I AM STRONG

I am all of these.  I have been called all of these.  Women who speak their minds are often ignored. If a woman has a disability and speaks her mind the mouths of others are agape in shock. The attitude of others is, "Who does she think she is?" "She should be grateful." (I am)  "She should be appreciative." (I am) I will not keep silent.  These labels are not negative. These labels fill me with pride. I am strong.

Thank you, Jane Goodall, for letting me know that I am not alone! 

 

AGING WITH (OR WITHOUT) A DISABILITY

A better title would have been Second Childhood

 Said the little boy, "Sometimes I drop my spoon."

Said the old man, "I do that too."

The little boy whispered, "I wet my pants."

"I do that too," laughed the little old man.

Said the little boy, "I often cry."

The old man nodded, "So do I."

But worst of all," said the boy, "it seems

Grown-ups don't pay attention to me."

And he felt the warmth of a wrinkled old hand.

I know what you mean," said the little old man.

~ Shel Silverstein  

MY PERCEPTION (REALITY)

 Have I ever written anything that meant anything to anyone other than myself?  No one here really cares what I have to say. Maybe you don't either. Maybe you read my posts for fun.  Maybe you laugh at them secretly thinking how foolish I am.

I hope you do not think the following is foolish.

Everyone perceives their reality differently. According to Dr. Phil, there is no reality. Just an individual's perception of what is going on around them. 

The way I perceive reality is that I am the s**t disturber here. I cause all the problems by advocating for myself. I send emails. I tell what goes on. I bring up old issues such as the staff not looking up from their phones when I speak. I am supposed to converse with only my housemates. That's the rule. I have tried, but it is hard. The staff here is only required to assist with my physical needs. That's it I also have trouble moving on from conversations when I am upset. I repeat myself.

I am blamed for almost all the discord that occurs in this house. I do not feel that's fair, but another support coordinator is leaving here. This was her second stint here. This SC asked that I go through behavior therapy with the staff. They said if I did they would stay. We are waiting for the state to approve it. The SC is leaving anyway. 

My reality is very scary and uncertain. I wake up every morning feeling sick to my stomach not knowing what the day will bring. Human beings were not meant to live in isolation. Not talking to the people around them. This rule is stupid. And rude. I can't live that way. I find it difficult to respect most of the staff. I try. How can they not answer me or speak to me? I will never understand.

I have no idea what tomorrow will bring. I am not allowed to ask who is working. I was told I will see when they get here.

I have to make plans to go out around my housemate's appointments. Last month a friend invited me to visit her at her job. I asked twice if i could go. I was told yes both times. The night before my outing i was told my housemate had an appointment. The SC did not know if  I could go or not. It  depended on the length of my housemate's appointment. Due to the uncertainty, I canceled.

The administration wants me to assist in rebuilding this organization's staff. They asked if I would like to participate in the hiring process. They want to hire better, more professional staff. We'll see

I am asked all the time why I am still here Truthfully, I wish I were on hospice. I saw firsthand how kind those people were. I Thank God I am not sick.  I sure could use some of their kindness right about now.

I am visiting another LTC in two weeks. I will put my name on the waitlist. I should not have moved here. I know I need help. I will put in the work for as long as I live here.  

In four years no one here has ever really supported me. They blamed me but not supported me.

My reality? The fear of what's to come.