Elvis has Left the Building…

Heading out of the hospital for home, I saved that shirt for the last day...

Or at least I have. I am now officially a free man, home to fend for myself. I left the SCI rehab hospital Wed afternoon with Eddy and Cheryl, made it into Eddy’s beater Toyota truck without falling on my ass and rode off into the sunset. It felt really good to leave the hospital, but also very scary not knowing what was coming up next. I was heading to an apartment that had been just setup that previous weekend to make a new life for myself and I gotta say it’s daunting at first.

We got to the place and I was happy to see that putting Stacy in charge of the move was the correct thing to do, the apartment was setup almost perfectly. Eddy, Cheryl and I made a few tweaks but a big thanks to the entire move-in crew for doing a great job.

After Eddy and Cheryl left Ethan and Stacy came by and stayed the night to babysit me, I was glad for the company not quite knowing what to expect and how well I’d be able to handle everything. I’d practiced the various things I needed to do in the hospital but the setup of everything at home was different and the last thing I needed to do was land on the floor in the bathroom. Luckily it all went fine and I’m getting acclimated. I need a lot more practice with my transfers, but I made it to and from the shower and the bed without issues. It was really nice to sleep in my own bed for a change, without the noise and constant interruption of the hospital. I can’t figure out how anyone gets better sleeping in a hospital…

There are a few things we need to change in the apartment, the biggest are the carpet, it’s like trying to push through mud. Not quite sure yet what we will do with that one. The other is the front door; it has spring-loaded hinges that slam the door shut which makes getting into the place a pain. I wind up using my feet as a battering ram, which while innovative and painless (due to the lack of feeling) is probably not the best thing to do, so we’re gonna try to replace the hinges. Good thing there’s a Lowes across the street.

So today was my first full day at home, made it though ok. Stacy and I continued to unpack and sort out the apartment, trying to find ways to place things so I can get to them. Not only are upper cabinets useless in the kitchen, but the deeper lower cabinets where pots and pans go can be a problem as well. But we’ve been figuring it out slowly.

I don’t have a lot of deep philosophical insights today or major things to talk about, it’s just time to try and figure out how to live my life in a chair all day. It’s amazing how much you take for granted when you can walk around, but in a chair the whole world can seem like it was setup just to mess with you on purpose. But enough whining about that, need to push on. I’m sure I’ll have more updates next week as I settle in.

Half the Trouble is in the Trying…

I think this is pretty self-explanatory...

So another week of rehab almost gone by, release date is coming up fast. They say I’m making progress but of course it doesn’t always seem like it. But I feel a bit stronger, my transfers to and from the chair to the bed, toilet, etc. are getting better, graduated off the slide board very quickly and 9 times out of 10 I can clear the transfer first time. But that tenth time when I get it wrong can get real ugly…

They did a ‘procedure’ Wednesday to take out an intravenous blood clot filter that was stuck into one of my bigger veins in my leg 5 months ago during my trauma surgery. Apparently you’re supposed to take them out with 4-6 weeks of install, guess that one slipped through the cracks. They put me into a radiology operating room and had to use x-rays and ultrasounds and stuff to find the thing, then used a whole bunch of wires and stuff to go try and get it. They did all this though a whole in my neck. Medicine is really weird. Today my neck feels like I got hit by a baseball bat so they must have been wrenching on it pretty good.

I could do with a few years of no more procedures… ;-)

We went on our big Saturday ‘outing’ today, I got to pick where we went so I chose Valley Fair Mall, the biggest most crowded mall in the area. I figured let’s jump into the deep end, if I can manage a big crowded place like that, can manage a lot of other places. Went into a few stores to pretend to shop, some were more accessible than others, the Apple store was a real mess, but that’s a mess even on foot. Some of the others were very hesitant in the stores and moving through the crowd but I just figured “the hell with it, I deserve to be here just like the rest of the normal folks” so I just acted like I was on foot. A few people stared at me in the chair but not very many, I either smiled at them or gave them the angry white guy look, both were effective. Luckily I don’t do malls very much anyway, but if I did I’d probably grab a friend to go with mostly to help get stuff that’s too high to reach. Definitely won’t be able to try on pants to see if they fit, that’s a 20 minute exercise in frustration in a chair, all the while hoping you don’t strain too much and pee/poop. That would be an interesting litte episode in the dressing rooms at Nordstroms.

Tuesday we did a dinner night where a few of us cooked a full meal in the kitchen they have here for us to try and use and get familiar with doing household tasks. That was ok, but the more normal they tried to make us feel the more abnormal we really felt. I guess that’s part of the adjustment process. But I still made a really bitchen angel hair pasta with basil tomato sauce...

My new apartment is now full of some of my stuff thanks to Ethan and Stacy Nagel, Eddy Gonzalez and Cheryl, Jeff Gruetter and Shahin and Michelle Pirooz, all very good friends who I owe more than I can repay through this ordeal. Thanks very much guys, can’t even begin to tell you how much you all mean to me.

Attitude is getting a bit better, only pooped my pants once this week so that’s progress and definitely helps the attitude, and that episode was mostly due to the drugs that gave me Wednesday. Getting stronger as well but the shoulders are taking a beating, esp. my right shoulder which is already sketchy due to surgery 3 years ago. Trying very hard to ‘move out of the middle’, as I wrote about last time. Finding the willingness to even try is a battle at times, it seems so daunting to commit to a future in a chair when you’re barely able to do anything right and all day you worry about basic body functions. But the willingness is coming. Half the effort is in the trying.

Five more days and I’m outta here and in my own place finally after almost 6 months of being in one institution or another. Stay tuned for that fun … ;-)

This One's for You...

Scary looking dude, what's up with those socks?

First whole week at rehab done. Making some progress, up to 100 lbs on the bench press machine, can transfer myself from the bed to the wheelchair without assistance, etc. Doesn’t feel like much though in the face of what lies ahead.

Powerlessness. It’s a big scary word, one that shadows us our entire lives. When we’re born we are as powerless as can be, and spend our early years gaining control over our bodies, and later as we mature, over ourselves. As we enter adulthood we begin the process of creating a life that allows us to assert what we think is power over our environment and for some power over others. We spend most of our lives trying to maintain this illusion, but life and the world around us does not always cooperate and we are always reminded of how powerless we really are over things external to us. But that’s ok because it’s external to us, ‘factors beyond our control’ and such. We write ‘force majeure’ clauses into contracts, call them ‘acts of God’ or nature, fate, karma, whatever fits your paradigm. So we go through life getting into car accidents, having houses burn down, ballgames rained out and for the most part find solace in the knowledge that so many things are beyond our control, and pretty much everyone is in the same boat.

But it’s very different when you don’t have control over yourself. We always assume that despite what goes on external to us, we have control over ourselves, and due to that control we can navigate through whatever life throws at us. Well I don’t have that anymore and it’s really messing with me. I’m no longer who I was, at least at a functional level, and it is really a hard thing to adjust to, much less accept. I know longer have control over my legs, and as such am now constrained by what I can and cannot do from a chair. And I’m not talking about stuff like riding a motorcycle or climbing Mount Everest. I’m talking the day-to-day stuff that makes a person who they are. I see someone drop something and my instinct is to help pick it up. Can’t really do that now. Can’t hold open doors for people, can’t offer to help my friend move (not sure I actually will miss that part ;-), you get the idea.

You lose control over your bowels and bladder. Then the doc gives you pills to clean you out because he says you’re backed up. Great, now I have diarrhea and no bowel control. Try that for a couple of days and see what it does to your sense of self and your dignity.

I don’t want to climb Mount Everest. I just want to be able to get into the laundry room to wash my clothes but I can’t because the door is too heavy and once I’m in the door shuts and I get stuck in there. I want to be able to go to a friends house for dinner but not have to plan out how and when I’m going to do my bowel routine at someone else’s house, something that can take up to an hour to do correctly I’m told (I’m still learning).

There’s a lot to rant about with this condition. I’m in ranting mode right now, as you may have guessed. There are a couple of others here with the same type of injury and we’re all in rant mode, except the one who won’t come out of his room, he’s on suicide watch. We’re all trying to ‘adjust to our situation’. It ain’t easy. But there’s not much choice in the matter either. You either adjust to this or you give up. Half measures will get you nowhere. For a while you can find yourself lost in the middle, not committed to going the distance and working through it, not committed to grabbing the shotgun and getting it over with. It’s a bad place to be. I’m working my way out of that place right now. I’m leaning heavily towards going the distance by the way. But it’s amazing how had it is to make that commitment, you hang on to door number 2 (the shotgun) like a life preserver or something. It’s very strange, but I think it’s due to the uniqueness of this situation. Every time in my life prior to this, whenever I was hurt or injured, I knew if I did what I was told, I would be back to where I was before, or very close. But with this, no matter how hard I try in physical therapy, no matter how much I do what they tell me, I’ll still be paralyzed. I will be in an unacceptable situation. It’s very hard to focus yourself and strive to get what essentially seems to you like a place you don’t want to go. Sure it might get better, you get stronger, you figure out how to get into that laundry room without getting trapped, but you’re still in a chair living a life you’d never wish on anyone.

You’re not actively wishing for death, but you’re unwilling to accept life on the new terms it’s being offered to you. It’s a very strange place to be.
The power I do have is in my mind and my heart, and I’m using all I have and then some.

Like many of you I’ve had to dig deep for the strength to get through a tough situation, but until now I’ve never dug deep and come up empty. I’ve had a few days like that here, and will probably have a few more. I’m still digging though. I told the psychologist today that the main thing driving me right now isn’t me, it’s my friends, it’s knowing that you all are out there, pushing for me, wanting the best for me, and how can I give up on that? Eventually I’ll need to do this for myself, but for now, this one’s for you.

Thanks

A New Kind of Difficult

Me, or at least how I feel today... ;-)

Sorry for the delay, been busy getting my life all shaken up. Thursday I got the word that I would be transferring to Santa Clara Valley Medical Center to start my acute spinal cord injury rehab. The move was a bit rushed, and I’m having a hard time adjusting to my new digs on several levels.

First and foremost is the change from a small intimate home-type setting at Care Meridian to a ward in a county hospital, all institutional and stuff. I really wanted to take a moment to acknowledge the folks at Care Meridian, it was so hard to leave there, I bonded pretty strongly with most of the staff and 2-3 especially. Spending 4 months in bed was never going to be easy but they made it much more bearable than it could have been. I’ve never had to be so powerless and vulnerable in my life and they created a safe place for me to work through not only a lot of physical healing but the mental and emotional adjustments that come along with such a radical change in a person’s life when they have an injury like this. So to Colby, Claudia, Eleanor, Anneliese and the rest of the gang there, if you’re reading this I offer you my heartfelt thanks for everything you did for me.

Now I’m at VMC doing the rehab thing. I need to adjust to a new schedule, the nursing staff here is a lot less engaged and to be honest seems lost some times. I guess I just got used to a level of structure that now I find very much lacking here. I’m going to chat with the head nurse and see what if anything we can do to get things more on track. Maybe it’s just because I’m new here and they haven’t gotten used to me yet. We’ll see but if I need to remind anyone about my meds schedule again I might lose it.

Rehab itself is ok. The therapists are very nice and encouraging, and for the most part the work is hard but it feels good to be doing something. My body is so far out of shape from being in bed for 18 weeks it’s just ridiculous. My core muscles are so weak I have to prop myself up against the table when I eat in the wheel chair. I can hear my grandma’s voice in the back of my head, “elbows off the table!”. Sorry grandma but no can do.

I’m having a rough time overall with being in the chair. Sisyphus is what comes to mind, hence the image above. I just can’t believe how much harder it is to do pretty much anything when you are in this stupid chair. Some of it is my lack of strength or endurance, some of it is just because it’s new and I haven’t mastered the techniques, and it should get somewhat easier as time goes by. I know all this intellectually. However no matter how much easier it gets it will still suck compared to life before, and that’s what I’m struggling with currently. This is a level of constant, everyday difficulty that I’m having a hard time getting ok with, since I don’t really have an alternative. This isn’t like a new sport or hobby that I can say “naw, that was too hard, I’ll try something else”. There is no “something else”, this is how it’s going to be. Yes it will get easier but it will never be as it was, and I guess maybe I’m starting to really “mourn the loss” of living able-bodied like they told me I would.

Here’s the thing. I know I can figure it out, I know a lot of other people do it and from what I’ve seen if they can do it I can too. That’s not the issue, the “can I do it” part. The issue is do I want to do it. Now no, I ain’t all suicidal just yet so everyone can take a breath. But for this to work I need to want to do this, and to be honest right now that part just isn’t there. I’m not excited to be here, not excited to be up and in a chair, especially not excited at the fact that I need to start doing my own bowel management (I’ll leave that visual up to you, Google it if you are confused). I’m not sure what I need to do to get ok with all this, now that it’s really up and in my face. It was a lot easier to have a good attitude when I was in bed and being taken care of and the realities were off in the distance. Now they are up and in my face and scaring me a bit knowing that there is no option 2.

So today is struggle day, as will be tomorrow, and the next. The struggles will hopefully lessen, the difficulties diminish and my adjustment will hopefully continue for the better. I need to get my head right, I’ll keep you posted…

Take care everyone and thanlk you very much for all your support.

Easier Said than Done…

Really crappy photo of me sitting up, damn iPhone...

Got a lot of feedback about last week’s blog entry, seems to have caught a few folks off guard, heard comments like “harsh”, “hard-edged”, and my favorite, “it seems like maybe you’re not as upbeat as before…”.

Uh-huh, yea, true to all of the above. And more. Most folks got it however, since the point was to just let it fly as “raw footage” of the documentary that is my life. Hopefully not only will you see what I’m dealing with so as to better connect with me, but it may help you connect with anyone who is dealing with a major health crisis, not just a spinal cord injury. It may even resonate with something you are or have gone through yourself. As my very good friend Kirstin Burke put it:

“Most of us go through life trying to put some kind of whitewash on some part of our life that we can't face, or don't want to deal with - where if we could be honest, who knows what effects it would have…”

It’s one thing to talk about ‘playing the cards you’re dealt’ but it’s quite another to not only do it, but to lay those cards on the table for all to see, especially if it’s a hand full of rags. So I’m going to try to be as honest with you all as possible, and hopefully it will bring us a bit closer and maybe help you in your life as well. As Kirstin said, “Who knows what effects it may have” for you or someone you know, or maybe haven’t even met yet?

Ok enough pontificating; let’s get to the good stuff. I finally sat upright for the first time in 17 weeks. 17 weeks 4 days to be exact. The crappy picture above was taken by one of the therapists, wish it was better quality. This was sooo friggin hard to do I couldn’t believe it. At first you get very dizzy but luckily due to the work we’ve been doing on the tilt table I got past that and then had to figure out how to balance myself with trunk muscles that have been doing jack squat for the last 17 weeks. Took 10 minutes before I could even hold myself up using my hands on the bed without the therapist steadying me! Note the death grip on the bed in the pic. Eventually I got to where I could hold steady (sort of) with no hands.

Lasted about 25 minutes like this, we even did a few exercises, played ‘paddy-cake’, etc. I’ve almost completely regressed to 3 years old. ;-) I thought it was a complete washout because all I have to compare as a reference point is how I was before the accident, but the therapists said it was a smashing success and I did much better than they expected. I’ll go with their assessment for now but it is amazing how far I am from where I was before the accident. We’ll keep building on this though and hopefully gains will come quickly.

Other good news, I met with a lady from the rehab center today and the process of transferring me to rehab has started, the wound is almost closed, it’s down to 1 cm deep and the hole is much smaller so hopefully by this time next week it’s all gone. Going to rehab is full of mixed emotions, while it sucks to be stuck in a bed 24 hours a day for 17 weeks it’s in a very safe and friendly place, every step I take closer to going home is both scary and thrilling. But again we’re on the ‘one day at a time’ program so for now my focus is on the next day or so only.

Also I now have a place to live that’s not a friend’s couch, with lots of cool help from Stacy Nagel doing the footwork I now have a one bedroom apartment in Sunnyvale. I lived in this complex before so I’m pretty familiar with the area, should help smooth the transition back to the real world. My house is in escrow, we’re still waiting on the bank for final approval then that’s done.

Next is line up a car, get to rehab, learn all that crippled person stuff and then get home to my own bed and my life, whatever is left of it.

More info as I get it, y’all take care out there.

Today is not Tomorrow

Actual copy of my latest x-rays (sort of...)

That’s my new mantra, “today is not tomorrow”. It’s kinda like that disclaimer you see on stock broker ads, “past performance is not indicative of future performance”. Only for me, and many other SCI folks we are trying to avoid what happened today or yesterday or last week, we want tomorrow to be better.

It’s a game of waiting and hoping for outcomes that for the most part are completely beyond your control. Getting a nerve to wake up is not something you can do; they do what they will whenever they decide to do so, if at all. Nerve pain is ever-present, and plays on your optimism by leading you to believe that it’s a good sign, that something is going on. Sometimes they wake up half-way and you get a a whole day’s worth of on/off pain when they misfire and fool you into hoping that once the nerve gets its act together you’ll have a new muscle to work on.

If you’re lucky the pain was worth it and a new muscle innervates and then you get to spend hours trying to get it to anything resembling movement. When you are rewarded with that you get a great feeling that yes, I might walk again. Later you realize it’s one of several dozen muscles that you need, and why aren’t those doing anything? You fall back down to earth and remember that there are a lot of folks out there with only partial recovery, often of no use to them at all. Like trying to play Scrabble but all the vowels are missing. Works if you’re from the Czech Republic, otherwise extremely frustrating.

So you tell yourself that what it looks like today isn’t what it could look like tomorrow. You try to build up hope, that hope that all your friends tell you not to lose but despite their best intentions and efforts, only you can actually do the refill when the “hope” tank runs low. So you dig, some days deeper than others.

Same with your bowel and bladder. Maybe tomorrow you’ll get it right and not have an accident. Same with a number of things that you never thought you’d ever have to deal with before you became injured. I’m a guy, I’ve never in my life worried about bladder infections, now I need to worry about them every day. How messed up is that?

You don’t want to let yourself down, don’t want to let down your friends and family. You know you’re a strong person, you’ve handled some really heavy loads before. You can handle anything that gets thrown at you. But somehow this is different, because there’s no end to it, no light at the end of the tunnel, no guarantees that if you stay strong and you put in 100% effort your life will look like it did before. In fact most likely you’ll be dealing with the same nonsense for the rest of your life. The uncertainty slowly unraveled the threads that hold your resolve together.

Some days you wonder what’s the point. To be or not to be, that is the question. Does this situation qualify as outrageous fortune? Can I get a waiver for the rest of my life and just check out? No one around with sufficient authority to ask, oh well, if it’s a good idea today it will be a better idea tomorrow. Remember today is not tomorrow, right? Whatever, is it dinner yet? Maybe it’s taco night, that would be worth staying alive for another day.

A lua esta bailando na Quintana dos mortos. But so far still dancing alone. ($10 if you know where that came from ;-).

You start listening to songs that remind you of better times, you start to lose yourself in the past, (a past that sometimes is better in the remembering than the reality) and then catch yourself thinking that your future will never be as good as your past. It’s another mind-trap that is all too easy to fall into.

So in the end, you keep plugging away and hanging onto that one simple phrase, “today is not tomorrow”. Had a bad day today, that’s ok because tomorrow will hopefully be different. Keep swinging, never give up. I must have watched “Cool Hand Luke” one time too many. ;-)

I’m up to 15 lb dumbbells and asking for 20 pounders, they’re afraid I’ll drop them on my head but I told them I’ll drop them on their heads if I don’t get them. Gotta keep moving forward. I seem to be making more muscles twitch, makes more nerve pain when I do it but the results are promising. Maybe…

We just finished the Friday wound measurement and we've hit the 2 cm mark, so now I get to start sitting up finally and even should be able to hop into a chair. Far Out.

Take care everyone and stay tuned, this might get interesting…

Breathing and Pushing

Actual photo of me with no skin, showing the cool spot.
This will make more sense as you read on...

So the theme for today is breathing and pushing. Because I've been doing a bunch of that lately, and I'm not alone.

So first the really cool news, for those of you you who know Shahin and Michelle, or even for those who don't, they finally gave birth to their second child yesterday evening. The baby was over 2 weeks overdue but yesterday it finally happened, and after lots of breathing and pushing Michelle popped out a beautiful baby girl. Can't tell you how happy I am for the both of you.

I of course am not pregnant and hope to never be, (probably safe bet that one...) but still have been doing a lot of breathing and pushing of my own, working with my physical therapist every day. We go through a bunch of exercises with my legs, both range of motion exercises and also exercises to see if we can detect or induce any muscle activity. It's like pushing as hard as you can against a solid brick wall. It really wears you out but you don't see or feel any movement.

Until now...

So we've got muscle twitching in the left leg, up in the quads. This is a very good sign and we've working hard every day to coax more and more out of it. There are no guarantees that we'll get more, but my hope meter just got a big boost.

The downside is the nerve pain is also jumping up, but hopefully that's a sign that nerves are trying to wake up. Nerves really suck when they don't work right, so hopefully we get this sorted sooner than later.

More info soon...