I struggled with low blood pressure my whole life. It wouldn’t have been so bad, but I also struggled with tachycardia (too rapid heart rate) my whole life as well. The two issues combined were a recipe for hypovolemic shock. When I went into hypovolemic shock, we called it bottoming out. It was one of the reasons I was admitted to the hospital so frequently.
“Any time you know you’re bottoming out, that’s an automatic 911 call”. Dr Oster had told me.
I could always tell when I had low blood pressure and a high heart rate and was going into shock. My skin would turn bluish-gray and I would alternate between having chills and hot flashes. The world would start trying to pin me down. Exhaustion would overwhelm me along with a pull towards the darkness of the unconscious.
No matter where I was when the low blood pressure hit, I would have to call for an ambulance. If I was at home it wasn’t the biggest deal in the world, but if I was in an embarrassing place it was awful. Pretty much anywhere in public fell under the category of an embarrassing place. The more people around, the more embarrassing it was. Sometimes I would need to call an ambulance from art class. Other times I would be at the mall or the park with friends.
Jonathan (my 5-year-old brother) was struggling in kindergarten.
“I think he might be on the autism spectrum,” I heard his teacher say to my mom when we went to his classroom to pick him up. The school kicked me out after I got dizzy in class too many times. When they sent me to the nurse’s office for it, my blood pressure would be so low that they would have to call my mom to bring me home and make an emergency doctor’s appointment with Dr. Monroe
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They decided that I couldn’t go back to school until I was eating three meals a day and had a doctor’s note clearing me to return.
That day the teacher pulled my mom aside, my mom sounded angry.
“He is not, autistic” my mom glared at Jonathan’s teacher.
“He needs testing done if he ever wants to graduate kindergarten. At the very least he has severe learning disabilities.” The teacher told my mom, as Jonathan stared intently at a skid mark on the linoleum floor.
It was another whole year before Jonathan got the testing done. He had to repeat kindergarten. But again, Jonathan wasn’t in immediate danger of dying, so my issues were the ones put front and center, and all my parent’s energy was thrown into playing food police on me.
Having Melody work for me, turned out to be the best thing in the whole world. Without Melody, i never would have even dreamed of going on a date with anyone. Because of my developmental and physical delay, I didn’t get a period or have adult hormones in my body. This meant that I didn’t feel the same attraction to boys or men that most other people my chronological age felt. But I would never grow to fully be an adult, and Melody wanted to make sure I experienced every wonderful part of life.
Sometimes when Melody came to work she had to bring her two kids, Max and Jared. They didn’t have to come with her every time, but when they did I didn’t mind. Max was eight and Jared was ten. Melody would just sit them in the beanbag chairs in my living room.
“Don’t touch anything except the beanbag chairs and your Nintendo Switches,” she would tell them.
Her thirteen-year-old daughter Serena would tag along to keep an eye on them.
“Max and Jared have a lot of mental health issues. They both have bipolar, ADHD, an attachment disorder, PTSD, and Oppositional Defiant Disorder….”
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