Confessions of a Carson

Here's a confession. 

I don't know how to ask for help.

I can do it objectively. As in, talk about dysautonomia and my experience with eating disorders and depression. My reflections on anxiety and thoughts on all in between. But there is some microchip in me missing for when it's in the moment. I don't know how to ask for anything unless the moment has passed somewhat and I've dealt with it in some capacity. Whether reflection or distance or it's, at least, not as raw. 

Plus, "help" is such a heavy word for me. Oftentimes it's appropraite, yes. But a lot of the time it's something else. Another word I can't quite place that doesn't mean anything less, just something different.

I have too many thoughts and too many feelings. I think and feel them now, which is good. Really good, because I used to not. But it's like they're in a pot these days with a lovely, clear lid. I let them bubble or simmer or cool or do whatever they need to do; the clear top so I don't hide them or ignore them because self-growth and bettering yourself and being healthy and stuff! But when things slop over the side, or boil over, I freeze. And instead of asking for help or someone to sit on the floor and wait with me, I just stand there until it settles, clean up, and then if I want I say, "Guess what my emotions did today!" 

There's nothing wrong with this, of course. But it's the fact that I literally don't know how to (can't) do it in the moment. I don't know how to say, "Will someone talk to me because I would like to chat right now." Maybe there is just a limit to what I'm capable of in that capacity? I don't know.

So, I thought, wouldn't it be nice for little broken me if there was a signal I could use? Like a bat signal, or "steal second base". The suave 'side of the nose' from The Sting or a picture of a giant rooster wearing a fish hat. (Or a bat signal OF a rooster wearing a fish hat. Bam. Nailed it.)

But it could be universal, then. You wouldn't even necessarily have to speak the same language as the other person. And wouldn't that just be easier than trying to find the words? Than saying,  "I need help" or "I need someone to listen" or "Can someone talk to me about unrelated, stupid stuff so I can feel less alone"? Instead, people could just walk by you and see you asking without you having to ask. 

I don't know. I'll keep trying, but I'll keep thinking this thought, too. Because I like it; I picture strangers hugging strangers because of it. 

Suicide Prevention and Chronic Illness

Today is #WorldSuicidePreventionDay, an important topic which affects everyone regardless of gender, race, social status, age, sexual orientation, etc. Of course, in some of these subsets, the liklihood of suicide can increase. For instance, according to www.yspp.com, "More than 30% of LGBTQ youth report at least one suicide attempt within the last year" while this article from usatoday.com says research shows that four out of 10 transgender people attempt to kill themselves. Additionally, Eva Musby has written that suicide risk is several times higher for those with an eating disorder.

Suicide prevention is important for everyone and affects everyone. While I sometimes had trouble with "awareness" type campaigns, I do feel that talking about mental health issues and bringing them to the forefront of conversations can lesson the stigma attached to them and, hopefully, encourage people to reach out and seek help.

With that said, I started thinking about suicide and chronic illness. Until earlier this year, when I read about the tragedy of Tina Tournant (which I reflected upon here), I had not heard anything mentioned regarding the two. And that, to be honest, was a surprise to me. Because though I've dealt with an eating disorder and depression, some of my worst struggles with suicidal thoughts occured when I was very sick with my chronic illness.

I remember literally watching, from my bed, a year go by. Day after day after day. My favorite, Fall (in which I didn't get to sit outside and drink tea) falling to Winter (in which I couldn't go out and romp in snow), and then Winter turning to Spring (no planting flowers or romping with my dogs), then Spring to Summer (where I continued to lie in bed with the window open, listening to children play along the street beneath me). And then, of course, Summer dropping -- once again -- into the crisp Fall I couldn't enjoy.

The life I had was gone. I was sleeping for 20 hours a day. I wasn't me anymore. I was literally too tired to laugh. Too tired to stay awake through an entire movie. I forgot family birthdays and things my husband had said to me just 2 minutes prior because of my brain fog. And, fuuuuck, the guilt I felt about everything was excruitating. My poor dog never getting to go on walks, the stress on my husband who had to care for me, the dirty house because that was what fell to the wayside (along with everything else, of course). How is a life a life when you have a chronic illness? It destroys me just thinking about it. And I remember thinking, "If this is the kind of life I'm going to have forever, where I am so fatigued I can't even participate in living let alone function, then I honestly don't know what is the point."

Sometimes I tell people I'm alive today because I've been too stubborn to die thus far. And it's true.

During that time of incapacitation, though, I rediscovered my love for photography. It was, honestly, the only thing I could do. I was too tired to read. Too tired to knit. Too tired to watch TV. But I could see something in my room, a shaft of light, and snap a photo. (And then sleep for 5 hours afterward because it was that exhausting. But I did it.)

Photography helped me realize that, even though every other part of me was ill -- my body and my mind and my heart -- my spirit wasn't. There was a quote I found one day, which I would repeat to myself over and over, "There is sickness here, but I am not sick." I loved this quote because it was true. My soul was not sick. Nor would it ever be.

Such things don't make suicidal thoughts go away, of course, but they help. And they gave me the hope to seek help, too. To let people know that these kinds of thoughts were running through my head. To speak to my therapist and to other people who deal with dysautonomia and chronic illnesses. And to, ultimately, be honest and say, Yes -- I can personally attest to suicidal thoughts and chronic illness.

I wish I could have met Tina, though. I wish I could have hugged her and told her that I understood how tired she was fighting the fight. I wish she and I could have taken a break together for a few days or weeks or months -- just stopped fighting and let ourselves be angry and pissed off and grieve for our old lives -- before considering getting up and trying again. Maybe this time leaning a bit more on our families, speaking with a doctor, or practicing being more gentle with ourself.

Or, at the very least, I wish I could have told her that I understood why she felt the way I think she did.

So, here's the thing. I understand how tired you are fighting the fight. It's ok to take a break and be angry and pissed and grieve for your old life -- I will do it along with you. I understand why and, yes, there is sickness here. A whole entire and new and different and frustrating life, but we are not sick.

"I have watched as huge swaths of my abilities have calved like chunks of ice falling from a glacier into the sea. My circle of friends has shrunk, the role I used to play in family life has diminished dramatically... my sense of myself erodes in parallel and I mourn those bits and pieces as I would the loss of a loved one. However, there is one aspect of the self that even my disease cannot touch and that is the soul... And that is where hope lives; not a naıve hope that I will, by some miracle, have my former self restored, but hope that tomorrow, and the day after, can still be days from which a measure of joy and meaning can be derived. And from hope springs optimism that, even with great limitations, there is life to be lived.” - from “Finding Hope in the Midst of Despair: My Decade With Parkinson’s Disease and Lewy Body Dementia” by Dr. Thomas B. Graboys

Other people might not fully understand our struggle and battle, but we do. Let's fight together. Let's talk. Let's seek help.

Love,

S

www.suicidepreventionlifeline.org

Recover/ed/y

Today I was lucky enough to join in an #AEDchat hosted by the Academy for Eating Disorders (@aedweb). Aimee Liu (@aimee_liu) and Andrea LaMarre (@andrealala89) led the discussions and I found their answers to be spot on. I will post a link to the conversation in the coming days, but I highly suggest you check out what both of these these women have to say!

Oddly enough, this comes on the back of a week of stumbling across a number of badass people who are writing about their recoveries from eating disorders, and it has been beautiful reading them. Some people are just beginning to seek help, others have been in recovery for years and are requiring "maintenance" of their symptoms. The differences and similarities among us continues to astound me. The fact that we can all be on the same, but different journey, and at different extents of it, is just beautiful to me. In a very awe-inspiring, otherworldly kind of way. My whole life I tried to keep away from people and protect myself and here, in our deepest struggles and darkest moments, we find each other.

I am in awe of the honesty. I am not sure if I would have been able to write so openly and publicly when I was going through my recovery. I mean, as if seeking help isn't brave enough, these men and women I am finding are talking about it as they deal with it! It is a truly courageous thing.

As I was reading through (and some discussions were related to this during the #aedchat), a lot kept touching on where the person wanted to be and hoped would be and I realized, I have tried to be such a strong advocate of "recovered" that I do not want to give off an unobtainable ideal of what it was and where I am.

I say "recovered" though for a number of reasons. One of them is that, back during my recovery, I read or heard (I can't remember) someone saying that you never really recover from an eating disorder. And that pissed me off, honestly. Because a) you don't know me and b) geez, way to be hopeful here.

I can understand what they might have been trying to say, of course -- that it could always be a battle, that whatever inclinations we may have toward an eating disorder might always be there, that ED's are -- really -- an addiction, and addictions require on-going, continuous assessment and maintenance.

But that you can "never fully recover" -- I don't believe that.

When I speak of my recovery, it's in the past tense. I am recovered. This, however, is not to say that thoughts do not try to creep back in or that I have some days where I feel uncomfortable and horrible and catch myself judging my body. But they are few and far between. The vast majority of my life is spent outside that place now. And, if I fall back into it, I have been removed so much from it and have practiced new ways of dealing with things, that I am usually able handle it. Sometimes on my own, sometimes with the help of my friends and family, sometimes with wise words from my therapist.

Was it always like this? No, definitely not. Early in the recovery it was a fight to eat. I wanted to, I needed to, and I did. But it was a fight. There was anxiety I couldn't explain. Self-loathing. All that good stuff.

Will I always be recovered? I certainly damn well hope so. I feel confident that I have my support system of my family and friends, my therapist, and my self to keep me in check. And trust the methods of coping I have learned through out the past 8 years. I explained it to my husband like this:

Back, early on in my recovery, I was on one side of a cliff and the eating disorder was across a very small crack on the other. As recovery went on, the gap between the cliff grew and grew. In the beginning, if I fell, I fell right onto the other side, right into the ED. But now, when I fall, there's this huge big chasm between me and the ED, full of family and friends, my therapist, and a myriad of coping mechanisms I have worked very hard on.

So, while the ED might always be there on the other side of the cliff. And some days maybe it's found a megaphone or might be trying to build a bridge back to me, that doesn't negate any of the work I've done or the space I have created between it and me.

Here's what I guess I'm trying to say. We can't have expectations about recovery. We can't give ourselves timelines or guidelines. I guess we can't say that we will be recovered 100% and never ever deal with those thoughts again.

But what we can say is that there is hope. That there are badass people fighting their fight alongside our fight, every day. That recover/ed/y is a word and what really matters is what we choose to do in this moment.

And that nothing, not even if we stumble, changes the fact that we are a community of warriors.