Living with any mental illness comes with many varied, logistical life conflictions. For those with a dissociative disorder this is especially true. There are all manner of difficulties leading a life with mental illness, but what do you do when you discover you aren’t the leader of your own life? Furthermore, surprise! You haven’t been in over a decade and sporadically throughout years of the life you were attempting to navigate. What then?
A life of what many call, “black outs” or “memory gaps,” can be a tricky thing to accept, diagnose, and forget about consistent functioning, more often than not. Dissociative disorders are by no means rare, as some may claim, far from it. While this is commonly stated within professional circles and institutions it is sadly misguided and an ill-advised claim to make. Spreading this misunderstood information is beyond harmful to the 100,000’s living with dissociative disorders. Dissociative Identity Disorder in particular.
DID is a condition where a person’s identity is fractured into two or more distinct parts (sometimes called Alters or Personalities). While it is believed to be rare it is not. It is more common than even schizophrenia. Diagnosed DID, on the other hand, is where the “rarity” becomes defined. If you had gone to dozens of doctors and had countless hospitalizations or emergency room visits in your life, at what point would you give up hope and assume you were a “lost cause?” This is the unfortunate reality for the faceless and voiceless living with DID.
I gave up after only six psychologists, despite continuing on via a medical route, nothing ever came of that. I fully expected one of these professionals to tell me I had an inoperable brain tumor and had X amount of time left to live. That is, not until my parts – Yes, I live with Dissociative Identity Disorder— were able to get us an appointment at the Mayo Clinic, after their own encounters with mental health professionals. My parts went to dozens and dozens of different doctors. Some of them were helpful, in that they gave a part of me some semblance of hope to continue seeking an individual that could help the collective.
This was achieved through the assistance of a female relative, something that was chaotic and unsettling to accept for many of my parts. This relative was not the cause of my fracturing, but she was a contributing factor. Inconsistency can kill, as you may be well aware of. So to Mayo we went and found help in an unlikely source. A neurologist there saw what was occurring and referred us to the therapist we see today. I see. My parts see her. We speak to her and work through the various traumas and life events we have encountered since my very early days. DID is a defense mechanism that occurs for some individuals when living a life of trauma.
Dissociative Identity Disorder stems from severe and continued trauma in early childhood. Severe forms of physical, emotional, sexual and religious abuse cause this disorder. So the struggle to wrap your adult brain around that sort of harm being cast upon an infant or toddler, and then continuing on into teens or adulthood is, in short, horrifying. To accept the reality of this fragile child’s beginning in life means to accept a world where people whom hurt children to this magnitude exist. It also means you then need to see that despite people claiming, “I’d say something,” more often than not they don’t. Because of so many varied reasons I, myself, cannot even begin to fathom; you’d need to ask them of their uncertainties, malice, fears, and lack of concern.
This is not a story. It is not a tale of woe or caution, nor is it being written from an angry spiteful woman. No. This is a simple discussion of the realities of my own life and the others living with this preventable disorder. What it was, how the brain of someone with DID function, and how these parts of an individual create a web of protection, understanding, and ultimately survival. This is my life, our life, and the following is one of my early childhood memories that were recently shared with me by a few of our very brave and young protectors…
Throughout my life there were people who intervened and quite literally saved my life, but not in the way you’d think and definitely not whom you’d expect. Even at this point I had begun to hear “stories” from people about bizarre things they had either seen or heard I had done. Which, in my mind, couldn’t possibly have been true, I kept my head down and mouth shut. I enjoyed playing with my dog and hiding out on the corner…at my local library.
Down the block from there was a whore. Collectively, my parts hate the term whore, but if that is someone’s profession then that was what they were. Was. The whore who helped me (them) was a prostitute on the south side of Chicago, near my childhood home. She was and is to date, one of the most amazing and beautiful woman we can ever recall encountering. She saw one of my parts unsettled, alone and wandering past her doorway. Her two small children were curled up asleep under the overhang.
It was chilly, damp, and I was only wearing a nightgown, no shoes. One of my parts had fled the abuse of that night and was looking for somewhere safe to sleep. Operative word being safe, I should note that probably needs to be changed to “acceptable,” but I digress. They were wandering past this woman and her children when she stopped us and asked if I was ok. She of course couldn’t know I had DID and that she wasn’t talking to me. She had never spoken to me before, how would she know?
One of my more combative parts spoke up completely distrusting her concern, initially. After some back and forth and her continued offerings of help… She eventually made a deal with us to watch her children briefly while she ran to the diner for some coffee. Not willing to take charity or become a kiddie-whore on the opposite corner, this part cautiously agreed the trade. When she returned, with a coffee for her and hot chocolate for us, she removed the gift from her child. A pair of shoes. The source of this heated argument and lure, which is how my parts at first perceived her simple kindness. She said he has a second pair and wouldn’t want someone to allow her child all alone to go barefoot…not in this neighborhood. They did not find out her name, they never asked, it was irrelevant. A few simply called her, “Mother Should-Be.” Regardless of the trade that was made, our time watching over her children and the gift of warm dry shoes, when we walked away they did thank her, but dumped the hot chocolate because inconsistency can kill and kindness comes with a price. She could’ve drugged us. My parts are nothing if not cautious and consistent the majority of the time, even then.
Children are far more intelligent than people deem them to be. My parts were and they regularly errored on the side of safety and caution, just in case. We did not know “Mother Should-Be,” and to my knowledge they never again encountered her, but they definitely did not ever forget her and her random kindness.
Now my life is vastly different. Still consisting of many challenges, but with the help of a few people and our therapist we continue to work towards finding our own normal. “Normal is Illusion. What is Normal for the Spider is Chaos for the Fly.” That is a quote that has stuck with us since I was a child. It is something we quote often, both in writing and in our day to day life. It was said by, Morticia Addams, another example of a loving mother and like “Mother Should-Be” another reason why my parts and I never judge people until we know them well enough to do so.