Life has been a complete dumpster fire for me for so long. I have been stuck in this mental purgatory that lasted so long. I didn’t understand what happened to Dianne. That took place in 1988. Then my brother Brian was diagnosed with having the RYR2 Gene Mutation (2014/2015) which (when activated) cause syncope (heart related/arrhythmia) or passing out. OR (heart related arrhythmia) cardiac arrest leading to death. Darrian, my youngest daughter had incidents of what we now recognize as syncope. Back then, it was just a simple “passing out” or loss of consciousness. Darrian was a pretty high strung kid. Operating on the need to fit in goofiness, depression, and anxiety. Darrian later passed from the same condition that impacted many of my family members. My cardiac arrest was in 2011 – which led to the implantation of an internal cardiac defibrillator.

When Dianne died, it had a “Regan style” trickle-down effect. Dianne died, Duane was stationed overseas, took custody of Stephanie (my sister’s only child). We saw her very infrequent over those years. I couldn’t wrap my head around the idea that the doctors could not figure out what killed my sister. Who killed my sister. Why? Why us? Why me? Why her? And then that terrifying realization a few years later that ….. nature was not done with us. With my family. And I had more to learn OR unlearn, as it were.

My dad was not an emotional guy. Some have speculated that maybe my dad was on the Autism Spectrum. And I think, autism has largely been a confusing thing to me since…. it really got the most recognition in the 1990’s. My father was born in the 1940’s. His social skills surrounded my mom, our family in the church, and my siblings and their families. Life was tight. My brother and sister (oldest) were in college or just getting out of college when my mom went down. My sister was long dead. Dianne (1988), my mom went down in 1991. My first year in high school.

High school is such a period of change. You largely (generally) are surrounded by the same people you’ve always known. There is just a larger pot now. Being that I grew up in a tiny town in the Upper Peninsula of Michigan – we all went to the same schools. The same town had ONE elementary school, high school, and middle school. All different buildings. Chances are, we all rode the buses together. Once you’re in high school, there is this idea of “freedom”.

• You can drive by 16 years old
• Possible parties, sex, peer pressure changes (drugs and alcohol)
• New/existing cliques

I grew up in a church community surrounded by the rest of the secular community. Whether they were actually secular or not, I am not sure. One of my best friends growing up was LDS (Mormon), my primary best friend was definitely secular. I saw people from a variety of walks of life. Primarily of the white variety. Poor, wealthy, established, dysfunctional, religious, racist, drug using, sex abusing, etc. I saw people (on the regular) at church and not – snubbing people. And since I felt and still feel like I was Dianne pt 2, it seemed like that black cloud emerged over me as hormones started racing. And my mom was not available to be in my life for the rest of my life.

It’s hard to understand a situation where your mother is alive. Her thoughts, her movements, her actions, everything – stuck. She had to be going through her own personal hell if she could contemplate her situation. She couldn’t move on her own. She was a quadriplegic. She was rarely in a wheelchair. When she was, she had to have a velcro strap across her forehead to keep her head level with anyone there to visit or talk to her. For 19 years, I saw my mom as the one person you’d never want to have to see someone they love like. I would go to the nursing home every day that my dad went. Unless I was involved in something, I might not. I went because I loved my mom. And I didn’t want to disrespect my father. I can tell you, that each time I visited my mom – a part of me extra died inside.

As an adult, I am learning to do things that seem like they would be normal. Last night, I made a phone call to a person I have had intermittent contact with for years. She knew my children. Her daughter would play with my kids. They are now grown or have passed away themselves. I have always wondered about this person. What was her story. I knew there was one, but I was too mentally fucked up to be able to get out of my own head. And it wasn’t anyone’s fault but how trauma organized my brain. My fabulous, fabulous, fucked up brain. I talked to her for quite a while. I made sure to add in anytime I asked a question that seemed intrusive – You do not owe me any explanations. You can opt out of answering. It’s cool. She showed me the dignity that every person deserves. And it was a nice conversation. One that I would have again, given the opportunity. Just maybe different subject matter next time.

I posted on social media about my reach to this one particular person – and how unique of an experience it was for me. This person, I knew, had a story. And a story that likely she would want to tell. To someone who was curious. I felt very similarly to her. I felt like – when I told my story, I was either accepted silently OR I was disavowed as having any legitimate claim to my own life. And how it went on. And knowing that, in part, that we had any similarities of that sort – I wanted her to know that I see her. And that I’m listening. I do not want anyone to feel like they have disappeared under the terms of their mental illness. So many people are tucked away because of social programming in the world. We tell our kids and our kids kids that they need to behave in set situations like “this”. And straying from that line can have moral and legal consequences.

After I lost my mom to her long term medical complications, I became a lost soul. My mom had lost her daughter. She was lost. My dad, I feel like was always lost. He came home from work and we disappeared – largely. He didn’t speak to us much. And for that, I resented my dad. I asked my mom to leave him once. I’m glad it didn’t happen, but clarity has taken a long time to find a home in my head. I know my dad did everything he could for my mom. My mom gave a lot to our family. She worked, she took care of us kids, she cooked and cleaned for us. She kept us safe. My dad disappeared under the weight of having lost his spouse. I am 48 years old and I’ve been terrified that maybe I’ll find Eric dead on the floor. I can only imagine the mental spot my dad was in. And I have compassion for him. And have had for years. The problem was, once trauma took hold, I wasn’t being narcissistic. I was trying to stay alive. I was trying to be the person people expected me to be. I had difficulty with school. I still don’t like reading. It makes me tired. And I don’t get the pleasure others get from it either. Eric can read a book like he’s watching a movie in his head. I just see words. Some books have fared better than others for me. However, if I can help it, I will watch tv, movies, or listen to an audio book. And since I work by myself (mostly), I can do that. (Audio books only….. I reserve tv and movies for home).

I have fought so hard to feel safe and secure. And while most people think – well, you bought your home outright. No mortgages… you’re safe. You’re secure! That’s not how my brain think about it. While it’s fully rational to think that way, my brain isn’t organized that way. I think about all the things I cannot afford to fix. Our house (being that it’s from the year 1896 or 1897), the house is not level. We’ve had quotes between 30-60k. I’m the only one working. So, most of the time, I’m thinking (especially if Eric reflects to a crack he found in the wall, or needs a level surface and cannot find one) FUCK! I can’t do this! And when Eric told me that our property taxes went up 50% this year -I panicked.

I went from living with my dad – to having to know how to manage money. Manage a place to live, insurance, kids, etc. I made choices that led to my early life being complicated by things I didn’t understand. I struggled, hard. I didn’t have my nuclear family (mostly) to help me as I didn’t live close by. And no one called me or tried to interact with me. So, it was me, Eric, and his parents. Teachers, social workers, family therapists, therapists, so many people were in our lives during various periods of existence. Doctors, psychiatrists, neuropsych, urology, etc…. I felt like I was constantly being pushed in one direction or another without pause. Without a time to feel like I could breathe. Literally, I could breathe. I just couldn’t enjoy ME. I had to be something for everyone. I had to “perform” being the best version of myself for everyone else so I wouldn’t fail them. No consideration to JUST ME. Because I couldn’t.

Even after Darrian died, I couldn’t think about me. The thoughts stayed on….

I have to stay working

I have to keep us fed

I have to behave

I have to pretend I’m okay

….. what I need is for someone to say they care

…… what I need is for someone to say that I matter.

…… what I need is for someone to say that I am good enough

…………. Yet, what I REALLY need is for me to believe those things that

I want others to validate. I can be the person I want to be.

Speaking of dignity. Eric has been mentally and physically disabled for many years now. He doesn’t have a full-time job. He helps a friend with her farm, but that’s limited. He does what his body will allow him to do. And because he’s mentally ill too, he can get really ugly (attitude wise) – and coming from a background where mental/emotional abuse did happen… I have to remind myself that Eric is not the person to be afraid of. That he doesn’t mean anything to me by what he says. He’s safe in expressing his dissatisfaction with his lot in life. I just have to allow myself to know that … it’s not my fault. I didn’t do it. And he doesn’t expect me to fix him. With that in mind, I don’t really ask for hugs or a kiss often. I will tell him I love him ad nauseum. Today, since I made a phone call yesterday, I decided to wait for him to get done taking off his shoes to ask for a hug. While I was in that embrace, I told him. It is very hard for me to ask for hugs. Not only do I know that he’s suffering, I’ve had to live my life not asking for anything that was not freely given. That extends to physical contact. I reminded him that I am trying – and that these are the reasons I don’t ask for anything. I had to live my life being independent (forcefully). And affection is truly what I need. And to understand what I am entitled or deserve.

Yes, I have a home, a husband, my life, etc…. after all those years of continuous trauma (some involved different places, people, things), I didn’t feel there was a consistent anything. And basic human dignity was in short supply. If I could do it over, I would try to open that scary box of feelings to my family. I would try to tell them that I needed them. I couldn’t. It’s taken me 23 years just to tell my husband why I feel weird about asking him for hugs. And I’m 48 now. Can you imagine the way my brain was back then!? Sure, it probably looked like …. .

I WANT what I want NOW!

In reality…. it was me saying, I need you to show me that I am worthy of love. You being present shows me that I am still worthy of that. And that I’m worthy of that, from you. You have shown me safety and security. And that will move on in the future to my own children.

Instead, I was a haunting reminder of who has been lost and how I couldn’t be expected to be smarter than all of the adults in the IALC and beyond.

I was doomed to fail. Yes, I was reactive. VERY reactive. If you talk to the police, there are people negotiate with hostage situations. Forensic interviewing for children that are victims of varied abuses. Why was I not worthy of that kind of love, that very basic dignity. And even knowing that… I just have to know that I am worthy. I was worthy. People were just incapable of dealing with that. I can still forgive myself for how I reacted. If others cannot forgive me, that’s not my problem. I know who I am. And I am getting better at being myself every day.