The unfolding

I've been hard at work in the gym! The days are flying by and it is indeed true that days are getting shorter. There's just not enough time in the day/evening to do, write, read, see, say all I want to and I'm not even working! Christmas is around the corner and I'm already planning gifts but I haven't thought about thanks-schmanks! I like some turkey and whole cran-sauce. Other than that, I like peace and quiet. No drama. Pumpkin pie is a real treat! All that they have here at the facility. When I think of thanksgiving- giving thanks, I don't want to over do it this year like the past. I want to eat the right portion and not be in a coma.

I did an interview for Wheels of Progress (WOP) which culminated into more than we thought it would be! I started talking about how the nursing home system institutionalizes people and how it makes them lose motivation to keep them there and out of the community. I even gave specific examples of people who have the function to thrive in the community but lack the resources or the motivation to get out. Then, at the support meeting, another nail in the coffin! A T12 paraplegic who uses a POWERCHAIR speaks about how he wants to get out of Beth Abe, but doesn't know if he wants to work again. He's been here several yrs.

WOP is going to be a different organization. It's for people to progress to the community, work, give of themselves, not be in a nursing facility for an extended amount of time. After being here, I have different thoughts for what I want for my parents later...But as for younger people who are disabled but capable, we can have the option of living in and contributing to the community, working again, going back to school, being an athlete. You just need the drive. I see WOP as the resources and services to point you in the right direction: Residency, PT/OT, transition guidance into the community in a nutshell. As I speak with founder, George Gallego, I will fill in any gaps but I hope this idea will spread like wildfire! The nursing home system is sucking up money it doesn't have through insurance and it's so much cheaper for us to stay in our own place while getting the help we need. I'm excited to take part in this new project, see it unfold and take flight!

I'm really tired of my routine here! First of, waking up in pain really sucks. I spoke to a "pain specialist" again to change meds. This time, I'll up my topomax dose. It's just all trial and error.

Another big issue is my roommate turns on her television at 7am when I like my last 2 hours of rest. I'm forced to listen to the news and all these stupid day time talk shows I couldn't care less about. After a couple months hearing it day after day, it really began to get me annoyed. I asked her to lower it in the morning. At first she did but now she complains about my humidifying machine! So I've resorted to turning on my television to tune out Regis and the Wendy Williams show. It's so ridiculous! Although I have been enjoying cartoon network. The best part is that a) it tends to be louder than adult tv, b) it doesn't have the same annoying commercials! I'm not even a TV person. I like quiet. I like reading and writing. I research online. Listen to music (on headphones!) Occasionally, I watch TV before bed but not consistently to drive someone nuts. I give her ample time to be in the room alone but I rarely get any alone time. It's important around here! I'm surrounded by loud ass people who have mutilated the English language and they have no regard for personal space. You truly are an inmate here and the more dependent you are, the tighter the leash. I-N-S-T-I-T-U-T-I-O-N-A-L-I-Z-A-T-I-O-N.

Other than that, I've been doing pretty well in therapy, getting stronger, doing push ups on the mat! I've been working a lot on my trunk since my posture/balance is poor. I'm going to get fitted for a brace, but really focus on strengthening as to not rely on the brace. My endurance still sucks on the arm bike but it increases every week. On the pulleys, I focus on triceps. The main thing that blows in the therapy program here is that the transferring technique. If you cannot transfer yourself, good luck getting some good mat time. I'm minimal assist which is the only reason why my therapist will get me on the mat 2-3 times a week. Much of the time, the mats are not used, the therapists and the aides are chatting, laughing. More and more people with spinal cord injury from Mount Sinai Rehab are getting funneled into Beth Abraham. Quads, in particular, are not getting mat time or practicing transferring skills. Moreover, we are not learning daily living skills like bowel and bladder management. I like what I do with my therapist, but I do notice that people are getting comfortable and residents lose out. I was hoping to have a dialogue with a therapist from Mount Sinai on teaching transferring technique here. I think it would be beneficial and why not? MS brings in enough money! But so far, I have gotten dodged and I'm not sure if it's intentional due to strained relations between me and certain admin there. Maybe I'm paranoid?

In either case, my spirits were lifted by 2 comrades that came to visit me today. They encouraged me to continue to voice my thoughts and contribute my ideas to the cause. I feel honored and respected. I know many people stand behind me but sometimes discouragement sets in. So I will "pen" more of these ideas as I go along.