Hi. I am Tommy

I am too nice to say these things, but my dad would if he were me.

I don’t know how much longer I will be here. If I could fall asleep and never wake up again I would, but I have lost even that basic human dignity to end my own life should I choose. I don’t need any money. I think I’ll be dead before I get to spend any of it. I just want company for the agonising moments I have left on this earth. I don’t want you to pray for me. People tried that and I got worse. I don’t want you to have parties to raise money for me. While you are drinking beer and watching fireworks in my honour, I am on my own in ICU, in pain, with a stranger annoying me taking my blood pressure. If you want to help me come and hold my hand, rub my hair, tell me a funny story, or sing to me.

I feel so isolated. People come into my room and because I can’t talk, open my eyes, or even make facial expressions they think I am not able to hear or think. They get bored of me because I am not able to give any response to show I am listening and then talk about me like I’m not there or talk amongst themselves really loudly. This gives me the shits as loud noise makes the pain worse. Sometimes I cry out in pain and my visitors try and talk over me like I am a distraction.

I feel so afraid. I don’t know what is happening to my body. I can’t imagine it ever recovering or getting back to normal. I feel so alone. People tell me it’s ok, but I think they just don’t like my moans, I think they want to remove their own pain not mine. I want people to feel the way I feel. I feel so misunderstood. I want people to cry with me, allow me to feel how sad this is, respect my right to be sad, don’t tell me everything is going to be alright. They have been telling me that for months and I just get worse.

I know I am hard to look at. People I love come and visit me and freak out. Some push through it and stay, they hold my hand, massage my feet and just keep me company. Some come back and try again. Some don’t. I try to understand. I know it’s hard for people. I feel I am turning into something hideous. I want human touch. I need human touch. It’s all I have left. I can’t see because the muscles in my eyes no longer work enough to focus. I can’t eat because I can’t swallow. I can’t communicate even by my facial expressions. I miss being able to smile so much. When I could smile at least smile people would respond to me. Now I feel like a ghost.

Sometimes my own dad can’t even handle me. He spends the most time with me, but gets overwhelmed regularly. He leaves me with assistant nurses and I cry and hold his hand tight because I don’t want him to go. I don’t know these strangers and I’m scared what they might do to me. I can’t protect myself or even tell anyone if something bad happens. But I understand my dad needs to sleep and look after my sisters and his business. I love my sisters and look forward to seeing them. They visit me regularly. I like the way my mum kisses my head. I like the way my big sister holds my hand while she works on her laptop. I even like the way she’s still bossy with me, she’ll make a good nurse.

I loved how my mum’s friend set up a go-fund-me and I could see who gave me money. Thanks everyone for your support. But now I don’t care about money. I don’t think I will ever be able to spend it. I just want you to hold my hand.

.