Writing the stories

I wanted the monologs for the veterans awareness play to be directly from the veterans. I decided to write samples for when I need to show the sales book to prospective sponsors. I know I enjoy writing and I have knowledge of the veteran and family experience. However, I did not realize how easily it would come to me and how detailed I could be in each topic. I did four with twelve more to complete. I still want the responses to be directly from veterans but if I am unable to get enough, or if I have extra that is wonderful. One of the reasons I love this is because I am in charge of everything. TRR gave me approval as long as the other group involved shares the same vision. That should not be a big issue.

Veteran Awareness

Another population that needs more exposure is veterans. People may think of them on Veterans Day and attend parades however, the transition to civilian life is rarely smooth; for many life is interrupted by nightmares of battle or physical conditions, or both. This is why there must be a concerted effort for an event that focuses on the issues. I have created an educational play in which people pose as veterans and family members address difficult topics. For example a spouse has a monolog on the hardship of paying bills with only 1 salary and dealing with anger issues from the kids, veterans talk about how hard it is to get a job with constant horrific memories of combat interrupting concentration on job duties. I am hoping the idea will be approved by Team River Runner and I can start working on this project. Just as my goal during my time in Hershey was to network. My goal during my time recovering is implementation of this project.

Special education

I am concerned because it is usually a struggle to maintain and implement Individuals with Disabilities Education Act. Now with the possible appointment of Betsy DeVos, there are going to be real concerns for students with disabilities getting services in public schools as well as public schools in general. She admitted that her appointment was due to her family's extensive financial support of Trump's campaign and her experiences is largely with advocating on behalf of charter schools. Traditionally these types of schools are not disability "friendly." We can write are legislators if we feel the need to be heard but other than scheduling a second confirmation hearing due to congressional concerns, what we can do may be limited.

Great option

The Pennsylvania Planning Disabilities Council has a great opportunity for an individual to get funded. People can dial in and listen to other people's projects. I wonder how many projects I will be listening to but I am eagerly awaiting 1pm. Perhaps some groups who were not awarded grants. I was considering introducing Vocational Venues in which businesses watch a video and discuss concerns about hiring people with challenges. I'd bring up tax incentives and examples of reasonable accommodations. Then I was thinking of something related to Team River Runner. I am not really approved yet as an "Outreach Coordinator." My third idea helps veterans even more directly. I would offer to create a booklet of resources and concrete suggestions to provide a veteran with the resources needed as well an tools to empower him so he can manage is disability. This idea was also a grant offered by the PPDDC in October. I just hope that I can clearly convey the project so it will get approved.

Future spinal issues

The hospital bed is something I realize I must keep even though it makes me feel bad. I feel more like a disabled person but in the long term I can not rise from a sleeping position without shifting all of my weight to the right side then yanking my head while pulling my arm. Even if I feel like my neck is stronger that long term movement will loosen the screws hurting my vertebrae. Also thinking long term I would like to get involved with spinal cord issues, especially advocacy. All it takes is a few dedicated people to write letters to Congress and fertility clinics about the importance of not discarding a fetus because that is how to get blastocysts. If people understood the importance of these cells, perhaps they would be more conscious. More tests could be done to cure spinal cord paralysis. That's a perfect project for me.

Some networking success

One thing while in Hershey rehab, went as planned, well it was never actually planned. My goal was to network with professional at Hershey to share my Infobility literature. Although I did learn of an event they were having called Rec Fest; an adaptive sports event. I connected TRR (the kayaking group)and IM ABLE Foundation with them. I just received confirmation from the event organizer that TRR will be a vendor. That will go a long way with my next plan which is to grow them financially through fundraising and increase membership through outreach. I need to concentrate on a big, already established group rather than start something like Infobility from scratch. If, in the process, someone is interested in joining me in disability education or if TRR would let me put something on their website that's great but it won't be my goal. I must do that by coming in from the back door because my past techniques have not worked so I will not waste any more time pretending to be a speaker.

A brand new shower bench

I just purchased a brand new shower bench as soon as I realized the old one was corroded. It came and nobody was as excited as I - you'd think I won a million dollars. I brought it home and set it up just as the old one was, higher on the left 2 legs than the ones on the inside- I huff and I puff and I take up to an hour! I assume it's cause of my surgery and I'm weaker so I continue to keep trying new configurations. Then after 4 transfers all differently I slide back and realize the surfaces, which used to be perfectly even, suddenly aren't- this is nuts. I figure out a final solution by folding a blanket to use as a platform but this should have ever been in the first place! Just like my latest wheelchair which 2 years later is still causing me to be stuck in dangerous situations. People who have never needed disability equipment make "mistakes" that none of their coworkers understand.

Next shift

Mom's leaving and friend's coming. I've tied up the "loose ends." I figured out how to get myself all the way up in bed even if I slip down a bit. Solution- I have a long ribbon wrapped around the bed and tied to a long stick so I can get myself into a sitting position. I've figured out how to keep my foot from falling between the footplates. Solution- I have a pillow on my both of my two footplates then a bungie cord to rap around the pillow and the footplates to secure it. The shower will be easier than the other 4 times. I will get it lowered so I won't have to transfer uphill. Going back into my wheelchair was always (psychologically) easier for me. Also my "boss" whose job I declined wrote me and I was able to give him connections he could use. I'm almost "back in the game" AND I found some new ones at Hershey, I'll speak there and work on the Rec Fest too.

Much closer

Neck brace taken off- doctor's orders. I had a feeling he'd be less strict but I was not counting on its complete removal. I have approval to used Red Rose Transit and my mom is gone. My favorite country singer is in Harrisburg on the 20th. How can I get there and back in one piece. Interesting challenges. I can borrow my van for a day, I can hop an Amtrak, or I can ask Colleen. I can always ask...it would practically be Against Medical Advice but it isn't like I'd be leaving a hospital. I'm just doing what a fan would do. I will still baby my neck as much as possible and I'd wear the brace. We'll see.

No different

Home health care PT did not come, did not come, so I called and was told that there's a 2 hour window. I asked why should I have to wait that long, I have plans. As usual no one knows anything not even scheduled for a home health aid at all! The girl who answered the phone just gave excuses that my case has not been processed through the computer yet. Then she finally said that she'll get a physical therapy assistant. Later she called me and I asked her if there's an evaluation to fill out. I wonder if she "got it" probably not. I would love to write an evaluation like none they ever read. Still these professionals think disabled do nothing all day. The PT came and I practiced getting on the bed and tried to figure out how to arrange my body so I could sit up and transfer into the wheelchair. One idea is to but a pillow at my bottom so I won't sink. PT was worried my heel skin would rub would. I said it really won't matter cause we both know you won't be here in 3 weeks. She sounded so concerned but I knew it was not how reality worked.

my projects

For Team River Runner - I developed two list of 1)outreach locations 2)fundraising ideas. Bill wrote me back immediately so that felt good to be appreciated. For Futures Planning - I developed a booklet simplifying the concept and taking the categories and putting explanations and thought provoking questions with line. I feel like I'm back, now I will check on "Angels on Call" to see if they are actually working on the special education track for students with intellectual disabilities. Perhaps he came up with a 7th idea. Lastly I'm calling Paul Klug from Bayada to ask if they are still opening in Lancaster. I'll mention that I am using the OT and PT services for recovery from this surgery. I want brownie points.

Surprise friend

The last few days I started talking with one CNA. We exchanged emails and then I wrote to her. In one day she replied, wow was I shocked. I replied to her and she replied again to me. The CNA with whom I expected to stay in touch disappeared. Hopefully we can meet somewhere when I'm better, she'd like my van. I want to meet the other ex-patient with whom she stayed in contact. Now I have a real connection with Hershey. I'll be there for the support groups also and the Rec Fest in April. I should also be able to grow Infobility through t he hospital. Maybe I can do a sensitivity lesson and part of a support group as a thanks for helping market the event.

Survey says....

I was promised more than once that the survey would get read carefully. So I decided to answer it in 2 parts; this would be a one of a kind response. First the objective questions with multiple choice answers, like an SAT Test. Often the questions asked did not address the issues and were repetitive. Nowhere, did they bring up the service of the food service, respect of the CNA's, or dignity of patients. I submitted the two pages with a note that the rest would come. Yesterday I composed, on my own computer, an entire page on the importance of disability sensitivity complete with suggestions. I was careful to praise their dedication so I they see I'm not just being bitchy. They don't realize the impact their demeanor had on people. Most people didn't care I'm sure and that means no one would confirm my point. Nonetheless I got my point across and people will see Infobility.

"Who I Really Am"

Introduction- Medical professionals often work with people who have disabilities. It is important to see the patient as a person too, not just a patient. Medical personnel must be exposed to more then merely the medical terminology and techniques; there must be a sensitivity component to the training. Important points for CNA's to ponder: 1)Dignity and respect- Then first part is about dignity. This person has a name and it is not "honey." Using a sing-song, slower paced voice when communicating is treating them like a child. The second is about being respectful. If you aren't sure the best way to lift a person ask the person not the other aide. 2)Empathy vs. sympathy- The first is putting oneself in another's shoes in order to understand how s/he may feel in that situation; it's respectful. The second is feeling sorry for someone based on assumptions or appearance; it's hurtful. Why? 3)People first language- The person has many roles, attributes out side of the hospital. The disability is only 1 part of the person; therefore s/he is a person with a disability not a disabled person.