"If you're going through Hell, keep going."
-Winston Churchill

Dec 29, 2011

You cannot start a new chapter until you end the previous one. Goodbye 2011

Season’s Greetings! I hope everyone reading this has had a warm, safe and happy holiday with the ones that you love. I am a year older and 2012 is only days away- typical time for many of us to reflect on the past year. By this time of the year I always think the same thing, “Wow, time sure has gone by fast.” That is a severe understatement for this year; days seem to go by so quick that I cannot keep up. Time is a precious thing many of us take for granted. What matters is how you use your time. Are you spending it with people you love? Are you making yourself a better person? Or are you spending it not making the most out of it? You cannot sit back and wait for your world to turn into what you want it to be- you have to work for it. You have to want it enough that you fight for it. Days when you don't want to, you do it anyway. This is how I feel about my recovery. I know I have made great progress, but I'm disappointed in myself for not working harder to make more. On one hand, I give myself a break because this was still my first year. I am a little over 18 months post-injury so I am in a stage where sometimes I feel like I know everything there is to know about my injury, but then I am still experiencing new things and learning different ways to improvise and adapt that makes the injury/lifestyle feel so new. For instance, recently I have learned how to independently go into the bathroom to brush my teeth and wash my face. One day I even managed to get in the pantry and get me a spoonful of peanut butter by myself! Things I could definitely not do this time last year. However, looking back now to this time last year, I was probably a lot more depressed than I wanted to admit; it was my first birthday, Christmas and New Year in the chair. One of my most favorite times of years yet I did not feel the spirit of the season. Then, in January, I was denied Medicaid and all therapy stopped. Therapy not only gave me the chance to physically work out, but was also the only place I went repeatedly and was able to socialize with other people aside from my family. Not to mention having to adjust to relocating back home, whereas most my friends lived in Hattiesburg or New Orleans. Also having to adjust to being back in my house where I used to be able to do so much more that I could no longer do (get in the whirlpool bath, lay on the chaise, eat at the bar, sleep in MY wonderful queen-size bed). Then my relationships with people who I was extremely close to drastically changed. I'm sure there were also some “seasonal blues” involved as well because last year was extremely cold and nasty. Every aspect of my life had changed and I know it takes time to adjust, but it was so much to deal with that I shut down and did not follow through with my promise to myself to push as hard as I could every day.

Then in April, I decided to do something about it. I created Help Katy Back to Rehab and life has not been the same since. Each day I would get excited to check the page and see what new things had developed. Having so many people, most of whom I've never met, believe in me and support me was the hand that I needed to pick me up. That page has truly changed my life and so much good has come out of it. Other than raising money for me to go back to rehab, I also made a whole new group of friends- both online and off. I have learned that I can inspire people, which in turn inspired me more to make the accident and my injury have as much purpose as possible. I read a quote the other day that really hit me, “Maybe your sole purpose in life is to serve as a warning to others.” I can use my story to either prevent an accident happening to someone else, or inspire just one person to live their life the best way they can. That you can live your life without drama and negativity; reminding yourself every day that life can change in the blink of an eye; time goes by so quickly and once it's gone, it's not coming back. There's no Mulligan when it comes to your decisions in life. If I can make somebody realize that, then it is worth it. Because really, that is the only option there is. Life truly is what you make of it. My injury has slowed me down but it has not changed my passions, my goals, or my quality of life. If anything, I appreciate little things so much more now than I ever did before. I have learned so much more about myself this past year and a half then I think I knew before. Prior to the accident I never thought of myself as a strong person, at least not the kind of person who could handle such a drastic change with my head held high. But to me it was simply the one thing I kept repeating to myself: there is no other choice. And that really applies to any situation in this life that you find yourself in where you do not have any control over what has happened (such as my injury). It is inevitable that there will be hard times in your life, that you will struggle without knowing why and find yourself stuck in a situation that you do not know how to control. But the one thing you can control is your attitude, and that makes all the difference in the world. You could sit, sulk, cry and pout all you want, but it won't do you a lick of good. Time will go by, wasted because you decided to let yourself be defeated by a situation you could not control. Or you learn to grab the bull by the horns, thank God you're alive, and start to count your blessings and not your problems.

               So this is how I will start 2012, equipped with the knowledge and the drive to really push myself this New Year, the knowledge to know that life is tough but I am tougher. I will admit, without sugarcoating, that I have been lazy this year. I have not pushed my body like I told myself I would. I have not worked as hard as I told myself I would, know that I can, and must do in order to achieve my goals. I will not get anywhere if I don't take the first step, so to say. I cannot control the fact that my injury has already happened, but I can do as much as I can, physically and mentally, to get myself back to where I need to be. Where I am at now in my life, not finished with school, out of work, and fully dependent on somebody, is just a speed bump. Before my accident, I was going nowhere fast and God told me to slow down. It has always taken drastic measures to get through to me. Now that I can look back on the year and realize how much further along I could be I get angry with myself. I will use that emotion to push myself on the days that I hurt; the days I don't want to get up and do hours of intense therapy. I will allow myself to feel angry to give me that push that I need on days where I feel weak. I will feel that anger without letting it consume me, but to instead let it motivate me. I will use that emotion while constantly reminding myself that nothing will change if I don't make it happen. Now that I have Mary as my personal care attendant to help me with my exercises, I have no excuse not to do it. Like I said, you cannot sit back and wait for your world to turn into what you want it to be. Carpe Diem!

               So long 2011, I have learned so much more than I ever expected. I am ready to put this year behind me and move forward into a happier, more productive, more self-aware, and more knowledgeable year. I look forward to reading this post again when we find ourselves approaching 2013 so I can smile and be proud of everything I will push myself to do in 2012. All the while remembering that this is merely a year, and in the grand scheme of things, that is not that long at all. These are things that take time, dedication, and determination. I must remind myself to be patient. The things that I want to accomplish will not happen overnight, or even over a week. I will have to complete the small pieces of the puzzle before I can see the whole picture. As the saying goes: Rome was not built in a day. 

               In less than a month (Jan 18) I have my bladder surgery. I pray that the recovery will be smooth and quick. In March I will be traveling to Oxford, MS, to be awarded as the Sigma Nu Charity Bowl recipient at Ole Miss. In April I will be traveling to Atlanta to attend the Shepherd center. During all this, I am also preparing myself to start the process of being evaluated to drive. Yes, driving a car. It is scary but I am so excited and ready for what great independence that will give me! It is going to be a big year; I can feel it in my bones. There are great things waiting to happen. I am keeping my goals high but realistic: to be able to transfer myself from bed to chair; to be in my manual chair 50% of the time; to be driving; and enroll in online classes in the fall. These are not New Year’s resolutions (because I can never keep my New Year's resolutions); these are New Year’s “absolutely-no-excuses-will-most-definitely-do-must-dos.” Simple as that... That made sense, right?
               I will conclude on one final note: please be extra careful this holiday weekend. Do not get behind the wheel after drinking; do not let your friends drive or ride with someone who has been drinking; and even if you are as sober as can be, pay special attention to everyone else on the road. While you may practice safe driving, the person in front of you may not. Don't get distracted by cell phone or other people in the car. If you have not already heard, there is a service offered by AAA to prevent people from drinking and driving. Tipsy Tow offered by AAA- you don't have to be an AAA member, from 6pm-6am on New Year's Eve/Day they will take your drunk self and your car home for FREE. Save this number 1-800-222-4357. Don't make a quick decision that could last a lifetime- or end a lifetime.
               I wish you all a very happy New Year! Thank you for staying by my side this last year and welcoming 2012 with me. I hope to get in another good blog update before my surgery. And if you need more inspiration to put yourself in the right frame of mind for the New Year, be sure to read this article: 30 things to stop doing to yourself. It can definitely help you to lead a better quality of life and is a constant inspiration for me! God bless!

Dec 12, 2011

Conquering your fears

Do the thing you fear to do and keep on doing it... that is the quickest and surest way ever yet discovered to conquer fear." -Dale Carnegie.

And today I did just that. I had the honor of being invited to speak to a group of fifth graders in Lucedale, MS, this afternoon. This may come as a surprise to some of you, considering the amount of media coverage I have thrown myself into and for those that know me personally, but I absolutely hate public speaking. I get nervous, scared, awkward, and dry-mouth like a beast. But just a few hours ago I conquered that fear. I sat in front of this group and told them my story of what happened, my hospital and rehab experience, keeping a positive attitude, and how to treat people with disabilities. The kids were so well behaved, focused, and interested. They asked tons of questions! Some were kind of funny, such as, can service dogs talk? How long was I in the helicopter? Others I hated to have to answer truthfully, like, did I think I was going to die? What emotions did I feel? It is definitely not my intention to scare them, but to know that I can prevent one person from diving in shallow water, it is all worth it. I even have one little boy keep coming up with inventions so that I could go fishing and hunting with him. I daresay I have a little admirer! I even got graded at the end of it (apparently they are studying how to speak to a group- loud and clear, making eye contact, good vocabulary, and grammatically correct). I am happy to say I got an A+! I even got my mother to record me, however, something in the video camera went haywire and we only got a little over a minute out of the 40 minutes I spoke.

I'm so happy that I decided to face my fear and do my very first public speaking event. It is so important to me to educate children, not only about the injury and prevention, but also about staying positive, never giving up, and treating people with disabilities just the same as they would their peers. Sadly, it is almost adults who need to be taught this more so than the children. Anywhere I go in public, people stare. Some even openly gawk. 8 times out of 10 it is an adult; adults who should know better that it is rude and impolite to act in such a manner. It is probably the one thing that gives me the most anxiety when going out in public- the looks. I understand that with children they are fascinated by the chair, but I would have no problem with the child, or an adult, asking me what happened. I find it a lot less rude to ask rather than continue to stare. It seems as if though because I'm in a wheelchair, people do not think I have the same interests, goals, and daily activities as I did prior to my accident. It is probably the thing I hate most about my situation is being treated differently. I am no different than I was one year, six months and two days ago (tomorrow, 12/13, is my 1.5 year anniversary). I just have to do things a little different. Adapt and improvise has been my mantra along this journey. Nearly everything is possible with a little creativity, hard work, and deep faith. 

One other quick point I want to make that coincides with having people stare at me in public; it is a fantastic quote that came from another young woman with a spinal cord injury that I've had the pleasure of getting to know via Facebook. This is something that her friend said and she never forgot it. When I expressed my feelings of anxiety in public, she relayed it to me, and I daresay, I could not have said it better myself.
"I remember Randy Snow putting his arm around me and saying “Michael, see that guy, he drives that car to be noticed, and that woman does her hair a specific way so people pay attention to her. People develop ways of moving, of talking, of interacting all with the hopes of being noticed. When we come into a room, people will always notice us. We have what everyone wants; it’s just a matter of what we do with it.”

Each day, I get a better understanding of what I will do with my attention. Watch out world, this is just the beginning! Create your own destiny, folks. 

Have a Merry Christmas! Next time I blog, I’ll be a year older. So long 24, you have taught me a lot! God bless.

Nov 23, 2011

Giving Thanks for Thanksgiving

So in honor of the holiday, I felt it was fitting to compose a blog of what I am thankful for. Hopefully, I can do so without it sounding like an Oscar acceptance speech. I know I have so much to be grateful for in this crazy life of mine. I start first and foremost with God who, last June 13, gave me a second chance at life. I trust the Lord that He has a plan for my life and that everything happens for a reason. I'm extremely blessed that He has given me more function than the doctors expected and the strong willpower not to settle for anything less. My accident was my wake-up call and I'm fortunate to be alive with a clear, functional mind so that I may spread my story in hopes that I can encourage, teach, inspire, and perhaps prevent someone else from having a similar accident. I am also thankful to have my Dad in Heaven as my guardian angel. I truly believe he has watched over me since his passing and especially on that fateful day. There have been many occasions when I can feel his presence and he gives me the power to go on.  Knowing how proud he would be of me gives me the courage to continue to move forward. I look forward to the day when I will walk next to him in Heaven.

Of course, I would not be this far without my wonderful mother, who all my life has been my rock. When I feel weak, she is my strength. The four months spent in the hospital she stayed by my side; sleeping in the ICU waiting room, in a camper trailer, or in my freezing hospital room on uncomfortable bed, being woken up constantly by the nurses tending to me. While at Methodist, she attended every therapy session to learn how to take care of me. She has modified her home and her life to cater to my needs. She has purchased not one, but two handicapped accessible vans, to get me to where I need to go. She prepares every meal, drives me to every appointment, handles all my finances, and has helped to fight my Medicaid battles. This accident has been equally as hard on her as it has been on me because she has had to sacrifice so much for my well-being. Sadly, I know other similarly injured friends who are not as fortunate as I to have such a wonderful and influential parental figure. I'm forever indebted to all she has done for me my whole life- and especially the last 17 months. I could tell her thank you a million times but it would never truly express how thankful I am to have her as my mother.

I am also privileged to have wonderful siblings; ones who spent nights in the hospital with me, afternoons so my mother could have a break, or just coming to keep me company. In addition, my extended family (aunts, uncles, cousins, in laws) have all been extremely supportive and helpful during these trying times. Those who know my family will agree I am extremely blessed to be surrounded by such loving and caring people. Another group of people that I am extremely grateful for would be the team of doctors, nurses, nurse aides, and therapists that I've had from the beginning. Forrest General Hospital was an amazing experience, despite the reason I was there. By the time I left, I felt like I was a part of a family as well as making lasting friendships. I was so fortunate to have a brilliant, well-equipped medical team taking care of me. The same goes for Methodist Rehab. My therapists had me work as hard as I possibly could to make as much progress as possible. They are much more than just therapists, they have become lifelong friends. Furthermore, I am thankful to the Park Rangers who were stationed along Little Black Creek that Sunday afternoon. Because of them, I was properly cared for and air lifted to the hospital in a timely manner. 

Of course, I cannot forget my dear friends, old and new. To the group that was on the canoe trip with me who basically saved my life by pulling me out of the water. For my old friends who continue to stand by my side as I embark on this new journey in my life and have not let my disability affect our relationship, such as my friends Danyelle, Jenna, and Robert, who stay in constant contact and visit when they can- people who are true friends no matter the circumstances. I am blessed to have my awesome best friend, Katy, who I reconnected with after years apart and have been there for me since I've returned home. Another best friend, Rachel, who came to visit me more times in the hospital than I can count and always sends me a card just to let me know she is thinking about me. I am grateful for one of my new best friends, Laura, who out of the goodness of her heart, organized and coordinated my Southern Belle fundraiser, which has raised me money to go back to rehab. I am fortunate to develop what I'm sure will be a lifelong friendship and extremely appreciative for her frequently taking me out to do fun activities. Of course, I cannot mention the Southern Belle fundraiser without giving credit to my friend, Brad, who did many of the “behind-the-scenes” work and also got my name into the media. I am also so very thankful for my new friends, a large group of women with spinal cord injuries, who have become so near and dear to my heart. Many who have listened to me cry, vent, and express my frustrations, anxieties, and triumphs since living my life in a chair. Strong, independent women who are not only like sisters, but wonderful role models that can relate and empathize with my situation and can understand my feelings unlike anyone else. I am especially blessed to have my new friends, Lori and Tim, who have helped me more emotionally and physically than words could ever describe. I have also been very fortunate this last week to have found the most fantastic personal care attendant, Mary, who helps to take care of me. In addition to relieving my mother of some of her duties, she pushes me to work harder and helps me with the things I cannot do for myself. We are quickly becoming great friends and I thank God for putting her in my life. 

I'm extremely fortunate to have a group of my late father's engineering friends (called the NUKES) to help me financially and to offer their brains and services to adapt any basic items to make my life easier. It is truly touching that these people are so willing to help me. Words cannot even express how thankful I am for all my supporters. Everyone who has sent kind words, donations, cards, or just says a prayer for me at night. People I've known for years and those I've never met who constantly believe in me, inspire me, pray for me, encourage me, strengthen me, and love me. The amount of love I've been shown from all my followers and friends is more than I could've ever asked for and I'm eternally grateful. Like I always say, I find it such a blessing to be able to inspire others while continuing to be inspired as well.  I can never truly express my gratitude for everything that everyone is done for me and my family since the accident. It is truly overwhelming in the best possible way. I only pray I can return the favor someday. Thank you all can for those who read this and still continue to be there for me. I wish you all the most wonderful and happy Thanksgiving. May you share good food, fun times, and great laughter with the ones you love during this holiday weekend. Remember to count your blessings and not your problems.

Nov 15, 2011

Where in the world was Katy Blake?

Wow, I don't know where to begin. I suppose I should start with an apology. I never intended to go this long with a lack of updates. But for those who know me, or follow my Facebook page, know I have been quite the busy bee these last few months. It all started on Wednesday, September 7. My mother woke me up with the phone call she received from Methodist Rehab in Jackson, MS, when they asked her, “Were you aware that Katy was supposed to be checking in today?” We were flabbergasted. No one had informed us that Medicaid approved for two weeks at MRC. We quickly rescheduled for me to begin my two week stay Monday, September 12. I was mentally prepared to push my body to the max because I knew the next 14 days would fly by before my eyes; so I hit the ground rolling. On that first Thursday, I stood up for the first time in nine months with the aid of a standing frame. I only lasted 20 minutes, which was a personal best at that point.From then on out, my goal was to do it longer than each time I had before. By the end of my stay, I exceeded even my own expectations by standing for over two hours. I also experienced many other triumphs during my rehabilitation, the biggest being the length of time I was able to stay. It originally started as two weeks, which was then increased to four weeks on behalf of Mississippi Medicaid due to the amount of progress I was making. I was extremely blessed that vocational rehab also granted an extra two weeks so that my combined stay was just a few days shy of six weeks. In those six weeks, I worked diligently on assisted transfers, building upper body strength, regaining trunk control, standing in the standing frame, rolling from side to side, unsupported sitting, correcting poor posture, “walking” on my hands, upper body dressing, and painting. Now you can see how those six weeks went by so quickly! Therapy was absolutely amazing. I enjoyed pushing myself harder and harder every day to try and gain more strength. But that was just the first mile of a very long marathon.
         One other truly wonderful thing that came as a result to me being Methodist was finally getting my power chair modifications. I was fortunate enough to have the best vocational rehab counselor, Tara, while in Jackson. Because of her, I got my chair modified and the two extra weeks of rehab. My original back to the wheelchair was modified to fit me more snugly to help me sit up straight and correct my poor posture. Under my calves are calf pads so my legs no longer hit the bar under my cushion, preventing potential pressure sores. I have a new foot rest that keeps my feet in place whereas before, my feet would fly off with every spasm. My chair has been lowered 2 inches so now I can actually sit under a table for dinner; previously, I had to have a tray in my lap which was somewhat embarrassing when going out to eat. The back of my head rest has been sawed off -it had a sharp metal bar that extended about 5 inches which led to me ripping the fabric in my van. They put in a reclining back and elevated foot plates so that I am able to catheterize in my wheelchair which in is by far the best modification they made. Now I no longer feel rushed with a timetable (every 4-6 hours) to have to get back in the bed to catheterize. The “new and improved” power chair has given me more freedom and confidence than I had before.
So this leads me to present day. I have begun the process of sending in all my records and paperwork to the Shepherd Center in Atlanta. As of right now, they are on a waiting list until late January. If I leave for more than 30 days, I will have to go through the process and paperwork of being discharged from Mississippi Department of Rehabilitation. So I will only be going to the Shepherd Center in 30 day increments. The tricky part now is figuring out when I will go. In March 2012, I will have to be present at Ole Miss to be the recipient for the Sigma Nu Charity Bowl fundraiser. In addition to being unable to go during the month of March, I am also looking into getting a bladder auto augmentation. As of right now, I have to use an intermittent catheter every 4 to 6 hours to empty my bladder. I am unable to do it myself and it also limits me to a schedule where I have to be near a restroom, properly dressed, and have assistance to do this within the proper timeframe or I could experience autonomic dysreflexia. With this surgery, my bladder would be stretched so that I could go longer periods of time between catheterizations. They would reroute my appendix to create a stoma on my stomach so I would be able to catheterize through there. So the benefits are definitely worth it: to go longer between catheterizing; to be able to do it virtually anywhere and in any outfit; and to one day be able to do it myself. This procedure will increase my independence greatly.  There are, however, a few cons and that would mainly be the recovery. I would be in the hospital for about a week, if not more. Typically, most patients are not allowed to intake fluid or food up to two weeks afterwards. All the nutrients will come from an IV. The surgery cuts into major organs- the bladder; appendix; intestines- and can prove to be quite painful. I would have to use a Foley catheter for a few weeks afterwards and then slowly and gradually begin to intermittent catheterize my stoma, to let it fill up and stretch out. My surgery would have to be done in Jackson, MS, and would require many, frequent checkups afterwards. It is generally a 2-3 month recovery. I was told by my urologist that it is not IF I need this surgery, but WHEN. 
So my thought process is to have this done before I pursue going to the Shepherd Center. I would prefer to have the surgery out-of-the-way as opposed to going to Shepherd for one month,  building up strength and then losing it all while recovering. It would also make traveling and staying places (such as Ole Miss and Atlanta) much easier. So it looks as though I will have to practice patience, something I lack, as far as going to the Shepherd Center. I am just so unbelievably ready to get there. April seems like it is ages away! But as fast as this previous year has gone by, I'm sure the next 5 1/2 months will go just as quickly. Other exciting news is that I finally have my personal care attendant. I met a wonderful woman who will help me do daily activities such as bathing, grooming, exercising, etc. This is a great opportunity, not only for me, but also to give my mother a break from being my primary caregiver 24/7 for the last 17 months. 
In other nonrelated therapy and progress news, I have really been enjoying painting and doing other arts and crafts. Right now I am working on overdue works of art that I’ve promised people and Christmas gifts. My goal is to next year work on projects throughout the months so that in October I can set up a booth at Zonta (an arts and craft festival in my hometown) to help raise more money for additional rehab, medical equipment, modifications, etc. As far as medical equipment goes, I am finally getting a fully electric hospital bed this week. In the bed that I am in at the moment, I am unable to practice transferring myself. In addition, I had a dear friend of mine gave me her standing frame. It is a top-of-the-line piece of equipment and I am beyond blessed to have it. I will have to put forth some of my own money to modify it to fit me, but it will be undoubtedly worth it in the end. I was also fortunate to be given a new manual chair that weighs around 30 pounds less than my current manual chair. It is my goal to practice pushing myself is much as possible to build up strength, endurance, and to one day not need my power chair. And finally, another BIG thing I will be looking into soon is driving. A van could easily be modified so that I would be able to drive my power chair into the driver seat and use hand controls. Once I am able to catheterize myself and drive myself, I can finally get back in the college. Lots of exciting things going on, sometimes it is even hard for me to keep up! Will definitely update more soon. God bless!

Aug 30, 2011

The chair nightmare

Today I'm beyond frustrated. Anyone who knows me personally, or keeps up with me on Facebook, knows about the struggles I have faced concerning my power wheelchair. For those of you in the dark, let me start from the beginning.

An example of a Hoyer lift
I was fitted for my chair before I left Methodist Rehab (MRC) in Jackson, September 2010. My chair came from a company in Jackson called Custom Rehab Solutions (CRS). I was sent home in a loaner chair, what they call a “transfer” chair. It did not fit right and was extremely uncomfortable. I was unable to push myself and had to put multiple pillows behind me to prevent the bars digging into my shoulders. It was so horrible that many days I opted to stay in bed rather than sit uncomfortably. By Halloween weekend, 2010, my power chair was ready. MRC wanted me to come back to Jackson for a seating clinic where a trained therapist would examine me in my chair and make adjustments if needed. My options were either to come for an 8:30AM clinic or to wait until December. We live nearly 4 hours away from Jackson, so 8:30AM is nearly impossible. Since my mother has to use a Hoyer lift to transfer me from the chair to the bed, staying in a hotel was out of the question. By this time, I had already spent an unbearable month in my loaner chair and could not fathom waiting another month and a half for my power chair. At the time, I was going to Singing River Hospital in Pascagoula for outpatient therapy. My physical therapist got on the phone with MRC and CRS and scheduled for them to bring my chair down to Pascagoula where she would oversee the fitting. After sitting in the horrible loaner chair for a month, a lawn chair with wheels seemed like a better option. So after getting in my power chair, it seemed great; until we went to go load up in the van to go home. That should have been my first sign.

In my power chair, from the floor to the top of my head, I sit at 55 1/2 inches. I almost did not make it home that day, as we soon discovered my chair could barely fit into the van. The van that we had purchased was not a high-top van, we had no idea the chair would be that big; the power chair I used at Methodist was nowhere near the height of my new chair. We had purchased the van, sight unseen, from individual on the coast. We were desperate to find something as soon as possible, since I was about to be released from Methodist, and relatively low-priced (which is extremely hard to do for wheelchair accessible vans). For those who are familiar with wheelchairs, or who have been around me in person, know about the tilt feature. With the tilt feature, I am able to tilt my chair back to where my back is almost parallel with the ground. This allows me to do pressure relief and also in case I have a dizzy spell and need to recline. That first day in my new chair, I had the tilt all the way back and ride home with my nose touching the ceiling. I had been anticipating getting my power chair so that I could go out in public and be mobile, not having to worry about someone pushing me and looking ridiculous surrounded by pillows in my pathetic loaner chair. So here I was in my power chair unable to go anywhere and stuck with a van I could no longer use. 

Within a month, I began to notice problems with my power chair. My spasticity began to get worse, causing me to move around in my chair. The increase in spasms along with the poor fit of the chair has caused me to develop severe scoliosis in only 10 months. Not only does my spine have an extreme curve to the left, but my hips constantly tilt to the right. Since December, I started expressing my problems with the chair.  Now let me stop for a moment and explain exactly how I got my chair. As many of you know, I have Mississippi Medicaid. In the hospital I always heard people say, “If you are under 21, the best possible insurance you can have is Medicaid.” Sadly, if you are over 21, Medicaid will not pay for any medical equipment. I was extremely fortunate, at the very last moment, to qualify for vocational rehab, which paid for my power chair, shower chair, Hoyer lift and (semi-electric) hospital bed. In order to be considered by vocational rehab, you must be able to be rehabilitated enough to be a functional member of society. I must be making progress to get back into school or work, which is something I cannot do until I have more rehab, my spasms are under control and my chair is fixed. Before leaving MRC, and after being denied by Medicaid for a power wheelchair, I was approached and was asked to consider putting my name on a lawsuit against Medicaid for age discrimination. It took no time to decide I was very interested. Not for my own benefit, because I was very lucky to have vocational rehab purchasing my equipment, but for the friends I made at MRC who did not qualify for vocational rehab, had Medicaid, and were over 21 and, therefore, unable to get that they needed. This lawsuit has been filed in many other states and passed. Unfortunately, after returning home, it seemed the disability advocates supporting the lawsuit ran out of funds. Well, in April, after starting to see a new physical therapist in Ocean Springs, I was reevaluated in my chair by a local company, Gulf Coast Rehab (GCR). I never understood why my chair was done from a company in Jackson when I reside on the Gulf Coast. Apparently, I am the only person who came home from Methodist with all the equipment coming with me- no one is sure why. After GCR submitted to my modifications to Medicaid to cover the costs, I was, of course, denied. Vocational rehab has already spent upwards to $30,000 to purchase equipment for me and does not have the funding (around $10,000) to pay for my wheelchair modifications. I have been fighting the battles Medicaid to pay for these costs since May.
How horrible I look in my chair

Because of the poor seating situation, it has begun to cause health issues. As I mentioned, I have developed scoliosis. My feet do not stay on my foot plates, resulting in footdrop. There is a bar underneath my cushion that is so sharp it is digging into the back of my left leg, which could easily result in a pressure sore. The seat itself is nearly 4” too big (no, I have definitely not lost any weight). The original back on the chair had chest pads that did not support me, which is how I developed such severe scoliosis. The back of the head rest has a bar that juts out so far and is so sharp I have torn the lining in my van, and it now has a tennis ball to protect it. To top it all off, I am unable to move my thigh pads, arms, or chest pads on my own due to my lack of hand function. The chair I borrowed while at MRC had arms that I could just push up, this chair, however, has a clip that I'm unable to control. So when I am ready to transfer myself, I would not be able to do so independently because I cannot undo my arms, thigh pads, or chest pads. 
Trying to prevent pressure sores
Not to mention the height of the chair, I am unable to get underneath any table, have a hard time loading into my van (we ended up purchasing a high top van), and I look rather intimidating out in public. Now, even when I lay in bed, because of the spasms and the way I've been sitting in this chair, I cannot even lay straight in the bed. My feet and my upper body curve to the left. My hips often shift to the right so I'm constantly putting more pressure on my right hip, which has contorted my pelvic bone. Whether it is sitting in my chair or lying in my bed, I am constantly uncomfortable. This also causes a lot of neck pain, preventing me from working as hard as I want to in therapy.

 Sometimes it is so hard not to get mad at the whole “system” for letting it get as far as it has. Of all the obstacles I have overcome, this is by and large the hardest. Because no matter how hard I try, how much I pray, how bad I want it; it is not something I can do on my own. It will not get any better until my chair, and my spasticity, is fixed. God bless my mother, I know she tries her hardest, but it is tough for anybody to position me in my chair. Getting into my chair today, I busted out crying. It seems so unfair and unjust and it's not something anyone around me can help with. I definitely always keep a positive attitude and try not to let anything get me down, but this is definitely the hardest. 
How I am sitting at this moment
Even right now I sit here with two large pillows stuffed on either side of me and have more of a lean then the Leaning Tower of Pisa. It inhibits me from being in the chair for long periods of time. Lately, I have even been embarrassed to go out in public. A combination of the spasms, the poor posture, and “makeshift modifications” all added together just make me look like one big hot mess. I fully intend to be independent and a functional member of society. I want to return to school, graduate from college, and help people with disabilities. Unfortunately, I cannot begin to move towards this goal until I get all these problems fixed. 

         This has been my chair nightmare. September 12 I have an appointment at MRC to see if they can make any adjustments to my chair, free of charge, to help me be more comfortable. I've been praying every day that they can help in some way. There will, of course, be modifications that will costs money, but we will just have to cross that bridge when we get there. I am also still waiting to hear if Medicaid will approve my request or if I will follow through with the lawsuit. Also, for those who do not know, after waiting since April, I have finally been approved and placed on the Medicaid Waiver program. Under this program, I will receive full Medicaid benefits, a personal care attendant, and possibly another 30 days at Methodist Rehab. We are extremely thrilled and very happy that after waiting for months, I will finally receive the care that I need and deserve. It just goes to show that with patience and determination, you can achieve your goals.

Aug 10, 2011

Devotees, pretenders and wannabes- oh my!

Today's entry is not inspirational. There are no updates of what has been going on in my life. Today is strictly informative of the dark side of having a disability. I have many different people who read my blog. There are my friends who are learning about spinal cord injury (SCI) since my accident; there are strangers who have no idea what all a spinal cord injury entails; and there are girls who also have SCI, who can read these posts and relate, hopefully feeling inspired and motivated. This is an educational post about the “dark underbelly” of living with a disability. These are the things they do not tell you or warn you about it in the hospital or rehab; you are left on your own to figure it out as you go. I may be young, and perhaps sometimes a little na├»ve, but I'm not stupid. If anything, I am too trustworthy for my own good. Before having a disability, I never thought twice about what hardships you really do face. And I am not talking about the wheelchair, adapting to your new lifestyle, learning to compensate for what you don't have. This goes much further than that. It even goes beyond the looks from ignorant people; the snickers from uneducated people; and the terrors of finding van accessible parking. Today's entry is about the predators that lurk behind the computer screen.

We all know that there are sick people in the world. All you have to do is turn on TV set to see the crazy, malicious, coldhearted people that seem like your everyday normal Joe. Today, I devote my blog to a section of these people who are labeled “devotees, pretenders and wannabes.” First, let me begin by defining what exactly these people are:
1.      Devotees – These individuals have an intense attraction for disability.
2.      Pretenders – These persons have a sexualized fascination with mirroring aspects of disability and its appearance (they may pretend to be disabled themselves).
3.      Wannabes – These people have a strong desire to reproduce the sensations, even to the point that they’re willing to inflict self-harm to acquire the disability.

Before starting my Rehab for Katy Facebook page, I had no idea any of this stuff existed. Facebook has been great in so many ways. Not only have I gained exposure and hosted fundraisers, but I've made several new girl friends with SCI who I can relate to, whereas before, I had none. I began getting tons of friend requests; I would look at their page and see activities such as paraplegic, quadriplegic, wheelchair related activities, and figured “hey, a new friend I can relate to.” Little did I know what I was really getting myself into. I soon began to receive messages from the “devotees”… Most of you are aware I also have a YouTube channel; this is where many of them subscribed to and tried to contact me. At first, I thought it was harmless. Creepy- but harmless. Then the horror stories really came out. I learned of other disabled girls whose online stalker turned into real-life stalkers. Then it was also brought to my attention that these devotees would steal your photos to post on their fetish websites. They don't care if you're not wearing a sexy outfit. They want to see things like you transferring yourself; the way you adapt things; even just a photo of your paralyzed feet. I do not pretend to understand the psyche of these people, because I cannot fathom such disturbing thoughts. The following is a list of possible explanations of where a disability fetish comes from:

  • A lack of success with able-bodied individuals, which makes people with disabilities safer targets of affection.
  • The desire for a unique partner who garners attention from onlookers.
  • Sadistic tendencies, where the individual loves having power over one of perceived lower status.
  • Masochistic tendencies, where one gets satisfaction via feelings of self-degeneration that are associated with having a partner who is stigmatized.
  • The imprint of early childhood experiences involving strong emotions for a people with disabilities. (Parental approval for any admiration can further reinforce such.)
  • The need to feel like a hero in “saving” a people with disabilities. 
--SOURCE: http://www.disaboom.com/sexuality-and-disability/understanding-disability-fetishes-and-devotees
            But honestly, what disturbs me more than devotees are the pretenders and the wannabes. It is widely thought that these people suffer from Body Integrity Identity Disorder (BIID) which is a neurological and psychological disorder that makes sufferers feel they would be happier living with a disability. The same way some people have Gender Identity Disorder. A lot of devotees will pose as pretenders in order to get close to the woman with disabilities. This can be done in the privacy of their own home or even out in public. They will steal photos of disabled women and create fake profiles to appeal to more vulnerable women. Sometimes they will just look at your photos for their own sexual fantasies; sometimes there will steal your photos to sell to devotees or to post on fetish websites; sometimes they even go as far as befriending you, stalking you. Basically, you become their obsession. If you think you're talking to a young woman with a similar injury, you're more likely to divulge personal information about your injury and the complications from it- this is what they get off on. I have met many girls who were fooled by pretenders and it became extremely dangerous, starting online and turning physical, a stalking nightmare where many of these girls had to relocate. 

            Then we take it one step further, the wannabes. These are people who not only pretend to be disabled; they take it a step further to make it to where they become disabled. I promise you, I cannot make this stuff up. The following is an actual quote from somebody on Facebook:
             "I have no amputations, i adore women getting ready to have one though especially when its voluntary, i do like wannabes :)Description: :) ,i have hoped to meet a woman who wants her feet/leg gone so that i may be able to have the feet after they are removed, i love ankles stumps too as well as below knee..."

            Each time I read it, I am more disgusted. To think there are actually people who cause themself be disabled. It is a serious disorder and is not to be taken lightly. For girls like me, people like this are true predators. I find myself very fortunate to discover this ugly truth about the “dark side” being so relatively new in my injury. Finally, there is one last group of people. These are what we call “Troll Feeders.” These are women who are actually disabled, whether it be amputees or wheelchair-bound. These are women who will sell their photos and videos to the devotees or fetish websites. I cannot imagine why, maybe they have the mind frame “well, if you can't beat them- join them!” And some of these women are considered famous in the disabled community for their achievements, whether they are wheelchair model/spokesperson, a famous blogger, or even a former Ms. Wheelchair America (yes, we may be disabled but we do still have pageants.)  These are women who are supposed to be role models to newly injured girls such as myself. Instead, they sell themselves out and try to convince other girls to do the same. Even if they are not vocal and trying to convince you, if you indeed “friend” one of these women on Facebook, they then have access to your photos and information to sell to devotees and fetish websites. This goes for everybody, not only handicapped people, but practice online safety. Do not put extremely personal information (address, phone number, etc.) for everyone to see. Really make sure you know who you are communicating with. You never know who may be lurking behind the computer screen.