What I Want You to Know about Me

There is something that is weighing very heavy on my shoulders and my heart. People do not realize how sick I am because I always am upbeat (most the time) and positive. BUT, I will see someone after I have been walking or talking for 3 or so minutes and they will greet me. I am physically unable to greet them back. I do not have the oxygen in my body to make that response. I will then be greeted again, my name used and the words enunciated as though they are talking to a fool. With my limited amount of energy I try to use eye contact, face movement and hand movement explaining that I am unable to talk yet and could they wait a while. No one gets it. They either turn away in disgust or turn away assuming that I think I am too good to be lowering myself to greet them (and that is true because I have asked later on when I can speak). My frustration levels hit an all-time high with me wanting to die because I cannot breathe enough air to scream. And when I have been talking to someone when I have the energy and we start laughing, I lose all energy and cannot continue the conversation and often just fall asleep through sheer exhaustion – sometimes just blacking out and not knowing when the person even left.

I cannot look after my own personal hygiene, I cannot walk to the toilet unaided, I cannot do a thousand things that you take for granted. I cannot go into shops, I can’t buy what I need or even want to use for my crafts. Even writing – I write for 30 minutes and then stop and have to wait until the pain from my arms becomes bearable and then I can start typing again.

And still, people want me to take up their batons and run with them for the things they are passionate about. Not once does someone thing – “Gee, I wonder if Di would like a cup of tea?” or “How does she manage to wash her hair?”.

I still have a fucking good brain and I can still do a lot of things and say a lot of things in writing that others are afraid to say – but I need help. I need help to hire someone to bed bath me and make me tea and change my linen and to pass me the things I am going to work on that day in bed.

I want to die with my boots on but without YOUR help, this is not going to happen. Why do people say they will help and they don’t? Why do people no longer use their word as their honour? Why does no one care now at this stage when I am still doing what I can with what I have but could do so much more with a little help?

Ever wondered what it is like not to be bathed or showered for a week? Or to lie in a wet bed for a day?

Ever wonder what it is like not to have a single doctor in the country who has ever heard of your disease and that there is a cure but I would have to go to the USA to Maryland for 11 months … where would the money come from? The doctor is prepared to treat me for nothing. But it is too late now because I cannot even get to the hospital without an ambulance, never mind thinking of going for a cure in another far off land.

I have so many wonderful ideas to change our world but alone, I can do nothing. I really want to get these innocent prisoners out of jail – I really want a place where battered women can flee to – I really want to have a plan in place for when our rivers run with blood. I really want to be able to provide food to the starving and that is already started in a small way and we eat from our garden. But I can teach – I can show people how to improve their lives – I can mentor – I am a psychologist – I know the constitutional law – I can write, edit and proofread…And then publish for other people, not only for myself. I can motivate, encourage and connect dots for people. All my flaws and scars are what makes me a uniquely creative and beautiful human being. I am afraid of nothing except suffering to breathe and to die that way.

I am a great supporter of paying it forward with random acts of kindness – and I am richly rewarded by our Maker who gives me the strength to continue to do His work. But now He needs YOU, His angels to help this one.