where wheelchair users and BIID/transabled unite!


Oh God! Three days later I still can’t believe what is happening to me. I’m 16 and my life has really been turned upside down. I live in a foster home and during a routine physical I made the mistake of complaining to the doctor of some aches and pains that I had been having that had gotten progressively worse the last few months. The doctor listened to me and then said he would like to run some tests and take x-rays. I had had that type of thing done before, so it was not a big deal. However, the doctor’s office called and wanted my foster mom to come to the office with me for a consultation. I went numb as the doctor told my foster mom that the tests and x-rays had reviled a very serious condition. I had developed a very rare immune system disorder that caused my body to have decreased bone mass, as well as, joint and ligament weakness. This disorder was affecting my spinal column, hip and knee joints most specially. The pain I was feeling was caused by my spinal column developing scoliosis, kyphosis and lordosis. The resulting curves were placing pressure on the discs in my neck and back. My hip and knee joints were inflamed and unstable. The treatment for my condition was unknown to my doctor and he was referring my to a specialist in the area. He told my foster mom that most likely I would have to have gene therapy as a treatment option.

The next day we sat in the specialist office and he told me that gene therapy would help me, but due to the expense of such treatment and the as yet unknown long range effects of such treatment, that he would pursue a more conservative treatment option. Braces without delay! He then went on to explain that my condition was not reversible and that if I did not start wearing braces immediately that I would most likely be crippled within a few years and dead a few beyond that since my spine would start to collapse and effect internal organ function. The braces would in effect save my life at the expense of being confined in them for a lifetime.

I told him I would not wear braces, that I preferred the gene therapy option. He and my foster mom just smiled and said that I would wear the braces since it was in my best interest. I then told them I preferred a short life of freedom verses a life of confinement.

When we got home my social worker was at home to meet us and she and my mom discussed my situation. The social worker explained that as long as my foster parents did not have problems from me about wearing the braces that I could stay in there home. If I did not cooperate then I would find myself in a secure state run medical facility where I would be forced if necessary.

The following afternoon I was strapped into a medieval frame contraption and casted from my head down to my knees. Its was very embarrassing to take off my clothes in front of two men and then be strapped down and be unable to turn and hide from their eyes. The older of the two men did not seem to notice my body, but the younger one did. He kept saying that I was a very fortunate young woman to have caught my condition early and that the braces would allow me to lead a normal life. As he was saying this, he was applying plaster to my chest area and telling me that I was quite attractive and that people would overlook my braces. YEAH RIGHT! I still did not know what they would look like and when I asked they would only say to wait and see when I pick them up next week. After they cut the cast off, they put me back in the frame and started putting another cast on me. I asked if they messed the first cast up to which they replied no. They explained that the second cast was one I would wear till my braces were ready according to doctor’s orders. Panicking I tried to get out of the casting frame but could not. They asked me to calm down and they would not take long. An hour later I walked out in a fiberglass cast from my shoulders to hips. They had attached a metal and plastic ring around my neck that forced my head and chin up eliminating any movement to the cast and metal bars with hinges connected leg braces to the cast also.

When they released me from the frame I started to bend and pick up the screwdriver they had left on a stool by the frame to throw at them. I lost my balance as the chin pad dug into my neck and I screamed in rage. How dare they keep the details of the cast from me! I felt tricked and betrayed. They backed out the door and called my foster mom. My foster mom showed up with my social worker came in to calm me down. I did not want to be calmed though. The social worker again explained my options for compliance and I reluctantly agreed to get dressed and go home. I could not believe it! I had a date that night and was being a forced to wear a hideous cast.

As soon as I got home I locked myself in my room and tried to remove the cast. I could not get it off no matter what I tried. A knock at the door informed me that my date had arrived. In my fury to get the cast off I had forgot to call and cancel my date. My foster mom picked the lock from the outside and came in to inform me that I was to get dressed and quite feeling sorry for myself and go out and have fun. The other choice she gave me was to call my social worker.

How does one dress for a date in a body cast? I did not have a bra or panties on. The cast was too big and my jeans would not fit. After 30 minutes of trying different things I angrily put on a skirt that would fasten around the cast and covered most of the leg braces. The only top I had that would fit and match the skirt was a silky button up affair that showed way too much of the cast, metal neck piece and my boobs for my taste. But I did not have much of a choice at that moment. I did not want to go to a secure state run medical facility.

My foster mom got tired of waiting on me and sent my date up to my room. He knocked before walking in the open door and I nearly fainted from embarrassment. He walked over and said that my “mom” had explained my situation to him and that he was glad I had decided to go out anyway.

The next 2 hours were a blur. I could not do anything that I tried to do. The cast was so restrictive and hot! I had planned on a fun evening with my date and I had decided to have sex with him that night if things worked out. Instead, I was in a body cast and furious as hell. The more I though about it the madder I got. Finally I ask my date if he would help me take the cast off. He did not know if that would be wise, but I told him that if he did I would have sex with him.

It took over an hour to get the cast off using his dad’s tools, but it finally came off and I breathed in deeply of my freedom. It felt so good being out of the cast. I had started feeling cramped and stiff. I made good on my promise to him and later crept into the house after everyone was asleep.

The next morning my social worker woke me with orders in her hand that I was to report to the orthotist office to be requested and then report with her to the Parkview Secure Medical Facility if I failed to comply with my treatment regimen. To ensure my compliance, she had brought a State Juvenile Officer with her that was waiting down stairs.

The trip to the orthotist office was long and unpleasant with my social worker giving me the “talk” all the way.

The orthotist meet with my social worker before seeing me that morning and when I was again strapped into the frame, I was informed that this cast would be different than the one they put on my yesterday. They put a double body stocking on me and then began applying an extremely heavy and thick layer of fiberglass to my body. The cast went from my neck down to my hips. They did not use the metal neck ring nor did they leave my chest exposed this time. They then had a nurse come in and administer a catheter before they applied the cast between my legs also. The metal bars were reattached for the leg braces which had locks on them this time. As if that was not enough, they attached straps to each side of the cast at waist level that Velcro in place. I would find out there purpose later.

The nurse came in again after I had been released from the frame and helped my put on a T-shirt and shorts that my social worker had brought for me. Then my social worker came in and explained that this cast would be much harder to remove until time for my braces to be applied. I thought it strange at the time she used the term applied, but I would find out in 7 days. She then showed me the purpose for the straps on each side as she pulled my shirt up slightly and fastened each of my wrists to my side. She told me that since my behavior had been so unacceptable that the straps would provide a reminder that further misbehavior would put me in the state medical facility. She then explained that my foster mom had agreed to allow me to stay as long as she had control over my movements and actions. The catheter and straps would allow for that. For the next 7 days, I was not allowed out of the house or the wrist straps. I had to have permission and help to us the bathroom and eat. It was a very humbling and embarrassing situation to endure. I was left naked expect my cast in my room. The only time out had been a brief walk around the neighborhood, which had proved to be very uncomfortable with the cast between my legs and the cast around my neck rubbing.

The 7 days passed slowly, but the day of my release from the cast finally came. The braces had to be a relief from this thing. Being able to get out of the braces when no one was around would be great. I had already planned on how to not wear it while at school or on the weekends when I went out.

When I arrived at the orthotist shop I was immediately shown to a room with tools and machines of all sorts all over the workbench and walls. I was told they were waiting a metal specialist to arrive before they started. I asked if I they would go ahead and take the cast off while I waited, but they said not yet.

I little while later a mold of my body that had been made from the cast was wheeled in on a table and parked right in front of me. Next they began assembling the brace on the model. It was terrifying. There was so much metal on the brace and it looked like it would be more uncomfortable than the cast. As they were assembling the brace they started cutting me out of the cast. As soon as it was off, they brought in another brace which they explained was a Milwaukee back brace and would be my secondary brace to use while my other brace was off to dry, be adjusted or for exercise. I did not understand what he was talking about, since I was busy trying to see the Milwaukee brace before they tried it on. They opened it up from the back and pulled it around my hips and tilted it up into position, but it was several inches to tall which I commented on. They told me to stand straight and stretch. I had not realized it, but as soon as the cast was off I had slumped into a hunched position. I began to stretch but the brace was still too tall and then it started closing in back over my upper back. The pads slid into place over my hump back forcing my back straighter than I could do myself and my chin popped over the chin pad and settled into place. The brace was then pulled together and tightened rather painfully over my hips and around my waist with three straps. The neck ring was fastened together. The kyphosis pads pushed my hump back curve straight, but also pushed me forward into the neck ring and front bar of the brace. Before I could explain the discomfort I was feeling, they screwed two straps to the outside of the front bar just above my breasts. The straps had two rings attached to them which I was instructed to place each of my arms. Then they settled them over each of my shoulders and then instructed me to pull my shoulders back as far as I could. I felt the straps in back tighten. The orthotist looked at my shoulders and reached to pick up a round pad with a short metal bar attached to it that he then attached to the underside of the front upright. The pad pushed back against the very top of my breast bone pushing my upper chest up and back further straightening my kyphosis and relieving much of the pressure of my chin and neck on the chin pad. The front bar then touched my chest between my breasts. The orthotist then pulled the shoulder rings tighter pulling me very straight. I even had to admit that my posture had not been that good in a long time. They then added side pad just under my right arm and one lower just above the pelvic girdle. They placed a third pad on my left side in the middle thus pushing my scoliosis curve straight. They then looked to my neck ring that was now much lower and comfortable than when they first put me in the brace. This was not to last though. They raised the neck ring till the chin pad touched my chin with me looking straight ahead. They bent the occipital pads at the back a little forcing my head up and forward a little.

I must admit that at this point I was ok. The brace was awkward but my posture was great (I was happy about that, I had not liked the way my posture had before the brace) and until then I had not noticed the lack of pain. The cast had not held me so straight and I had hurt a little even in it. The brace however completely relieved my pain.

That is when they ask me to stand an bend and then stand an sit. Bending or sitting caused the brace to ride up my body and the neck ring tried to pop my head off my shoulders. They trimmed the edges a little, but not enough since the girdle was supposed to ride very low behind and around my hips and then very low in front to maintain my pelvic tilt to reduce my lumbar lordosis. They then had me bend and stand again, but he brace still road up my body and was very uncomfortable. They then attached two straps to the front of the brace. I was told to spread my feet and squat slightly. Then they pulled the straps down between my legs and then attached them in back with two catches. It was a very strange sensation. The straps pulled the brace girdle tight down on my hips, but left me with a very peculiar feeling. The straps did however, keep the brace from riding up when I sat down or bent forward what little amount I could.

I was then told that the Milwaukee would be to sleep in and do my exercises and stretch. They then took me to another room where for the next hour a therapist made me do all sorts of stretches and exercises. I was left alone to rest while they prepared the final adjustments on my primary brace. I had only been allowed to put on a pair of shorts when they brought me in to exercise and stretch. Otherwise I was naked except for the brace. I began inspecting the brace in the mirror and had to admit that it was a well made thing that gave me perfect posture. All the exercise had made me sweat I began to feel for the releases and straps on the brace so I could dry off. As I was doing this the nurse walked in an told me not to bother with trying to remove the brace. The brace was locked on with special fasteners, which required a special tool to release. This was being done to ensure compliance. Before I could protest though, I was told to follow her to begin fitting for my primary brace.

The primary brace was to be worn during the day while I was at school, during outside activities and at any other time where its extra support would protect me. The Milwaukee was to be worn at all other times.

The primary brace was much like the Milwaukee in concept, but made all of rustproof metal and had the addition of leg brace that went down to below my knees. They told me that I could swim in the primary brace and that I would be required to swim at least 3 times a week for exercise. They had to be joking! I would sink in that thing with so much metal.

They took the Milwaukee off and then began applying the other “thing.” It is horrible! The primary brace had the same set up as my regular Milwaukee except that the neck ring is a 2 poster neck brace that stretches my neck up and the groin straps are replaced with a metal bar and then the leg braces. It is just awful. I was told that it only weighs 16 lbs., but who cares! There is absolutely no way to hide it with clothing. Bras and panties are out of the question. I mentioned how was I supposed to wear a bra and they told me there was no need. They then brought out a metal piece that looked like a bra but without the straps. They showed me how it clipped into place to provide me with support. It would not have been so bad if I did not have large breasts. But since I do, the brace made me stick out my chest and the metal bra just made them seem bigger than life. I was crushed.

They then told me what I had suspected. The metal brace did not have to be removed daily if I did comply with my treatment regimen. They could leave in on me indefinitely.

My foster mom then showed up with clothes for me to wear home. She produced a pair of jeans one size larger than I normally wear and a thin white button up top. How could she do this to me? Everything would show through. The jeans just did fit and I could see in the mirror that every bulge, straps, and screws showed through. The jeans were not as bad as the shirt though. Looking in the mirror I could every outline of the metal beneath.

They pulled me out of the room to face the world as a metal cyborg freak. I could hardly wait till my 18th birthday. They could not make me wear this stuff then! I would still escape this damn brace.

6 months later

I bitched so much the first few weeks that I had to wear the metal brace for 18 days straight. I finally gave in to them to get out and get a real bath. I have now settled into a routine with the two braces and school. I’m still a freak at school, but most everyone has stopped teasing me and started to accept my situation now. I have even been out on a couple of dates if you can believe that. I think they thought I could take it off anytime I wanted, but when they found out I could not, there were no second dates.

My worst experience to date was when my foster mom made my go to a swim party for on e of my girlfriends. She put me in the metal brace and a swimsuit! Everyone stared soooooo hard! I’m still embarrassed 2 months later, every time I think about it.

2 days after 18th birthday

I can’t believe it! They changed the brace so I could take it off myself. I will never wear it again!

2 days later

I hurt so badly. I haven’t worn my braces for almost 48 hours and my back is killing me. I just put it back on and received instant relief. I think I may be dependent on them now! I just can’t accept that at this time though. I waited so long to get out of them.

I will just have to think of what to do next……..

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