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

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.