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...

The Future Looks, Kinda Blank...

Actual picture of a blank slate

So getting better after my excursion into sepsis land, strength is coming back, able to do the same level of weight workout as before, and getting a handle on the new pee removal process. It's great stuff if you're a data junkie, you sit and fixate on how much you drink and then how much you pee. I'm sure there's some mathematical model that could be created to predict future output based on current input, I'll have to see if I can come up with that, I'm sure it would be a boon to the medical community and might even snag me a Nobel prize.

We're getting closer to me leaving Care Meridian and finally heading to Valley Med for rehab, the wound is down to only ~ 3.5 centimeters deep, from the 15 cm it was when I got here. Seems that without my body having to fight a bunch of evil kooties in my bladder it can concentrate more on filling in the wound. That's a good thing. When it's going well it heals up about 1-2 cm a week.

Started a new thing this week, there is a device called a "tilt table" here, imagine the table that they put Frankenstein's monster on, you lay on it, they strap you down then it tilts you up from horizontal to vertical. It has a ledge for your feet, so you don't slide down. The idea is to do a couple of things, one is to get you slowly acclimated to being vertical, the other to help get weight on your feet and leg bones to stave off osteoporosis and help with blood flow. The acclimation is needed because after so long in bed my equilibrium has reoriented itself and needs to be reset. This takes time, otherwise if you try to go completely vertical too soon, you pass out due to low blood pressure, since paralyzed legs can no longer help pump the blood back up from the legs to the heart and brain. I did ok until we got to 60 degrees, lasted 20 minutes then almost passed out so they lowered me back to flat very quickly. They said that this was normal, and that I actually did well lasting 20 minutes, so we'll keep trying until I can handle 90 degrees, which is needed if I'm going to try and sit in a wheel chair.

Why does the future look blank? Glad you asked. I came to a realization last week that I was not going to get my life back. For weeks I would sit and think about when I could get my old life back. But it ain't gonna happen. In fact most of what was my life is either gone or on it's way out. My house, truck, hobbies, and even my position where I work. I realized that am looking at a whole new life I'm going to have to build almost from scratch. New place to live, new job ( but at the same company, the CEO their has been great and very accommodating through this whole process, a testament to his character. We'll be creating a new position for me when I get back.) , new hobbies and things to find enjoyment in, etc. Even those things that are still there will be dealt with differently since I will be in a wheel chair. Many things will be harder, take longer to do, getting dressed for example.

The only thing that remains constant and will still be as it was before are my friends and family, and that's a good thing since they are the most important. So there will be a lot of rebuilding and creating new stuff. I'm looking at a very blank slate, which is one the one hand very daunting, on the other offers a lot of opportunities. My job right now is to believe in the possibilities and not allow myself to become overwhelmed by the fact that everything is so unknown and open-ended.

Are you strong enough to be weak for a while?

My very good friend Ethan Nagel asked me that the other day. For those who don't know him, Ethan is one of the smartest guys I know, and gifted with a keen ability to read people very quickly and zoom in on what is going on behind the scenes. He's also very good a pulling nuggets of wisdom out of his ass, such as the little bit I've used as the title for this entry.

I've been lucky to have people like Ethan in my life for a while now, as well as many others, and have also been smart enough (some times accidentally so)to actually let them know who I am, even the deep down parts that you normally don't always let show. This combination of Ethan's insightfulness and my willingness to let my guard down to friends like Ethan, Shahin and others is what is keeping me sane right now as I struggle with the mental and emotional issues that have tagged along for the ride. It's much harder than I ever thought it would be.

It's not my nature to be 'weak', to ask for or even allow others to help me. I've always been the strong one that others turn to. That all vanished when I woke up in the ICU and realized I would need to rely on a whole bunch of folks for almost everything for an indeterminate amount of time. It's not that I don't want to do things but due to my current situation, being stuck in bed I just can't, and it drives me nuts.

Now just after getting back from my recent hospital stay my mental state was a bit shaky and I was really having a hard time with all of this. A long phone call with Shahin got me stabilized a bit, and then a similar chat with Ethan, where he asked me that simple question, "are you strong enough to be weak for a while?". Of course by 'weak' what he meant was am I able to allow others to do for me until I can do for myself, and I have to say it is a very hard thing to do. But I am doing it, hating every minute but doing it.

Getting my strength back finally from the septic attack thing, started back to lifting the 10 lb dumbells, they got a lot heavier while I was gone it seems... ;-)

Have fun...