Being a caregiver to a child with a neurodegenerative illness is…interesting. I already have a child with an autism spectrum disorder. Before Grace was diagnosed Eadaoin was already in therapy for an anxiety disorder brought on by a house fire. Milly had been getting some kind of intervention since she was three years-old. ASD and EI go together like PB&J.
In some ways, I was fortunate. I was accustomed to having children with “issues”. I mean, come on, I had issues. My mother has Borderline Personality Disorder so I grew up with an adult with profound mental health needs. By the time I was fourteen I knew all about residential treatment facilities because my mother spent time in one. People with BPD often struggle with suicidal ideation. In Texas in the 80s, if you attempted suicide, they tossed your butt in a residential treatment facility. No 72-hour lockdown for you! But, people actually got real treatment and a real mental health assessment. My mother was at the facility for six weeks. Had she stayed the course in outpatient treatment she might have actually improved.
All this is to say that when Grace began to show signs of mental illness, I wasn’t blindsided. While a personality disorder and schizophrenia spectrum disorder are in no way the same thing, the outward symptoms often look the same in the beginning. Emotional intensity, erratic behavior, lability, and displays of anger or even despair and hopelessness are seen in personality disorders (Axis II diagnoses) as well as in mood and thought disorders (Axis I diagnoses). I was scared to death when I saw these symptoms emerge in Grace, but I wasn’t ill-equipped. Sometimes your past can actually help you in ways you never thought it could. I never thought that growing up with a borderline mother would equip me to parent Grace, but it has. I have a very high distress tolerance for extreme environments with high emotional intensity. I don’t like it. In fact, I abhor it, but I know how to navigate environments like this. This is where I offer encouragement to people who often believe that they don’t have what it takes to offer support to people who are struggling with some form of illness or devastation. Sometimes it takes one to know one. What do I mean by that?
Well, oftentimes people mistake poor distress tolerance for empathy. Let me explain. I’ve only discussed once in this space that I survived human trafficking. It was a long time ago. I don’t define myself by the event, but it was definitely an experience that scarred me. Sometimes I trip on it. Sometimes I remember details that were buried. When this happens I often find myself bingeing on crime procedural television shows particularly “Law and Order:SVU”. Why? Well, that show deals with sexual crimes. It recognizes that sexual crimes are wrong. There are strong reactions around the sexual crimes. Justice is served to the perpetrators, and the victims are spoken to directly rather than stepped around. In my experience, justice was not served. My perp got away. I need to reorganize my experiences and memories when new details emerge. I need to be reminded that what happened was not only a crime but it was also an offense. There are so few witnesses to the suffering I endured when I was in captivity. When people who know me find out what really happened, their response is often one of shock and discomfort or morbid curiosity. Trafficking and sexual slavery are so outside of every day experience that people are often not able to overcome their own personal discomfort so they look away as if I am the damaged one. This is not empathy. This is poor distress tolerance and fear. What often follows are judgments because it’s natural to judge what we don’t understand.
For example, my husband does not like to feel emotionally uncomfortable. Who does? So when he catches me engaging in one of my SVU binges (which is rare these days), he’ll often say something like this: “How can you watch that? It’s so awful.” That’s a value judgment. He sees the content of the television show, feels extremely uncomfortable, sees that I’m watching the show and not appearing to feel as uncomfortable as he, and makes a judgment that I lack empathy because I don’t turn it off. I, in fact, have a great deal of empathy. I am entering into the show, needing to vicariously experience the justice and appropriate responses to sexual violence that the characters provide. I’m not trying to avoid discomfort that intense subject matter might provoke in me. Empathy is putting oneself in someone else’s place in order to practice feeling what that person feels, but empathy is not compassion. Empathy is the precursor to compassion. Compassion is an action that follows empathy. We can feel empathy but not be compassionate if we do not act on our empathy. In fact, we can be quite selfish and be empathetic at the same time by doing nothing after fully entering into the suffering of another.
So, how does this relate to caregiving? Well, like it or not, there is stigma attached to mental illness in this country. There’s stigma attached to sex crimes as well. You’ll seldom hear someone ask the victim of a mugging, “What did you do to make that robber think you wanted to be robbed?” But, almost every rape victim has been asked, “What did you do to make him think you wanted it?” It’s a very odd paradigm, but I think stigmatizing people for having a brain that’s gone haywire is odd as well. Do we stigmatize diabetics for having a pancreas that has stopped working properly? No, but because a malfunctioning brain often manifests its illness behaviorally, neuropsychiatric and mental illness are all lumped together and called “crazy”. I’m dumbfounded. This is the moment, however, when those of us who’ve seen the darker side of life can come alongside those who are weary. Those of us who have borne the stigmas can speak to those who care for loved ones struggling with them. Oftentimes, when you go through something very difficult you walk away feeling so damaged that you wonder if you’ll ever be able to contribute to the greater good again. The world at large has little to say on this point that’s good or positive. Victims are often ruined, and the mentally ill are viewed as ‘crazy’. That is not my view nor should it be society’s.
Who do you want fighting for you on your worst day when you’ve had enough? Who do you want sitting on the other side of the door when you’ve locked yourself away from the world? Who do you want looking down at you when you’ve hit the bottom? You want the person who knows how to fight. You want the person with the key. You want the person who’s already climbed out of that pit and knows the way out. You need a person who isn’t afraid to get their hands dirty because their hands are already dirty with their own blood, sweat, and tears. Why would they ever be offended by yours or your loved one’s? Who is that person?
That person is most likely a victim of something.
Every survivor started out as a victim. They know darkness. They won’t be bothered by the darkness or messiness in your world. That’s what I mean by it takes one to know one. Every single, painful event that has ever touched our lives can be used to benefit someone else’s. Society and self-involved, myopic people lacking vision might not look twice at you or me or the “crazies” in the world. But, when the shit hits the fan, and it will, it’s the lovers of the broken and the broken themselves who often come through in the end. Our stories do not end with trauma, violence, or a mental illness diagnosis. Sometimes our stories begin there, and in the midst of the journey we can find the unlikeliest of friendships, meaningful connections, and unexpected adventures, all because we suffered. That suffering becomes a portal into something much bigger. Our lives expand. Our hearts enlarge. And we are changed. For good.
So, whoever you are, wherever you are, whoever has been placed in your life today to love and care for, know that everything in your life–be it good, bad, or ugly–has made you uniquely prepared to be that person’s champion. You have never been defined by any event or act done to you be it big or small.
You are you. You have value. And the world needs the goodness and life that you have to offer. From one caregiver to another…