If Grandpa wasn’t standing there. If he had seen. If my surroundings had not suddenly collapsed. Or if we were not surrounded by family she was meeting for the first time. I would have given my step-grandmother, the retired nurse, a piece of my mind.
She just wanted to see me smile, she didn’t know any better. Yeah, right, the nurse had no idea.
I experience allodynia all the time. It gives me extra little bursts of pain when I am touched. Usually it only presents on my head and face. She knows this, I told her the first time she patted my head like a good little child and the time she laid hands on me to pray. I wish she didn’t have the psychological need to touch people.
The family re-union began early Sunday morning with a church and memorial service (we remember all who have died since we gathered last). It was a nice service, Mom gave a good sermon, distant cousin did the memorial, and we sang/prayed. So, typical noise and light trigger fest that I was expecting. In-between the service and family meal, step-grandmother slinks over and bends over the pew in front of me. She grabbed my face and started patting it and squishes it together a little. Then she kept patting my cheek as she patted the bottom of my chin. I think my brain began playing a bit of impromptu soccer.
I must be really good or she sees what she wants to. Somewhere a thought boomed, smile idiot or every single person here is going to know you feel like crap and why because she will announce it to the 100+ people here. It was just me there, my keeper of the day was in the bathroom. To my luck she says I love it when you smile..and then asked for my Mom. She did it to make me SMILE. I had to hurry and get myself back into check before I started to cry or the before extended family noticed.
I learned pained face can look like a smile. I can’t figure out why she would have stopped otherwise.
Smiling is something I practice. When I look into the mirror I try while looking at an old photo and get frustrated with myself. I watch comedies, read the funnies, and keep up with things I am suppose to laugh at. I practice. Smiling is a skill that healthy people take for granted, I did. I was that annoying person who smiled for no reason. I was often told I smiled too much or was too happy. I giggled and laughed easily. But now it’s hard. I can feel the vibrations of laughter in my skull. Giggling is tiring. Smiling is hard when your physical pain is so consuming. I was in acting before I got sick. So I can smile while engaged with someone, it takes effort but the smile can look natural. When engaged with someone I can even get distracted enough to make small smiles and soft laughter naturally. I have learned to laugh silently. My niece gets a kick out of it. It all takes practice and concentration. It might sound silly, but part of me is afraid that I will forget how to express happiness so I practice.
It is almost an insult to be told to smile. It is unkind to make someone feel like their best efforts to function in an hostile environment is not good enough. Especially by someone who knows why the environment is hostile. It is unfair to have to hold all the things you want to tell the jerk in because of what others think are okay excuses, her age, family status, grandpa, her feelings, she probably doesn’t remember, trying to show they care.
My real grandma taught me that it is more important that I go to these things then to put on a happy face or even interact with anyone. It is about effort and showing that I care. She said that I should pick the most comfortable spot and if anyone wanted to see me they could come to me. She would say that anyone who did not appreciate the effort of showing up wasn’t worth my time. Now, they didn’t have to come see me to appreciate my effort, they just had to respect the fact that I am a disabled person who needs control over my environment and can become overwhelmed by crowds. I am making a statement to you by being here. I am giving up all my spoons to be here. It might might end up taking everything I can muster today, but I wanted to be here. Grandma also said its okay not to go, don’t try to give out spoons you don’t have. It is like stealing, only jail is the hospital. When you don’t go it is their responsibility to show caring: we missed you, take care, there will be another time, do you need.
I do not understand step-grandmother. All she had to do to see me smile was to engage me in conversation. She does something uncaring every time I see her. I am told it’s because she cares. She violated the spoons. Grandma took years to teach my extended family a way to be around me without being awkward or fearful. Step-grandmother is announcing that I don’t meet her requirements, I do not cope with my illness well enough, I cannot function well enough to be presented in society. The time before she actually said that I am still sick because my mom, gramma, and deceased grandma did not care for me well enough. I find it ironic that in my immediate family I’m the nicest and most tolerant, so before we met her I was chosen to create that bridge of acceptance into the family for her.
I have not been patted on the cheek since I was a child. Grandma did it saying I was a cute rascal. When being treated like a five-year-old I really want to act like one. Five-year-olds are allowed to cry, be crabby, and whine when it hurts. They can tell people off and be the worse brat imaginable because of a boo-boo. Makes me want to be 5.