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The Parts of My Illness I Hide From Those Who Think I'm 'Strong'

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We are three and half years into my diagnosis with new daily persistent headache and I’ve gotten fairly used to the idea that I am going to be living with a constant headache, never a second without pain, for the foreseeable future. Now, don’t get me wrong. I still have hope that the answers are out there for me, and on many days, while my headache is never gone, it is at least manageable. Then, I have a day like Monday, where the pain spikes to the point that I black out and hit the back of my head, and I struggle to see the light. I think this is understandable.


I’ve also written about how much the people in my life have meant to me throughout this experience. And I mean every word of it. People have and continue to support me in so many ways, and sometimes the greatest support comes in the form of kind words from friends and strangers alike. You compliment my strength and optimism. You tell me I inspire you. And this means so much to me because I do try to stay positive in the face of my situation and I am open and vocal about my story in hopes it will help others who can relate in some way.

But sometimes, on nights when I cry myself to sleep, or days when I can’t force myself off the couch, I don’t feel strong. Not strong and not optimistic, and not the gracefully coping person you think I might be. I feel like a fraud. Because here’s what you don’t always see:

I’m not always positive. My moods can be dark and over the top. I have a flair for the dramatic and a lot of time on my hands spent watching daytime television. This melodrama seeps in. I imagine hope – “a thing of feathers” as Emily Dickinson wrote – flying out the window after a new doctor visit or just a particularly unproductive day.

Sometimes I wallow in sadness and frustration that this is not the life I had wanted, that I thought I would have, if you’d asked me five years ago. I envy other lost souls asking questions like, “What do I want to do with my life? How will I make it happen?” My questions are: “What can I do fix these limitations so I can even begin to ask those questions?”

Sometimes I feel like a shell of my old self. I don’t read a book a week like I used to. I’m lucky if I finish one in a month. I don’t have single writing sessions that turn out 10-20 pages on a Saturday anymore. My physical limitations, my inability to focus, particularly on fiction, has diminished my output and my prolificacy has suffered. I’ve had to reevaluate my personal and professional goals time and time again and my determination is constantly met with checks and balances I wish didn’t have to set in place.

Sometimes I have to give up on things. Important things – commitments, involvement in groups and projects, responsibilities. This makes me feel unreliable and guilty – I have always been the one that people can count on.

I’ve had to give up things I love. Some are not so bad. Others are far worse. I am constantly considering giving up singing, my other great passion, because the physical toll it takes on me can overwhelm me. But I haven’t, and I hope that I won’t, despite the physical and emotional struggle. I have to continue to hold onto something I love, something I have some control over. This is where the headache just can’t win.

Sometimes I feel like my condition is making me selfish. I put so much time and energy into dealing with my head and its collection of related problems and possible answers that I can feel consumed by it. I worry I haven’t been there for the people I love and care for – not in the same way I always have been. I’m afraid I’m not as patient or invested. This is hard for me. My relationships are everything.

Sometimes, I worry about my body, my mind. I am, at times, forced to be inactive and isolated. I don’t like how this makes me feel, or what it is, in turn, doing to the physical appearance of my body. I get lonely. I have let this get in the way of building relationships with people, new beginnings and opportunities that might arise, because I am scared and I don’t always feel in control of myself, my emotions.

Sometimes I feel guilty for feeling sorry for myself in the first place. It’s so easy to drown in self-pity over the things I can’t control. Sometimes I forget the lives of others who have it so much worse than I do. And maybe that’s not fair either – that kind of comparison game. If I diminish my own struggles, will I start to rank the suffering of others? I must remain compassionate and open to the many ways in which all human beings struggle and work to see my own suffering, not competitively, but relationally.

Finally, sometimes I worry that I am wasting some of the best years of my life. I worry what will happen when the answers don’t come, they cannot fix my headache problem. What will my life be like then?

I guess I’m writing this because sometimes, it’s just plain hard. It’s hard for me to talk about this and it’s hard to let people see anything but the brave front I try to put on, in part because I need that for myself, and in part because I don’t want to be a burden. More than anything, I don’t want to let anyone down.

I want to be a fighter. I fight every day for happiness, gratitude, to feel blessed in and amidst my situation. In the end, on those days I feel a little bruised and broken, I guess I don’t want to let myself down either. I want to be the brave, strong person you think I am, can be – the one I continue to fight to be.

But, I think I also have to give myself a little grace. The author Anne LaMott once wrote, “I do not understand the mystery of grace – only that it meets us where we are and does not leave us where it found us.”

Maybe, in all of this, I cling to the mystery. The mystery that this grace I am seeking is already a part of me, is all around me, and that I cannot, will not, continue to be the same person in my hunt for the knowledge of this. Maybe it’s OK that life is often puzzling, and that the expectations I put on myself (for me and for the benefits of others), are all a part of fitting these pieces together in the end.

There is something in the center of me, something that burns. I used to think grace fell soft like rain water, but now I think it’s this fire that pushes me to fight and also understand when the time is not right, when sometimes I have to just close my eyes, and tell myself over and over again that I am happy to be here. I am happy to be alive.

A version of this post originally appeared on The Huffington Post.

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Thinkstock photo via kameshkova.

Originally published: June 28, 2017
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