My irritation, anger, and frustration are close to the surface these days. I want to lash out at everyone. And I feel like I've taken crazy pills every time I visit the Chiari support boards. Everyone is hellbent on “have a positive attitude!” and “I'll pray for you!” Nobody acknowledges the grieving process that comes with having an enormous and tragic roadblock thrown into your life.
Having a positive attitude doesn't change anything. It doesn't make you work harder toward a cure, and it definitely doesn't make the pain stop. There is no switch labeled “despondent/ecstatic” and no way to flip it yourself if there was. Don't get me started on “I'll pray for you” or the bible verses casually flung at people. A) you're assuming everyone is the same religion as you which is downright obnoxious, and B) you're saying, “YOUR prayers are ineffective, but god listens to ME, so I will pray that your situation is resolved in the manner I find most appropriate.” I used to just smile and say thank you when people forced their prayers on me. Now I don't respond at all.
I'm grieving. People say you never know but they also say get used to it because this is now your life. If I thought this pain would never end, and I would never have children, and I would never get back to working in my chosen career, and I would always be a burden on my husband and friends... I would kill myself immediately. That's the truth of it.
Did you know I had picked out names for my future kids? Caleb and Lucas, Hannah and Gracie. Their middle names would have an H in them, because my husband and I both have middle names with H's where they don't belong: Erich and Nichole. Did you know I had fliers printed for my childbirth classes, and two locations who had offered me teaching space? Did you know I was asked by an IBCLC to help her design teaching material for breastfeeding support? Did you know I have boxes and boxes of pamphlets, guides, posters, charts, and props for my classes? Shelves upon shelves of reading material for moms? I look at my office now and think I should just sell it, sell it all, because even if a neurosurgeon would take me on as a patient and do the decompression surgery, there's no guarantee my vision will return to normal, my hearing loss will come back, the nerve damage will reverse itself, my brain fog will miraculously lift...
I'm depressed and scared and sick to death of sugar coating shit. I'm tired of clawing my way up from rock bottom only to find myself here again and again. It's made worse by the fact that I was so close, so very close to making my dreams come true. I was a hairsbreadth away and I felt triumphant. I felt I had proved everyone wrong: the girl who barely graduated high school, the homeless woman, the drug addict, the abused, shunned, shy woman with the destroyed spirit... That woman had risen up and was making a contribution to society, supporting other women with knowledge and compassion. Now it's gone and I'm quickly losing hope it will ever come back. I refuse to play happy to make other people feel better. I am allowed to work through my grief any way I see fit. I'm not responsible for other people's feelings or reactions. I will be honest with myself and everyone else. This fucking sucks and “thinking positive” is a drop in the endless ocean of my grief.