Click the picture for the story of Calypso, the Three Legged Green Sea Turtle, and why she's my symbol

Friday, March 30, 2012

How Surgery Went

In my last entry I didn't know when I was going to undergo surgery. As it turned out I went into surgery the next morning (yesterday). I met with surgeons and a plastic surgeon who were all going to be working together, making sure the wound was cleaned out and closed right. The surgery itself didn't take that long, at least it didn't seem like it to me because I was under anesthesia.

Count back from 100. Here goes. 100. 99. 98.. 97... 96........95.......

I woke up feeling sore but generally alright but with three drains in my back. The surgery went well: the surgeons cut into my back, cleaning out the wound all the way down to the spine. The plastic surgeons moved the surrounding skin and muscles over the wound to seal it shut. The three drains keep the area from filling with any fluid. I'm being pumped with multiple types of antibiotics to keep any more infections from forming.

I have three of these bulb drains near the bottom of the incision.

This whole process is mostly inconvenient to my life on the outside world. I'm missing tons of classes which will make my studies that much more challenging. I knew I was going to miss some school but this is more than I had expected. I'm having to cancel my trip to Colorado to visit my friends and witness the birth of my godson. I had saved up for months to pay for this trip. When my best friend in Colorado said she was pregnant I knew I had to be there for her and her new son. I am still going to visit Colorado but I will probably have to delay it until after my finals in May. And last but not least I'm having to drop out of the play put on by Encore Theater Company, our local community theater. The play Sylvia by A.R. Gurney is about a dog and the middle aged couple who adopts her, and the drama that results. I was cast as the slightly insane marriage counselor who suggests shooting the dog. This was the first time I had gotten an onstage part in a play. I regret having to drop out but I don't feel I can do the part justice if I am gone until right before the play is performed besides not feeling physically up to the part.

 
Highlights from another theater company's performance of Sylvia.

Stiff and sore I am more or less okay. I've made some short walks to the bathroom but otherwise have been in bed the whole time. I hope to be up and about before too long with the possibility of doing physical therapy at Kennedy Krieger outpatient. It remains to be seen how soon I recover but I am stuck here in Baltimore until the plastic surgeons can remove the drains in my back. I want to make sure all the fluid is gone before I leave because I want to make sure I'm not back here for surgery any time soon.

Wednesday, March 28, 2012

An Abscess or Why I Hate MRIs

So many of you have heard (likely through my sister's facebook) that I'm in the hospital again. This is true. Unsure of all the details I wanted to wait until I had more information but there are too many people clamoring for info so here goes.

What I do know is that a little over 2 weeks ago a stranger bubble started rising out of the skin on my back, right along the surgical scar from my surgery in December. My scars had all closed weeks ago so I figured I was in the clear but apparently not. Unsure of exactly what we were dealing with we went to see the doctor. He thought it might be an infection so he stuck in a needle to see if he could aspirate (attempt to draw fluid/pus from the bubble). He couldn't get anything out so he said to keep an eye on it and see him again if anything changed.

My bubbles.

And the bubble continued to grow. It started the size of a quarter and continued to grow along the surgical scar. We went to the ER over the weekend when it was clear it was growing with increasing speed. They tried to aspirate it again but this failed.

While we were in Baltimore for a family wedding it became clear that it was growing down and outward and soon would burst if we did nothing. We went into an urgent care center where they tried to aspirate it for a third time, this time hitting pay dirt. Multiple syringes full of pus were drained until she finally called it quits, barely changing the abscess at all. She made it clear that someone needed to clean the whole mess out and she didn't feel comfortable doing it herself.

Your doctor doesn't have to be this comfortable but it helps.

We waited until I got back to North Carolina so that I could see my family practice doctor, who we thought should be able to clean it out in the office. She sent us to a surgeon, who sent me in for multiple tests before before telling me that the abscess was too close to the hardware in my back for his comfort level. He contacted my neurosurgeon who instructed me to return back to Baltimore and he or one of his residents would take care of things.

And back to Baltimore again.

So after driving up to Baltimore again we waited in the ER. The doctor there did an ultrasound of the abscess and found something that worried both him and I: there appeared to be a small channel traveling down to the spine. Because ultrasounds are not very precise I was put on a list for an MRI and admitted to the hospital.

Now an MRI (magnetic resonance imaging) is a big machine that uses a giant spinning magnetic and a computer to create a detailed image of a person's body, layer by layer. I wasn't even sure if I could get an MRI because of all the metal hardware I have in me. I was assured that indeed I could and that I would get my chance the following day.

After 15 hours of fasting I finally was pushed down to the MRI room. The walls looked bowed out in places and bent in at others. I guess this is probably do to the natural shifting of the building but it gave me the image of a giant machine version of magneto. Finally we arrived and I realized I had had an MRI before. I also remembered why exactly I hate MRI's with a burning passion.

A very useful piece of technology that no doubt was invented by the devil.

The last time I had an MRI was when I first got moved to Kennedy Krieger. The MRI is longer than a human body and just as tall. When they slip you into the small hole into the center it is somewhat unnerving. What made it worse was that the first time they put my neck in a plastic cage to make sure I didn't move my head, since they were examining my spine from top to bottom. Add to this the pounding noise and I was downright terrified. I've never been claustrophobic but the feeling of being locked in a giant can of Pringles that's being kicked around at high speed is enough to make anyone afraid of small spaces.

An MRI is like that. Except louder. And way less adorable.

Thankfully this time the area they were scanning was low enough so that I didn't have my head locked in, giving me the option to listen to Pandora.com on their headphones. I chose Green Day and happily jammed out in my head to the beats of Green Day, The Red Hot Chili Peppers, and The Offspring. The experience still wasn't fun but it gave me a little relief from the thoughts of giant magnets spinning at high speed inches from my head.

Since no one informed me of the results I don't know if they found anything. I still have lots of tests ahead of me, with the possibility of a week or more stay, and the guarantee of lots of antibiotics. I'll keep you all updated on if they find anything and how any potential surgeries go. But for now all we can do is wait.

Monday, March 26, 2012

A Reminder Of How Far I've Come

This weekend I went to my cousin's wedding. I had a blast, dressing up in my best duds. I managed to pull of a dashing purple shirt and tie, the cane I walk with now only added to the look. I mentioned to one of my little cousins that having a cane makes you look classy and he asked “But WHY does having a cane make you look classy?” It just does.

All I needed was a top hat.

I got numerous compliments throughout the weekend. On my way to the back of the church I got high fives from different excited family members, some of whom I hadn't seen since I was using the wheelchair full time.

It's harder than you might think to work in jazz hands into a wedding...

It was humbling to see so many congratulating me on my accomplishments. These were the people who let me live in their homes when I was newly injured. These were the people who saw me hours after I had been in my car accident, broken and paralyzed. These were the people who had watched as I went out to college in my wheelchair, only to return home after I realized how physically taxing it would be. These were the people who supported me as I went from wheelchair to full leg brace to ankle brace. These were the people who have urged their friends to pray for me. These were the people who have created a network of people across multiple continents, including hundreds of people, all sending me goodwill and best wishes. I am so lucky to have the support system that I do. If I didn't have all of them behind me I wouldn't have made it this far and that is a fact. This is a journey that can be done alone but is better done with the support of family and sprawling network of well wishers.

If I had a group hug with everyone who's supported me through this I would soon be lost in a huge crowd. I hope one day to hug every single one of you.

I'm continuing on, using the strength that so many people have lent me over the years. One of my aunts said that I exuded a kind of strength and a positive attitude; I don't know if that's true but I guess it must be. What I do know is I have seen myself go from paralyzed at the waist to walking, something that isn't going to be the case of everyone with an injury like mine. I do guarantee that no matter what type of injury you have you are capable of more than you think. A quadriplegic can write a novel with a computer, those without hands can paint with their feet, those without legs can run marathons on prostheses. You may not be able to do everything that you could before but find something that is on the edge of your abilities and do it. Once you accomplish your goal find your limits again and push them. You will surprise yourself and amaze everyone around you.

 We should all be able to dance to the music.
No matter what we look like when we do.

As for me, I'm happy hitting the dance floor at a family wedding. I may look odd but then so does everyone else. After all, a guy with a cane isn't the weirdest dance you will see at a wedding; not by a long shot.

Tuesday, March 6, 2012

Spring is here! That means biking again!

It's starting to warm up here in North Carolina. We regularly get temperatures of 50 degrees, though generally it's much colder in the mornings and evenings. The flowers, sensing the change in season, are beginning to bud and flower. The trees have yet to notice it seems but they will be soon to follow.

This is the perfect weather for biking, which I love to do at least once a week. My sister, the musically talented Helen Exner, performed at benefit concerts to raise money for any adaptive equipment I might need. That money went toward a new handbike, the best form of adaptive biking for someone in my situation.




It has a hand crank that acts as both handlebars and brakes. I'm able to get the exercise I need and the speed I crave all in one. I found out about this through Steve Ackerman, a paraplegic who not only races handbikes but sells them out of his home in Fort Collins, CO. Though he may not be near you, chances are he can ship one to you. You can contact Steve Ackerman at steve@freedomryder.com.

My bike looks like this only painted red instead of green.

Having this cycle has opened up a whole new world to me, one I had almost forgotten existed. For most of college I didn't have a car, getting around by bike instead. I spent countless hours crossing the city to and fro. After my injury I was put on a stim-bike, a machine that combines motor powered movement with electrical stimulation. There has been research suggesting that this type of "Activity Based Rehab" increases function return in some patients. When I was put on the bike I turned on my ipod and daydreamed about biking across town on my way to class, work, or volunteering.

The stim-bike looked very similar to this machine here, though without the arm portion.

Those images haunted me for a long time, with their simplicity, beauty, and the fact that they were beyond my reach for good (or so I thought). When I was finally able to travel the road on my handbike all of that changed; I was fast, I was invincible, I was the MAN! I reconnected with a part of myself that I thought was gone forever.

Though the initial enthusiasm has worn off, I still get excited when it's warm enough to bike. I can bike the trails near my house, seeing parts of the woods previously unexplored. I can get my nature freak on! Whatever it is that you most like to do, chances are it can be adapted for people with various disabilities. Take charge of your life and do what makes you happy!

Sunday, March 4, 2012

On Nerves and Support

My car crash shattered two of the vertebrae in my spine, crushing many of the nerves in my spinal cord. It severed some completely and compressed others. Fortunately, many of them remained intact or I would not be able to walk like I have. Contrary to common knowledge, nerves fibers do regrow (though most brain cells do not); the problem is that while they regrow they have to rewire themselves. Since they do not know where they are supposed to be operating they send out random electrical signals until they figure it out. Depending on the intensity this can feel like a small static shock or can feel as painful as a white hot wire pressed against the skin.


This has occurred every few months since the accident. This nerve pain can either come on after a series of particularly difficult tasks or for no reason at all. I adjust my medications for this onslaught and wait for it to end, since there isn't much else I can do. It sometimes ends with me getting the return of more function yet in the meantime it's mostly just annoying.

Almost done...

The past few days I have been experiencing this type of nerve pain. Though it generally is on the lighter side it makes it so that it's almost impossible to go about my day as normal. I missed class, physical therapy, and even a performance of the play I was helping with (I operated the sound board; fortunately there was someone to cover the job).

Exner... Exner... Exner...

For support I've been turning to my new supportive group of friends, who I met through facebook. There are a surprising number of groups who are devoted to gay disabled individuals. These groups are made up of people with a variety of disabilities as well as the people who support them. They've offered me condolences, hugs, and some practical advice on what to do to deal with nerve pain.


And finally there is my group of friends in the physical world (vs. the virtual one). This group of people have stood by me the past few months, waited when I went slow, helped me when I needed it, and made feel welcome instead of different. There wasn't much they could do to help me deal the pain except keep me company, but that was more than enough. Having that support has been essential through every part of my recovery. In a world that more often than not treats me as different and weird it is amazing to feel almost normal again. Thank you.

 Sitting on the couch with my friends was more beneficial than just about anything else I could have done. Thanks to you fun crazy misfits. I love you guys.