This is a long one, but worth it :)
Alright, so this is a major update in a few ways. One, because I haven’t updated in a while and two, because some pretty cool things have been happening recently. I will go in chronological order since my last update.
LA Bike
This was such an incredible experience. My heart swells each time I think about it. Having so many people come out and ride and support me was incredible (22 riders, about 10 others cheering us on, including my mom and dad, who had to walk probably 5 miles chasing us around!). Thank you so much Anthony for proposing the idea and helping take charge of organizing everything! Thank you also Ivette for helping organize everything and the
The final roster:
Alex Mollazadeh
Anthony Lok
Bobbie Domingo
Chris Oberle
Dan Jacinto
Dave Sabo
Edmund
Gerardo Lopez
Ivette Flores
Jeff Hsu
Joe Guintu
John Vcelka
John Wu
Kathryn Kinnier
Katie Caldwell
Larry S
Matt Dickey
Peter Papaioannou
Sandy Ding
TJ Roper
We all had bright orange Team Help Joe Walk t-shirts and were very much noticed by other people along the ride. ABC also hitched a camera on my bike to get footage for their story (more on this later)! I want to thank my team sooo much for enduring the bike marathon with me and pushing me along the way. Two of the most memorable moments I will take with me forever were:
1) Climbing a steep hill and my team cheering me on because it was super steep and tough. As my team started cheering, other people around us started cheering until there was a crowd chant of “Go Joe, go!” That pushed me even harder to use my arms that were at that point turning to spaghetti.
2) Approaching the finish line, achieving our goal of completing the race in less than 2 hours as a team with people lined up on both sides of the street cheering us on.
Not only did we have a great time, complete the race and earn our medals (everyone who finishes gets one), the team was able to raise an incredible amount of money! The team raised over $10,000!!! All of this went directly to medical expenses, including therapy (at Project Walk and Next Step Fitness—more on this later), hospital bills, recurring medicine and supplies and co-pays, among other things. Not only were we able to fundraise, we had some very, very generous sponsors.
Mechanix: http://www.mechanix.com/
Chivas Skin Care: http://www.chivasskincare.com/
Burning Sands Apparel: http://profile.myspace.com/index.cfm?fuseaction=user.viewprofile&friendID=47389776
Surfer’s Myelopathy Foundation (Non-profit under way. Website not yet functional, but check back often.): http://smawareness.org
Getting ready...
Team getting ready...
And go! The racers are on their way...
Go Chaminade (we even have the colors)!!!
Our team!
ABC interview (March 12)
So, my 1 year anniversary was spent going to therapy and getting interviewed by ABC for a Primetime special (medical mysteries) that is actually airing tonight (8/12/08). They were so great, nice, sensitive and receptive to my story. After telling my story over and over, sometimes I forget the severity of it and impact as it becomes redundant to me. However, every now and then, I get a flash and sense of how dramatic, drastic, catastrophic and unfortunate my situation is. I don’t like those days! But this day, the one year anniversary, it really hit me again, and everyone around me from Ivette to my parents and the rest of my family to my friends to the ABC crew—everyone was sensitive and supportive. Thank you so much for a great experience and helping me achieve my goal from day 1 of having this injury—getting as much information out there and educating people on this bizarre injury to hopefully prevent/treat it in the future. This is what Surfer’s Myelopathy Foundation also embraces and I am so grateful that they have taken on this endeavor as well.
The crew and producer (Christine)
The stars of the show...
HBO (March 10, 2008)
HBO stands for the Hyperbaric Oxygen Chamber that I used starting on March 10. I went 6 days per week and had a total of about 22 sessions. It was a challenging commitment, especially considering I started work the following week! After a few weeks of HBO therapy (March 20), I was able to slightly move my toes! It’s not every time and sometimes positional, but still, I had a connection with my lower body that I hadn’t had since my injury! The HBO doctor I saw said that he would have strongly recommended HBO therapy right when I was hurt. Although I was a year post-injury, the HBO treatments seemed to still have some positive effects.
THIS IS THE MY MOST RECOMMENDED COURSE OF ACTION FOR ANYONE WITH SURFER’S MYELOPATHY, ESPECIALLY DURING THE FIRST FEW DAYS.
I have seen what it can do first-hand. Also, considering the nature of the injury (vascular infarction), it makes sense to infuse oxygen into the body and open up the blood vessels to better the blood circulation. And apparently the risks are so minimal that the doctor explained that my greatest risk would be driving to and from the facility every day.
Return to work (March 17, 2008)
On
Deloitte has been so flexible and accommodating throughout this whole process. Their support has been incredible. Through my times in therapy, I heard some horror stories of people who got hurt and their work situation. Deloitte really cared about me and was so open and willing to help any way they could. More on my current work life later…
Next Step Fitness (http://nextstepfitness.org/)
These are now the people responsible for helping me get better! I continued to go to Project Walk about once per week even after I started work, but this became way too cumbersome and tiring, especially after a working hard and then having to drive 100 miles each way for therapy. Luckily for me, another spinal cord injury recovery center opened up in
Ben Thompkins fundraising
Imagine receiving an e-mail from an old friend in high school that you haven’t talked to since graduation. A pleasant surprise, right? However, when Ben Thompkins contacted a mutual friend, Anthony, who passed the message to me, he had more of an incredible message. His new clothing company, New Civilization Clothing (http://newcivilizationclothing.com/) would donate a portion of their profits to the Help Joe Walk fund. I was floored when I heard that he would do that. Especially considering that he’s just a start-up, to allocate a portion of your profits is amazing! I wish him all the best and encourage everyone to revamp their wardrobes with New Civilization Clothes, Mechanix gloves and accessories, Chivas soap for everyday use and Burning Sands clothing for any customized clothing work you need done J And tell all your friends about Surfer’s Myelopathy and Surfer’s Myelopathy Foundation!
Flip cup tournament (August 9, 2008)
This is another demonstration of unbelievable love, care and support. Allison Conkright, my good friend’s (shoutout to Brian) sister, organized an amazing event last Saturday. It was a brilliant idea and everyone had fun! I had such a great time with all who came from friends to co-workers to new friends I made that day! She was extremely organized for the flip cup tournament, had great prizes and really has a lot of friends! We raised enough money for me to cover this month’s therapy which tops off at about $1000 per month, and then some left over to pay for other medical expenses.
Some of Ivette’s close friends (who I have now adopted as mine too) have held two fundraiser happy hours now in
Ok, so all of the above stuff was nice and all, but here’s where I’m going to start “journaling”, where you get to some insights into my mind, how I’m feeling and my day-to-day life.
Diabetic guy in
The other day, I was with Ivette and her mom on
That interaction really got me thinking. Having been through this whole medical/insurance process, it’s not easy. I have racked up more that $500,000 in medical bills that insurance has paid for, which is awesome. It really makes you feel a little better about paying those monthly premiums. If this number surprises you, I was not so lucky in that spinal cord injuries have the infamous title of “Most Expensive Type of Injury.” In addition to this, I have racked up between $60,000 and $70,000 out of pocket expenses. Through all of the fundraising efforts, we have raised about $50,000 which blows my mind and is incredible!!! Everyone around me has really been a blessing from God and I cannot thank you enough for your support.
I have followed up with insurance for the out-of-pocket expenses many times and still am trying to get things covered, but it’s really almost like a full time job going through the appeal process, etc. I also want to add, for those of you who have donated and have not received a thank you card, I AM TRULY SORRY. It is coming soon! It is inexcusable the lag it has taken me to respond, but I really am truly thankful and grateful. Check your mailboxes soon!
Anyways, sorry about that tangent, but that just goes to show that any one of us (i.e. me), with a good job, good insurance, etc…could easily sink into an inescapable debt. But with your help, support and prayers, I have been able to offset much of the medical costs. Yes, I am still in the hole, but it’s not nearly as bad as it could be. So, to bring about my point, without the help and aid from my peers, I very well could have had a similar fate to that man—on the streets and begging. I don’t know his case or scenario, but being $60k to $70k in debt would surely be an incredible challenge.
Fundraising dilemma
This brings me to my next point. When we first started fundraising, I was VERY, VERY uneasy. I hated asking for help. Not only because of my own pride, but also because I thought it was a symbol of some sort of resignation to the injury. However, when the costs were mounting as greatly and quickly as they were, I felt like it would really be helpful. Imagine, having to ask your friends and family for money when you are a young twenty-something trying to prove yourself and you feel like you are finally gaining independence and allowing your parents to sort out their finances after putting 4 kids through college.
Anyways, I am somewhat comfortable now with the fundraising as it greatly helps me and my family and actually provides additional fuel for me to keep on fighting. However, I know some people wonder how it is $60k to $70k. I work for Deloitte and as a true accountant (although I do IT stuff mainly), I have kept a complete and itemized list of all of these expenses, receipts included!
Stem cells
Another endeavor I am exploring that I had previously 100% shut out as a possibility in the past are stem cells. I know what most of the doctors in the
Difficult daily schedule and life changes
Life is hard. Everyone can attest to that statement. But it’s just that much harder for me right now, adjusting (temporarily!) from walking and being fully functional for 24 years to doing everything without my legs. Not only is day-to-day life stressful, more time consuming and more logistical than before, it’s a physical, psychological and mental battle.
I continue to stand by my motto of “I’ll figure it out” to any situation. I can do pretty much anything I did before; some things are just a little harder now. Although I would like to think that this evil or this injury has not changed me at all, it has. I feel like I am no longer as carefree and easygoing as I used to be. I attribute this to the key word of my life that I have to figure out every day: logistics. Whereas before I could go anywhere and do anything and just figure things out, I HAVE to figure things out now, and sometimes the logistics become very complicated in the process. With the logistics, it makes it more difficult to go some places, although I still go on occasion. For example, going out to bars/clubs. I’ll go on occasion, but not really as much. Imagine going into a crowded place where you always have to play Moses. Also, when the music is loud and people are talking, it’s amazing how different having a conversation is 2 feet below everyone else’s level.
As I mentioned previously, I returned to work in March. They have been incredibly flexible and bend over backwards to help me. However, life still is difficult as I still go to therapy twice a week, which ends up being physically and mentally tiring. After an exhausting therapy session, I usually need to put in a few more hours that night or the next day to make up the time. Again, they have been as flexible as possible, but I guess it’s just the nature of the beast working and continuing intensive therapy. Man, I miss those days when I could just be normal and have a normal schedule, get off of work and then have time to myself. Now that’s broken up into therapy sessions, leaving even less time to do things I want to do or need to do (like sleep!).
Improvements!
So, as mentioned above (if you’ve made it this far!), I did have some voluntary toe movement after a number of HBO sessions! I can’t do it all the time, but still keep on trying. Also, last week on the gait trainer (treadmill), they usually manually walk me and support my hips as well to move in a correct walking motion. Last week, they were able to let go of my hips and they were self-supportive! The hip swings were in sync with the leg movements, keeping me relatively stable. A great “step” forward!
Also, last night, I was playing around with these braces my physical therapist got me that come up to just below my knees. My friend, Alejandro, was there and I put the braces on and pulled myself up with the walker. Then, on a whim, I told Alex to spot me as I tried to walk with the braces. Depending on your definition of “walk”, I walked! I had the braces on, using the walker, and was able to finagle my way a little bit around the room on two legs! It wasn’t necessarily pretty, fast or even completely functional, but I was amazed that I was able to get myself from point A to point B again on 2 legs! I need to video this and I will post a video. I think I cheated a little bit with leans, hip hikes and using my arms, but still, I was doing it!
So, that’s my update for now. Busy with work, life and getting through these challenges. It really has become a big part of my life, unfortunately, but I will not give up. I will walk. I will run. I will fly. Maybe not fly. But I can’t wait until the day I pick up a basketball and run down the court again…
posted by Joe @ 2:50 AM
8 Comments
