Creating a Culture of Healing and Empathy

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World, Do you have a place for us?

World, Do you have a place for us?

Will there ever be somewhere safe for us?

A couple days ago there was a missile threat in Hawaii, our current home. I posted on FB how I wasn’t scared when I received the alert and jokingly questioned what that said about me. The truth is that there was a part of me that felt immense relief. “Well, if we die I won’t have to worry about how to take care of Nami anymore,” I thought. “Getting hit by a missile would be an easy way to die, a solution that would protect us from criticism and a way to finally be safe.”

I usually hide my real thoughts and feelings because it’s not safe to let people know the REAL truths about our lives and how it impacts me. I have to keep these thoughts really secret . . . buried deep so that they won’t accidentally emerge. I learned this through experiences I had a couple years ago.

I’m not sure exactly when or how, but my already unhealthy body took a turn for the worse. I could no longer eat. I dropped a lot of weight, and fast. I tried my hardest to down at least a yogurt and some crackers each day and drink a tablespoon of liquid every hour. I’ve always been a stress eater, so I was confused about why I couldn’t eat. I had bald spots all over my head from losing about half my hair. My arms and legs were always stinging as if they were asleep, my whole body ached and cramped, and I had trouble breathing. I could neither rest nor stay awake. All my thoughts were jumbled and my eyesight and hearing were declining.

At some point I lost the ability to walk. Still, I’d force myself out of bed every other day to go to work. I took as much migraine medicine as is allowed and barely made it through 6 ½ hours of teaching before I’d drive home, go in the house, and collapse on my floor. I was bedridden until the next time I had to go to work (2-3 days later depending on if it was a weekend). This went on for months as my health continued to deteriorate. I was urged by family members and coworkers to take a leave of absence from work. I refused, thinking, “I just have to finish this school year. It will be too hard to prepare everything for a sub”. Eventually my body gave up entirely. I was forced to quit working for the rest of the year and eventually ended up in the ER (a story for another time). I experienced many traumatic events during this time. It was then that I learned it was not safe for me to ask for help, that I was to NEVER let anyone know what I was REALLY feeling.

We never had consistent help with Nami until he was 7 ½ years old. It was a few months after my trip to the ER that Nami’s medicaid finally determined it was necessary to have someone come once a day to bathe him. When I tried to increase the assistance from one to two hours a day, the care center refused saying they were only there to bathe Nami and they couldn’t stay there longer because he didn’t take that long to bathe. They explained that if he were in a wheelchair they could give us more help. In that moment I envied people with children in a wheelchair.

The trouble with living with tuberous sclerosis is that almost no one we encounter knows what it is so they have no basis by which to start understanding us. The disease is variable so not everyone with TS has the same experience. Like the saying goes with autism, “to know one person with TS is to know one person with TS”. But organizations aren’t set up to know individuals. They are set up to function like machines, and our family doesn’t ever fit into the machine. It’s not that we never have people who try to help us. Many angels have crossed our paths and aided us in miraculous ways. I am forever grateful to each and everyone of them. Maybe I’m just a really weak person, but it’s still not enough. I’m afraid the help that people are willing to give us will never be enough for us to survive. I live with this reality 24 hours a day, 7 days a week. I fear never getting relieved from “barely surviving/on the verge of drowning” mode. I have had to fight every institution for them to aid us until my body, at one point, refused to fight anymore. Still, there was no rescue.

I have fought relentlessly to get us in a position where I thought we might survive better, which included relocating, at least temporarily, to a temperate climate. There have been many obstacles as we’ve tried to get settled, but the institutions here are much more willing to help than where we used to live. At this point, we are still not in a position where we can survive here, but we’ve had many positive experiences.

After climbing through a bunch of bureaucratic mountains for almost 2 ½ months, I FINALLY got Nami into school. I have not had a single break from him during this time. Since the school district wouldn’t let him attend, he got used to being at home with me. His “stereotypical” autistic traits continue to rule our lives and he cannot handle change. I was so scared to start school because I knew he’d fight having a new schedule. Today was Nami’s third day back at school and he was determined not to go. When he gets upset he goes into a rage, throws himself to the ground and refuses to move. He hits me, pulls my hair, and throws everything he can get his hands on. This morning was no different.

Nami’s wonderful special ed teacher gave us a toy for him to take home and bring back in order to try and associate school with something positive. Nami and I have walked Kope to school for the last couple months, and Nami tantrums about half the time, so I just hold him under his armpits and carry him as he kicks and screams. We don’t drive for a couple reasons, one being that taking him in the car when he’s tantruming is even harder than walking. I have to lift him up as he resists with all his might, stay standing while he kicks us both back from the car, get him in his seat, and buckle him in. He screams, kicks and hits the car, hurting himself. Once in, he attacks Kope and throws anything he can get his hands on at our heads. It’s not safe to drive with him during these times because I can’t position him far enough away from me as I’m driving. This morning I got his toy out to see if it would help calm him down. It only made things worse. I started carrying Nami and he forced his way out of my arms and threw himself on the ground. I grabbed his arms to pull him back up when he grabbed the toy from under my arm and threw it across the parking lot. It broke and splattered liquid, sparkles and gems everywhere. I started to try to clean up the mess before I finally gave up, fearing Nami would hurt himself on the asphalt.

While this was happening I had a woman approach me to inform me that it was really hard for all the neighbors to live by my son and asked if I could please figure out another way to get him to school so they wouldn’t have to listen to him. I stood their helplessly as Nami continued to scream and hit me. I was so shocked I didn’t know what to say. After telling her that there aren’t any other options and that he’s disabled, she continued to explain that she understands that he’s disabled but the neighbors are just having a really hard time with it. I finally uttered, “No one has a harder time with it than me” before walking away.

Kope always walks a little in front of us because it’s embarrassing to him to be by Nami when he’s screaming. It took every ounce of my being to hold the tears as he asked, “What did she want?” I couldn’t respond, “They don’t want us here,” to a little 6 year old boy, so I told him she was just asking me something. After trying a couple more times to figure out what happened he finally gave up and walked his 15 or so feet in front of us until we got to the school. Outside the gate Kope came up to me, gave me a hug and asked for a kiss before he walked into the courtyard, trying to pretend that the screaming, tantruming child with me was not his brother as everyone stared and pointed at us. I got to Nami’s classroom and lost it.

This is our reality. We are refused help (at least initially) just about everywhere we turn and then criticized by many for having to live our lives the only way we can. When we do get help, it’s not enough or not in the right way. I don’t know how to tell the people who are trying to help that it’s still not enough and that I’m afraid it’s never going to be enough. It makes it seem like I’m ungrateful when the truth is I’m grateful for even the smallest acts of kindness. I’m lonely because I feel like no one can relate to our lives, and without that understanding no one can get us the help we need. I have trouble making new friends because our lives are unrelatable. I start to resent people and I hate the way that makes me feel about myself. We need saving but no one can save us. So I sit here day after day, by myself, trying, and failing, to find another avenue to survive. There is rejection under each stone I turn. No institution is set up to help Nami, I have been unable to secure the necessary help for myself, and we feel unwanted everywhere we go. 

This is where I’m left. Today’s episode compelled me to share some of my deepest darkest secrets . . . the ones that I can’t explain without being mislabled as suicidal. I do this to bring awareness to the challenges of dealing with the scars of sexual abuse and parenting a child with special needs, and to show others who live in similar situations that they are not alone. I want to survive and to belong, but have been unable to figure out how. So that’s why, when I hear that I’m going to be attacked by a missile, my mind automatically feels relief. My conscious mind then takes over and I tell myself to continue to fight.