Monday, December 21, 2009

Futuristic Science Fiction, Highly Avanced Mecha Exoskeletons & Wheelchairs?

I'm not sure if it irks anyone else, but I'm getting pretty annoyed with all these "futuristic"science fiction TV & movie plots that have characters still rolling around in wheelchairs.

Those of you that know me personally, know that I'm a huge geek when it comes to video games and anime. I pride myself in my anime collection, which includes DVDs from almost every genre out there. I have a really wide range in taste when it comes to movies and TV in general. I enjoy plots that can make me cry and/or laugh and I can't stand predictability. Above all, I like movies and TV shows that make sense. Let me pause here and clarify. If I'm watching a movie deemed "comedy" I expect to laugh and assume there might be over the top outrageous antics. If I'm watching a fantasy (like Harry Potter) it's ok if the characters use magic or have fantastical creatures.If I'm watching science fiction, I do want some of the plot to be based on actual science. Although "science" fiction is "fiction" it should still incorporate logic and science based on what we know. Don't get me wrong, I love fantasy and imaginative things like alien worlds, futuristic technology and space travel. Fantasy is great, but only to a point if the writer wants to convince me that the story has any substance or connection to science. If the story is seemingly all over the place and basic things don't make sense they should label it as fantasy. I'm not talking about complex principles (I'm no scientist). I don't sit in front of the TV picking apart every detail, or double checking equations and physics. I just can't stand it when something in the storyline stands out due to lack of common sense.

I own (and have watched) quite a few "mecha" genre animes and movies. The underlying plot is basically always the same; futuristic society (20xx), huge robotic exoskeletons used in combat, outer space and/or post apocalyptic Earth. The new movie Avatar fits the bill for most of the factors I just mentioned. I had heard the movie hype and seen ads on Nickelodeon for the cartoon series, but knew nothing about the storyline. It wasn't until the other day that I saw an actual trailer for movie. It seemed really cool at first, but then...BAM! The glaring paradox that's been plaguing me for some time now in other shows as well; the main character is in a wheelchair. It's like for a split second the gears in my brain screech to a halt. "Say what?!" So let me get this straight, it's an extremely advanced future Earth society that has technology like bio tech exoskeletons, can travel through galaxies (mind you that would mean we somehow figured out how to travel faster than the speed of light; something Einstein's theories can't even explain), have advanced bases/colonies outside of our planet and in many cases sophisticated androids, but somehow fixing paralysis slipped through the cracks?!

I haven't seen Avatar (I hear it's great), so I can't comment much about the storyline, except for the fact that it takes place in the 22nd century (2154 I believe)and the main character is a supposed ex-Marine who was paralyzed from the waist down in combat. I guess that means James Cameron doesn't foresee a cure to paralysis for at least a couple hundred more years. Unfortunately, he's not alone. There are a slew of anime that follow this formula too (Aquarion, Code Geass, Tekkaman Blade, Gundam Wing, Dominion Tank Police & Basquash!) and it makes me wonder why. How does no one else notice this huge contradiction? Do people really not care if a movie makes no sense or hasn't a shred of plausibility? Why is it that these writers choose to make characters in futuristic stories disabled?

I'm probably more acutely aware of this flaw because of my own disability, but the fact still remains that this phenomenon exists; even if no one else seems to notice. I can't help but think that writers choose to make these characters disabled to make them more sympathetic to the audience. Everyone loves the underdog right? The anime series Code Geass and Aqaurion even take it a step further by having blind paraplegic characters. Geez! Mind you, these characters exist in supposedly highly technologically advanced societies. Part of me can't help but be cynical and laugh.

I've put quite a bit of thought into it and maybe these writers do have some validity in creating this type of future. A future where technology in warfare and exploration has advanced past what we now deem as impossible, but medical and health issues have yet to be resolved. When I think about the billions that our government gives NASA to blow on frivolous projects, that type of future scenario does start to take root in logic. Don't get me wrong. I value technology and know that there are tons of helpful, practical applications created by NASA. I'm not knocking space exploration in general. I appreciate the value in the projects that orbit our planet (such as, satellites and telescopes), because we rely on these technologies every day and they help humanity directly. However, there are many other current initiatives the NASA has planned that make no sense to me, in terms of funding and time spent.
One example is the "Europa Jupiter System Mission," scheduled to launch somewhere between the years 2015-2025. The objective it to drill through the moon's thick icy surface with the hope of finding liquid water and in turn, possibly life (amoeba type lifeforms). How is it justifiable to sink billions & billions of dollars into searching for space microbes when we have millions of people suffering due to disease and disability this very moment? Are our priorities so out of whack that we'll be able to travel to distant planets before we figure out all there is to know here on Earth? It's a very scary thought.

I often feel like I'm one of the few people that pays attention to the world around me and considers what implications our decisions will make on the future. Our leaders (the whole system in general; mayors-president) say they have the future in mind, but seldom back their words up with action. Global warming is a prime example of our society's apathy towards the future. So many people only understand or care about their immediate comfort and I think that's really sad.

I can't speak for the writers of the stories that I mention earlier, but I am very curious as to why they envision a future swarming with technology beyond our dreams and people still in wheelchairs. I would like to think they are trying to prove some profound point, but I am banking on the theory they just see handicapped characters as more likable and sympathetic. I wonder if it ever crosses their minds how absurd (or how negative)it seems to portray humanity's future still riddled with disease and paralysis. I'm not saying our future should be envisioned as a Utopia, but you'd think we'd at least have cured cancer and AIDS and be able to repair the central nervous system after some two hundred or more years of research.
Maybe I just over analyze things too much. I'm curios to hear other people's opinions and theories.


FYI-I'm also a stickler for movies following the original plot of the book, but that's a topic for another blog!

Sunday, December 20, 2009

Holiday Stress & Last Minute Gift Ideas

I’m feeling a bit stressed out, which is pretty normal for me during the holiday season. The holidays bring about so many mixed emotions. This has been a stressful time of the year for me my whole life. Growing up with two sets of parents (both divorced and remarried) can get overwhelming at times. You can’t be at two places at once, so you end up celebrating the same holiday multiple times. The celebrating, food and spending time with the family is always great; it’s the traveling & running around that is exhausting. Just getting to see the whole family can be challenging (for big or divorced families), not to mention attending holiday parties with friends and coworkers or spending time with your significant other’s family. Although I still do enjoy the winter holidays, some years I’ve felt like I needed to take a vacation to recoup from my winter holiday (be it school, college or working as a teacher).
The gift giving factor is what really makes the winter holidays (Hanukkah, Christmas, Kwanza, etc) more stressful. I’m the type of person that loves to shop and when I was still on my feet I’d stay at the mall for hours and get all my Christmas shopping done in one day. I find shopping in the mall less enjoyable since my accident, because it’s much harder to maneuver a wheelchair through big crowds. You would think a wheelchair would make it easier to be noticed and that people would take extra consideration in letting you get through the congestion of shoppers, but I find that most people walk around in a daze or are too focused on themselves to pay attention. Not to mention, people have a tons of bags, boxes and other obstacles to get tangled in. The stores themselves are not really laid out with wheelchair access in mind either and it can be difficult to impossible to pass through narrow rows of merchandise. There are even some stores I don’t even try to enter (like Claire’s) because they are so tiny to begin with and I usually can’t see half the merchandise over people’s heads.
It can get quite expensive when you have to buy for double the amount of people (two sets of parents, four sets of grandparents, siblings, etc). I don’t mind spending money on my loved ones (if I have it). In fact, I rather enjoy gift giving. It’s the process of finding and choosing the right gift for each person that can be a hassle. Having picky or difficult people to buy for can make staying on a budget challenging if their list of wants is small. I’m pretty fortunate in that most people I know are easy to buy for, because they have hobbies or specific interests. Luckily nowadays almost all stores offer online shopping as an alternative. Most websites even let you create wish lists, which is very helpful! Wish lists provide the buyer a range of things to choose from and the receiver still has some element of surprise when they are opening the gift. Wish lists are great because they remove the stress of figuring out things like sizes and colors. These days I do almost all my shopping online instead of going to the mall and wished all my friends & family would send me wish lists.
I tend to wait last minute to shop for other people, because it kills me to wait to give the gifts. If I shopped for Christmas in October, I’d end up buying double; having already given the first set of gifts away. When I was on my feet I could wait until December 22nd and still get everything accomplished. Online shopping requires more time and planning, because you have to consider the time it will take the items to be delivered to you. Naturally, most sites offer fast shipping alternatives, but be ready to pay an arm and a leg for it. I don’t think it’s worth buying something online if I have to pay half or more than the cost of the item itself in shipping fees. Convenience is nice, but it’s absurd to pay double the price of something I could buy around the corner. This year I’m stuck going to the stores, because I’ve procrastinated too long and have yet to buy a single gift for any of the adults in my life (shopping for kids is fun). I’d much prefer doing everything online, but that’s what I get for continuously putting it off.
If you still haven’t tried online shopping, I recommend you do. The important thing to keep in mind when you shop online is keeping your credit card information secure. Only shop on big name websites that represent well known retailers such as: Best Buy, Target, Amazon and ToysRUs. You might find seemingly great deals on smaller websites, but you are taking a big risk trusting “mom & pop” shops with your info. A smart thing to do is set up a PayPal account. PayPal is a service that acts as an intermediary between your bank and the retailer. They keep your info secure and a lot of retailers let you pay using PayPal (even smaller businesses). Try to minimize the number of websites that don’t accept PayPal; the fewer sites that have your info, the better. Most websites let you create an account, which can save your shipping and billing addresses along with your credit card info. I normally create accounts for the convenience of saving addresses and the ability to track my orders. However, I do not recommend saving your credit card information on multiple sites. Most online stores have multiple payment options and you can tailor your account to only save certain information. You can easily keep track of what you buy by having the order confirmations emailed to you or you can print out a paper copy. Online shopping is also a fast and easy way to compare store prices and read reviews on products.
If you are like me and are still looking for ideas and/or still have shopping left to do, I have a few suggestions that might help you out. As I said before, I know how hard it can be to choose the right gift for the right person. It might seem even more difficult when shopping for the people in your life with disabilities. The first obstacle can be the high price of anything labeled for use with people with disabilities. In my experience, I’ve found the equipment and supplies I use are almost always marked higher if they come from a store that is geared to sell to the disabled and/or medical community. It’s a sad fact. In many cases high prices are caused by the need for customized products and/or because manufacturers aren’t producing modalities and equipment on a large scale. That said, there are some really great gifts out there and many of them don’t require specialty shops. Some gift ideas just require a little ingenuity and creative thinking.
Although I chose these gift ideas with the disabled community in mind (spinal cord injuries and paralysis in particular), they are applicable to everyone. Here are a few of my suggestions for this holiday season:
1. I think we all too often forget that during the holidays our focus is supposed to be on the spirit of giving, spending time with loved ones and in many cases, religious traditions. Somehow those aspects of the holidays often get lost in the hustle and bustle of our commercialized society. That said, I think the very best gift you can give is a donation to a charity in the name or in honor of the person you’re buying for. For someone such as myself (with a chronic disease or permanent disability), I can’t think of a better gift. Giving to charities that support causes that the receiver deems important is like giving a double gift. You’re giving the hope to the person you gift and you give support to the cause itself. Most “causes” have official groups or organizations that raise funds for research for cures, awareness and/support. I suggest giving to well known organizations, such as The Christopher & Dana Reeve Foundation. There are even some websites that allow you to prioritize causes that are important to you and provide links to reputable charities; that way gift givers know exactly what causes/issues matter to you. www.giftback.com , www.justgive.org and www.heifer.org are three great examples of charitable donation gifting sites.
2. One of the hot items this year is e-readers. If you’re not familiar with the term, an e-reader or e-book is an electronical device that lets you store hundreds (even thousands) of books, magazines, journals and newspapers into a very convenient and small amount of space. The e-readers that are for sale all range a bit in size from about six to nine inches in height, five to seven inches wide and under an inch thick. They are incredibly light; usually weighing less than an average hardcover book. The big three right now are: Amazon’s Kindle, Barnes & Noble’s Nook and the Sony Reader. All three e-readers are fairly easy to use and can even be controlled using a mouth stick. All three e-readers allow you to purchase & download books using Wi-Fi, but you need to check coverage areas of each company before you buy. All of the readers use e-ink technology, which mimics the look of paper and doesn’t have glare issues like you’d have reading from a PC. You can even jot down annotations & highlight words in e-books and they all include built in dictionaries. While they all do relatively the same stuff, there are a few key differences you should consider.
• The Kindle has been around the longest and it currently comes in two models. The KindleDX is larger than most e-books at 9 inches, but it is still incredibly light & thin. Kindle DX gives you the option to read horizontally or vertically. Its unique selling point is its text to speech figure that can “read” text aloud. Unfortunately, the TTS (text to speech) feature is not compatible with all books. Some authors complained that it was discouraging consumers from buying audio books. I disagree. There is no comparison to a human reader versus a computer reader. TTS is nice for someone such as myself, because I can listen to books in bed without setting up all the equipment I need to read a traditional book. TTS doesn’t provide the tone or inflection a human reader could, nor does it understand the context of the words it reads. I view TTS as a convenient alternative to reading (especially for someone without hand function).Audio books are available as well if you get tired of listening to everything in a monotone, robotic voice. Kindles are only available through Amazon’s website, so your only way to test one out is to order one. You also need to buy all of your books and periodicals through Amazon. The nice thing is that the Kindle is ready to use straight out of the box. You don’t need a PC to access the web or use to the Kindle. There is a basic web browser included. It also includes 3G global coverage. There are no fees or contracts and Amazon will back up your books on their site. A couple of other selling points include: a built in PDF readers (or converter depending on which model), personal document service, Wikipedia, button controls for both left and right handed people and compatible applications for the iPhone and Blackberry.
• The Sony Reader comes in three models. The Pocket Edition , Touch Edition & Daily Edition, which is a bit larger than the first two. The Daily Edition is the closest in comparison to Kindle DX. It can be read horizontal or vertically and has 3G wireless capabilities. The unique selling point against the Kindle was its touch screen controls. However, the Nook also has touch controls and can compete directly against Sony Reader. There aren’t many unique things about the Sony Reader, but unlike the Kindle, you can see them in person and try them out in various stores. The other nice thing about the Sony Readers is the wide range of sites from which you can purchase books. You can find many books for cheaper prices or even for free. Sony gives you more buying options, whereas its two competitors make you buy books through them.
• The Barnes & Noble Nook was only just released (December, 2009), so there are still a few kinks that might need to be fixed and not many people have one yet. The Nook is available to try in person and the Wi-Fi service is free for all Nook owners, within B&N stores. That said, the Nook has a few unique features that make it stand out. There are two touch screens on the Nook; the upper area is for reading text and uses e-ink technology, while the bottom features a LCD scroll bar with color pictures of book covers (similar to iPods that can display album covers). The second feature exclusive to the Nook is the ability to share books with other Nook users. The LendMe feature is a nice option that many book lovers will enjoy because it allows them to share favorite e-books just the same as they would a paper copy.
My descriptions are good to get you started, but they are just short overviews. I suggest you visit each website and do a bit of comparison shopping yourself (www.amazon.com , www.sonystyle.com & www.barnesandnoble.com/nook ). Try reading reviews from nonbiased websites (www.cnet.com or www.pcmag.com are good) as well, not just the manufacturer’s websites. I’m leaning towards the Kindle for myself. I really like the TTS feature. The touch screen navigation is the only thing the Kindle e-books are lacking and I’m sure whenever Amazon decides to release a newer model it will include a touch screen as well. They are all a bit pricey (around $300), so you’ll want to weigh all the options. I’m an avid reader and although I love my books, they take up a ton of space. I think it’s pretty amazing to able to have a virtual library of books that can travel with you wherever you go! As a bonus, e-books are “green” in that they save paper and space. I think e-books are great gifts for anyone.
3. Getting dressed can be stressful for me, as I need help and have safety issues to consider. I tend to wear easy stuff like sweats and t-shirts if I’m just going to be in my apartment. I’d compare my style now (at home) to how I used to dress if I was going to the gym. I try to make life a little easier for my aides by only wearing my “normal” clothes when I have guests or go out. Much of my clothes from before my accident (pants especially) are no longer appropriate for me and I’ve given bags & bags full to charity. Being paralyzed and confined to a chair, I have to consider ways that clothes might damage my skin or create problems that I can’t feel. Poor circulation can create swelling, so tight or form fitting clothes can create pressure sores and/or constrict my catheter. I stay away from clothes with buttons, rhinestones, zippers or beading on the back, because leaning up against those things can break down skin quickly and create sores.
I can’t raise my arms over my head, which poses a problem for getting on certain shirts and jackets. Although the clothes technically fit me, most are not designed with disabilities in mind (it’s assumed that adults put their own clothes on).That doesn’t mean I have to wear hospital gowns or pajamas all the time. I can still wear trendy clothes as long as I keep those issues in mind and buy a bigger size if I’m unsure. If you are buying clothes for someone in a wheelchair you should keep the issues I’ve mentioned in mind. You might also want to check out specialty shops that sell clothes designed exclusively for people who use wheelchairs. I haven’t come across many that sell trendy or youthful styles (most are designed for the elderly), but you can find basics. www.professionalfit.com is one of the better sites I found.
4. My last gift idea is for the gamers in your life. Just because someone has a disability doesn’t necessarily mean they can’t enjoy the computer or video games. I was big into gaming before my accident and was really bummed out that I wouldn’t be able to play games again; after my accident, since I have no control below my chest. I only have use of my neck, shoulders and biceps. However, I’ve learned and/or invented ways that allow me still play games using a mouth stick. Luckily, there are tons of gaming options out there and hands are not necessarily required! Nintendo has developed some pretty innovative games/gaming systems that don’t rely solely on mashing buttons. Depending on the person’s needs and abilities, Nintendo Wii can be adapted to use with your arms, head or sip and puff. There are even sites that customize controllers to make it easier for people with limited hand function (www.gimpgear.us & www.quadcontrol.com). Nintendo DS is a portable system that has dozens of touch based games. You can figure out the game controls by reading reviews online (www.ign.com). Sometimes the back of the game box or online store description give enough information to determine if it’s touch based. I own over 30 Nintendo DS games that I’ve been able to play (and beat in many cases) by using a mouth stick. Ordinarily, a person with normal hand function would use the stylus stick that comes with the DS, but it’s a bit too thin and way too short to use by mouth. I adapted a mouth stick by adding a knitting needle inside of it, so that it has a pointy tip like a stylus, but is long enough to use. Using a mouth stick also gives me better control since it is thicker than a regular stylus and less flimsy.
As for the computer, there are hundreds of games that only require a mouse to play. I have a trackball mouse, which allows me to move just the ball and not the entire mouse itself (I use Kensington’s Orbit Optical Trackball, which only costs about $30). You can purchase games online or buy the software in stores. Most games in the following genres can be played by mouth stick: match 3 (such as Bejeweled), Mahjong, hidden objects (such the Huntsville Mystery Case Files series), simulation (such as Sims 3) and time management (such as Farmville). There are emulation programs that let you play console games (Xbox, PS3 & Gamecube for example) on your PC and users can customize key settings. Most console emulators are not licensed by the gaming companies, so I’d avoid going that route. Lastly, there are some pretty neat gadgets out there that can be used by people with little to no motor function; such as someone with a high level spinal cord injury like Christopher Reeve. These gadgets use eye movements or speech recognition to control a wide range of functions on the computer (www.nuance.com & www.eyegaze.com are two examples). You can surf the web and write with both types of equipment/software and even create art with the optical devices. This type of technology can be a gift of freedom to those people who are otherwise “locked in.”

I hope my tips are helpful. Even if you’re done with all your holiday shopping this year (you’re lucky!), you can use these ideas for any gift giving occasion. I will be braving the mall and the crowds this year (and possibly snow). Try and choose meaningful & practical gifts that fit in your budget and remember that the presents aren’t the most important part of holidays. Wishing everyone a happy and safe holiday season!

Wednesday, December 9, 2009

Hacked

I’ve been playing this online game called MapleStory (MS for short) since 2006. A friend introduced me to MS when I was still living in the nursing home. I was big into gaming before my accident & it stinks that I can no longer play 95% of my console games. At the time of my accident I had Nintendo Gameboy SP, Gamecube & Xbox. Since I can’t use my hands I’m limited to hitting one key at a time with my mouth stick. Most modern games require multiple button combos to play, so when I found MS it was awesome to be able to adapt the controls and be able to play with my mouth.
For those of you that aren’t gamers, MS is what you call a MMORPG (Massive Multiplayer Online Role Playing Game). MMORPGs consist of thousands to millions of players. You create a character and name and you can play with and interact with other real life people. Most MMORPG have loose open ended storylines that allow you to choose from a variety of things to do and allow you to customize your experience. The game worlds are online social communities which allow you to meet new people, play with friends and work as a team, to meet objectives, win achievements and/or complete quests. Typically there are specific class types, which you choose from early on such as; warrior, mage, archer, bowman, ninja and pirate. Some games offer subclasses as well. Your class determines what kind of equips, weapons and items you’ll need and which skills you’ll acquire. You advance in level and skills through gaining experience, which is usually given in points that correlate to the monsters you kill or as rewards for completing quests. Each subsequent level requires more experience points than the last level and special abilities and skills are usually increased with each level. Some MMORPGs charge subscription fees to play (like World of War Craft), while others offer free access. Although MS is free to play, there are tons of optional items you can buy to enhance your game play. In both types of MMORPG you gain an in-game currency, which you need to buy equips, weapons and items. In MS the game currency is called “meso.” In a free access game like MS it becomes increasingly harder to rely solely on game currency alone, so many people buy the optional currency to take advantage of the specialty items. In MS the cash shop items are purchased with “NX” which you can buy on the company game site or in gift card form.
Maple Story is unique in that it is a 2D side scrolling format; similar to the old 16bit systems, like SNES and Sega Genesis. Its cute anime inspired look and overall game design make it a family friendly game. The monsters and environments are adorable (most) and although you kill monsters, there isn’t the guts, gore and realism of other contemporary games. For the most part teamwork is promoted over competition, as there is little player versus player game play.
As I mentioned before, I was still living in the nursing home when I started playing MS. My time spent at the nursing home was the hardest and darkest period of my life. I was extremely depressed. Maple Story provided me with a much needed escape from reality. As corny as it sounds, MS played a huge role in helping me retain my sanity that first year post accident. It was a distraction from my sad situation. It gave me the opportunity to meet new people and hang out with friends, without ever leaving my room. In Maple Story I am the same as everyone else; no one can tell I play with a mouth stick unless I choose to tell them. Given my situation, it’s a good feeling to be able to fit in and feel equal to everyone else. MS gave me a few hours every day where I could escape reality and not focus so much on my sadness.
Gaming can be very addictive and there was a time when I played MS at least five or six hours every day. I don’t play nearly as much now, but it is still an enjoyable part of my life and I often use my time online to simply socialize. I’ve met some wonderful friends through MS, from all over the country (as well as a few other countries) that I would’ve never met otherwise. I have a lot of free time, being unemployed. Since I’ve been back in my own apartment I’ve become more involved with advocacy work, for finding a cure to paralysis. I’ve had opportunities to exhibit my art and have to split my time in the chair between work & play, so to speak. Overall, if I were to calculate all the time I’ve spent playing MS this past 3 ½ years, I’m sure I’ve easily invested several weeks of my life online. That probably seems excessive, but you have to keep in mind that I have way more free time than the average person and the first year I played I used MS as an escape. Being newly paralyzed and living in a nursing facility is a reality I’m sure anyone would like to escape.
I know a couple of people that play MS without spending money on NX, but on a whole, I’d say the vast majority of players invest in NX. It is near impossible to keep up with friends (level and skill) without NX. When I first started playing in ’06 the game environment was much smaller and most NX items were just covers for in game equips and weapons that didn’t have a functional purpose; purely cosmetic. As the game has grown, so has the cash shop. There are now certain aspects of the game that can only be accessed with NX (such as Amoria party quest). Most NX items expire in 90 days, so if it’s something you feel you need you basically end up spending what you might spend on subscription to other games. Since I can only hit one key at a time with my stick it has become increasingly more difficult to play without NX. There are certain items which I buy regularly to be able to play on par with traditional players (people that play with 10 working fingers). I rely heavily on my pet and pet equips to pick up items, mesos and use potions. If I had to pick up items myself or heal myself it would be too frustrating to play once I reach a certain point. Fighting monsters gets harder with each level and I can’t hit two keys at a time, so without NX items I’d have to constantly switch between attacking and healing. Not only would it slow me down, it would force me to waste tons of mesos on extra potions. Without a pet, I’d die very often, which is frustrating and wastes time and experience points. I keep a regular stock of safety charms; in the event I do die my charm saves me from losing experience. At high levels (120+ out of 200) it can take hours, if not days to gain a level, so if you die without a charm you waste a significant amount of time. There are special tickets which double points and drops. I buy double experience regularly. I level much slower than most players as is, so 2xs experience helps me to keep up with friends. On average, I spend $40-$60 every 90 days, which is comparable to subscription fees. There are times where I’ve been playing more often and I tend to spend even more during those periods. I like NX items; they make the game more enjoyable for me. On a whole, I don’t mind buying NX. I look at buying NX like buying console games, which I used to spend just as much on, if not more.
You gain game currency (mesos in MapleStory) by killing monsters, doing quests and selling rare game items. Many people (including me) make tons of mesos selling equips, scrolls and rare items. Some rare items are monster drops, while others are won in gachapon (a lottery type game feature which requires NX tickets to play); both methods rely solely on luck. Rare items and good equips (give high status boosts) can cost several hundred million mesos! Since the prices are set by players the prices/value of items fluctuates. You also use mesos to buy potions to heal or boost stats, as well as use certain in-game services, such as; transportation between areas and item creation. I’ve easily made and spent billions of meso over the past several years. I’ve had a few lucky sales (most recently I sold an elemental wand for close to 900mil meso) which in turn, allowed me to buy really good equips and rare collector items like chairs. My account consists of a 4th job level hero (133/200), 3rd job level priest (114/200), two 2nd job characters and a low level character for storage.
The difference in buying a game outright versus subscribing to game access or buying digital items is that there is a much higher risk of losing your investment with online games. I can hold a Gameboy DS game in my hands. I know my console games are here, safe in my home, available to use at anytime and only cost me a onetime fee. Since I started playing MS I’ve easily invested hundreds (maybe even over one thousand) of dollars over the past 3-4 years. Again, that might seem exorbitant to a non-gamer, but keep in mind that console game systems cost $200-400 for the system and $20-60 per game. The good news with console game systems is that you can trade them in for a little cash towards a newer model and short of a burglary on my home, my investment is safe and sound.
Maple Story is the first and only MMORPG I’ve ever played. It is also the first online game I’ve invested real money in (buying NX). In terms of overall investment, I’ve dedicated almost 4 years of time and had built up an impressive collection of equips and items. I’ve always known that hackers existed in MS. In fact, they were everywhere when I first started playing. You could see them fighting with no damage, vacking all the monsters and items off of map, botting or stealing drops. My second year playing there was a massive hack of most guilds, in which most guilds in my server (Windia) were disbanded. Since the guild hack I’ve been paranoid to accept trade requests, I avoid hanging out in the free market and I disable my chat and trade abilities. MapleStory security has improved a lot since I began playing and I actively take my own precautions. At least six months to a year ago I switched from using Internet Explorer to Mozilla Firefox because I read about hack threats and a few friends suggested the switch as well. I’ve changed my password and pin over time and I stay away from sketchy websites. I seldom use instant messages & when I do it’s with people I know. I don’t add random buddy requests. I have a pop-up blocker and subscribe to Trend Micro antivirus software, which in theory, gives me my own firewall and protection.
All that said, I sign in to play MS today, only to discover I’ve somehow been hacked. Needless to say, I’m devastated. I could see if I was completely na├»ve and didn’t take any proactive steps to protect myself; the fact that I do and yet I still got hacked makes me furious as well as crushed. How much more do I have to do to protect myself? What is my antivirus doing? It’s designed to provide me with “internet security,” but given this incident, clearly my information is not secure. Putting the time factor aside, the hacker stripped my account clean off any/all equips worth meso, including (off the top of my head because 1- I didn’t keep a running inventory of my things, 2-I’m too flustered at the moment to try and make a comprehensive list & 3- It’s highly doubtful Nexon will reimburse or return anything); two devil sunrise swords (mine being 116attack), toy maker equips, round pink chair, Olivia chair, countless scrolls, all the inner tubes, another 100+ sword, all the holiday even equips I collected (which is almost all of them since Halloween ’06), priest equips that gave me +50int stat boost and the 700mil mesos I had in my storage. So in essence, I was robbed of at least $300 in permanent NX items/modifications, easily 1-2bil mesos worth of equips and 700mil in fluid mesos.
I sit here scratching my head at how I was hacked and whether or not the theft will only include my MS account. Should I be panicking because I paid bills online today? Are my bank accounts next? I feel overloaded of mixed emotions and many questions. Most importantly, is the invasion over? Although they might seem like pointless pixels to some, I was robbed of items that were rightfully mine. Unlike a house robbery or mugging, there is no insurance to cover my virtual property. I feel just as violated. It doesn’t matter that the stolen goods were virtual. They were my equips, my items, my account; paid for with actual time and money. What if anything can be done? I’m going to report it to Nexon (company that owns MS), but what will they do about it? Given how easy it is to trade, drop or sell items, is there any way to trace my things? Even if they could find all my things, what happens to the person that buys them thinking the seller is a legit player? Will they return my 700mil mesos, if nothing else? How can I prove what I lost? Then of course there’s the bigger concern of all the other potential info and virtual things I own. Why is it that I use a paid antivirus program and hackers still broke through?
I was on MS just last week and all was well. Whenever the account was hacked has got to be in the last 10 days (at most). In terms of my actions, the only thing I can come up with is the fact that I used Internet Explorer this past week. The Trend Micro software and a couple other programs use it as a default browser and a couple of flash games I like work better. I did a manual scan (right after I discovered I’d been hacked) & sure enough, it found a bunch of cookies; thanks to Explorer. Why is it that threatening things are blocked on Mozilla and get through on Explorer? I’d gladly take Explorer off my computer, but I tried that once in the past & Windows did not react kindly. Besides, the damage is done.
This whole experience has left me angry & feeling vulnerable. It saddens me to quit playing MapleStory. I’ve had a lot of fun playing. I’ve seen dozens of players come and go these past four years. If my buddy list, guilds and general experience are representative of the MS community, I’d say I’m one of the few (out of millions) that have stayed relatively active for that long. Nexon will be losing a reliable, dedicated customer; whether or not they care is questionable. I’m wondering what to do next. Regardless that it’s a bunch of pixels, it was a collection of things I worked hard to get (Hard in terms of gaming; I realize it seems trivial in terms of life and importance in general.). Legally speaking, I paid for quite a bit of it with real money. With everything I’ve been through in my life; divorced parents, the death of my sister, my accident and subsequent paralysis, this doesn’t rate as super high in terms of trauma. It is the principle. MapleStory has played an important role in my life post accident and everything taken represents a collection of things that has given me a bit of happiness, despite my lowest times. It’s not the first time important things have been stolen from me. Lord knows, my accident robbed me of an entirely different life.
The computer empowers me and gives me freedoms to control my personal info, shopping, banking, socializing, advocacy and bill payment. If I can’t trust “secure” sites like Facebook, Yahoo, Best Buy, Bank of America or Internet Explorer at all, how can I safely use the internet? I’m shaken, disappointed and confused on where to go from here, in terms of my virtual life.

Friday, December 4, 2009

One step forward. Two steps back.

Two weekends ago was awful. I thought I had caught the flu. My everyday life is enough of a struggle as is, and being super ill on top of things is just unbearable. I started out on that Wednesday, with just an annoying tickle in the back of my throat. Unfortunately, it quickly turned into an achy chest cold by the next morning. I tend to panic whenever I develop a cold, because I'm afraid I won't have enough lung power to cough properly. The more I cough, the more tired I become. If I’m really having difficulty I need someone to roll me onto my side and pound on my back. The tiniest bit of mucous can take me 20 minutes of coughing, before I can bring it up & out of my lungs. It makes me very susceptible to bronchitis & pneumonia. Despite all my efforts, I still ended up with a small amount of fluid in my lungs, by Saturday. So my nurse called the doctor and he prescribed an antibiotic over the phone.

I'm normally very hesitant to take antibiotics, as they can wreak havoc with my bowels. Going to the bathroom is one of the few things that still stress me out just as much as it did when I first got hurt. It's a subject I don't normally like to discuss, but I find necessary in this case, since most people have no clue just how awful the process is. As crazy as this sounds, I'd gladly give up food if there was a way to get my nutrients and never have to go to the bathroom again. Unfortunately, I'm out of luck. Instead, I have to live with tubes coming out of places they were never meant to; along with having strangers (nurses) manually force my body to go, every other day. The catheter required surgery to “install,” for lack of a better word and the sight of it disturbs me. It is also responsible for one of the many scars I’ve accumulated since my accident. Not to mention, having a catheter makes me prone to having urinary tract infections, that at times could become lethal. All that just so I can live a somewhat normal life, without having to worry about having accidents (like a small child). I doubt it's something I'll ever be comfortable with and I'm always on edge worrying about it. Given the everyday trauma factor of needing a bowel regime, I certainly don't want to mess with system and make it even worst. The down side to holding off on antibiotics is that I end up having secondary symptoms that last long periods of time. Slight discomfort is still better than the risk of having an accident. Pick your poison.

I hate having to choose between two undesirable options. Incontinence is embarrassing and upsets me every time it happens. No matter how many times my nurses or family try to brush it off like it’s no big deal, whether it bothers them or not, matters little to me. I could care less that “it’s a natural body function that everyone does” or that “everyone knows I can’t control it.” That’s the problem! I can’t control it. It’s very easy for other people to expect me not to get upset, because they don’t know what it’s like. The average person doesn’t have to worry about soiling themselves every time they go out or have company over. Although it doesn’t happen often, it makes me anxious and creates extra stress, which in turn, makes me not want to go out at times. I think it’s especially bothersome to me (in comparison to other people I know), because I had a lot of “issues” before my accident as well. I’ve been uptight about going to the bathroom my whole life. I’m sure it’s difficult for men to understand, but we women have so many more obstacles to deal with than they do. I could barely bring myself to pee in a public restroom, let alone anything else. Even then, I’d have to strategically put down toilet paper on the seat and then do a balancing act to flush with my feet. On long trips I carried a “survival kit” of travel toilet paper, mini cans of Lysol, hand sanitizer and baby wipes. Some would say I was a bit neurotic. However, given my past behaviors, it’s easy to see why I have such hard time dealing with my current situation. It’s unbearable needing help with such private things.

Since I already had fluid in my lungs, I felt I had no choice but to take an antibiotic, even though I knew I’d be risking bowel issues. The only way to get the fluid out, besides coughing it up, would be to have it suctioned out. I had to get suctioned many, many times when I was newly injured and it was always a horrible, painful process. My memories of the hospital are all very disturbing and the thought of having to go to the hospital terrifies me. The horror of ending up back in the hospital greatly outweighed the fear of incontinence. The hospital is potentially just as dangerous as it is helpful. I’m always afraid I could catch something worst than I came in with. The hospital is also extra scary when you’re paralyzed. In my experience, the staff is never really prepared to deal with someone that is fully paralyzed. I need a special call button that I can tap with my head; without it, I have no way to call for help. I’ve actually been told “to scream” if I need help. Then, there’s the fact that if I’m hungry, thirsty, bored or uncomfortable I have no way to help myself. Being in the hospital is always uncomfortable and extremely lonely. The nurses and doctors always have other patients, so it’s not like they have a lot of time to check on me or help me with little things, like taking a sip of something or changing the TV channel. The worst part is the flood of horrible memories that come back when I enter a hospital; sleepless, lonely nights, fever induced hallucinations, the fear of dying and the powerlessness of being hooked up to machines. The thought of having to relive a moment of those memories and the fear of getting worst made it an easy decision to take an antibiotic.

Thanks to my bad luck, the antibiotic that the doctor prescribed made me feel worst than I did with only the cold. The first day I assumed all the terrible side effects were flu symptoms. I didn’t figure out it was the medicine until the second day. The doctor gave me Clarithromicin for the congestion as well as Musinex. Both pills are meant to last 12 hours. Shortly after taking them I felt like I had swallowed a basket ball. The pressure in my stomach was awful! I could have handled the pain, if it weren’t for the nausea that came with it. I haven’t thrown up since my accident. Thank God. I was in so much pain and the nausea was so horrible that I was willing to try. It’s scary to think about having to vomit because if I’m laying down flat there’s the potential of aspirating. The thought of dying that way isn’t very pleasant. Although no one enjoys throwing up, it’s so much more stressful for me now than when I could just get up and run to the toilet. Even after I had everything ready and I was ready to try, I had no success whatsoever. I’m sure anyone would agree that nausea is enough to make anyone miserable. I tried dealing with it the best I could. I had my sister put me on my side in a fetal position the best she could, (something about curling up into a ball has always helped me with nausea) in hopes of making it more tolerable. Unfortunately, lying on my side is extremely painful to my shoulders after a short amount of time, due to the fact that my muscles or so weak. I was physically and emotionally drained by the first night. I hadn’t been sleeping well because I had to sleep partially sitting up for a couple nights before the medicine and being nauseous on top of sleep deprived was enough to put me over the edge.

I normally do a good job of appearing like I’m ok, but the combination of lack of sleep & the nausea was too much. I lost it. It’s been a very long time since I’ve felt that depressed and/or desperate. It’s difficult enough to deal with the day in and day out issues that come along with paralysis and feeling sick and in pain made everything seem a million times worst. All I could do was cry and pray. You’d think after a certain point it would all seem easier or that you’d adjust over time, but I felt as if I’d been warped back to those first few months after my accident. All the fear, pain and anxiety came rushing back and overwhelmed me. So many questions come to mind and it’s so frustrating to never have answers. It’s times like these, when I’m most vulnerable and all the doubts and regrets I have feel like they’re enough to crush me. The same questions repeat themselves over and over again and four years post accident I’m no closer to figuring them out; “Why did this happen to me?”, “Why did I dive when it’s so out of character for me?”, “Am I being punished?”, “Why do I have to pay such a high price for one mistake, while people do stupid things every day and walk away just fine?”, “Why are there rapists, murderers and pedophiles out there enjoying a healthy life, while I’m confined to a chair?” The list goes on and on. I’m guessing most people in my situation go through a similar emotional rollercoaster ride and I often wonder how they cope with everything.

I often wish I had a stronger faith in God. I feel like I’d be more at peace with things. I’ve never been a strong believer in any specific religion, despite being brought up Roman Catholic. My accident awoke the desire to believe in something. I can remember being under the water, positive I was about to die and feeling so scared about what would happen next. Up until that point, my belief in an afterlife or greater being was non-existent. I believed as a kid, but became cynical over time. My mom’s two divorces and my sister’s death, among other things, created a lot of doubt and slowly ate away what I’d been taught to believe.

Shortly after my first brush with death I had another experience that shook me to the core. What I thought had been a nightmare, I now know were hallucinations, brought on by high fevers. In ICU and in rehab I had fevers over 104, so the near drowning was only one of several times I almost died. The things I experienced during the hallucinations were terrifying. They weren’t scary in the classic sense, like vampires or zombies; they were scary because they felt as if they’d never end. I sensed I was close to death and at times I was convinced I was already dead. I’d hear the voices around me and I’m guessing I was drifting in and out of consciousness, because I’d see the nurses, doctors and aides and things around me. I was aware of being brought to different tests; MRIs, X-rays and surgery, but I had no sense of time. It felt endless. I felt as though I must be in hell, because of the pain and fear and what seemed like a never ending repetition of the same things, over and over. The overwhelming sense of eternity was horrific. I tried calling out to every God or deity I could think of. I panicked each time there was no response and I can remember thinking, “What if we had it all wrong? What if we humans didn’t know God’s name? What if my non-belief meant God would never hear me?” I tried everything I could think of. In the end, I just cried and begged that it was all a terrible dream and that I’d wake up and it would still be June 4th, 2005 and everything would be good again. Part of me is still hoping to wake up. The other part of me will never be the same after that experience.

It was an awakening, in a sense. Although I’m still not sold on any one faith, I’m trying hard to believe in something. I feel like if I had faith I could relax in knowing all my suffering has a purpose and that there’s some great plan I just don’t know about. I’m hoping to find some sort of meaning that will give me enough strength to keep moving forward. I’m also hoping that there is something more after all this and that someday all the questions that plague me will be answered. I especially don’t ever want to feel that horrible, empty feeling of eternity.

Now that I’m feeling better, things don’t seem so desperate and overwhelming, but I’m a bit shaken up by it all. Thankfully, I figured out it was the antibiotic that was causing the pain and nausea. After three doses of the medicine and two days of hell, I’m feeling much better. The hard part is waiting for the memories to fade. It’s been awhile since I’d been in such a dark frame of mind and the memories that I thought were dull sprang back to life. My life always seems like the saying, “One step forward. Two steps back.” These past couple of weeks I’ve spent trying to regain some of the emotional lost ground, so to speak.

Tuesday, November 17, 2009

Technology gives a paralyzed artist a new way to express himself through art.

My brother-in-law sent me this article/video (http://gizmodo.com/5403741/eyewriter-allows-man-to-paint-despite-paralysis). It is a great demonstration of how technology can open up new possibilities & return independence to people with disabilities. As a disabled artist, I can certainly understand how liberating the creative process can be. Painting is one of few things that I can still do (with a limited amount of assistance to help set up). I feel as though I can relate to the man (Tony) in this story on many levels. He is completely paralyzed, due to ALS, but was a gifted graffiti artist before his illness. I too am paralyzed (from my chest down) and have a background in art. Prior to my accident I was an art teacher. I was also studying painting at night. The love of art & the ability to still be able to express myself through painting, has been one of the few things that gives me the strength I need to keep moving forward.I am fortunate to have a bit more function than Tony, but I know the desperate feeling being locked-in your own body.Shortly after my accident I was placed on a ventilator and completely unable to move or speak. I know exactly what it is like to have your mind racing with thoughts and being unable to communicate them. Even now, it is extremely frustrating that I can't instantaneously jot down thoughts or sketch ideas as they come to me. Although I'm sure they've developed a system for Tony to communicate his needs, I'm sure it is only a fraction of what he'd like to say. Not to mention the fact, that you can only communicate when people are with you. It becomes impossible to communicate by phone or initiate conversations. I can remember my nurses, friends and family using alphabet charts and lists to help me communicate through a system of blinks. It was an arduous task to try and hold the most basic conversations. I felt frustrated and trapped during my time spent on the ventilator.Tony's condition, ALS, or Lou Gehrig's disease is progressive and I'm guessing he has lost function/mobility over time, and will unfortunately continue to degenerate in the future. I recognize the differences in our conditions, but feel the similarities are such that I can relate to Tony's situation much better than the people that wrote the article and filmed him. I can imagine what he's going through and what emotions he's feeling because I can draw from my own experiences.My paralysis is due to a spinal cord injury, which means I lost practically all of my function/mobility in an instant. After the initial impact of a spinal cord injury, the spinal cord swells and the body goes into shock. In my case, I only recovered movement/feeling in the areas controlled by the portion of spine at or above the injury site. Luckily, that meant I was able to get off the ventilator as the swelling subsided. Although it's not much, my ability to speak and move my head and neck has given me enough function to paint using my mouth. Painting has become a vital outlet for expression for me. Painting has also given me a sense of purpose.I'm not usually interested in gadgets. I'm always focused more on finding a cure to paralysis, than finding adaptive equipment. My aversion to "gadgets," as I always call them, is due in part to my stubbornness and refusal to accept my situation as permanent. Part of me feels like if I embrace life in a wheelchair whole heartily, I'm giving up my belief in a cure. I much rather invest my time/money towards finding a cure, versus the development of adaptive equipment. That said, I understand the quality of life factor and agree that gadgets play an important role in allowing people with disabilities to retain as much freedom as possible.I'm positive that Tony's quality of life has been improved by owning/using this eye writer technology. I think it's wonderful that he can express his thoughts and continue to share his artwork with the world. I've seen similar technology used to navigate the computer as well. It is amazing that these machines can interpret so many different commands from such infinitely small movements and blinks. I know that I would feel lost without my computer these days and devastated if I could no longer paint. The power of expression is an awesome thing. This eye writer technology can give Tony (and people in similar situations) the ability to express more than just his needs. He can express his thoughts and feelings through art in ways that might not ever be able to with words. Art provides an outlet for such a deep and complicated emotions and can be very therapeutic in helping people deal with traumatic situations. It's not often that a gadget catches my eye, but this is something that excited me and gave me a need to share the info with others. Brain power is so often wasted on creating trivial things or on inventions that ultimately hurt society (like bombs and weapons). I find it refreshing to see a device that has the potential to improve the quality of peoples' lives. The eye writer is a wonderful application of technology.

Monday, November 16, 2009

My new website

I'm very excited to announce that I have a new website. Although I've had a Myspace account for some time now, I thought it would be best to have my own domain. I use most of the popular social networking and media sharing sites: Myspace, Facebook, Twitter, Youtube and Flickr. It gets bothersome to keep up with all of them and they can be limiting to people that don't have/want an account. My new website compiles all of the websites I use into a concise, easy to use format. My new website will be constantly evolving as I make changes and update the individual sites I use. I'm hoping it will provide all my friends, families and readers an easier way to access information and keep in touch.
My main objective for having a website is to use the web as a means to spread the word about spinal cord injuries and educate others about paralysis. My secondary objective is communicate with family and friends. Lastly, I hope to network with other spinal cord injury advocates and people that are living with paralysis.
I've been blessed to be able to share my story and feeling through my paintings and writing. I'm grateful to have been given opportunities to exhibit my work and speak. I hope I will continue to forge new connections and find new ways to keep exhibiting and educating others. I'm hoping my new website will be a useful tool to help me achieve my goals and a resource to others.
I'm anxious to hear opinions & feedback, so please let me know what you think. Feel free to share ideas or point out areas that need improvement!

www.christinasymanski.com

One Degree of Separation Campaign

The Christopher & Dana Reeve Foundation is running a campaign called "One Degree of Separation," in attemps to help raise funds for research to find a cure to paralysis. Their goal is to raise $1.275 million. According to a 2009 study conducted by the CDRF, there are approximately 6 million people living with paralysis. Of the six million, 1.275 people are living with paralysis due to spinal cord injuries. The campaign targets those of us who have been impacted by spinal cord injuries. The mission, is to get each person in the spinal cord injury community (this includes, families, friends, doctors, nurses, etc.) to donate just $1 dollar. '
Nowadays one dollar can't get you very much. Imagine however, what an impact one dollar could make if everyone contributed. I think giving a dollar for a cure is certainly a bargain! A cure would be a priceless gift to those of us living with paralysis. One dollar is a small investment that has the potential to make huge impact on millions of lives.
The campaign also has a website where you can read stories and see pictures of people that are living with paralysis. I think it's a great way to see the diversity of the people affected by spinal cord injuries and puts it a face to the problem. It's wonderful that the CDRF took the time to compile these individual stories. The pictures and stories can touch people's hearts in such a way that facts and statistics can not.
Just remember that behind every statistic there is a real person. You'll find my picture and story on the site, among many others. I encourage you to take the time to read the stories and share the information with family and friends. Most importantly, please donate a dollar.
I've included a link on my website and below.
http://www.reevefoundation.org/

Friday, September 25, 2009

Recent Study on Paralyzed Rats

A friend sent me an article this past Sunday about some recently reported findings for possible paralysis treatments. I thought I should share it, for those of you that might have missed the news. The full report was published in the current issue of Nature Neuroscience, although you need to purchase the article if you don't already subscribe to the journal. You can only read the abstract for free. The report can be downloaded directly on through Nature Neuroscience website. Here's the link to the Yahoo News article that my friend sent me:

http://news.yahoo.com/s/hsn/20090920/hl_hsn/paralyzedratswalkagain


I'm left with many questions after reading this article. Although, I do realize that this article is just a summary, and therefore missing all the details. I'm very curious as to how this three part treatment could be applied to humans. I've heard of people having success by going through intensive rehab programs, such as Project Walk in CA. This specific program uses electric stimulation and repetitive movements, in hopes of re-teaching the body and help form new connections between the brain and spine. I've read about a couple of similar rehabs, unfortunately there are very few of these facilities nationwide and they're not always covered by insurance. After my accident, I did three months of rehab at Kessler, here in NJ. I have a complete C4/C5 injury. In my experience at Kessler, I felt the emphasis was put on educating people how to live in wheelchair, versus giving people hope of recovery. Therapists had several patients in each session, so it was impossible to receive much intensive one on one treatment. As for me, I felt like (due to my severe injury) they had given up on my "recovery" before I even rolled through the door. It would be great if there were more choices like Project Walk were available. I know Project Walk opened its doors in 1999. This new article speaks about treatments that appear to be similar to Project Walk's program. I'm wondering how similar the treatments that were given to the rats in this new study are, versus existing techniques some rehabs already use.

Although all research into curing paralysis is valuable (even failed treatments can give scientists insight to new ideas) I don't see how this particular experiment could benefit humans, given the fact that the rats are still unable to walk without the electric stimulation and treadmill. I'm kind of left thinking, "What's the point, if the rats can only walk when they're hooked up to the machine? What kind of applications could there be, outside of physical therapy?" One benefit that comes to mind is weight bearing, which is important because it helps keep bones strong and helps blood circulation. There are already various types of equipment being used in rehab facilities and in homes that allow for standing, such as tilt tables and standing frames. I've already witnessed people "walking" with the assistance of two or three physical therapists helping them to move their legs, while being suspended over a treadmill. Granted, the treatment I saw did not include e-stim, which this study does. In terms of everyday use, I doubt many people would be able to afford to buy all of necessary equipment. When I was in rehab the facility only had one setup like the one described in the article, and I never even saw it used (I speculate the reason was shortage of staff).

This technology could be used surgically, in the form of implanting wires directly to the muscles (internally). The person could then use a high tech remote control device (externally) to control their movements by pushing buttons. Each button on the remote would send a jolt of e-stim to a specific muscle, thus allowing the person the move. In fact, I've seen a similar device already being used, to help people with foot drop (http://walkaide.com/products/medicalcommunity/index.html) and for bladder control (http://www.icsoffice.org/publications/2002/pdf/m3.pdf). The perplexing part for me is how this technology could assist people with high level injuries, such as myself. People that suffer from cervical spinal cord injuries might not have any control of their hands, so how could they operate a remote device? I'm unconvinced that people with high level injuries could benefit from this type of implantation (outside of physical therapy). I can definitely see this sort of treatment being used for low level injuries, as they could control more complex remote control devices, which could potentially allow users to perform any number of movements.

As I said earlier, this study is interesting and I'm sure the doctors performing the study gained valuable information. I think it's safe to say that most doctors that are working on a cure for paralysis would all agree that a "cure" will most likely be a mixture of techniques, medicine and/or surgeries. It is doubtful that will ever be one simple solution, so is important that researchers explore all options. In my mind, immediate goal towards “curing” paralysis is focused on giving people back the freedom to care for themselves, which may or may not include walking. Personally, I'd be satisfied even if I couldn't walk, as long as I could care for myself. For me, walking again would be a very welcomed bonus, in terms of recovering my independence, but I'm not as hopeful for walking as I am for recovering enough mobility to not need help. I'm more optimistic about advancing therapies that could repair or reconnect the spinal cord. Although this study shows we might able to circumvent the connection between the brain and spinal cord all together, it is not addressing the real problem. I view this type of treatment as a temporary solution. However, I’m sure many people will consider this technology worthwhile for them and that we will see people using this type of approach. As for me, I rather not rely on gadgets. I'm still holding out hope for doctors to be able to repair the connections that already exist in my body and that used to perform naturally.

I did some digging & found the full study, available to read online for free:
http://www.nature.com/neuro/journal/vaop/ncurrent/full/nn.2401.html

Life; Paralyzed Exhibit, Kean University



LIFE; PARALYZED EXHIBIT

I’m happy to report that my recent exhibit opening was a big success. This particular exhibit is my third art exhibit and second solo show. The exhibit is at Kean University, in their Student Art Gallery. The gallery is located in Vaughn-Eames, which is the art building. Vaughn-Eames has two art galleries on the first floor, as well as a small theater. The opening reception was held in the Vaughn-Eames building lobby, from two to five p.m., Sunday, September 13, 2009. The exhibit will be available for viewing until October, 2, 2009. If you have friends or family that live in the area, please tell about the show.

HISTORY

I am a Kean University alumnus; haven graduated in 2003 with a B.A. in Fine Art (K-12 teaching certification). I had begun taking graduate courses in painting in 2004, in addition to working full time as an art teacher. I didn’t “pick up” a paintbrush again until late 2005, due to my accident and resulting spinal cord injury. I began painting by mouth about six months post accident. Painting gave me back a sense of independence, as there is very little, to nothing that I can do myself, without assistance. Being able to paint again also gave me an escape (mentally), that I desperately needed, during the first year and a half after my injury. I would consider the first two years post accident the darkest days of my life, especially because I living in a nursing home. At first, I was solely interested in building up my skills and trying to hone my technique using my mouth. I painted mostly still life paintings during that period. It was also during that time that I applied to join the Association for Mouth and Foot Painters.

By the time I moved back into my own apartment in January, 2007, I felt pretty confident in my painting abilities. At that point I felt that I was at about the same skill level I had been prior to my accident. That said, painting is like any skill; it requires constant practice and there is always room for improvement. It was around this time that I began painting more personal artwork. Many of the first paintings I did were meant to go to the AMFPA, so I tried to paint things that would be most appropriate for greeting cards and calendars. My personal work is based on ideas I’ve been storing in my mind since my accident.

I hadn’t felt emotionally prepared to really delve into my feeling related to the accident until I was in my home. During that same year that I moved, a committee of my friends and family members were working on raising funds for me, for a modified van. The committee contacted local papers about my story, in hopes of raising more funds for the van. It was through my interviews with the newspaper journalists that I got my first chance to spread the message about spinal cord injuries and research. It felt great knowing that a large group of people would have access to my story and I would be able to educate people about paralysis. I began receiving feedback immediately, and was very touched that people appreciated me sharing my story.

Since then, I’ve made it my mission to advocate for a cure to paralysis. Early on, after my accident, I had created a website dedicated to advocacy, but I still wished I could do more. Although I was feeling good about my painting skills, I was still apprehensive to share my artwork. I’m a very self conscious person by nature, so at first I wasn’t overly thrilled about having my story (worst yet, my picture) plastered all over New Jersey. However, so many people were working hard to improve my situation that declining the invitations to do the interviews was never an option, in my mind. After the first couple of articles ran I received so much positive feedback that it gave me the courage to try and find other ways I could use my accident to help others. I received dozens of letters and cards of appreciation and I thought, “I’ve been given an opportunity to speak, not only for myself, but all these other people that are struggling just like me. If I’m given a chance to talk about my accident or share my work I better do it, otherwise it’d be an insult to all these people that don’t have a voice.”

Thanks to the publicity for the fundraiser I was able to meet other advocates and people that worked for various art and/or disability related organizations. It wasn’t until after the fundraiser that I started thinking that I might actually be able to publicly exhibit my work. I worked hard to try and build up enough paintings to have a small body of work, which I could show. I never lacked ideas. My accident had provided me with enough things to paint about for a lifetime. I just needed time to create a decent amount of work, while still fulfilling my obligations to the AMFPA. I decided to only exhibit my personal work, because I felt it was a way for people to understand paralysis in a way my words alone could not express. My still lives help me improve my technical skills, while my personal works give me an outlet to deal with all that I’ve been through. I wasn’t interested in selling (nor am I now) my paintings. I just wanted to exhibit them; for people to see them. I know when I first started working on my paintings my family and friends were a bit shocked or disturbed by the images. I remember my dad joking with me, “How about painting another one of those nice flower paintings?” I would joke back saying, “Dad no one is going to care about a cure if I portray my life as rainbows and butterflies.” I want people to see the reality of my situation. I’m guessing those closest to me feel the pain I put into my work a bit more acutely than a stranger, but even still, my dad and the rest of my inner circle understand my need to paint and are very supportive. I often wonder if I put on such a good act that people don’t realize what I’m really going through, until they see my work and that’s why it knocks them off their guard.

MY MOTIVATION

What’s important to me is that people can make a connection to my paintings. I’ve been fortunate so far, in that galleries have been willing to display my work. I plan to keep painting and hope I can continue to exhibit. I truly believe that if people make an emotional connection with something and/or are more informed about something, that the chances of them supporting that cause drastically increases. My current exhibit is so special to me because of my connection to the University. I spent so many hours of my life on campus (the majority in the VE art building), between classes, work and clubs, that Kean feels like a second home in a way. When I was an undergraduate I worked as a freshman advisor for three years. I got to know a wide variety of staff and faculty that I might have never met, if I hadn’t worked on campus. I consider many of my old coworkers and professors my friends and I remain in connect with them. It means a lot to me to be able to exhibit at my alma mater.

This show has given me the opportunity to share my story with thousands of students. Every incoming freshman will be given a flyer with information about my show and about spinal cord injuries. More importantly, they will learn about the bigger picture of paralysis and its effects. I’m using my life as an example and it’s my hope that can relate to me and not only support a cure, but to be aware of the choices they make every day and to be thankful for every day they are healthy. As far as spinal cord injuries go, all too many occur during the college age years. I hope my story will show students how fragile our lives really are and that I can help prevent spinal cord injuries in addition to teaching about them.

I’ll never claim to be a great artist; there are many others that are far better and more talented than me. Although, having an exhibit at Kean has definitely helped me to get over some of my insecurities. This is my first show that is not related to any disability related organization. Although I’m grateful to the other organizations I’ve worked with, and support their efforts one hundred percent, this exhibit at Kean has helped me deal with my disability in a way those other organizations couldn’t. It’s given me more confidence in the power of my message. I say this, because all the other organizations work specifically with “disabled artists.” I have a hard time dealing with that label, because it always makes me wonder why people are interested in my work. I don’t want people to take interest in my work because it was painted by a “disabled artist.” I want to be confident that people are interested in my work for the messages behind them. Sometimes I wish I didn’t have to tell people I painted them with my mouth, although it is part of my life story. I feel like the work should be considered worthy on its own merit, regardless of how I created it. I fear that people might get distracted by the way I paint, instead of focusing on what I paint about. It is an inner struggle and having my first exhibit at a gallery that is open to all artists has been a big emotional boost for me. I think of my personal artwork as a tiny glimpse into my mind. It is my hope that when people look at my work they can feel what I feel, even if only for a moment. A moment in my shoes is more than enough time for anyone to realize the importance and immediacy of finding a cure for paralysis.

*Kean's Cougar's Byte review:

http://media.www.cougarsbyte.com/media/storage/paper738/news/2009/09/15/CampusNews/Unrestricting.Art-3771358.shtml?reffeature=popuarstoriestab

*My website: www.myspace.com/sci_cure

*Link to the exhibit flyer:
https://share.acrobat.com/adc/adc.do?docid=edc563a5-0c58-4db2-814d-9032983ecc3a

I Believe Inc.

Hi everyone!
I'm happy to announce that I'll be writing weekly blogs for I Believe Inc. on their website. I Believe Inc. is a non-profit organization, dedicated to raising awareness about spinal cord injuries (SCIs), improving the lives of people living with paralysis and supporting research for a cure. The organization was recently founded by my friend Rich Gaskin (better known as Professir X); with support from a small group of family, friends & fellow SCI advocates.
For those of you that might not have heard of “Professir X,” you can check out his website (http://www.myspace.com/professirx). He has been in a wheel chair for many years now (due to a spinal cord injury) and has traveled all over the world advocating for a cure to paralysis and educating others about SCI. Rich is a musician (rapper) and he uses the stage name “Professir X” for his performances and videos. As Professir X, Rich teaches others about paralysis through his songs, which send a positive, uplifting message of hope to his audience. Rich is also producing videos for I Believe TV as part of his many advocacy initiatives. I Believe TV is available to view online through the I Believe Inc. website and currently on local public access television stations (here in NJ). In addition to I Believe TV and Rich’s musical performances, I Believe Inc. is working on programs that will promote a variety of accessible events and provide resources and information to help improve the lives of people living with paralysis.
I Believe Incorporation’s philosophy is all about teamwork. I Believe Inc. has partnered up with similar non-profit organizations, to help one another unite and work together towards the goal of finding a cure to paralysis and improving quality of life. Just recently, I Believe Inc. received a “Quality of Life” grant from the Christopher & Dana Reeve Foundation and we are thrilled to be working alongside them. I Believe Inc. is also working with the National Spinal Cord Injury Association and helping to promote the “JustADollar” campaign (through the Rutgers University Foundation).
I’m so pleased to have been asked to be a part of I Believe Inc and hope you’ll join me, in helping to raise awareness about SCIs and paralysis. Visit us on the web at www.ibelieveinc.org. If you know someone living with paralysis (or you yourself are paralyzed), please share your thoughts with us. We’d love to help others promote their fundraising or events. After all, we are all working towards the same goal. Also, I’m asking all readers to please share our web site with others and provide feedback, ideas or questions.

Paralysis in America

According to an April 2009 survey conducted by the Christopher & Dana Reeve Foundation, there are 5.6 million Americans currently living with some form of paralysis. Paralysis is caused by various types of disease and injury, such as; Amyotrophic Lateral Sclerosis, Brachial plexus injury, Brain injury, Cerebral Palsy, Friedrich’s Ataxia,Guillain-Barre Syndrome, Multiple Sclerosis, Muscular Dystrophy, Spina Bifida, Spinal Cord Injury, Stroke, Syringomyelia/Tethered cord, Transverse Myelitis, Lou Gehrig's disease & Parkinson’s disease. This recent survey also indicated that 1.275 of people here in the USA were paralyzed due to spinal cord injury. An estimated 12,000 spinal cord injuries happen every year in our country. According to National Spinal Cord Injury Statistical Center 23% of all spinal cord injuries resulted in paraplegia, while 18% result in complete tetraplegia otherwise known as quadriplegia.
Although some people with less severe incomplete injuries may recover significant function beyond their injury level, less than 1% of all injuries resulting complete recovery. Spinal cord injuries can happen to anyone at anytime, in many ways. These injuries can be life threatening and in many cases life altering due to paralysis. A spinal cord injury can turn a person's life upside down in an instant. Imagine losing all your independence over night. Think about how different your life would be if you could no longer care for yourself.

There is hope for a cure, but research requires time & funding. Here in the United States, during the last decade or so, there unfortunately was not much support for finding a cure. President Bush’s veto on stem cell research significantly reduced public funding, which in turn slowed down progress in finding therapies to cure paralysis. During President Bush’s years in office our country spent less than $120 million a year on spinal cord injury research. In contrast, we spent $12 billion a year for care and support of people with spinal cord injuries (these figures do not account for the millions of other people receiving care and services related to other forms/causes of paralysis). Leading experts in the field believe that's an investment of less than $2 billion a year could provide a cure within the next decade. That is a small price to pay, especially given what a huge impact a cure would have on the lives of those people living with paralysis, not to mention the enormous savings it would produce over the long term.

Thanks to President Obama’s reversal of the veto on stem cell research and the recent passage of the Christopher and Dana Reeve Paralysis Act (S.1183) the future is looking brighter. The CDRPA “encourages collaborative research in paralysis, will hasten the discovery of treatments and potential cures and will improve the quality of life for millions of Americans living with paralysis.” This summer the world’s first human clinical trials will take place for stem cell therapies (GRNOPC1) for acute spinal cord injury patients (FDA gave approval to the Geron company in January 2009). It is critical that we thank our elected officials for the changes they’ve made so far. We must also encourage our leaders to continue to (and hopefully expand) support programs and organizations such as the CDC, which enable researchers to move forward in finding a cure.

Please help me and the millions of other people suffering with paralysis by supporting the search for a cure & educating others.

Visit my website for more info: myspace.com/sci_cure