Spinal Cord Injury Is a Bitch - Part 1: Hope & Faith

Ok, well obviously, spinal cord injury is a bitch. But there's so much more to it that people don't realize than just not being able to walk. As if that's not enough, right? If you're reading my little blog for the first time, my husband, Shawn, has been recovering from paralysis since January 23. In fact, he was diagnosed as a quadriplegic on January 23. The details all start here. And while technically Shawn didn't have a spinal cord injury, he was being treated as such since his spinal cord had been affected by the infection.

In the days following his surgery and his entry into in-patient rehab, we just wanted to know what's gonna happen here? Does someone recover fully from a spinal epidural abscess that caused paralysis? What are the chances he'll walk again? Shit, what are the chances he'll be able to just sit up again? What else can we expect?

The hospital people gave us some books to read and highly suggested that we read them. The books were helpful but are written without hope or possibility. They are written for the reality of paralysis and the side effects of it. In fact, I'm sure one of those books said, if you don't have movement below the injury site by such and such time, like within a week or so, that's pretty much it. Shawn didn't move his toes until 6 weeks after surgery. Even the surgeon, Dr. White, was concerned about this. And mind you, he NEVER gave us any kind of chances or percentages for anything.

So, of course, in the age of the internet, I spent hours googling spinal epidural abscess and paralysis, recovery from paralysis, etc... just to have something to give a glimmer of hope that maybe, just maybe my husband would recover, even just a little. And I didn't really come up with jack. Mostly there are medical abstracts and papers that throw around a lot of terms that I don't understand. Even with what, hundreds of thousands of blogs, maybe millions of blogs out there, I couldn't find anything to offer any hope. So, we just had to have faith that what was happening was happening for a reason and that it would all work out the way it was supposed to.

So how do you live like that? How do you get through each day? Well, you get through it by living in the present moment. Doing what you have to do right then and not getting wrapped up in the future, in what might be. And by being grateful for every tiny little thing, even the experience itself because ultimately it's a lesson, a teacher.

But I just wanted something, someone else's experience to draw from. And I couldn't find anything. So that's why I'm writing this. So I can tag the shit out of it and the next person that is sitting there googling spinal epidural abscess and paralysis will hopefully have something to give them some hope. Because Shawn is walking now. The wheelchair is in storage and will be donated to someone that needs it. The walkers have been returned to their owners who let us borrow them. And this is where he is 10 months since his initial onset of symptoms.

Part 2 of this, when I get around to writing it, will be about all the other "stuff" that happens besides not being able to walk.

My Best Photo Ever!

This is my best photo ever. My husband standing and playing his bass.

Friday Gig Part 2

Hubby playing at Jaxx, Friday evening. While the show was kind of lame for the fellas, very small crowd, it was good for me to take pics. I could get up close and not have to bump into people. Plus it was a night out with hubby. Almost a normal life. We're getting there.

Bittersweet

Life is full of bittersweet moments. We've been especially sensitive to them this year.

Yesterday was a bittersweet day. It was the annual Barberpaloozefest, a big, outdoor party with a lot of bands. Shawn's band, Hot Buttered Elvis, always plays this gig because the singer is the creator of Barberpaloozafest.

The sweet part was that Shawn got up and played a set. Not just one song but a set of 6 or 7 songs. This was six months and one day from the day he had surgery. Six months and one day ago he was paralyzed and considered a quadriplegic. He wasn't sure if he would ever play again.

That thought was difficult for both of us. Shawn has played in bands for over 25 years. To not be able to do that again would take away a piece of who he is. Shawn playing has been a huge part of our relationship. It's a social activity for us and frankly I love watching my husband play. It's hot. Thankfully, it's not gone forever.

The bitter part is that in spite of being able to play, Shawn still can't be who he is on stage. There was concern for losing balance and falling and he couldn't rock out. He's always been one to move, jump, bang head, etc... and now he can only balance on a stool. It was hard to watch in that respect. It also was a reminder of just how far there is to go on this journey.

But ultimately it's the sweet part that rules. It always is. Shawn will rock out again and I'll be there to capture the moment.

Independence

Happy Independence Day! I wasn't thinking the other day when I made a post about fireworks. Duh ... 4th of July is in a few days and that's the perfect photo for the post I'm doing. Oh, well, here's another. Next time I'm definitely using a tripod.

So on 4th of July we celebrate the independence of America. We party and shoot off fireworks. It's tradition. It's for our nation's freedom. And there are a lot of nations out there without the same freedoms as ours. Where you can't gather to protest. Where you can't say what's on your mind. Where you're not safe. Where your life is at the mercy of a lunatic. Because of where you live. I think we all know this.

But there's also our personal independence that we should celebrate and be grateful for. Do we ever really think about that? What it would be like to be dependent? From a few months after we are born, we begin asserting our independence. Then by the time we are mobile, we're ready to go. Be free of the binds that tie us down, playpens, cribs, etc... As we get older we want to go off by ourselves, ride our bikes across town, go out with our friends alone, make our own decisions.

After spending your childhood gaining your independence and then reveling in it as an adult, what would happen if suddenly you lost it? What would you do if one day you were dependent on someone for everything? What would you do if you couldn't do what you want when you want? Like, go upstairs and get yourself a beer. Or, worse than that, get up and go to the bathroom. As much as we don't want this, I think we all know that this may happen when we are old. Like 90 old. And some of us spend our youth trying to make sure this won't happen.

But what if it happens to you when you're 43? When you're in the prime of your life? Shawn and I can speak to this from experience. On January 23 he became 100% dependent on me or at least someone for everything. E.V.E.R.Y.T.H.I.N.G.

It's only in looking back that I can realize how bad it was. At the time I was just going and doing and functioning without thinking. Thinking might have brought me down. I can't imagine what was going through Shawn's mind. He couldn't move. He was paralyzed. His first step of independence came when he was able to feed himself with the help of some tools to go on his utensils. That was within a week.

By the time he came home in March he still was VERY dependent on me. While he could get himself sitting in bed, he needed my help to be propped up. He needed my help to get in and out of the wheelchair. He needed my help to get dressed. He needed my help to go to the bathroom and take a shower. And so much of what I did or wanted to do was dependent on him. What time I could go to bed was a big one.

But as time has passed Shawn in regaining his strength also regained his mobility and thus his independence. Funny how our mobility and our independence are so intimately tied together.
Nearly 6 months later the only thing Shawn is dependent on me is bringing him stuff. We call it the "List of Demands." Soon he will be able to make it upstairs easily and get himself a snack or beer. Soon he will be walking again. Soon he will be driving again. Soon he will be lugging again.

So this Independence Day, take a moment and honor your personal freedoms, like being able to go to the bathroom by yourself. I know I am.

January 23, 2010

My life, my husband's life and our lives together will forever be defined by before January 23, 2010 and after January 23, 2010. Before January 23, 2010 my husband Shawn was a strong, virile man. After January 23, 2010, he is paralyzed from the chest down. There I said it. Well, I typed it. I don't think I've actually said it out loud.

I don't really even know where to begin. And I don't really know if anyone will see this. Shawn was one of maybe a handful of people that read my little photo blog over the last year. And my other friends that did follow it already know what's happened. I haven't been here in 10 days and there's no photo for today. I haven't even touched my camera in 10 days.

On January 23 we found out my wonderful, precious husband had a staph infection in his cervical spine. He had to have emergency surgery to remove the infection from discs, bone and his spinal column. This has left him in the state he is in now, which hopefully is only temporary. You can read all about it here, www.caringbridge.org/visit/shawnsharifi. And that's why I haven't been here. I've been over there updating and keeping hundreds of people updated on what's happening.

To say that we are stunned is an understatement. To say that it's surreal is an understatement. We both think it's a dream and everyday we're like wait, why haven't we woken up yet. I don't even know that it's actually hit me yet. A friend of mine told me the other day, this is a marathon not a sprint. And I was sprinting for about 4 days solid. I'm certain I lost about 8 to 10 pounds in matter of days. And in that sprint I'm not sure that I've allowed it to hit me. I just don't know.

In a matter of a day, everything has changed. Everything. Even the surgeon, before he went to operate on my husband's spine for 3 1/2 hours said to me, your life is changed. And I don't even know where or how to start in processing everything. All I do know is that I have to be strong and persevere so that Shawn can have a 100% recovery. And thankfully I have the power and love of amazing people supporting me and Shawn.

So, there's no photo today. And I really need to change the tag line now:) But it's still Shining Lotus, rising out of the muck. To reach my highest potential. Maybe not so much now by taking pictures but by the inspiration of my amazing husband.