FOOD, GLORIOUS FOOD

I have always watched my weight. I wanted to make it easier for anyone assisting me.

My mom never denied me anything, but she did limit my desserts. She could not have taken care of me, by herself, until the age of eighty-seven if she hadn't.

The stress of my mother's illness and death caused me to lose a lot of weight. 

If a caregiver told me I was heavy, I  would try to lose weight.  I knew the caregiver did not mean that I was fat. She meant that I was heavy because I was unable to assist them when they were transferring me. I kept my weight down hoping it would make things easier for them.

I try to eat healthily. A lot of fruit and salads. I love yogurt too.  I have gained some weight. However, I am still a little underweight for my height. I  am a small person. They tell me I am doing okay.

When I got here,  I would notice what other residents were eating.  I would wonder how they could eat all the carbs and desserts that they did. Didn't they care about eating healthy? I am embarrassed to .admit I was judgmental. I was also a hypocrite.

It's not easy living in a facility. It can an extremely frustrating and stressful place. Some days, eating may be the only thing a resident has to look forward to. Food is a constant, food brings comfort. Food may be the only source of comfort some residents have.

I love junk food. I love desserts. There are days when I am so frustrated here that all of my thoughts of healthy eating go out the window. On those days I eat ice cream and whatever I want because I know ice cream and other desserts will make me feel better.

It's not easy for someone with a disability to keep their weight under control. No one knows that better than I do.

Everyone chooses the way they want to eat. Some days I eat healthily., some days I don't, Either way, it's okay.

Gotta go. It's almost time for ice cream!

disAbility

I saw this quote on actor RJ Mitte's Facebook page. I knew I had to write a post about it.

 "A disAbility isn't a weakness its knowledge and strength."RJ Mitte'

There are still people who view a person with a disability as someone who is to be pitied, someone who cannot contribute. Someone who is inferior. The reality is that people with disabilities lead perfectly normal lives, yet we have to work twice hard to be accepted. The world we live in is not made for people with disabilities. We encounter obstacles every day. They range from physical barriers to the attitudes of people who judge us solely because of our disability. They judge us on the basis of what they see, rather trying to get to know the person we are.  In my opinion, they are the weak ones.  

We know about perseverance because of the rejection we have encountered. I read about a young man with Cerebral Palsy who was rejected approximately one hundred times before he finally got a job. I cannot imagine what strength and courage it took for him to continue to apply for jobs. He persevered until he finally got the job he deserved. I was told I'd never get a job, but I was determined. I succeeded by creating a position for myself. 

We know about responsibility. When I taught computer classes I was responsible for getting a substitute to teach my classes if I was ill. If I did not get a sub, I  had to find time to make up the classes. I rarely missed class. I was only late once in sixteen years. I knew that my students deserved to get what they paid for. I did everything I could to make sure they had a positive experience in my class. 

We know about empathy. People with disabilities have the ability to empathize with the difficulties others face. We face challenges every day. While everyone's challenges are different, if we can put ourselves in another person's shoes and think about how we would feel, in their situation, then we can understand. I think this an important skill for caregivers to develop. No one knows what it is like to be forgotten in the bathroom without your call light until it happens to you. 

We know patience. Most of the time those helping us will do so when it is convenient for them, not us.

We know about gratitude. When you have a disability and need assistance, you are grateful for things most people take for granted. I am grateful when someone answers my call light in a short amount of time. I am grateful that there is someone to get me out of bed, help me to the bathroom and help me dress for the day. I take nothing for granted. I say thank you all the time.

The word disability has the word ability in it. Don't get stuck only seeing a person's disability. Don't focus on what they can't do. See them as a person. Focus on what they can do. 

There are days when I am so tired.  Tired of making sure that my needs are met.  Tired of waiting. I have no choice but to keep going. People with disabilities are strong because of their disabilities. We face challenges. We persevere.  

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FREEDOM

My powerchair is almost seventeen years old. That's old for a power chair. I have resisted getting a new one because my chair has never given any problems. I have had parts and batteries replaced through the years, but, that's it. I know residents who have chairs much newer than mine. They are always having trouble with them. I did inquire about getting a new chair years ago. I wanted a chair as close to the one I am using as I could get. Because of a dispute between the  FDA and the manufacturer, they were not allowed to sell the chair until the dispute was settled. Nu Motion has tried to sell me other chairs. I am frustrated. I keep replacing parts.

Lately, one of the wheels on my chair has been falling off. Sounds funny, but it can be pretty scary when I am going down the hall or turning a corner. The maintenance staff here have replaced the bolt and it seems to be holding up well, but I finally decided it was time for a new chair.

I spoke with my social worker. I learned that because  I am in a facility now, Medicare will not pay for a new chair or wheelchair repairs. It is a federal law. Medicare doesn't think anyone needs a motorized chair if they are in a facility because staff can push them around. Medicaid will pay for a chair, but Medicare will not. It makes no sense at all.

The legislators who passed this law obliviously have no idea what it is like to have to wait for someone to push you from place to place. I do. Shortly after arriving here, one Friday evening, my chair stopped dead.  There was nothing that could be done until Monday, so the entire weekend, I had to wait for staff to push me around. They would forget me and I couldn't get to my call light easily. It was very frustrating. Thankfully, the problem was a minor one and I was mobile again on Monday. 

My chair is my only means of getting around independently I can leave the facility when I choose to and take public transportation to my destination. If I only used a manual chair, someone would have to go with me. 

I was told when I entered this facility that I could still have a life. I can, but without my motorized chair, the quality of life will be significantly limited.

I guess Medicare believes that if you are in a facility you are sick. I am physically disabled, not sick. I deserve to have a good life. i deserve to be able to keep rollin'.