Learning a new normal

In my last post I wrote about leaving for rehab in Atlanta with my mom. It was important that I go to rehab so that I could learn to live as a disabled person, and also so that my mom and I could learn how to take care of my specialized needs, so that I could have the best quality of life possible.

We left for my rehabilitation at Shepherd Center on Wednesday, January 7, 2004. I had to spend my first few days in the facility's ICU since I was a ventilator dependent patient. During this time a physical therapist came to see me as well as one of the wheelchair technicians. They got a temporary wheelchair ready for me that I could use while I was in rehab. This wouldn't be my permanent wheelchair, but it would be the chair I would use while in rehab. (I would ultimately have my own chair built for me and it would be customized and personalized to suit me and my preferences. I had choices between different things like various headrests, armrests, backrests, and of course, color.)

The real work in rehab started the Monday after I arrived. I started a "weekday routine" which started at 7 AM each morning when the techs (nurse's aides) came in to give me a sponge bath and get me dressed. No more hospital gowns, which is what I had been wearing for the past seven weeks while in the ICU. I was no longer able to dress myself since I couldn't move any of my body parts from the neck down, so the techs had to physically dress me. I was a grown adult, so this was easier said than done and it involved a lot of pulling, tugging and rolling my body from side to side to get the clothes on. I no longer wore any sort of collar or brace around my delicate neck, so I hated having to have my body turned from side to side and moved back and forth because it hurt my weak neck.

Every day I had an hour of occupational therapy and an hour of physical therapy. I enjoyed getting out of my room and going down to the gym where the patients had therapy. I still couldn't talk, so it was frustrating trying to have any sort of conversation with anyone because it was very difficult for people to read my lips. I really enjoyed my occupational therapist, Rashida, because she was young (26) and had gone to occupational therapy school at Washington University in St. Louis. Not only did we both have a connection to St. Louis, but we had several other things in common, too. Talking to her made me feel normal.

There were also classes that my mom and I went to. In these classes we were taught about spinal cord injury (sci) and the effects that spinal cord injuries have on the body. We were taught the importance of skin care and turning/repositioning the body every few hours to make sure that I wouldn't develop pressure sores (or bedsores, as they are most often called). I lost all bowel and bladder functioning after my accident, since the muscles required to go to the bathroom were now paralyzed. We learned different ways people could take care of these needs, depending on whether you were male or female, and what your level of injury was. We also learned the best way to do a bath in bed and also the easiest way to wash my hair. None of these things were exactly fun to learn and figure out, but since I wasn't going to be getting any better, these things were necessary to learn so that I could have the most comfortable, healthy and productive life possible.

I also had assistive technology classes where the patient's were shown some of the different types of assistive technology available to help disabled patients do different things, depending on what their limitations were. Since I still wasn't able to talk at this time, voice recognition programs for things like computers weren't an option for me. There was a system on one of the computers called a Darci system, where you hold a special sip and puff straw in your mouth, and then you would be able to write words through Morse code. Each letter is made up of a series of dots and/or dashes in Morse code, and to make a dot you had to gently sip on the straw, and to make a dash, you would gently blow or puff through the straw. Making each letter involved several sips and/or puffs to make the different dot/dash combination for each letter.

Here's an example of how you would type out the name Heather using this system: H: .... (four short sips on the straw), E: . (one short sip), A: .— (one short sip and one short puff), T: — (one short puff), H: .... (four short sips), E: . (one short sip), R: .—. (one short sip, one short puff, one short sip). As you can see, it was quite a tedious process trying to make just ONE word, let alone an entire sentence. The process was time-consuming, but it got easier and faster the more I did it. Although it was painfully slow, it was something I could do all on my own. A small peace of independence.

Here I am using the Darci system to type an email.