Thursday, August 31, 2017


Yesterday and today I did not have an accident. I woke up. I pushed my call light button. Someone came

I didn't have to begin calling ' Can someone help me, please? I don't want to have an accident. I am about to wet the bed." I didn't hear a nurse getting morning meds ready outside my room. I did not have to wonder why she did not ask someone to help me. Or, why she did not help me herself. I pushed my call light. Someone came to assist me.

I missed breakfast once because an aide left me in bed on my shower day. She returned after half an hour. By the time I got my shower They were cleaning up in the dining room by the time I got there. The staff got me my cereal, yogurt, and raisins. I ate breakfast. They cleaned up around me. Today was my shower day. I pushed my call light button. Two people came. They helped me to the bathroom. My aide got me in the shower. I was up, dressed and ready to begin my day. I had plenty of time before breakfast started.

Being helped the past two mornings so I didn't have an accident is a HUGE deal to me. My aides, the past two mornings, have been kind and understanding. They did not just walk past my door.  They did not come into my room, turn off my call light and tell why they could not help me. They did not make me beg for help.

There are good people here.There are people who care. I want to thank them for helping me. I hope they know what a difference they made in my day.

I am always writing about what's wrong with this facility. .I just thought it was time that  I wrote a post about what's right with this facility

Tuesday, August 29, 2017


I have tried to stop writing this blog three times. Last week I told you that I was discontinuing writing this blog again.. I meant to keep my word. I really did. I can't because I am a blogger and a writer..That is who I am/Blogging/writing are a part of me.  I can not change the negativity in my posts. My posts are my truth. Another resident may see things in an entirely different way. I can only speak for myself.

I am going to write at least one positive statement in my blog posts beginning with this one. I am allowed to wet my bed every morning except when one aide is here. No aide comes in my room except to turn off my light. They tell me that I have to wait. I have told my social worker, the assistant administrator as well as the director of nursing. All of whom are very concerned. While the issue has not been resolved as yet, I believe in them.They assure me that they are working on it. I take people at their word.  I know the issue will be resolved soon. 

 I stand behind everything I write. I welcome the opportunity to speak with anyone connected with this facility to create an open dialogue. An open dialogue, I believe, will create a positive outcome regarding my life here. again, I welcome discussion. Any blog post I have written was meant to bring issues to light so conditions would improve. I hope the staff and administrators here are reading my blog. I welcome your comments.

I need to blog. I need people to read my posts. I need to speak my truth. It is what I do. You don't have to read my blog, but I am still going to write it.

Wednesday, August 23, 2017


I don't know if writing this blog is worth it anymore. People connected with this facility do not like my negative posts. If my posts offended anyone I  apologize. That was not my intention.

When I wrote for Voyce the staff there wanted to know what life was like for me here.  I made a video for them. They used my essays and video in training sessions. I was using my voice to try to make things better. I was making a difference. That's what this blog is about. Shedding light on issues.I decided to write the essays as blog posts because I thought my essays would be of interest to my readers. They were.  My aides were not happy. I was retaliated against. Aides refused to come in my room. Some of them asked me not to write about them in my blog posts. I was and still am, thought of as someone who gets people fired. I don't have that much power. Aides get written up or fired because of their behavior. 

Believe it or not, I am I the last person who wants to see anyone lose their job. The aides have families. They need their jobs. I just want to be treated fairly, listened to and have my wishes respected.  I stopped writing for Voyce. The pressure was too much. 

If some all the aides here took the time to get to know me,, instead of listening to rumors and judging me by my past behavior,, they would see the kind of person I am. I am just trying to get my needs met, not have accidents and not be forgotten.

I am learning that if I advocate for myself things just get worse. .No one will help me. It took me almost three years, but I understand now. it is best to keep quiet and get the assistance I need.It's sad, but it is a fact. If I speak out no one wants to listen.

I wanted to make a difference. I wanted my writing to matter. I wanted to help to bring about change. I felt it was important to let people know what it is like to live in a skilled nursing facility.I wanted to write my truth.

I think I will stop blogging for a while. If I cannot speak my truth there is really no point.

I will still be writing.Writing is a part of me.  I just won't be blogging. Maybe I will blog again, maybe I won;t. Only time will tell.

Thursday, August 17, 2017


My mother took care of me until she was eighty-seven years old. The reason she was able to do that was that I kept my weight down.  We had sweets and chips in the house. I just watched how often I ate them.

When I arrived at this facility I weighed approximately ninety--seven pounds. Everyone kept telling me to eat. I was underweight. It took a while until I was able to get above one hundred pounds. I was proud of being able to keep my weight down.
I am ashamed to admit that I looked down on other residents here because of the foods they eat. Didn't they know that all those carbs and sweets they were consuming would cause them to gain weight Didn't they know that if they gained weight it would be more difficult for the aides to assist them?  Didn;t they care about their health? I couldn't understand.

I understand now why residents eat the way they do. I understand because I am eating more too, specifically, desserts. Sweets make me feel better. Eating them helps me cope with stress better. I still try to eat healthily.  I eat mainly salad and fruit. The only difference is that I don't deny myself dessert anymore. If I want something sweet, I eat it. My weight (so far) is still okay.

One of the side effects of the anti-anxiety medication I am taking is weight gain. Now, I am stressing about medication that is supposed to help alleviate stress. It is a vicious cycle!

I know I cannot eat this way forever. I will just enjoy it while I can. I hope someday I will be living somewhere that is less stressful.

Until then...

Does anyone have any cake?

Friday, August 11, 2017


Ableism is defined as discriminating against a person with a disability in favor of an able-bodied person Inspiration Porn is defined as being inspired by someone just because they have a disability. When I was young these terms did not exist.  The first time I heard them I was confused. I did not understand what the terms meant.

Growing up I never thought about being proud of my disability. I was disabled. I had CP. I wasn't proud of it. I wasn't ashamed of it. It was part of me. It wasn't who I was. I knew that, inside, I was just like everyone else. The difficult part was getting everyone around me to see me that way.

Before I entered The George Warren Brown School of Social Work my mother was told, by The Dean of Admissions, that the school did not want me. .GWB had to accept me because I met the qualifications for admission..My first advisor  told me that he "would rather see me fail than help me."  I didn't make a big deal of it.  I got rid of that advisor. I was determined to prove the school wrong. I did.

I have been told twice, by The Office of Vocational Rehabilitation, that I am unemployable. Again, I am determined to prove that wrong.

I guess I view things differently than the majority of disabled people. The ADA has opened many doors for people with disabilities.   However, a part of me thinks it is sad that people with disabilities won't have the experiences I did in seeking to get an education and find employment. Those experiences  made me a stronger person,

I have been patted on the head, both literally and figuratively, more times than I can count. I have been spoken to condescendingly and ignored. It is not right, but when you are disabled, (sometimes). you have to deal with it.

Ableism and Inspiration Porn have always existed. The only difference today is now they have names and definitions. I don't think that I will ever truly be thought of as equal by society.  There will always be people who will view me as different. In a  perfect world that wouldn't be the case. The world isn't perfect. I am different. I need services and assistance that others don't. That's not a bad thing. That's just how it is.

I try to live the best life I can. I keep pushing forward toward my goals. I continue to advocate and raise awareness through my writing.  

Maybe someday the world will be perfect. Maybe someday we won't need terms like Ableism and Inspiration Porn.  Maybe someday everyone will look at me and not see my wheelchair. Maybe someday everyone will really see me.  Maybe someday.


Wednesday, August 9, 2017


Being positive is a choice. I can choose to focus on all the things going on around me.that stress me out. Or, I can choose to focus on my goal of transitioning out of here and back into the community. I choose the latter.

I had a care plan meeting with the staff here. My case manager was also present. She asked about my needs.  She asked if the staff thought I would be able to live in community-based housing. All agreed that, with the proper supports in place, I would.

I had to answer eight pages of questions. This was an assessment of my skills and abilities. A few of the  questions were "What is bleach used for?"  "How would I find a job?"  I was asked to calculate the correct change, in my head, after a purchase had been made. (The one thing I could not do.) Except for calculating change, I think I did well.

My case manager returned two days later. She asked more in-depth questions. Gathering information for my plan. My plan must be submitted and approved. She hopes it will be approved before she retires at the end of September. Another case manager will take my case at that time. My profile will be sent out to various agencies/.Hopefully, a spot in community housing will be found for me.

She asked what the one thing was that I would like to do if I am assimilated back into the community. My answer was. ""I know I won't have much money, but  I'd like to go out to dinner,"  I  told her I wanted to have some type of part-time so I would have a little extra money. She asked about my hopes and dreams. My hope is to be released from this facility. My dream is to be a paid freelance writer. All this really means is that I I just want to feel like myself again. I haven't for a very long time.

I have to keep my eye on the prize. I have to stay positive. I have to keep moving forward. I have to believe.