So Everyone Has a Choice?

I’m sitting on the couch (it’s been 4 hours now) watching my daughter, Melissa, lay motionless, her typically rigid, contorted body relaxed and straight, her usual flair for the dramatic, quieted and gone, for now. This is the day after a night of seizures. She is asleep on the floor. She looks so peaceful and relaxed that I almost feel good. It’s a soft space, the carpet and pad extra thick and chosen with her in mind, since this is the place she spends much of her time while at home. I’ve propped a pillow under her head because it seems to be more comfortable in my mind. Melissa has a traumatic brain injury which left her unable to walk, speak, see or make choices for herself. I am her eyes, legs, arms and voice. I am her choices.

“With every experience, you alone are painting your own canvas, thought by thought, choice by choice.” ~Oprah Winfrey

Melissa is not without an opinion. Without any doubt she lets us know when she does not like something that is going on, such as her physical protests to various therapies, refusal to eat certain consistencies of foods, loud gasps when rain falls on her head and rolls down her back, or swinging her arm when someone touches her without warning. She also let’s us know when she is happy; her squeals of delight to certain songs, riding in the van, the smile on her face when she gazes into the bright sun, and her contagious laughter when she hears odd sounds or the dogs barking. But, what about the bigger things? The big decisions in life, such as living arrangements and surgeries, as well as the little things like what to wear or eat today, or how to fix her hair. What about those instincts we all have, the little voice inside that tells us what our heart desires? What about that voice?

“There is a voice inside of you

That whispers all day long,

“I feel that this is right for me,

I know that this is wrong.”

No teacher, preacher, parent, friend

Or wise man can decide

What’s right for you-just listen to

The voice that speaks inside.” ~Shel Silverstein

People will argue that everyone has choices, and even her living with perceived limitations is her choice. Perhaps they are right on a deeper, spiritual level. I don’t know. The human level, where the majority of us live daily, tells me otherwise. People ask, “what is the one thing you would give Melissa if you could?” Some may think I would wish for her muscles to get the message from her brain so she could walk or grasp objects easily, or to take away the horrible scars she wears as a reminder of her injury. Most feel I would give her vision, or any number of things which appear to limit her. But, if I could give her just one thing, it would be a voice; the ability to express herself fully and make her own choices. Most twenty-eight year olds make their own choices, right?

“Understanding that the right to choose your own path is a sacred privilege.  Use it.  Dwell in possibility.” ~Oprah Winfrey

Melissa expresses herself in many other ways. I write about it often. But her choices are limited. Her dad and I make most decisions for her, trying very hard to think about what we feel is in her best interest. And, I think to myself, am I making the choices she would make? Laurie Halse Anderson said, “When people don’t express themselves, they die one piece at a time.” Are there pieces of Melissa which are dying because she is unable to express them? I shudder at the thought.

Melissa has a VNS (vagus nerve stimulator) device implanted in her chest. It operates much like a pacemaker, with leads that wrap around the vagus nerve which then activate electrical impulses at regular intervals to help control seizures. That’s my simplistic description. Her device stopped working months ago due to a dead battery and broken lead wires (this is what we believe to be true with limited ability to know from tests performed). Melissa’s seizures have increased without the device functioning. She has both positive and negative things we “see” happening in it’s absence. There has been a problem getting the hospital to allow the doctor to perform surgery to either remove or replace the device. This battle has just ended with approval and an upcoming surgery.

“Your mind knows only some things. Your inner voice, your instinct, knows everything. If you listen to what you know instinctively, it will always lead you down the right path.” ~Henry Winkler

Meanwhile we fought our own battle trying to decide what to do when, or if, the hospital consented. Do we replace it or remove it? Will this doctor/hospital battle happen again in the future? How does Melissa feel about the decision we (the doctors and her parents) will ultimately make? I have so many questions to ask her. How does it make you feel? Is having the VNS better than not having it? What is your intuition telling you to do? Are you scared? Does it help you? Does it hurt? What is your inner voice telling you? What is the right path to take Melissa? Are you mad that you have no choice about what is going to happen in your own body? Me too.

Just me trying to express once again…

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3 Responses

  1. If I had one wish that someone could grant me it would also be the ability to communicate choice for my son, Adam. I know he is happy, that his inner self chooses to live. I know what you say because I fear making decisions which may not be Adam’s decisions,,,,we are our kids voice and we we can only do the best with the gifts we have. Blessings as the new year approaches.

  2. This is the constant issue we face with our daughter, too. And many people, I know, cannot understand when we say that if we had only one gift to give her, it would not be vision, or normal hearing; it would be the ability to communicate. Always, always, always I think: what would it be like to not be able to tell your doctor your medical symptoms, not share your hopes and dreams with a sister or close friend, not ask for a favorite food, express preference for a warmer shirt? And it is impossible not to second-guess every medical decision we make on her behalf. And this will not change, not ever—for her, for us, for those that come after us to assume her care when we are no longer here. We can only pray that there are inner blessings for her that we know absolutely nothing about, some secret joys that compensate in ways we cannot see for the challenges and frustrations that are her life….

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