Memorial Day



Happy Memorial Day!  Hope you took today to stop, sit, and remember those who have gone on before us.  Oh how easy it is to let them slip our minds, especially the lives they lived.  I think about how they would play the cards we've been dealt - as they were handed quite a few doozies in their day and got through each and every one of them.

I think about great-grandma Ruth Smith (my namesake).  She was born January 1st, 1900 and lived quite a life.  She was married to J. Albert 'Bert' Smith.  To this day I can drive down Main St. in Heber and talk to somone about ole Bert.  Bert was, um, cantankerous.  ornery puts it lightly.  He and I would have sparred every minute and had a great time doing it. Honestly, I blame my, um, way on Bert quite often.

Anyway, Bert didn't think that women should wear pants. Pants!  So poor Ruth Smith had to wear a dress everyday of her life. Instead of calling her by name, he would refer to lovingly as 'woman!'  You might hear, 'woman! where's my dinner?'  Yeah, so Bert and I would have had some words. it was a different time, though.  You want to know my favorite story of Grandma Ruth, though? They day after Bert died, the very next day, she called up her daugther-in-law and asked for a ride to the store, she was after that pair of pants.



the day I left a 95 year old man in tears.

It was torture.  Woodrow is a hopsice volunteer and so off we go to see Sam once a week.  Sam is 95 years young and far more with it than I. He's had a long life, a good life, worked hard, raised a family, and was devastated when his wife of 66 years and 2 months died a few years back.  He's survived 4 heart attacks, open heart surgery, couple rounds of cancer, oh and he was shot in the head back in Kentucky and still has the bullet lodged to prove it. 

Sam has given me so much over these last 2 years (hospice defier, I love it), and the hardest thing about leaving for the summer was having to say goodbye to him.  There aren't enough volunteers to go around (many patients die before they ever get one assigned to them), and so I know he won't be getting a replacement in my absence.  This wouldn't cause me such shame if I knew his family would be there - yet, they are not.

Aside from one grown grandson that brings him his groceries once a week, Sam has absolutely no contact with his family.  Well, maybe a phone call from his son (Sam, Jr., ahem), once a year.  That's it.  It breaks my heart.  Since Sam lives in his own apartment, the only visitors he has are his hospice nurse that comes by once a week and well, Woodrow and I.  Imagine that life and tell me he doesn't deserve more.

I just have a hard time with the way our society treats the elderly, sometimes.  We cast them off, easily forget, prioritize our weekly trip to Chili's over a visit, and simply tell ourselves we're too busy to care.  Perhaps one's grandparents have already passed and they feel they are off the hook - oh my, go to a nursing home, walk the halls and just knock on a door, any door and see how welcomed you will be.  These are our veterans! These are those whom stormed into battle at as 17 year old kids and risked everything for us, yet there they sit alone, forgotten, waiting to die because that would be so much better than feeling abandoned everyday.

Okay, off the soapbox. I get a little worked up.  This was a World I had no idea about until going through it with my grandparents these last few years.  We were fortunate enough to be able to provide nice places for them to live and yet, still watched them suffer daily in their failing bodies and minds.  Hospice was a godsend with each of them and I will never forget Jimmy, that sweet hospice volunteer that drove with me through a blizzard to go and fetch my grandma at 2am to come and be at my grandpa's side as he passed on. 

I'll admit, I hope Sam passes in his sleep and never has to gasp for those final breaths but even more so, I hope his family can step up and realize what an amazing legend they have right in front of them.  When I went to say goodbye the other day, I held his hand and gave him kisses and told him how much I would miss him.  He put his head in his hands and wept.  Not necessarily for losing me, but for losing the company, someone to talk to, to smile with, and that fine hound that comes to see him.  God bless you Sam.  I will sure miss you. Selfishly, I hope I get to see you again in the fall. Honestly, I hope your little body lets you go.

My name is Woodrow and I fly commercial.

Yesterday my mommy and I flew to Salt Lake.  This is a flight I have made several times, always wearing my 'service dog vest' and behaving like the gentleman that I am.  Since my mom is legally physically disabled, she kind of milks the system and claims entitlement to her service animal. details, details.  She is always so worried about checking in with me, since most ticket agents look at her like she's crazy when she tells them she's physically disabled.  Yesterday was the worst round yet.

I was already so worried her since she has been doing way too much over the last 6 weeks - she knows better than that.  I've been giving her my special looks when she is on her computer working on pictures too late, but she didn't seem to notice.  All of the packing, cleaning, organizing, lifting, etc that she has been doing in the last few weeks hasn't helped either.  I have been trying to be good boy but it really is important that I get her up to check the backyard for squirrels a few times in the middle of the night - hello, ground security is very important people.

My mommy woke up yesterday and said specific prayers that the agents wouldn't give us a hard time.  They did. When we got to the airport we couldn't get anyone to help us, all of the agents were huddled in a crowd talking.  When she finally asked one to help, she told my mom to walk down to another one.  My mom finally got her bags checked and then embarked on the dredded conversation informing them that she was bringing a service dog onboard.  I really don't know why people keep calling me a dog.

"You sure don't look disabled to me," one agent at the ticket counter peered down over her glasses at my mom and said. I always get so frustrated when people tell this to her because they don't see her suffer like I do, oh if they only knew what her poor body does to her.  Mom handed over a printed out copy of their service animal policy stating that according the to American Disabilities Act, she is in fact allowed to bring me along.  The agents all huddled in a group talking and refused to even look at the paper.  They said she would have to talk to a manager.  She asked them to bring one over. They said she would have to call a number and get one herself. They went back to their huddle.  They kept saying things like, 'she looks fine to me,' and 'he's just a lapdog,' and all of that. I was worried about my mom because she was so weak she kept looking like she was going to drop.  She finally said she had to go sit down and would try and call headquarters. They told her that she couldn't leave her bags by the counter, 15 feet away from the chair, because they 'had to be with her at all times.'  My poor mom. 

She finally got a hold of some very nice people at the special services department and they were able to help her.  She went up to the counter, with them still on the phone, to try and smooth things over.  They wouldn't budge. The nice man on the phone kept asking me to hand my phone over to the agents because he could hear how rude they were being and how they were wrong in what they were saying. They wouldn't even take the phone.  I tried to be a good boy and stay still but I could smell my treats in her purse that were for the flight and kept trying to dig them out, very service animal like you know. Finally, a manager came over and agreed to talk to the people on the other end.  He turned a bit red and typed something into the computer and handed my mom our standby pass to get past security.  The other women continued to yell at my mommy and told her not to 'try' this again.  She tried to tell them one more time that she was in fact disabled but they kept telling her that there was no way she was. We left the counter and I could tell my poor mommy was near tears.

I was quite a hit at security, though, especially when they wanted me to go through the metal detector separate from my mommy but I refused to leave her side.  I know when she needs me and she was definitely on her last leg.  At the gate, I gave many hugs to all the women sitting around and even made a few toddlers stop crying by letting them pet me.  The agents at the gate were so nice that i even stood up on my hind legs at the counter and let them pet me as I was given my very own seat, right next to my mommy.  Well, maybe it just happened to be empty but like such a fine hound as myself is going to sit on the floor. C'mon people!

The flight attendants were very nice as was the lady who sat in the other seat in our row.  She had the nerve to bring a sandwich on board and not share, though!  I tried all of my best moves, my 'eye', my nudging of my head under her hand, even a hug, but she wouldn't part with even a bite.  I could tell my mommy relaxed as soon as the plane began to taxi away from the gate and knew that our summer hibernation had officially begun.  As we saw the wasatch mountains out of the window below us, especially Timp (my mommy's favorite place), she got a little smile on her face and I could tell we were going to have a nice couple of months.

I was so excited to see my gamma at the airport although she had to practically carry my mommy and all of our bags to the car.  The weather is lovely here.  It has been great to have all of the windows and doors open, letting me go out back and paint the fence whenever I like - it really is just too white, you know.  Today we woke up and went to one of my favorite parks from last summer, where I ran so fast and chased birds in the 63 degree weather.  We walked home, smelling the fresh sage and went right back to bed.  Three hours later my aunt PK tried to come in and get me but I never leave my mommy's side when she is asleep - I am her keeper, after all. Even that one time she slept 19 hours straight, I wouldn't budge. It's just my job. 

Yep, I think this is going to be a great summer, legally disabled and all.

Here's me on the plane. What?

more later

we made it out of Texas!  just in time for the heat to show up, too.  These past two months have been quite crazy with all of the garage selling, wedding shooting, packing, organizing, throwing out crap, throwing out stuff that I will probably want later... all of that.  I have pushed my little body way too far and drank far too much coke while I was at it. At 4:30 this morning while I was still packing, still cleaning, still editing pics, hurting so badly and trying to just power through it, I so wanted to be out of this game, this constant moving.  One day I will be settled. Moved and not going anywhere and worrying about overstaying my welcome. Home.

 I sat in my mom's house tonight up on a hill, doors and windows open, 65 degrees, it was heaven.  this summer is about undo-ing the damage of my spring, celebrating the progress of my winter, sleeping, learning, planning for the big move this fall, and being excited about every bit of it.  it feels good.

more later

Happy Boss Day!



She was never bossy in the least, but somehow the name has always been hers.  Happy Mother's Day, Boss!  Thanks for taking care of me, still, after all these years.  Woodrow and I love you.

Can I tell you a secret?  sure.  you don't mind. I ran away this past weekend.  on purpose.  I have really been wanting to get down to Austin once before I left for Utah this summer. I did.  I didn't plan it, and I certainly didn't announce it.  This is the problem when you want people to respect to your new limits, they seem to blow up when you occasionally find it necessary to push them.  See!  If you can do that that one time you can certainly do everything else you used to do! Empathy ends now.

It is a vicious cycle - I find myself keeping my outings a secret so as to not inherit judgment for when I need to stay in, for when I almost always need to stay in.  My scale, my internal balance, is mine alone and I'm realizing that no one could ever possibly see it as I do. I think that is true for everyone, though, and we need to learn to trust each other on that one.

Anyhoo - I woke up Saturday (eh, about 10 actually) settled Woodrow with my dad and got in the car.  Can I really be doing this, I kept asking myself. Am I up for this?  No - I wasn't - but I know that I will never be up for anything I want to do and as long as I am not having a really sick day, I am going to have to pick my battles very carefully and only pay for those things that are really important (and oh how I am paying today).  Was the price worth it? YES!  As I was just heading into Austin, there was the most beautiful clouds with sun popping out and I just felt pure joy.  It all felt right again. Yup, this decision, this really scary as hell and hard decision was a right one. 

I hit a few bridal shops and florists, dropped of some business cards and brochures, talked about possible collaborations in the fall, and headed into a record shop to sell some vinyl (i'm purging people and my grandma's Hello Dolly just isn't me).  I walked into Antones, talked to the nicest hippy man for quite some time about my move and our mutual stickin it to the man...thing.  He had no teeth, little money, but was one of the happiest people I had met in a while.  Hell, even the kid at whataburger was precious.  After a few cokes and nearing the point of where I shouldn't be driving anymore I headed west - oh to blessed west Austin, home of my aunt and uncles house. California, west Austin reminds me so much of California. We had a nice dinner and I crashed, no computer to keep me up, no project to distract me, just wonderful sleep  (woodrow free sleep).

I woke up the next morning (that was a hard one) and headed downtown to check out the singles ward.  First clue - they met at the UT institute building.  Young singles ward.  I walked in and noticed a few things right away. Small.  Not a big group. Everyone knows everyone else and well.  Young, most were students and in that whole...phase.  Progressive.  Chicks wearing jeans (hey, at least they are there....good for them).  Happy. I walked into the room and just felt really happy.  It was right, it was right.

Many of you don't know but my life almost started in Austin 12 years ago.  UT was my number 2 school - the one I was going to if I didn't get into BYU.  Somehow, and completely to my shock, I got in and headed to that big blue school in the mountains.  And I'm glad I did.  I met so many wonderful people there.  And some crazy cougars but hey, you win some and lose some. I wonder how different my life would have been had I headed to Austin then, had I headed south on I-35 TOO EARLY.  Let's see how round 2 goes.

Guilt

Something I've been thinking about a lot lately.  My, my we are hard on ourselves.  I was reading something someone in one of my CFS sites had written about the extreme guilt he feels lying in bed 21 hours a day while his sister works 90 hour weeks to support them both. ouch.  yup.

I know we shouldn't feel guilty for...well it all, it isn't our fault, it isn't that we did something to deserve this (although does anyone truly do anything bad enough to deserve their trials), but the guilt is there. The longer we sit, the longer we rest, the longer we feed the tired, the worse the guilt becomes.  I've found that most people with CFS used to be extreme over-achievers, perfectionsists, etc. These were the triatheletes, the med-students, the people that went, went, went, and wondered why everyone else couldn't keep up with their pace.  These are the people that never said no to anyone or anything and therefore never had the experience of letting others down, letting themselves down.  Thus, the first minute they lay down, they pay with the guilt.  Adversely, the first minute they get up, they pay so much more physically.

The solution.  Make your peace with that nonsense and do whatever it is you need to do.  You're allowed.  It's my new slogan.  We are all allowed to go through whatever it is we need to.  With no regrets. No guilt. No judgment. I'm certainly not the judge (thank heavens), so I'm gonna try really hard to not act like it. What a concept.  Here's to all of the hope in the World for a happy future, no matter what it is you're battling right now. You are allowed.

(combining my love of this song and all things canadian). i almost spent way too much money on a pair of tix to this show this summer. I refrained. Austin, baby - save it for Austin.

I'm here.

Have you noticed the writer's block?  Everything that I want to write now comes to me as I'm trying to fall asleep at night.  I beg myself to get up and write it down, but then promise myself that I'll remember it the next day and drift off (ambien free now thank you very much...that stuff is nuts). 

Anyway, lots to say.  Good things.  Happy things.  I'm trying to tie up life as I know it here and brace myself for life from now on.  I was in my last counseling session today looking at the progress in the last 6 months. wow.  uh, yeah - i needed me some counseling.  As I'm turning the big 30 in a few weeks, I feel I am doing it in such a better place, and space, and I'm really grateful for that. I think it would have been really hard to make that transition into my 30's as low and hopeless as I was.

In honor of that...I'm going to post something that I've gone back and forth, back and forth about, deciding whether or not to share it for public consumption.  I wrote this on a really bad day, a really sick day - a day I wanted out. By the end of this particular day, I had had quite a sense of clarity and peace and I officially chose to be positive.  I think this day might have been the first day of the rest of my life.

 I took this into my counselor once and she said it was the most raw thing she'd ever read. Since my primary goal with this is to give a unashamed voice to what this illness is, can be, and could be, I'm going to include it.  without further ado...

Today I chose joy.  Instead of it. I finally got the courage to climb up and stand on top of it.  I am not nearly as tall as it or nearly as mighty, yet little ole me climbed to the very tip top and took my stance.  I am weary of trying to conquer it, trying to crush it, trying to level it underneath my unshakeable will.

For 5 years now, I have sat in silence.  Silently suffering.  Silently denying.  Scared to hope for a cure yet even more scared to admit that there just isn’t one.  Scared to think of it as my partner in this life. 

How did I get here, what have I done to deserve this? 

I have had a reawakening, of sorts.  Something had to give.  In turn, so went my perception of what I thought I was to become; what so many others thought I was to become.  An impossibly high and narrow bar.  Even though that other way is noble, honorable, respectable, impressive even – you owe it nothing if it is not for you.  Perfection was my goal, denial my salvation.  

Working 19 hour days to prove myself to everyone but – myself.  Spreading so thin that the tiniest cracks became gaping holes.  So much caved.  The very best of me, caved. I looked so good on paper, yet was so empty inside.   I was racing towards the finish line yet still running when I got there.

There will undeniably be moments of each day where it will defeat me.  The physical me.   Oh but to me there is just so much more to me.  And so in that hell of pain and weakness, a spark will stay lit, fueling the fire.  This isn’t black and white.  This isn’t an issue of strength.  This is a disease, this is beyond even my control.  It has me whether I like it or not.  I can’t buck up and power through.  I can’t deny.  I know longer have the luxury of hiding this in order to make others appeased.  To keep them from worrying.  I just can’t give that much anymore – honestly, I used that up everything I had years ago. 

I cruise the internet looking for a cure, a reason, even.  Instead I find others likewise afflicted.  Some confused, some angry, some lost, and some already gone.  They have given up – on medicine, on the Gods of it and those who profess its power.  I realize the only relief comes from the peace inside.  The freedom to suffer, the freedom to heal. The freedom from our very lowest versus our very best.

 That I would be good if I went and stayed sick.

Perhaps my cure isn’t going to come in the form of a medical discovery, complete freedom from symptoms, perhaps my cure is simple acceptance and allowance of public suffering. How to use the word, no.  ‘No’ is my only cure available.

I’m still here. I’m good. I’m worth something.  And I deserve as much respect as someone going through a great battle.  Someone fighting a war.  Because I am.  As is everyone. ‘Be kind to everyone you meet for they are fighting a great battle.’ It may be invisible to others yet it is black as night to me.  But wait I see it.  That spark.  That drop of light in the distance.  I think I’ll go there.  I think I’ll stay there from here on out.