Anna

Death is hard for me especially when it’s a young person.. As a person with a disability it’s pretty common.  I’ve lost a lot of friends. My friend Anna Whitaker choked to death.  As a matter of fact, the same attendant who refused to take me to the hospital is the one who was feeding her when she died.

I remember that with her communication device she used row-column scanning and it took forever just to say hi. She didn’t know how to read so she used Bliss symbols. That doesn’t mean she was not intelligent.  I can’t imagine how she expressed her wants, needs, or anything. She couldn’t say if she was happy sad, or in pain. Her parents got divorced and it was difficult for them to deal with her.  Shoot! It was so difficult for her to deal with anything at all. We had the same occupational therapist. A lot of times I saw Anna cry in frustration. It hurts me to know that there are people like her who are struggling to communicate.

When I found out about her death.I was so upset that I could not eat and I still have a hard time eating. I was throwing up and crying at her memorial service.  Her mom bothered me. She had a lot of problems. She was saying how Anna was innocent.

I’m so blessed to have a loving family who supports me.  I feel lucky to have relationships with people.  I can have conversations with my awesome nephew. Anna had no real life, but I sort of identify with her. People told her that she she couldn’t communicate and people have said the same about me.   How do you think I feel?

At times I feel so scared about eating that I spit out all my food or I don’t eat.  Anna’s death is still with me.

S*T*A*P*H

WARNING: This story may get gross and may contain graphic images!

Remember “My Insect Hell”? A few months later , I felt something extremely painful under my right arm. I tried to tell my attendant but she acted like I was making the whole thing up. I  threw a tantrum and was looking at my right arm and she still pretended that I wasn’t there. The next morning a different attendant noticed a big lump and called my mom. She came down and checked it out and called my doctor. She suggested putting warm compresses on it.  The next day it was bigger and more painful so my mom  called the doctor and made an appointment for me.  My doctor wasn’t there so her assistant saw me.  She told me that I had a staph infection and that I had it when I came to the hospital in July with what people thought was a spider bite. WTF? Now I had to get this thing lanced  – Oh, God!  My doctor referred me to surgery that same day. I was in so much pain, as you can see.  That was nothing compared to what it felt like when the surgeon stuck the needle in there to kill the pain before he sliced me.  Picture that! I could have fainted from the sight. I couldn’t believe what was coming out of there.  I could have puked.  Lucky for him I didn’t.

The assistant doctor knew the ECO (my communication device) and she was telling me about her friend who uses the same device. You don’t hear about that very often. That established my trust in her. She then told me to disinfect my whole house and to use only white towels and washcloths and Dial soap and not to share towels with anyone.

Since then, I’ve had to go on antibiotics a couple of times (not Septra!!) for staph flare-ups.  Living with this is pretty scary and creepy. I feel not quite right.