Rage, Rage Against the Dying of the Light

I had the distinct pleasure of remembering and reconnecting with Dylan Thomas' iconic poem, Do Not Go Gentle Into That Good Night, as I watched Interstellar last night (by the way, what an awesome experience go see it right now.) I've always found it to be a very personal piece, as a person who identifies myself as a fighter, a bit of a rebel and unconventional. Last night's repetition was powerful for two reasons: it reminded me of that when I had forgotten, and it increased my resolve to overcome my current circumstances.

I have been struggling immensely with depression, and for good reason. As of Monday, I know something new about my body. I had a procedure (endoscopy) for which I was anesthetized in the morning and while I was coming out of anesthesia, my (wonderful) doctor came in to follow up on a few things before he had to go see other patients. He told me, in brief, that the test I had last week (about which I've been jokingly talking about my radioactive breakfast) was abnormal, and that I officially have gastroparesis.

Gastroparesis is not a particularly good thing. It's the partial paralysis of the muscles of the gastrointestinal tract, specifically the stomach. This means periods of time (flares) that include (1) constant pain that spikes in intensity with food and elimination and (2) rapid weight loss associated with overfilling of my stomach, causing intolerance to food (especially solids), reflux, vomiting, diarrhea, constipation, and painful bloating.

It is a mark of how sick I've been over the years that I, in that moment with my doctor, was hugely relieved and excited to move forward. You see, because I've been chronically ill with little to no explanation for such a long time, I've begun to question everything - my self, my psyche, my senses. So when Dr. Hanna gave me an official diagnosis and then proceeded to say he believed that my symptoms indicated more (that there is an underlying cause).

For a long time, in my medical experience as a patient, docs have performed similar tests multiple times, sent me on to therapy, and come up with more questions than answers. In medicine, there is a saying associated with the concept of occam's razor (that the simplest solution is usually the answer): when you hear hoof-beats, think horse, not zebra. So the most typical diseases and disorders are the things docs have been looking after for sometime. After some explanation and before leaving the room, Dr. Hanna mentioned that, "Now we're looking for zebras!" It seems whatever is going on in my body, it's rare enough that a lot of docs and a number of very specific specialists wouldn't even know to look for it.

What awesome progress! I thought. And it's true, it's incredibly encouraging to feel validated in this way - to have an actual explanatory diagnosis and be heading for more, with the hope of treatment and relief. It means the world to me. But here's the difficult thing - sometimes I dream of a day when I won't have to put up with this anymore - but there really is no cure. I hold out hope that things can get better, but I also have to live with them in the meantime. And there is a great burden there. In the past week, I've lost eight pounds so far. I've had incredible pain that requires the use of narcotics. I've vomited and had the runs more than I care to detail, and I have to constantly eat to get half of what I likely need - it looks like the capacity of my stomach right now is a 1/4 cup at a time, if that. I'm eating bland purees and liquids and I still get dehydrated and weak. I continue in the voluntary recovery I've undertaken for anorexia, but I come home and need to sleep for several hours to compensate for the effort. I barely wake up and drag myself out of bed, feeling like I've been run over.

Speaking of anorexia, it's stunning, how it wove its way into my life, because I've given less credit to myself for the resilience its taken to survive these symptoms for so many years - anorexia is a reasonable adaptation, considering. I seem to have a handle, if tenuous, on the emotional stability it takes to bear these things and anorexia is a pretty natural result of literally being hurt by food. Some of the most painful parts are sometimes being able to keep up - this disorder come in flares - but often being a 24 year old woman with debilitating and invisible disabilities.

More pressing, to me, than any other struggle is when other people (specifically my peers) don't know what to say or how to relate, even with the best of intentions. As I go through the things that I'm experiencing, I can see a paralyzed sense of hopelessness in most of the people around me. I recognize that it's painful to watch my suffering, and I see the blank looks and the fear in their, no, in your faces. In those moments, I feel so very far from you. And for me, I think the distance is more painful than being outright rejected or abandoned because of my illness. I feel so terribly alone.

When people ask me what they can do, I don't know the answer. I didn't grow up receiving natural love and affection, for the most part. I don't know how to ask for you to love me and not abandon me because abandonment is something I'm so accustomed to. Abandonment in inevitable, whether by choice or chance. You can't change my suffering, the best I could ever hope for is that, painful or not, you'd be willing to share the burden for even just a little while. It's not fun, it's not exciting, it's not something that you envisioned for your life. I didn't envision it for mine, either.

I am struggling.

I am surviving.

I am admitting that I don't have anything left in my reserves.

I am losing hope that I will find a place to lie my head and my heart, a place of safety and comfort and care.

For the first time in my whole life, I'm beginning to question whether it's even worth the fight. I wonder if I have anything at all to contribute or if anyone else ever sees me as having something to contribute.

My sense of self-worth is imploding and I am beginning to be overwhelmed and dysfunctional.

I am turning into a depressed pain zombie.

I know I need help, but I don't know from who are what that help is.

I am not well.

But I will keep fighting.


Do not go gentle into that good night

Dylan Thomas, 1914 - 1953


Do not go gentle into that good night,

Old age should burn and rave at close of day;

Rage, rage against the dying of the light.


Though wise men at their end know dark is right,

Because their words had forked no lightning they

Do not go gentle into that good night.


Good men, the last wave by, crying how bright

Their frail deeds might have danced in a green bay,

Rage, rage against the dying of the light.


Wild men who caught and sang the sun in flight,

And learn, too late, they grieved it on its way,

Do not go gentle into that good night.


Grave men, near death, who see with blinding sight

Blind eyes could blaze like meteors and be gay,

Rage, rage against the dying of the light.


And you, my father, there on the sad height,

Curse, bless, me now with your fierce tears, I pray.

Do not go gentle into that good night.

Rage, rage against the dying of the light.



Love and Admiration,
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