I’m going to try again

I’ve not posted on here with any consistency. Unfortunately, that has been by design. I suspect that someone in my life is regularly reading this blog, and knows it belongs to me.

However, this past weekend I attended a conference for others with DID, and I made the most amazing connections with others who also have DID. I feel less alone after this amazing experience. There were many people there unafraid to be who they are, regardless of their DID. Though, I hate to admit, typing these few sentences is difficult. It’s taken me 45 minutes just to get this far in creation of this post. But, I’m going to keep trying because I can see that my fear and hiding are not serving me.

It’s the most hopeful I’ve felt in a long time. I can feel the ever present darkness get a lift with a crack of light shining in my black cloudy fog of I don’t matter in this world. That is my default thought, that I don’t matter. But I met people who do matter, and they are not held back by their DID. I got to know lovely, loving people who like me back and want to be my friend. What a small beautiful miracle …

I’m going to try to bottle up that courageĀ  and confidence I saw this weekend, and apply it to this blog.

The Bus Terminal

I have to leave you behind at the bus terminal. It is time for us to board our separate buses. I want to be on your bus, but my ticket has a different number on it. I avoided it for a while by taking a longer layover, but in the end, I have a different destination from you. And the longer I delay my departure, the more time that passes before the inevitable will be clear to both of us: that I should have heeded my original bus ticket in the first place, when I realized we had different tickets.

You, who are kind beyond measure with my PTSD and dissociative disorder -I wish you were on my bus. But, alas, we are not even on the same busline. I will miss how you gently rub my head when I shake unexpectedly, and the fab way we baked that chocolate cake with peanut butter frosting from scratch in my kitchen. We learned the difference between unsweetened cocoa and Dutched cocoa. I still have that container of unsweetened cocoa we accidentally bought at first, not realizing our mistake. We planned on doing something with it sometime. But sometime never came, and now there it sits on my pantry shelf. It will likely remain there. I like looking at it, thinking of you in this kitchen, bringing it to life with your presence.

Aside from baking and a fondness for board games, we have little in common. Before I forget, please keep my copy of Power Grid, the board game. I had not played it in years. Let it live on with your friends. Games should be played instead of gathering dust in a study. I will miss playing games with all of you.

My heart does not yearn for you the way it should when two people are in love. We have little to talk about, unfortunately. I think that’s why we usually tried to “do” things together because we both knew, on some level, there wasn’t a connection, a passion, a love -none of that was there. What we had was a friendship, for which I hope some day can be revived if you forgive me for all of this.

I yearn for your companionship, but not your heart, and that’s why my bus ticket is different from yours. We’ve hung out in this bus terminal for a good while, and it’s been a lovely, but I should catch my bus and stop dillydallying. My bus ticket is nonreturnable, and so is yours. As hard as it is, I must wish you well. It was the best layover ever, but we can’t spend our lives in this bus terminal. It’s time to find out where our buses will take us. One last hug, but I can’t turn back when I walk away.

To Every Clinician with PTSD and DID Clients

This weekend I finally felt the edge of hope for the first time in a long while. Take note, clinicians: it’s not because of medication, a therapeutic approach, or a hospitalization. It seems that the answer all along was incredibly simple: people. I’ve needed to connect with people, in particular, people that understand dissociative identity disorder. Yesterday I met a handful of women with DID, and I’m buoyed beyond words by the experience.

I mentioned my ever constant and present experience of losing time at home, and spending as little time as possible at home because I lose time. I spoke to a woman with the exact same experience. It’s not lost on me that coming out of the isolation with this meant that another person had to have this same experience. I wanted to throw my arms around her as she conveyed her experience to me.

Here’s a note to clinicians that I wish could be delivered to every single one out there: All the talk therapy, theoretical approaches, medications, hospitalizations and case management will do nothing to alleviate the loneliness of mental illness. Group therapy is a regular part of any hospitalization, but once you’re launched back into the real world, group therapy is surprisingly difficult to locate for non-veterans with PTSD or DID. Beyond group therapy, support groups for non-veterans with PTSD or DID are just as difficult to locate as therapy groups. The result is that such individuals find themselves isolated with no peers to connect with. Even the best therapist is no replacement for peer connections. Please do what you can to create therapy groups and support groups for people with PTSD or DID. Many researchers are spinning out trying to find the PTSD cure. Perhaps the answer is not in the cure, but in the connections. Together we can endure a lot if we feel the balm of support. Can the answer be as simple as connections with others? Maybe. This is where we can learn from Alcoholics Anonymous. We all know I’m ambivalent about AA, but they certainly get the people part of contributing to success with continued sobriety. We can’t cure each other of our PTSD or DID, but we can feel less alone in this fight. And some days, that connection may be the very thing we need to get the next day.

The most important thing a clinician can do is seek to create opportunities for peers to connect with each other. Ask your clients if they know anyone else with their mental illness. If you start noticing a trend in that few, if any, of your clients have peer connections start talking with your colleagues. Look for groups. If you come up empty, your clients have likely come up empty as well. Did you know that aftercare from inpatient hospitalization or intensive outpatient treatment always includes a recommendation for group therapy? Most of the time that recommendation is for a Dialectical Behavioral Therapy (DBT) group, which is different from what I’m recommending. But here’s the rub: outpatient DBT groups are also few and far between outside of major metropolitan areas such as Boston or Washington D.C. Let’s work to create communities of support so that no one with PTSD or DID is ever without the connection of another peer. With all the intellect, resources and energy out there this should be a mission that we can make a reality. It’s not an expensive venture, far from it. Tomorrow I’m going to start to be a pain in the ass on this, and I’m going to start asking every mental health professional I come into contact with if we have such groups. I don’t think we do because I’ve done my own looking in my community, but I feel compelled to turn over every rock. Someone needs to ask “Do we have groups for people with PTSD or DID?” “Why not?” “Has anyone ever tried to create such groups?” “Who would know anything about this?”

If I can be a pain in the ass in my own job with my knack for asking annoying investigative questions, surely I can put that skill to use here.

I implore that we all ask our therapists or our colleagues if such resources exist in our areas. Then we need to ask why, and look to rectify the gap. Humans were meant to connect with other humans. Everyone should feel the edge of hope from the understanding of another peer.