Subject matter: death of a little boy.

The left shoulder going all the way to the toe on my left side spasmed for hours. The pain was so intense I honestly thought I wasn’t going to make it through. Four friends assisted me through it. It’s a strange feeling to think to yourself, I’m drying, but the pain was so intense I thought I wasn’t going to make it…….then I did. I slept for a while then got up Sunday afternoon to paint away some anxiety.

I was punching the brush on the canvas. I realized just how hard I was hitting the canvas, then I just stopped and cried. I was crying out of sheer exhaustion.

I pushed the small canvas away and pulled out a clean one and began painting. I was thinking about this 11 year old boy whose body shut down. I was painting a sympathy card for his mother and father. I kept thinking, why him and not me? I thought, he was just 11 years old. His family loved him. He had family who wanted him and yet I am the one who survived the night. I thought to myself, what good am I to anyone? Then it hit me, I’m painting a sympathy card for a family who lost their son. I’m part of the group that’s encouraging and supporting the family. I have a life time goal to be of encouragement to those who need it. I’m increasing my education to be able to offer hope, that’s what I’m doing…. and it’s what I want to do. I can encourage in English, French and American Sign Language. That’s what I’m doing now that I’ve survived the night. 

The little kid knew pain very well. The other supporters for his family also have Lupus.  We don’t even discuss medical options, we’re support only.

Dissociation helps me hear a mother weep without falling apart. I can respond appropriately because I block it, not even purposely, it just happens.

I compared the child’s life to my own the same as I did the last person who died of Lupus. She was a gem, a total gem. I thought, they have family, they have a reason to be here…..blah, blah, blah, I’m nothing, no one is going to miss me or skip a beat if I’m not here. Why them and not me? …on and on and on….. Will my sense of worth improve anytime soon? Cause I think, shoot, I don’t matter, my death won’t be nearly as devastating as the loss of a child or the loss of the woman about 6 months ago. They were loved, but here I am, a nobody, taking up space…. and it doesn’t make sense to me.

Why don’t I matter? Because I don’t. I can feel it.

Every time someone dies I’m going to question my worth. It’ll take a moment to get myself together gain and realize that sicknesses happen to everyone, young and old. Accidents happen, stuff happens that isn’t part of some greater plan, it just falls together wrong, period! And if I’m still alive then I’ll do what I can to support others with chronic pain and other serious illnesses.

I’m pleased to hear that I’m good in my supportive role. That’s helpful to know. Even if a person can’t come here we have video feed and telephone. I’ll do what I can as long as I can because I want to. I know I’m afraid of my body. I’m afraid of the next attack of pain. My purple pack is here and ready to use.

I’m allowed to live without justifying it.

Dr. D is on vacation next week which means I am, too. My phone will be on do not disturb until well in the afternoon. I plan to sleep as late as possible. I’m sipping Chamomile Bloom tea by Teavana. Gracious! This is one of those teas I’m being selfish with, not a single person is getting a leaf of this stuff. It calms me, something I really need right now. I’m not a great fan of fruity teas but I’m all over florals.

It’s time to go to sleep with Mary Jane at my head and my body wrapped in a nice warm, lavender scented blanket.


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