by Miranda Smith
(Phoenix, AZ, USA)
Hi, My name is Miranda and i am 27 years old living with SPD. I have been my whole life. My mother said I used to make faces at my family at the dinner table in my high chair(because they were noisy eaters). This problem has PLAGUED me for all these years. When I finally found a name for my weird problem in my 20's, it was already too late for me to see an occupational therapist on my parents health insurance. So I paid for one session with an occupational therapist that worked with children with SPD, whatever. It was so expensive and then I moved with my family from Chicago to Phoenix, AZ where I had to get on state insurance. I went to them about getting some kind of help with paying for the therapy and got nothing! They said that it was not considered a disability in their eyes. To me it is a disability and extremely debilitating. SPD has ruined my relationships with people, caused me to not be able to stay in school for a long period of time (although I did finally finish high school at a night school and tried college for a quarter of a semester). Now I am married, finally (my husband, who was my fiance at the time left me because he could not handle my problems), and I have two year old twin girls. My husband is a disabled veteran who got injured in Iraq so he does not work currently and he has PTSD which does not mesh well with me as he has some of the same symptoms.
My biggest problem is noises; sniffling, coughing, clearing of the throat sound, people chewing their food or gum loud, clicking of the keys on a keyboard, the turning of pages in anything with pages, distant t.v. sounds- the list goes on and on. Then its my sense of touch and sight. I just started the sight problem where things moving in my peripheral areas irritates me terribly. I look for t too. My husband will be will be sitting next to me on the couch and he will start messing with his hair and I hate it! So, I started to put my hand
up like a blinder or I sit with the chair reclined, with a blanket draped over my legs. Then I put my leg up resting on top of my other leg to block his movements. Bright lights have always been hard for me. I always think people have their brights on and at night when they don't but I get those spots you get from camera flashes which makes it hard to see. I can not stand to be touched very much but I started some medicine that kinda numbs me so I am doing better with that. I was always telling my husband "No." Stop", or "Come on. Just leave me alone for now.". I make a lot of excuses why I do the things I do, such as wearing ear plugs 24/7 and when a noise bothers me I will mutter things under my breath or make facial expressions that I don't mean to do. My brow and around my mouth have wrinkles in them from grimacing ALL the time. I do it a lot. I was just doing it now although I did not notice. I am always making stupid, or ugly faces while not knowing. Sorry that this is so long but I need you to try to understand my situation.I went through drug addiction to kill the pain and the scars from scratching myself and digging my fingernails in my sides when I couldn't take it anymore.I want to finish school but I can't because I have a "problem".
I am dying inside slowly and I can't take it anymore. No, I am not going to commit suicide. I don't want to die. In fact I am scared to death of death. I just know that I have so much more to offer my kids and husband but I am always so tense and/or irritated that I can't even give them the attention they deserve.
I got lucky and was invited to speak at the Sensation-to-Emotion Conference that was in NYC last year. You can see a few clips of my speech in the PSA done. Here is the link for it: https://www.youtube.com/watch?v=kyjgPMjCjBM
Please just keep spreading the awareness and lets focus on the children who have the most hope.