The first single off of my new album drops today (link below), but this rests only in the margins of this post. The song is about first, my wife and how she pulls me through life, often kicking, screaming, and punching walls. It’s about receiving care. The second verse is broader, about how we as a society have devalued interdependence to our peril. The shining light of this song comes from the facts that we are not alone. We are surrounded by others like us, and most people I know are prone to help when things get rough.
Yet here we are, resting comfortably in a society which looks down on people who are dependent on others for their care. We are seen as a drain, wasted potentials, something to be forgotten and left to die. One of my biggest struggles over the past 2-3 years is the growing dependence I have on my wife and certain special friends to be my caregivers. Because I, too was ingrained with the same cultural values as everyone else. “Pull yourself up by the bootstraps, everything is your responsibility, you can’t count on anyone in this world.” For a long, long time I did this. I learned to act like people who were well liked. I realized at a young age, I was very different from other kids and there was not going to be anyone there to protect me. I was raised with fairly absent parents (perhaps they were there physically, sometimes, but they were never there emotionally). I got hit a lot, I was told I was stupid, I was told I was a bad kid and wouldn’t amount to anything. I was told I couldn’t take responsibility.
It’s taken me a long time to realize none of this is true. These uniquely isolationist ideas are implanted into our brains from birth. We grow up with them hammering in through grade school and on into our lives. It results in two very dangerous ideas: people who are sick, chronically or not, receive no respect or reprieve for an illness which isn’t their fault. Second, it creates a mentality where we should not ask for help, asking for help is a negative trait.
Do you see how full of shit this mentality is? I suffered silently for years with my neurological impairments before I felt confident enough to talk about them. The same thing goes for my PTSD. Some of you may look down on me because I can’t work a “normal” job because the only work I can do is writing songs (and my various ailments often inhibit this job, too). And because that work doesn’t make money (yet, fingers crossed), I have very little value to the world. “Why would anyone choose to help me?” I’ve often asked.
Having this question at the ready defeats me before I start. It’s already difficult to ask for help, but now my brain tells me I don’t deserve it. This isn’t some natural function of my impaired brain. It’s the product of our society’s elevated importance of self-reliance. And then I’m inevitably turned down when I do ask for help, which is why I have only a few friends (and my wife) I feel comfortable calling on when care is needed. I’ve been turned down by so many of my friends that I don’t feel I can trust them with my well-being anymore. Isn’t that fucked up? It’s really unfair and really hurts.
I’m chronically ill. I’m not getting better. Like others, I must accept this, and I continue to have a hard time. I still believe it will magically disappear someday. It hasn’t for 30+ years, there’s no reason for me to hold on to this hope anymore. Another bullshit idea wired into us is giving up hope is bad. I think this is true for some stuff like if you have cancer you should do what you can to fight (or don’t, it’s really your choice). But with chronic illness, hope is the glue that sticks you in place.
I don’t think I can truly move forward until I voluntarily give up the hope that my mental health disabilities will go away. The difference is it has to be my decision to give up the hope, this is what makes it different from losing hope. Giving up the hope my life will ever be “normal” allows me to put hope in another thing: The future, a new kind of life; different, but perhaps more meaningful.
Also, check out Ghosts. I’m sure you’ll like it. It’s out now on iTunes/AppleMusic, Spotify, Tidal, Google Play, Amazon, etc. Visit my site for more details.
One thought on “GHOSTS”
I just heard this song for the first time today. I love how you speak about your wife, and how you two work together to “do” life. My husband was also recently diagnosed with autism, and we are also traveling a road of discovery and finding different paths than perhaps we expected. Thanks for sharing!