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Showing posts with label Story of Hope. Show all posts
Showing posts with label Story of Hope. Show all posts

Sunday, February 10, 2013

My Story As Of Today: From Wheelchair To Walking

I was 20 at the time of my accident. I've moved around a bit in my lifetime. My dad worked in the army and then the Public Health Service. We moved everywhere from West Virginia, Germany, Wisconsin, to Seattle. Not strongly connected to one place very closely, I was going to college at Colorado State while my parents lived in North Carolina. Minus a few crazy events here and there I had a pretty boring childhood and early adulthood. I had never even had a broken bone.

Me pretending I know what I'm doing on a longboard.

After spending Christmas with friends, I flew out to spend New Years with my family. We were up in Maryland where much of my extended family lives.

THE ACCIDENT - December 29th, 2009.
The plan was to spend a few days in the Baltimore area then drive home to North Carolina the day of the 29th. I've always hated long car rides, so I always tried to sleep through them. I figured I'd be sleeping the entire ride to North Carolina, so I spent the entire night before my accident playing video games on my little cousin's XBOX (Lego Indiana Jones). I was asleep practically before we left my Aunt and Uncle's driveway. I did wake-up momentarily to hug my older sister as we dropped her off at the airport but otherwise I was down for the count.

How I spent the last night before the accident. I finished the entire game about 30 minutes before everyone woke up.

I slept in the back seat up against the door with my seat-belt on. From what I'm told, my Dad was driving on the freeway when he saw the car ahead of him stop suddenly. My dad slammed on the breaks and our car started spinning wildly out of control. Our car slammed into the bumper of a neighboring truck.

My Mom was in the front seat and had been knocked unconscious. My dad, awake and unharmed, told me later that I was screaming my head off; I have no memory of this. They shipped my off to Shock Trauma Center at the University of Maryland. I had two of my vertebrae (L1 and L2) completely shattered, broke both arms, and had lots of other internal damage. They put two stabilizing rods on either side of my spine but the surgeons felt it was better not do any surgery that could damage potentially intact nerves. The bones in my arms were set and a metal rod was placed in each.

I broke L1 and L2(top of Lumbar curve) but my injury level is considered T10(bottom of Thoracic curve) since that was the initial line of what I could move.

I woke up not able to move anything below the level of my belly button. The next few days were a morphine haze interrupted by a swirl of visiting family. I was sort of emotionally numb, staying upbeat the entire time. I just kept repeating that I wasn't going to be stuck using a wheelchair. They moved me out of there and into a rehab hospital. I starting to learn about the realities of my new life and what it would be like to move and live in a wheelchair. 

I eventually went through all 5 stages of grief and loss over my legs. I felt that the part of my life where I walked had died.

It was about 6 days after the accident when I finally broke down. I wasn't able to wheel myself around with both arms in slings, I couldn't move very well, couldn't even control when I shit, and didn't know what I would do. It all hit like a ton of bricks.

NURSING HOME (rebreaking my right arm)
About a week into my new rehab I rolled on my right arm in therapy and rebroke it. My surgeons, extremely irritated with me, said that I wasn't allowed to continue therapy there for at least a month and advised me to go to a nursing home.

In the nursing home after I rebroke my arm.

Though some of my darkest moments were in that nursing home, this was the place that I regained movement in my legs. After a month not moving anything I wiggled my right big toe. The next day I wiggled my left big toe. Progress slowed for awhile but over the next few weeks I regained good chunks of my right leg back.

KENNEDY KRIEGER
During my stay at the nursing home we heard about the spine program at Kennedy Krieger Institute. An offshoot of Johns Hopkins, the hospital had a reputation for significantly improving function after spinal cord injuries. A few people warned me, including my physical therapist at the nursing home, that they felt Kennedy Krieger made too many promises. I was hesitant but after the dismal conditions at the rehab hospital and the nursing home I felt that anything was worth a shot.

The staff of KKI helped put my mind at ease and helped push me forward. Shown here trying out e-stim on my leg. 

It turned out to be better than I could have ever hoped. Primarily a kids hospital, the spine program's inpatient wing will take you if you are under 21. Full of energy and excitement, the feelings were infectious. They advocate activity based rehab. This is the idea that muscles needs to be used and exercised, in the hope to promote new nerve growth. They make no promises but the research shows that if the spinal cord isn't cut completely the working of muscles will help to promote the growth of nerves. This is accomplished through electrical stimulus, in the form of portable electrical stim-units and electrical stim-bikes. They use these alongside more traditional mobility, balance, and care training.

Showing off my wheelchair biceps and my scars.

MORE BACK SURGERIES
Repeat imaging near the end of my inpatient stay showed that the broken pieces of spinal column were pressing on the cord. I had gotten significant function back in my right leg by this time but the left leg was still mostly inert. Even electrical stimulus couldn't get the muscles in the left leg to move; the hope is that another round of surgeries could improve my overall function.

They cut into my back and removed the broken pieces of spinal column. They then put in a metal cage and put the pieces of bone back in. The alive bone cells would regrow into the shape of vertebrae, this time without pinching my spinal cord.

It is safe to say I've seen more hospital beds than I care to mention. Here I am reading a stack of get-well cards

I stayed in Baltimore with my Aunt and Uncle until the end of the summer, doing outpatient rehab at Kennedy Krieger. While the effect wasn't immediate, over the next few weeks I began to get significant function back. I had my right leg completely back by the end of the summer and few more trace muscles in the left leg. I now had enough function back to walk around with a leg brace for short distances, with the help of a walker or crutches.

 Out stretching my legs.

COLORADO
It was my goal to return back to Colorado State again. I was still using the wheelchair but I felt confident enough to move out there on my own. I happened to have an older brother who was taking graduate classes at CSU at the time who was willing to share an apartment. I was excited and pumped to start things off again.

Though things started off strong, I eventually started having various health problems. I'm not naturally self motivating so when I felt down I would just lay in bed which only made things worse. Eventually I was in so much pain I stopped going to class altogether. By halfway through the semester I hit my lowest point ever. My mother came for a visit and saw the condition I was in. She asked if I wanted to move back home with them and I said yes.

NORTH CAROLINA
Having someone to kick me out of bed was exactly what I needed and my parents obliged. They started by getting me to wheel around and to do more and more walking. Though this was still difficult I got better. I slowly began to work up stamina and endurance. I had a 3 times a week PT program and worked out/swam at the YMCA. I transferred to Elizabeth City State University, our city's university. Though no Colorado State University they were close and offered a biology degree program. I'm still in North Carolina today, working on finishing up my degree. I'm set to graduate spring 2013.

My physical function continues to improve. I go periodically to Kennedy Krieger for additional rehab. These 2 week bouts, nicknamed “Boot Camp”, yield the most exciting results. In January 2011 I trialed using two canes instead of walking with crutches. In June 2011 I trialed using an AFO (Ankle Foot Orthosis, up to just below the knee) instead of the KAFO (Knee Ankle Foot Orthosis, up to the hip) I had used up to that point. I started out the fall semester of school vowing that I would not bring the wheelchair from the house; every time I left the house I would have to take my leg brace. I was still using my KAFO when I walked anywhere and used the AFO only in therapy. The KAFO was a heavy mess of wires and levers. October 2011, one of the wires on my KAFO snapped during a long holiday weekend. Since I had sworn to not take the wheelchair from the house I used my AFO the rest of the weekend; I never went back.

Trialing out two canes instead of crutches.

I finally ditched the wheelchair completely this past January, two years after my accident. I was using the AFO and canes well enough that I felt it was time. It was hard to get used to at first but I managed eventually. My wheelchair now serves only as a bed for my cats.

My most recent accomplishment is to have regained enough strength and balance to switch to walking using only one cane. Not quite as dramatic a shift as some of my others, it still wasn't easy to adjust to losing a walking aid. I continue to work toward my eventual goal of walking without any leg braces or canes. I'm not there yet but these past two and a half years have shown me it's more than possible.

With one cane and my AFO.

I'm not the boy I was. Who can say what I'll do with my life now since I almost lost mine. The focus of my journey has changed quite a bit, from learning how to use my wheelchair to walking again. I'm walking full time now but it wasn't quick or easy.

I fully acknowledge I was lucky my injury wasn't as severe as it could have been and that I had a lot of help along the way. I can't speak for everyone with a spinal cord injury, since each experience is different. I do know that the most important thing is to be up and aiming toward something. Whether this is finishing the next level of school, getting back function, or simply being fit enough to try something new. At one point I would have stayed in bed and given up. And if I had stayed there I would never have gotten out of my chair. So who knows where you might end up.

One suggestion was to get shoes with more ankle support. I'm pretty sure they were talking about hiking boots but since I have a sense of style I got a pair of Chuck Taylors, the old school high top Converse. Though I wasn't expecting these to make any difference, I found myself walking better and better.



I began walking  so well that I decided to leave the cane at home. That first day was kinda rough but after that I just kept going. It's now been 2 weeks since I used my cane at all! 

No I didn't break my canes. They're in the corner collecting dust!

Sunday, July 1, 2012

A Story of Hope - How i Roll

I connected with this great guy through facebook. We contacted each other via facebook a while ago and we swapped stories. He posted my story on his blog a few weeks back and I'm more than happy to return the favor. In his own words here is How I Roll (check his blog out! It's a great resource for anyone new to a wheelchair):


My name is Jacob. I’m 30 years old and live in West Palm Beach, Florida. In a nutshell, this is the story about a defining moment in my life.

February 4, 1982:

Born in West Palm Beach, FL.

 

January 26, 1999:

Just like any other day, I arrived to homeroom 5-10 minutes late. All I heard was noise as the teacher, whose name I couldn’t recall if my life depended on it, reamed me out for being late to class, again. I could hear her perfectly fine, but chose not to listen to the noise coming out of her mouth. I was a 16-year-old junior in high school, who could have cared less about high school… I was more interested in my new girlfriend and my hockey game that coming weekend.

And just like any other random day, after homeroom ended 2 friends and I decided to cut class 2nd period, as we’d done many times before. I’ll call the driver “Mike” and my other friend “Ryan” to explain the story. We often parked in the faculty parking lot, so getting on and off campus was a breeze. We decided to go to my house because nobody was home during the day except my older brother. After playing Nintendo 64 for over an hour (007 multi-player was sweet back in the 90′s), I had to get back to school for a math test, which I had studied zero for. All 3 of us loaded up into Mike’s 2 seater Ford F-150 (no extended cab) and headed back to school, which was only 2 blocks away. At the last minute Ryan decided he wanted to go home instead of school, so we dropped him off at home 2 blocks away.I vividly remember pulling up to his house and letting him out of the truck. What I don’t remember is what happened shortly after. I had hopped back into the car, and within 60 seconds my life was changed forever, in an instant.

Mike and I were close, like brothers. Out of all my friends, I trusted his driving skills more than anyone. But, on this day, 2 blocks away from our high school, he made a mistake, which ultimately left me paralyzed from the waist down.

Saturday, July 30, 2011

A Story of Hope - John "Alex" Curtis

http://blog.kennedykrieger.org/2011/06/defining-determination/


I met Alex during my stint at Kennedy Krieger inpatient rehab. Alex had gone in for surgery to fix a chest wall abnormality called Pectus Excavatum, which can affect breathing. He woke up from the surgery unable to move his legs. 4 weeks after the surgery through sheer will power he moved a toe.

Deciding he was going to walk again Alex worked every day, willing his legs to work again. He continued to get stronger every day, with his therapists doing less and less work. He moved from walking in the parallel bars, to walking with a walker, to crutches, to walking with canes, eventually walking independently.

I met Alex near the end of his stay, at the point where he was still using crutches. I found his progress amazing, since it hinted at the progress I might make myself one day. We compared similar hospital stories and experiences, swapping stories with the other older patients. He left inpatient fairly soon after I got there, showing the promise of escape in my future.

I ended up meeting Alex again when I switched to outpatient. He had just switched from crutches to canes. He offered me his old crutches since he would no longer be needing them. These are the same crutches I still use when I go to the pool (though they have been beaten up a little bit since then). I'm grateful for the gift which let me progress to the next level of mobility. Thank you Alex.


Incidentally Alex was the one who inspired me to get flame covered canes. His pair of flame canes made him look like a comet compared to my snail like pace.


So here's another story that there is hope after a traumatic event. As when I first met him, Alex's story is a sign of things that could happen to me as well. I remind myself that everyone's journey is different but that doesn't mean we can't look to where others have traveled.

Tuesday, July 26, 2011

I'M FAMOUS! (kinda... not really)

Earlier this month my amazing and lovely therapist Brooke Bamford posted a brief post on the Kennedy Krieger Blog about The Turtle Walks, where she waxes on with the glow of a proud therapist. I say this without sarcasm, for a therapist who is proud her patients is more likely to do an amazing job with them. I won't deny I've worked my butt off to get here but I will give my therapists credit for most of it. Second only to you, Mom. (I believe in giving credit where it is due)



It's been weird how many people have connected with me through The Turtle Walks. Initially this blog was meant to be just a means of communicating with my friends and family. I started writing because I got tired of people blowing up my telephone, asking me the same questions over and over (How are you doing?, what did you do in PT? what muscles are you moving now?). But now it's gone beyond that. I've seen myself change, seen changes in technology, and connected with strangers on multiple continents. I've now moved onto facebook, where you can 'like' The Turtle Walks to get immediate updates.

I cannot express how grateful I am to the support network I have. The unadorned truth is that my friends and family carried me through this last year and a half. I'm okay with the fact that a blog about a gimp is not likely to become an Internet sensation and I can tell you without a doubt that I feel supported and I feel loved.

Friday, December 17, 2010

Story of Hope: Rodderick Ball



I knew Rod for a while when were both in Kennedy Krieger inpatient together. He was a quiet kid but determined. Rod had schwannomatosis, which caused benign tumors to form in the nerves in his spine, causing a variety of nerve problems throughout his body. He had been through surgery and when I met him had both legs in casts. You can read the full story at the link below, but to make a long story short he went from not walking to leaving the hospital with only a pair of crutches. He has a long road ahead of him, as we all do, but he's come so very far already.

http://helpkids.kennedykrieger.org/rog/icsci2010.html


I want to take this time to really tell everyone what an amazing place Kennedy Krieger really is. Rod's experience isn't unique. They've taken people that other facilities may have given up on or given no hope and turned them into people they never dreamed they could be again. They have a dedicated staff who care about everyone who comes through; no matter what you are surrounded by people who want you to succeed. The article mentions Beth Farrell, an amazing therapist who I've seen firsthand. She works alongside a team of other amazing therapist: Meredith, Stephanie, Marjorie, Varsha, and scores of others (these are simply the ones I worked with on a daily basis). They work in tandem with doctors, nurses, nurses aids, recreational therapists, and a core of volunteers. I'm sorry if I leave anyone out. It's been a long time and I really wish I could include everyone of you.

One of things that I've always noticed is that everyone who worked with us, day or night, wanted to be there. Everyone I met was excited about the prospect of assisting people on their way to recovery. Being surrounded by support like that is an amazing feeling. With that combined strength you can move mountains.

Wednesday, July 21, 2010

A Story of Hope: Colin Heffern

This is not someone famous but simply a guy that fate has let me meet. This fall I will be moving out to Colorado and living in one of the University apartments with my brother. The previous tenant was a guy by the the name of Colin. A quadriplegic himself, he was injured on campus and set up with pretty nice digs.



Colin is a senior at Colorado State University studying landscape architecture. In high school, he was an avid athlete partaking in golf, tennis, swimming, and soccer and excelling in all. During his freshman year at CSU, he was injured doing a belly flop into a pile of leaves and has been paralyzed below the shoulders ever since. In the spring of 2008, he had the opportunity to study abroad at the University of New South Wales in Sydney, Australia.

(That blurb was from www.swimwithmike.org, a fundraiser that uses a swim event to raise millions for athletes who have suffered serious injury or illness)

Since he is a quadriplegic, the apartment is already adapted for wheelchair use, with a roll in shower, automatic front door, and other stuff (I'm not actually sure what else, I haven't been there in person yet). Colin has made the best of his situation, graduating this past spring in landscape design. He is going to attend grad school in California in the fall.

It is one thing to hear about someone overcoming adversity, but it is another to meet (or at least talk on the phone) to someone in a very similar situation who went on full steam with his college career and beyond. Maybe this is doable after all.

Wednesday, May 5, 2010

A Story of Hope: Howard Rheingold


Another interesting story, that of Howard Rheingold. He fought through cancer and is still fighting. He is a writer and documented his experience through a blog. It is amazing to read through some of his experiences and how he has become the person he is. His blog is called Howard's Butt (guess why!):



http://howardsbutt.tumblr.com/

Here is one of my favorite passages so far:

I do see clearly now how the person I’ve become was largely a creation of my own choices; I could have reacted in other ways, become other people, but I did what I did and I am who I am. That’s not the end of it. Apparently I’ve been called to be someone else. Again.

Check out his story. It's amazing to hear and he's a brilliant writer.

Wednesday, April 28, 2010

A Story of Hope: Conner McDougall


This is a website of one of my roommates, Conner. A quiet kid, but he responds with a smile to the world around him. His story is sad, but also one of hope. You can read his full story on his website:

http://www.caringbridge.org/visit/connermcdougall

In a car accident, tragically killing both his father and 6 year old brother, Conner survived to fight on. C1-C4 vertebrae were stretched but not broken, leaving him with impaired sensory and motor activity. Though his outlook initially was very bleak, Conner now is moving all his extremities and is currently weaning off the ventilator. A story of survival, Conner inspires mean what can be possible with persistence, hope, and the prayers and support of those around you.