Sit Quietly...

There used to be so many feelings I couldn't handle.

As time has continued and I have focused my energy, new thought processes, and lots of practice, most have become easier to manage. To be mostly OK with and settle in to. Or, perhaps at the very least, to recognize more quickly than I used to (which, often times, was not at all).

I have to stay on top of my thoughts or else they can overtake me. Whether they revolve around self-worth, the eating disorder voice, anxieties, my penchant for obsessive thinking -- it can be any, or all, or something else entirely different. But my mind will run... and run... and run if I let it.

Even if it is with genuinely good intent: writing more, connecting, doing things around the house -- I can get so caught up in end results, what I want to accomplish, that I wind up feeling disjointed, rushed, and not present. Like I've climbed onto a lamppost to see far beyond the crowd rather than letting myself wade through it, brushing shoulders with people, stepping on popcorn, petting dogs parked under awnings waiting for their owners.

It’s not about being better – not this time – even though that is often a common theme for me. It is, for lack of a better word, tunnel vision. And I don’t think that is necessarily a "bad" thing unless you have a tendency to get 'stuck' like I do.

Since eight years ago when I started my recovery, I have worked very hard to keep myself in the moment. It is vital in helping me stay grounded, present, and not get swooped up into my mind like I so frequently can be. Sometimes I resort to sayings or platitudes to help ‘reign myself in’, but these can often be difficult for me to buy into. Especially when there are things I want, and am ready, to accomplish. Goals are not about the journey, but about the end result, aren’t they?

I wonder if this is one of many reasons why recovery can be so difficult. Because there is a place we know we want to be – we have made the choice, we have decided this is what we want to pursue and this is what we want to accomplish – and then we have to slug our way to it.

Most of the time, staying present makes sense to me. It serves many purposes that I can see and feel. But when I’m working toward something, I have discovered staying present seems less relevant. And though I have been practicing for the last eight years to bring myself back HERE, wherever I am, again and again, it is like I sometimes get so caught up in the vortex of my mind that even if I find the ground it doesn't seem like it will serve a means to this particular end.

Perhaps there is a lesson in all this. In staying present when it feels unrelated. In fighting to stay grounded even when it doesn’t make sense.

Or, perhaps, as I sit here and think, maybe what drives my determination toward more of an obsessive focus is not being satisfied with where I am currently.

But what is wrong with where I am? What is wrong with slowly finding my way to my goals? What is wrong with us being right where we are in our recovery?

There used to be so many feelings I couldn’t handle. So many I've been able to grow into. So why is moving at a pace different than what I want still one of them?

Why is it still so hard sometimes for me to sit quietly and let the grass grow by itself?

Tonight, dysautonomia is...

Tonight, dysautonomia is crying in the dark of your car outside a sports arena.

For so long you've tried to make the best of it. To accept where you are, but also not to give up. And the tangy orange glow of the parking lamp and the promise of your pups at home in slumber reminds you of how tremulously you have lived on that wire. But the blood on your knees—the aching of your muscles reminding you of all you were once able to do. As if their shuddering is not only the unending fatigue, the cries of their atrophy, but the painfully escaping reminiscence of your past life in which you could run. Run. Run! Run freely and without fear. Your mind and your body together, creating their own kind of art. Your feet carrying you, your heart. You were on your own wire then—your own goddamn golden thread. 

Tonight, dysautonomia is the dark of my car outside a sports arena. The tangy orange glow of the parking lamp. The wire now cut between me and my muscles, crying for one last sprint without prudence. To go and to go and to go. And never to stop.

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, "More than 30% of LGBTQ youth report at least one suicide attempt within the last year" while this article from 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.