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.
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!
I haven't written anything on this blog in a while but the anniversary of my car accident is a date I couldn't ignore.
If you happen to be reading this blog for the first time, read this post first, explaining my story. (If anyone wants to see how things have changed you can check out my First Post After The Accident, Year 1, and Year 2)
This year has been one of continuing progress. I've had 2 different leg braces, ending the year using the Allard Toe-OFF AFO, an ankle brace that makes use of carbon fiber to make it durable and light. This is my smallest and lightest brace yet, compensating for the lack of ankle movement in my left leg.
Some of my old braces took about 5 minutes or more to get on. This takes about a minute.
I've still had my share of medical issues. I've had multiple surgeries for an ongoing infection that's gotten all the way down to the metal in my back. Once metal hardware is infected (especially necessary hardware that you can't remove) it's very hard to get rid of. Precautions have been taken and every measure is being taken to try and eradicate the bug in my back.
I finished another semester, leaving me only one more until I graduate with my bachelor's degree in biology. I'm already applying to graduate schools for next fall, where I'll study bioinformatics (a combination biology and computer programming).
I've been continuing to explore my new found passion for painting. This year I painted my Christmas gifts for people, coming up with a few really great ones. Some are better than others but I had fun painting each and every one of them.
The tabernacle of a church, painted for my mother.
The Four Seasons, for Q. Try looking at it upside-down.
The final painting turned out really well, though this picture didn't do it justice.
The original.
The Nightmare Before Christmas, for Kayla.
Batman Celtic Knot, for Philip.
The Sun Over Lake Michigan, for my aunt.
Minas Tirith from Lord of the Rings, for my dad.
My friend Cat asked for a picture of me and I painted her this.
There are still a couple of others in the mail that I won't post. Needless to say I've been spending countless hours working on these. The best part is that from all my brainstorming sessions of what to paint for people, I have a giant stack of painting ideas and sketches that I can still use.
Lastly I want to thank everyone who's helped me along this past year. I've worked hard but no one gets anywhere without some from help of those around them (family or friends). I first want to thank my Mom and Dad, who've been there to kick my butt over the years when I'd already given up. Dad, thank you for being there for advice, counsel, and a fresh pair of eyes. Mom, you've been there since since the beginning and have carried me kicking and screaming down the road to recovery; I love you both more than words can convey. To my siblings, thanks for being there to dish out the family gossip, to commiserate, to give me a patient ear when I've needed it, and helping to keep my life in perspective. Thanks Philip, a true friend through anything. Thanks Kelley, my amazing faghag, who helped keep me sane no matter what was going on in my life. Thanks Tony, for reminding me to relax and enjoy life and not to take things so seriously. Thanks Kayla and Eli, the cutest family I know, for reminding me what's important in life. Thanks all the staff of Coastal Rehab (though especially Mindy and Lynn) for tireless working to keep me improving. Thanks to all the staff up at the Kennedy Kreiger Institute and The International Center for Spinal Cord Injury (Kristin, Meredith, Brooke, Stephanie, Marjorie, and so many more) who've been the driving force in my rehab since I was first injured. Thanks to all the doctors (there's dozens), nurses (hundreds), and other staff who've helped me with my ever climbing number of medical visits. Thank you to the orthotists who've worked tirelessly to make sure I have a working leg brace, without which I wouldn't be walking at all. Thank you to all the people who've read my blog, followed me on facebook, tumblr, etc; though this may be just a way to pass time for you, the support I've received from all of you has kept me going for all these years.
I'm currently up in Baltimore for Boot Camp again, so expect updates to follow in the next few days.
How do people find balance in their lives? I've always had a hard time balancing things in my life. I tend to go to extremes whenever I have a choice in front of me and it comes back to bite me EVERY TIME! You think I'd have learned by. There are the things I've always struggled with (homework vs. leisure time, clean vs. orderly, health food vs. junk food) but I've got a few that have come to the forefront lately. 1) Slides vs. Hitchhiking
A project I've been working on for my parents is to scan in their old projector slides. My dad is a photobug and has slides going back to when he was a kid (though most are from me and my siblings lifetimes). Realizing that the film was degrading my dad got an attachment for our scanner so that we could scan them into the computer. Only problem is that it only scans in four slides at a time.
It takes about 2-3 hours to scan in one carousel of slides. Most boring job I've ever had.
This extremely tedious task was offered to me, in exchange for a small amount of gas money. As I'm not otherwise employed this is one of my few opportunities for real work, so I dived right into it. For obvious reasons I'd rather drive myself, rather than say hitchhiking. I started doing 2-3 reels a day.
If I ever do end up hitchhiking I won't forget my towel.
The problem with this is the longer I did this the more I felt increased lower back pain. My back pain had more or less vanished since I gave up my wheelchair at the beginning of this year. If I push myself too hard scanning slides, I end up slightly less broke but in pain. I've been trying to moderate myself, only doing one (maybe one and a half) a day; gas is a good motivator but back pain is a good deterrent. Finding balance is the goal but it's hard not to do a ton or give up entirely. It's a process...
2) Old Brace vs. New Brace
I'm now in the middle of two different braces, both AFOs.
The Allard ToeOFF is a carbon fiber brace with enough flexibility to let me bend my leg a little without falling over.
They can both be a pain in different ways. My old AFO gives me blisters on my heal and cuts into my skin near my knee. The new AFO gives me blisters where the bottom strap is. Since my leg is used to the old AFO it does far less damage, but the new AFO allows me a more natural gait and more freedom of motion. I tried wearing my new AFO full time but the skin around the straps isn't ready for full time usage. I'll try and ramp up the amount of time I spend in it but it's going to be a long time before it's ready for full time use.
3)School Mode vs. Exercise Mode vs. Internet Mode
I come from a family of procrastinators so it's hard to get the things I need to accomplished. I'm doing well in school but I still struggle with finding time for everything else in my life. I try and spend so much time each week exercising but it inevitably gets sucked into school time or internet time (i.e. this blog). I love my blog, since it's how I communicate with family and friends on how my recovery is going. But to keep writing is a lot of work, especially when I've got a million other things on my plate.
Be sure to check out The Turtle Walks facebook page.
It's not perfect but somehow I've struggled and found a tentative balance between all the activities in my life. For now, it's working. No matter how tempting I won't blow off school, my exercise time, or writing on this blog; they've all become important parts of my life. Just don't ask me for anything else; not because I wouldn't do it but I'd end up doing it when I get around to it. And I have been known for being a little flaky...
In one of my last posts I wrote I was traveling up to Albany, NY where I'm taking a summer class. If everything goes well I should be able to graduate in the spring. It is kind of bizarre being back on campus again, though besides the gurgling from the vacuum pump on my back my newest injuries haven't affected my class too much. At least the teacher always remembers my name.
I've been doing a lot of walking lately to the different parts of campus. We park near my class but if I want to visit the library (which I do nearly every day) or go grab food at the cafeteria, it can be quite a hike. At my usual pace it takes me a while to get anywhere.
One of my favorite lines when traveling with someone else is "I only have one pace, so SLOW DOWN!" I am usually yelling that at the backs of whomever I am walking with. This, in all honesty, isn't completely the truth. I have two speeds: turtle speed and turtle hyper speed. Turtle speed is about the pace of a lazy stroll to anyone else. It let's me focus on staying upright, contracting the muscles I'm supposed to (abs, glutes, leg muscles, back muscles, etc.), and walking in a more or less straight line. Turtle hyper speed is the speed akin to a slow speed walk. Like a spaceship on any sci-fi show, I can only manage this over short distances and it wears me out when I do.
Recently, I've been practicing on these cross-campus journeys to try and maintain turtle hyper speed over longer distances. Only problem with this is that when I tire myself out I tend to catch my feet on things and I loose my balance. Which leads to me picking myself off the ground.
It is good to be back doing something. I'm terrible at self-motivating but if I have something to work towards I am an over-achiever. So here's to new places to go and new goals to achieve. Just slow down for me, otherwise you'll be doing a lot of waiting while I'm working on my goals.
It has been a while since I wrote anything. I've been struggling to catch with all the work for school I missed during my stay in Baltimore and now I'm cramming for finals. This is my way of taking a break in between studying. Plus I need to update everyone where I am physically.
My last post, I still had one drain left in my back to get rid of all the residual fluid that builds up after surgery. The drains are now all out but the trouble is not over. Within a week of the drains being pulled a bubble of excess fluid began forming underneath the skin.
We were left with no choice but to cut the bubble open, clean it out, and stuff it full of treated packing material. The packing material will keep the wound clean and soak up all the excess fluid. I am not thrilled by the whole process; the wound needs to be cleaned and dressed several times a day. This has left my skin a mess from all the tape continually coming on and off. The entire process of packing the wound is supposed to delay the closing of the wound while soaking up any pus/fluid that's still leaking.The wound heals from the bottom up much like a zipper closing.
I've been sewn up and stapled up but this is my first time being zipped up.
To be honest I'd rather deal with this wound care then have my tail back again. At least this way I can roll over. I still have the PICC line in my arm, delivering IV antibiotics but I only have to change that every couple of days. Medically things are moving in their usual slow pace while the rest of my life zooms along. But what else is new. I've gotten to like my 'Turtle Pace' and those who don't like going that slow can zoom on ahead. This turtle still has a few tricks up his sleeve.
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.
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.
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.
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.
In case you didn't know, if you have an open incision (such as the kind you'd get from surgery) you're not allowed to swim. Swimming greatly increases the chance of infection and causes the scar to heal really strangely. My body heals extremely slowly ever since the accident, so the incisions should have taken a month to heal has taken almost 3 months! But finally I'm getting BACK IN THE WATER!!!
The sea turtle has become my symbol in more ways than I had ever imagined: I'm slow and awkward on land but in the water I can dominate. I've been aching to swim for ages now; I always feel slightly incomplete without the water to play in. Besides being a great workout, it loosens all my joints giving me freedom of movement that I don't usually enjoy.
Since my hiatus from the water, I've become significantly more mobile on land. There are however many moves that simply cannot be performed with canes and a gimp leg. In the water these limitations vanish. Suddenly, I can perform headstands, do flips, do karate kicks, and move my body in ways that only bring frustration when I attempt them on land.
The moves I can perform now on land were the ones I was practicing in the water only a few months ago. So the crazier I get in the water now the better I will be able to move on land soon enough. Are you ready?
Many of you have heard me discuss my leg braces (KAFO, stance-KAFO, and Roboleg) and my AFO (Ankle Foot Orthosis, or ankle brace), in gory detail. What you may not be aware of is the fact I've used many different walking aids over the past two years. The latest of which is my new cane (singular), the Airgo Comfort Plus.
It's design is sleek and smooth, it's got an awesome color, and its more sturdy than any of the canes I'm currently using.
For those who missed it, after I was injured on December 29, 2009 I couldn't move either of my legs for a month. I had given up hope of getting function back at that point when, surprise, I got a toe wiggling. Though this was an immensely positive sign it was months before I could even stand in the parallel bars.
After months of toil and hard work I was able to stand up using a walker and a leg brace that looked like it had been used when Polio was still around. The four legs of the walker allowed me to hang on tightly without falling over. This was a big step, proving that I had the potential to be standing and walking again. I used the walker for weeks while I slowly became used to standing upright and walking/limping forward.
The tree's not moving... Well NOW what am I supposed to do?
As I left inpatient I was given a pair of crutches from a friend who had moved on to using canes.
These allowed greater freedom of movement, now that I was starting to gain back my strength and endurance. Around this same time I also acquired my stance-KAFO (Knee Ankle Foot Orthosis, or full leg brace) and continued to relearn how to walk. I still have these crutches and hope to pass them on to someone else who needs them.
Fast forward to 2011, when I got my flame canes.
Inspired by the same person who gave me my crutches, I got two matching flame canes when I was ready for the challenge. It was hard at first to balance without the extra support from my crutches but I begun to use my canes more and more.
My physical therapists experimented with different cane combinations/types:
using one cane only,
using a quad cane,
trialing out other canes, as well as trialing these with all my different types of leg and ankle braces. I settled on using my pair of flame canes and my AFO to get around.
Now that I've finally gotten rid of my wheelchair for good (knock on wood) I've been looking about for a new goal to work towards. Though I've been able to walk with only one cane for some time (see video above) I've had a hard time doing this for more than a few minutes at a time. This past week I decided it was time to move from double canes to a single cane. It didn't take long to find this sleek and durable cane, the device that will help me limp my way into the future.
For anyone who is first starting out with a new spinal cord injury I have two pieces of advice:
1) Always listen to your physical therapist. They generally are very knowledgeable and will have practical suggestions that will help you physically improve.
2) Never be afraid to try new things. This includes braces, walking aids, physically challenging feats, social situations, a new job, a new school, etc. You never know what could happen to you and it just might be amazing.
I never expected to be walking again and yet here I am. I am not promising that those without working legs will suddenly rise up, walk, run, and dance the hula. But if you challenge yourself you are almost guaranteed to find you can do more than you thought you could.
The last post time I talked about going out into a club and having a blast. This time, not so much. I got separated from my friends for a few minutes in a crowd. I have a bit of difficulty walking in in straight lines, due to the lack of some key stabilizing muscles of my trunk and leg. So I ended up knocking into a few people, who all apologized to me before I had time to even start one of my own.
What the world looks like ALL the time.
I did find my friends in short order but this is just another example of how turtle speed has impacted my life. "Turtle Speed" is the name my friends have given to my sluggish pace; it comes in two varieties, the limp and hyper speed. My pace has increased since I've started walking, with the limp about as fast as my old top speed and hyper speed akin to the speed walk. My speed continues to improve with time, so I have high hopes.
In the mean time I will spend countless hours catching up, flagging down friends who got ahead of me, and undoubtedly getting lost. It's a good thing I'm not in a rush...
For anyone who read my previous post, Anatomy of the Awkward Crippled White Man's Dance, I made it clear that though I may look funny, I still love to dance. I got a chance to practice these ''skills'', at the birthday celebration of an amazing friend of mine. We went to a dance club in Norfolk, got on the dance floor to the techno-remix of every pop-icon of the last 40 years, and danced till we dropped. It was a blast! I took one cane on to the dance floor and showed that my hips and body may not be as nimble as I used to be, but I can still move to the beat.
I got a good workout, moving my body in ways it hasn't moved in years. This is proof of what everyone has told me again and again, that my improvement is become more clear and obvious every day.
I've even had official tests to prove the point. One test that has now been performed three separate times, twice after surgery and once this past week, is the Berg's Balance Test. This test involves performing various tasks (standing, sitting, picking things off the floor) that require various amounts of balance. The first time I took the test I scored in the low 30's (out of 56), not bad considering I was fresh out of surgery. I then went through a week of intense physical therapy after surgery and at the end of the week I performed the balance test again; I gained a few points, putting me in the high 30's (out of 56).
Almost two months after surgery, my physical therapists decided to perform the Berg's Balance test again to see how far I had progressed. I scored in the high 40's, gaining 10 points and improving in almost every category. Now that I'm allowed to bend, twist, and lift over 10 lbs I've been able to push myself once again. I'm getting stronger, my balance is better, and everything is looking up.
I'm enjoying this period of optimism and excitement. Every one who has seen me on a regular basis has remarked how my walking, standing, balancing, posture, etc., was looking better. I've been raised to be humble and not let success go to my head; so I'll keep plugging along. My prediction for this time next year I'll be walking onto the dance floor instead of awkwardly limping on. I can't promise you'll really want watch, since it's still likely to be pretty strange looking. So here's a message to all those watching silently from the sides: If this weirdo got onto the dance floor, why are YOU waiting on the sidelines?
Those of you who have known me since before the accident know I've never been a particularly good dancer (no coordination and two left feet never helped me out). I had limited skills; I could freak dance with the best of them, I even learned to swing dance, thanks to some of my closest high school friends. Losing mobility in the lower half of my body threw what few moves I had out the window. For those unaware, I was paralyzed from a car accident, T-10 (thoracic vertebrae) down, not able to move either of my legs. A month after the accident I got a toe moving and from there I've gotten both legs moving.
Me relearning how to walk
The problem with movement is that not all of it is equal. For those unaware, movement comes in two forms: gross movement and fine movement. Gross movement is the ability to kick out or jerk a limb. Fine movement is the ability to make small controlled movements. Fine motor skills take the combination of larger muscles and smaller stabilizing muscles. Obviously these take much longer to build and even longer to use properly.
Back when I was still having trouble standing and walking.
My right leg from the very beginning has been recovering faster, with most gross and fine motor skills returning. Though it has taken over two years, my right leg is almost back to where it was pre-accident. The left leg is always the late one to the party. It has made some great strides in gross movement, allowing me to walk around. The fine movements are still lagging though. I can move it mostly where I want to, but it's always slow and is difficult to control.
And there is more involved in the process than just legs. My abs and obliques, the muscles used to control your hips and waist, have had two years without doing a whole lot. I've slowly started to build these up but my time in my wheelchair did me no favors. All the small stabilizing muscles people take for granted are no longer there. I now have something to work toward.
cliffnotes for trunk muscles
Now that I've finally ditched the wheelchair for good I can get back to pulling off my awkward mistimed moves. In the mean time everyone is just going to have to live with my jerky, weird looking, and probably embarrassing dancing and everyone can just shut the hell up! So dance like there's nobody's watching!
Peter, before the accident, getting his "groove" on. He don't care what you think.
If you don't get this, go to youtube.com and look up Honey Badger.
For 6 weeks I've had movement restrictions, put in place by my spinal surgeon. I'm not allowed to bend, twist, lift over 10 lbs, not allowed in the pool until my incisions heal completely, and not allowed to drive.
Attention Peter:
Do not BEND FORWARD (over 90 degrees)
Do not TWIST
Do not LIFT over 10 lbs
Sincerely, The Precaution Police
(This was put on the back of my wheelchair by my therapists in 2010 after spine surgery.)
The first three I've had in place before so there was no surprises there; the restriction that really got under my skin was not being able to drive. It's not like I had no transportation at all: my mother begrudgingly chauffeured me around Elizabeth City and my friends took pity and picked me up. What I miss is the freedom to come and go as I please. This is all going to change on Tuesday, when all my restrictions are lifted!
I'm not going to go completely nuts, though there are some more complicated maneuvers I wanted to try. I've already tried jumping on a trampoline and working on a balance board. The trampoline was fun but harder than it looked. The balance board was a familiar activity, though this time my therapist combined it with an inflated disk underneath. This changed the balance, reminding me of before the accident. I was a strong skier and a passable snowboarder, and this particular exercise reminded me of what it was like to keep my balance on my snowboard.
Shredding the powder, back in the day
This gave my therapist the idea to try me on the skateboard they had in the gym. It went pretty well, considering I was a terrible skater before the accident (the gimp leg not helping matters at all). It was fun in a way that I haven't enjoyed in a long time. Who knows, you may see me skating down the street one of these days, with a cane strapped to my back for emergencies.
I'll settle for being as off-balance as I used to be.
I'm definitely getting stronger, though I still have a long way to go. The one thing that is guaranteed to improve my mood is I will soon be allowed back in the water, a turtle's natural habitat. The incisions from my surgery were extremely slow in healing, but they are finally healed enough to allow me to get back in teh pool. No matter what how sluggish I may be on land, I rule the waves!
I'm not quite counting the minutes until I can bend, twist, lift, drive, and swim but I'm really close. Three more days, three more days, three more days...
This is the two year anniversary of my accident. Not quite as depressing as the first one, it still stirs up different emotions. I thank my family for providing me with distractions all day, making me forget until almost 9 o'clock in the evening that it was December 29th again.
For those who have missed the last two years, here is a quick recap. Click on the links below to view posts.
My life has changed more than I could have possibly imagined. I was told by one of my doctors:
"You will be ambulatory in a wheelchair but statistically you will never walk again."
Here I am, two years later walking every single day. I remember that when I was first told that my spine was broken and would need to use a wheelchair for the rest of my life, I was in complete denial. I stated to my family that was in the room with me, "I will not be stuck in a wheelchair! And that is it." Though this turned out to be initial blind optimism the words have turned out to be oddly prophetic. I may be using canes and an ankle brace but if this is what it takes then it is worth it.
These past two years have been the most difficult years of my life. I have been challenged physically and emotionally, seeing my world change in unexpected ways. But this is life; whether I had perfectly working limbs or not the world refuses to stop for anyone. Friends move away, relationships come and go, and the sun continues to rise and to set.
Thank you everyone who has gotten me through the last two years. Thank you Mom, who has been there day in and day out since day one. Thank you Dad, who has supported me through all my best and worst decisions and loved me anyway. Thank you my brothers and sister, keeping giving me the support I need to keep going. Thanks to all my extended family, some of you opening up your homes, all of you sending goods hopes and wishes. Thank you Philip, Tony, Kelley, Kayla, Ozcur, Darlene, Steve, Cat and all the other friends who ignored me when I told them I couldn't do something and made me do it anyway. Thank you to my land therapists, my aquatherapists, to the entire staff of Kennedy Krieger, especially theInternational Center for Spinal Cord Injury (ICSCI). Thank you Meredith, Stephanie, Marjory, Moriah, and Brooke, all of you earning my respect and gratitude, most of you earning a permanent place in my head, reminding me of what I should be doing when I walk. Thank you to Mindy and Lynn, for reminding me what a pain I can be and exactly how far I've come. Thank you to YMCA, for giving the turtle a place to swim. Thank you Steve Ackerman, for helping me to get a handbike and getting me back out on the road. Tom McNally, for opening up your home so that I could continue with physical therapy. Thank you to all the orthotists who made the leg braces and ankle braces that are the tools that allow me to walk. Thank you to all of you who have been reading this blog, following me on facebook, or keeping track of my videos.
I can say honestly that I would not have made it this far if it were not for all of you. I hope everyone reading this will remember that no matter how lonely we can get we all have people behind us, helping us in ways big and small. "It takes a village" does not only apply to raising a child, it applies to every single one of us.
Sorry I haven't written the whole last week. I've been so exhausted from PT every night that I was barely able to keep my eyes open. So here is the quick version of my week in PT.
The week of physical therapy following surgery was more intense for my legs than any normal sessions would have been. I have multiple back restrictions (no bending, no twisting, no lifting over 10 lbs) from my back surgery, making it harder to find activities I could do. Most of the activities I was able to do involved my legs, which meant that my legs got worked out 3 times as much as they usually do.
I did a lot of walking and standing balance activities. One of my goals was to increase the distance I could walk without getting completely exhausted. I'm not sure exactly how far I could walk before but my therapist set a distance of 1200 ft for my new goal. Needless to say by the end of the week I blew that goal out of the water. The balance activities included putting my feet at different elevations, on different surfaces, and standing with and without my AFO (Ankle Foot Orthosis). My legs ended up feeling like jello after all of that.
This exercise forces the weight onto my left leg, the one that still has considerable weakness. The small step was replaced with steps of varying heights, the tallest reaching about 6''.
After I mentioned the soreness these exercises were causing my legs, we eventually switched it up. I was given several exercises that focused on my hamstrings (the muscles running behind the knee) and I experimented with the use of the biofeedback machine.
A bit of background: When I first started getting muscle contractions in my legs it used to take every ounce of concentration I had to get even one muscle firing. Now that I have significant use of much of my left leg I am having trouble turning some of these muscles back off again. My hamstrings, the group of muscles that together bend the leg at the knee, are being hindered by the fact that my quadriceps, the thigh muscles responsible for extending the leg, won't turn off. In essence I am fighting my own muscles every time I attempt to bend my leg.
The biofeedback machine, the NeuroMove.
The biofeedback machine is connected to multiple electrodes that tell me when certain muscles are active. The particular model I used, the NeuroMove, sets measurable goals so that you are able to see when a muscle is moving. In this case, I was able to use it to show when my quadriceps were kicking in. This way I could consciously relax the muscles and see visible results on the screen. I achieved limited success with the machine, as far as machine measured results. What I did gain was the sensation of what it was like to have normal functioning muscles again, something I can attempt to repeat from now on.
The last noteworthy exercise I did was jumping on a mini-trampoline the Friday before I left. This was something my therapist had wanted to experiment with once she saw how high functioning my legs were. Harder than it looked at first, I had difficulty even bouncing gently. My main problem was that because I have greater weakness in my left leg it is hard to move both my legs in unison. Eventually I was able to get them both moving in a rhythm, even getting a small jump here and there. As easy as this sounds, this was one of the hardest workouts I got all week.
At the end of the week I was given a home program, a booklet with exercises and stretches handmade just for me, even though I'm not able to practice all of them yet because of my spinal restrictions. The exercises in the booklet focus on strengthening the muscles and areas that still have some weakness. I've received one after each round of therapy at Kennedy Krieger, each one with slightly different exercises based on how far my body has recovered.
This was not where I was expecting to be after surgery, though I am pleased with the results. I'm only a step behind from where I was before surgery instead of the three I had been dreading. At the end of the day, I'm tired but I know I will be back to where I was and farther in no time.
I'm finally out of the hospital! We've rented an apartment for a week while we're here. It's downtown, on the 23rd floor with a view of all of downtown Baltimore. Breathtaking!
I've been able to walk farther and farther each day. Yesterday I made it down the hall and back. We've estimated that the distance is about a block when I walk the whole length of the building. Today I pushed my limits: I walked down the hall, down to the mezzanine level where they had the business meeting rooms and a computer lab, down to the first floor lobby, and then up to the 23rd floor again, returning to the hallway outside the apartment.We've estimated that we walked a little over 2 blocks.
I figured since I made it that far I could keep going. I started walking to the end of the hall. Midway through I started feeling light headed. My mom, who was walking with me, said I was starting to look more and more pale. I realized that my walk was ending so beelined for the door. I made it before anything bad actually happened but I discovered the limit of my endurance.
It's actually really nice to know what my limits are. It's the only way you can set goals, the only way you can improve. When I go to PT they always ask what my goals are for my time with them. Tomorrow I'll be able to tell them that by the end of the week I want to be able to walk farther than those two block. I want to be able to recognize my new limits, which will be farther than the ones I have now. Limits are good once you recognize that it's possible to move beyond them.
