Today is a hard day. Today I’m missing my old self. As I was thinking about this, I thought the best way to get out of this funk was to write a list of what my tumor has not taken away from me. But in order to do that, I think I need to acknowledge what is has taken away. You can’t have the good without the bad, right?

What my brain tumor HAS taken away

It took my face…my smile…the ability to blink my right eye, and with it, some of the vision. It took my hearing on one side and all sense of directionality. It took my balance. It took my self-confidence in public. It took my ability to really kiss my husband. It took my ability to sip a cup of coffee in the morning…or sip anything really. I bite my tongue every…damn…time I eat. It took my energy…the energy I so desperately need to keep up with my family every day. It took my ability to work. I can’t focus long enough, remember deadlines, or maneuver a mouse to work on the intricate details, and you kinda need those things in the design world. It takes my memories. It takes words from me every day.

Most of all, it took and continues to take my time. It snatched away 6 weeks that I spent in the hospital away from my kids and husband. It has taken countless months working toward physical recovery. It steals precious moments every day that I use searching for a word, remembering how to write a check, or just walking up the stairs.

What my brain tumor HASN’T taken away

Love – The love of my friends and family for me, and the love I have for them. In fact, I may even love them a bit more.

Perspective – It really has sunk in that this life is short. If you have the desire to sing, do it now! Smile! Do it now! Don’t spend one moment worrying unnecessarily. Don’t take one opportunity for granted.

Gratitude – I’m so thankful, thankful to be here, thankful for everything I have, thankful for the people in my life, thankful for skilled surgeons, doctors, therapists, and nurses.

Forgiveness – Even though those who know me know I couldn’t get much more forgiving…I think I have. I think I can see, even a little more clearly, that everyone is fighting a battle, and I have a bit more compassion.

Hope – I hope for a cure for these stupid tumors. I hope to figure out how to prevent them. I hope for better ways to treat them. I hope that my nerves repair themselves. I hope to one day have my smile back.

Hugs – They are kinda self-explanatory, right? I can still give hugs with the best of them.

Laughter – I delight in hearing the people around me laugh. I can still enjoy jokes, all kinds of jokes. I can still laugh.

My faith – It’s strong and weak. It questions motives and reasons. It’s real and raw. It’s a human concept for a God who can’t be put in a box. But nothing, not even a brush with death, separates me from the love of God.

And most of all…time. My tumor takes some of my time but in return it gave me the rest of my life.

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I saw the Cornea Specialist today; he suggested I get rid of this tarsorrhaphy and get a gold weight inserted into my eyelid. The purpose of the gold weight is to help my right eye blink with less effort and protect my cornea from any damage caused by dry-eye from, you guessed it, not blinking.

It makes sense. It makes perfect sense. It’s the logical thing to do.

But part of me cannot accept the permanence of it. A tarsorrhaphy is most-often temporary. It’s almost always done with the understanding that it can be undone.

And it’s not pretty. I get embarrassed in public knowing that people wonder what is wrong with my eye. I have moments where I miss my old face and don’t like this new one very much. But I also look in the mirror and tell myself “it’s only temporary”, “this too shall pass”.

A gold weight is a more permanent solution. It can be undone, of course, but it implies that the facial paralysis that I have might be permanent. I’m not sure I’m ready to entertain that thought yet.

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