I heard a wonderful story today on NPR's "This American Life" it was after the story of the folks in Mexico and it was about a woman named Juliette who runs the coffee house in SF, CA called Trouble Coffee and Coconuts. It tells her story of having the same form of mental illness/bipolar as my son and how she has learned to cope and how she has learned to use her community around her to keep her in her head and on track. She always wears the same clothes so that if she gets out of her head and is wandering someone will recognize her and help her. She always takes the same route and talks to the same people every day so that if she is late or having an "episode" they will help her. She has learned to ask for help and tell people she can't think straight and needs help getting to work or home. She swims every day at China Beach so that the cold water will snap her head straight and help her focus. She struggled for so many years not understanding her mental illness at first thinking someone had slipped her acid or some sort of drug. She has lived several places, even in a tree. She blamed herself and thought for years she was undeserving of goodness. Somehow, her life journey created a collection of experience that she could turn in to her own business. She started this coffee house because she worked in a coffee house and new the business. She sells cinnamon toast because her Mom used to make cinnamon toast and it helps her feels safe. She sells coconuts because they are the one food she can eat that doesn't mess with her head-for some reason she can't stand the sound of chewing. She sells grapefruit nice because eating so many coconuts to sustain her she needs vitamin c. That is all her business sells and there is usually a line to get in the door. Through her struggles…and there seem to have been so many, she found success, a place to be and live in the world, a community to help her.
I look at my son and wonder if he will be so lucky. Is it luck? I'm not sure.He is doing so much better with his new meds. He has been relatively stable with less dramatic ups and downs but still ups and downs here and there. I am obediently following the psych docs recommendations and trying to keep him happy…low to no pressure and to her absolute credit it seems to be working. He is mentally healthier. Note to those who struggle with mental illness of any kind but especially those on "Tegratol" novocaine reacts with the meds very poorly and Dayquil. WHEW….bad deal. Don't do it. Lex has two more cavities to fill and I am just not able to handle it right now-need to wait until a trimester break so that I can manage the several days of crazy that follow novocaine at the dentist. That has not only added to our ups and downs but also given us that reality check that, even though he is relatively stable, the mental illness is right there behind those meds waiting to crack through at any given moment for any excuse.
I guess my point in writing this blog today is because this woman gave me a twisted sense of hope and sadness all at the same time. Yay, she found her place. Yay she is successful. She still struggles so intensely with her mental illness. She said just the day before doing her story she couldn't even go into her coffee house because her head was int he wrong place and noise was too painful. I think to myself, man…she doesn't even have autism thrown in to the mix. Imagine how hard it must be for my kid some days. I can't imagine living every day not knowing if your own thoughts are betraying you, if your brain is twisting or what you are experiencing is real. I can't imagine trying to fight through that distortion of reality, senses and thought all the time. So the hope is that, even though this woman who struggles with one of the diagnosis that my son struggles with has found her place in the world, learned how to reach out and get help she still suffers and fights for sanity every day. Is it luck? I don't know what it is, bad luck, good luck, just it is and it is how it is. She sounded proud of herself and happy with her life as it is now. I guess that is what i hope for when I look at my son's future. I hope, even though he has to fight through complete distortion and static in his brain all the time that he will find a place where he is proud of himself and happy with his life. May he be so lucky.
