Sun.  Its about this little kid that is in a war camp and survives and thrives by finding his way and surviving in a very foreign world.  Seth and I just need to do the same thing with where we are now.  Different circumstances, surely, but the concept is the same. 

We are having a Family Care Conference with the social worker, doctor, and clinical director among others next Tuesday so I came back to Boulder this afternoon to put together the agenda.  I want to make sure I understand everything as it relates to Seth's care and his next steps and how, ultimately, we get home.  One step in learning how to survive here, I suppose.

I also, in a certain way, became self aware today.  I actually felt hungry and thirsty for the first time in 3 weeks.  My mom has just been putting food and drink in front of me and I've been forcing it down.  But today, the juice I drank tasted good.  The sandwich was yummy.  Wow, what a concept!

We took Seth out for a walk again today and it sprinkled on us. The rain smelled so good. Like this breath of fresh air straight from the universe.  He really likes being outside.  I think I'll take him for a walk again tomorrow!

Seth became self aware today.  Up until this point, he hadn't asked any questions about what was going on or why.  I have been telling him what had happened but I don't think it was totally computing.  Today, when I came in, he asked "Did I get in some kind of car accident?".  Why are all these people tending to me?  Can I just get up and take a shower?".  I told him the whole story.  And I told him that I would tell it to him again tomorrow if he forgot.   The therapists say that this short term memory loss is very normal and will work itself out but that it is a really positive sign that he is starting to ask these questions.

The occupational therapist, Angela, is simply amazing.  She and Seth have lots of laughs as they do their therapy and often make us laugh.  She did a lot of work with Seth today.  She asked him to write a sentence.  His first sentence that he wrote after the accident, "I would like there to be world wide fine art.".  OK.  She did the pegboard test with him where she puts in a pattern and he needs to match the pattern.  He aced it.  She asked him to spell the word "World" backwards.  He got it.  She asked him to subtract 100 - 7.  He got 93 but when she asked him to subtract another 7, he got a little confused and told her to just baseline it!  Seth is a math wizard so I could tell that this was frustrating to him.  She named three words and he had to name them back to her.  He got it.   But then she asked him to name our cat.  He cogitated a bit and then said "Walking Stew".  The Occupational Therapist said "Excuse me??".  I had to explain....  You see, Seth and I have an ongoing battle about Kitty's proper weight.  She only weighs 8 pounds but if she gains a single ounce, Seth is moaning and groaning about the fact that we have an overweight cat.  So, especially during the winter when she sleeps on her kitty perch all the time, she puts on a few ounces....and Seth calls her Walking Stew because he thinks she's too chubby and would make a good stew.  Each spring, we take her to the veterinary who ultimately is the final arbiter on if she is too chubby or not since neither he nor I can agree.  Good thing I'm here to explain all these Sethism's otherwise, I'm sure, the therapists would deem him certifiably crazy! 

Angela said that Seth scored ~20 on this test.  She said that most people (without head injuries) will score between 24 - 28.  She said she is really happy that Seth is progressing so quickly.  He was barely talking 4 days ago and today he scores near where people without head injuries score on a cognitive test.  She said that when she came back on Monday, she was sure Seth would continue improving based on how much progress he is making every day.  His sister in law Sue has been bringing by brain games every day like Soduko and crossword puzzles and Angela said that would help to continue healing him.

I bought a hair cutting kit and an electric shaver so Seth had a spa day today.  We trimmed his hair, shaved him, and washed him up.  And then we went for a walk.  We just rolled him out to a shady spot and just relaxed.  We then went inside and sat in the cafeteria for a bit and had some lemonade.

Seth seemed a little less squirmy today.  The pain wasn't as bad.  The problem is that he is now hanging on his trapeze bar with his bad arm as well as his good arm.  He continually takes off his sling because he is moving his bad left arm with his good right arm.  He says his left arm and hand are tingly and he wants to rub it and move that left arm around.  The docs said they are going to call over to the bone docs on Monday and see if they can start doing more active rehab on his left arm.

And when he is in his chair, he leans forward to just try to get some relief off his back.  He can't be at 90 degrees yet because he might throw his hip out so my mom gently pushes him back and tells him he knows better.  He always agrees and then tries it again.  Typical Seth.

We also got a DVD player from some of my co-workers (thanks again guys) and Seth started watching the Everest film you sent.  That seemed to distract him from squirming so much.

The picture today is Seth sitting in one of the huts where we stayed on our Nepal trek enjoying the sun. It is one of the few pictures I have of him just relaxing.  Which is what he needs to do right now!  He did agree that in exchange for putting me through heck and back with this ordeal, that he would climb a big peak with me.  You all are my witnesses!  He can't say he didn't say it because he forgets it tomorrow right?  :)

By the way, Happy 4th of July to everyone from Seth - n - Jode -n- Walking Stew (aka Kitty).

Excerpt from Seth-n-Jode's 2006 Christmas Letter (which Seth always writes):

We have a cat. She mostly sleeps all day and otherwise does what she wants. She climbs trees. She chases hair bands across the floor. Occasionally she kills a mouse and leaves it under my desk without its head. She always lies down on the paper I’m reading. She walks across my head every morning. She never gets punished for anything. She purrs a lot. I want to be her.

Seth needs to heed this advice for now especially the part about purring and sleeping a lot!   He needs to heal.  And that is going to just take time. Yet he squirms all the time.  He has never been comfortable laying or sitting.  He is constantly in motion.  We got him a trapeze bar with a triangle that hangs above his head so now at least he can do pull ups and adjust himself with his good right arm.  That seems to help him a little.  Although now he is putting his bad left arm up there too and my mom admonished him that he could pull his shoulder out if he isn't careful and the doctors will take away his shiny new trapeze bar.

He's never been a complainer and he doesn't complain now.  But today he told me it was a pretty bad day.  For Seth to say that, it must have been bad.  He doesn't want to take too many pain meds but I have asked him to take them when he needs them.  He is talking completely normally and cogently now.  I'm starting to go over things with him about decisions to make on things back home.  I have my mate back.  He'll have even more ugly spots then he used to but thats ok with me!  I like ugly spots. Hooray!

He had spiderman visit yesterday!  Our friend Lori, dressed up in a spider man suit and slunk into the room like spiderman does!  We were all laughing like crazy as she spidered around.   I told her that she needed to hang from the ceiling and have Seth peel off her mask and kiss her to really make me believe (just like in the movie)!  The whole hospital knew about it and Lori went up to the 4th floor to another guy who liked spiderman too and gave him quite a thrill, I'm sure. 

We have the best friends and family. I really mean that.  So many people have just dropped what they are doing and come to help Seth and I.  I really don't know how to thank you except to say thank you.  Joel and Terryl came by and visited for a few days and really helped me out when I was especially blue.   This "system" I talked about in my last post can be very draining and is more than a full time job just to ensure that Seth gets the best care possible every day and keeps moving forward to the end result of finally coming home and is able to execute The Plan.

My mom and I will be visiting the acute rehab hospitals next week which will be the next step in Seth's recovery.  Terryl mentioned one in Boulder that we will also be looking at.  She had a friend that went there and said it was awesome.  If anyone has any info they'd like to share on Craig Rehab, Spaulding or the Boulder Mapleton facility, I'd love to hear about it.

And then after that he gets to come home.  But that is looking way to far up this mountain we are climbing.  We have most likely six or so weeks of hard hiking where we are now.  Seth especially needs to relax over his bed just like Kitty does wherever she is and sleep and purr alot (in between his therapies)!  Wish us luck!

Short blog today guys.  I'm pretty beat.  My mom and I are at the hospital everyday for much of the day helping to care for Seth.  Seth is still making great progress.  He talking even more (full conversations) and finally got his feeding tube out.  It was really starting to hurt his throat.  I took him on a walk and he really liked that.   He says his back really hurts.  He has always had back pain and can never sit still for more than two minutes so I think the next two to three months may be some of the longest of both of our lives.  Please keep the positive vibes, thoughts and prayers coming.  I think we will need them now more than ever. 

His first response to me this morning is what you read in the title.  We have entered into a system that is truly very foreign to us and we must learn to adapt and get the most out of it that we can to ensure Seth gets better.  We'll do it, of course, but this is an unscouted rapid, for sure, with many strainers and holes scattered throughout to avoid.  (You river rats will understand this lingo!).

So hang in there with us.  I'm hoping to find a bit of an eddy soon in which to rest...