Posted by ImproveCareNow™ on October 31, 2019
"Everyone's story matters, and is important, and can change someone else's story!" - Sami Kennedy
Stories matter! They connect us; build awareness, understanding and empathy; they unite us in our pursuit of a common goal and sometimes they even ignite (or reignite) our passion for the work that lies ahead. When PAC member Maddie shared her story – her #IGNITETALK – at our Fall Community Conference the energy in the room was palpable. Here’s the transcript of her talk.
Good morning. My name is Maddie Huwe and I am a patient at Randall Children’s Hospital and Seattle Children’s Hospital. I am 17 years old and a member of the Patient Advisory Council.
I was diagnosed with Crohn’s disease at the age of 13. I had a road to diagnosis that would likely sound familiar to many of you. I lost weight, I was chronically fatigued, and I was constantly experiencing abdominal pain. I went into my first colonoscopy and endoscopy not knowing what the words “Crohn’s disease” were. I was too young, too sick and too exhausted to try to imagine the potential outcomes of the procedure. I just wanted to answer the question of what was causing these symptoms. I wanted to know how to fix the chaos this pain was causing in my life. My only hope going into the procedure was that the answers to my questions would be simple. I anticipated answers that were straightforward, and solutions to my problems that were easy.
I had no idea how my world was about to change.
As I woke up from the procedure, I felt my mom next to me in the hospital bed. I was still sleepy and disoriented from the anesthesia, but I knew from the movement of her body that she was crying. My first reaction was confusion. Why was my mom crying? Then I felt the dread in the pit of my stomach. What had my doctor found during the scope? So, I asked the question:
“Mommy, what’s wrong with my tummy?”
Her words would change my world:
“Honey, you have Crohn’s disease”
I had no idea that these two words were just the beginning.
That two words could hold so much weight.
That two words could change my life.
As I began this new chapter of my life with a diagnosis of Crohn’s, I began to ask more questions. I found some were easier for other people to answer for me. Questions like “What is Inflammatory bowel disease?” “What are my treatment options?” and “How often should I see my doctor?” From there, however, my questions only grew in number and complexity. My new Questions ranged from
“Will there ever be a cure?” to
“How will this change my life?” and
“Why did this happen to me?”
How could 13-year-old me hold these questions alone?
How could any person carry these kinds of questions on their own?
Holding questions in community is more empowering than pretending to have all the answers.
I have learned that asking questions helps us to accept our reality and embrace our grief. To not fight it, deny it or avoid it. By asking questions, I can identify my pain. Even without the answers, the questions are powerful because of their ability to name my grief. And sometimes, answers to the hardest questions do not address the underlying reasons we are asking them. Instead, they attempt to solve the pain, to oversimplify the fundamental complexity of the situations, to treat the grief like a problem to be fixed.
Some people tried to hand me easy answers to my illness. These solutions oversimplified my situation. They shut down my grief and my growth.
Answers like,
“Something good will come from this”
and “Every cloud has a silver lining.”
or “You should be relieved. At least you don’t have something worse.”
Regardless of whether these statements are true, they did nothing to address my current suffering.
I learned to say, “while these may be your answers, they are not mine right now.”
Rather than answers, the questions I have learned to ask teach me to live in and with my grief. And, in time, when I began to find others asking the same questions, I was able to free myself from having to carry the questions alone.
Others like the ICN community.
And the family I found in the Patient Advisory Council.
Community has been so essential for me for this reason. Because I am not always going to feel strong. And when one person in a community doesn’t feel strong enough to carry their suffering, another person is ready to step in and bear it with them.
So, do we rise together as a community, embrace the suffering, and ask the hard questions? Or do we allow the pain to take even more from us?
I choose to ask the hard questions. To not shy away from naming the pain. Because maybe if I can pull together the strength to ask those questions, it can show someone else that there is power in questioning their experience too.
Maybe you have someone in your life who needs you to live with them in their grief. Because of communities like ICN, on the days I don’t feel strong enough, i have friends who push on for me.
My challenge for you is to ask the difficult questions.
Embrace the grief. To keep questioning the pain. And to find others who want to stand with you while you do it. I challenge you to do it not just for your own liberation.
Do it for the person who isn’t strong enough today to do it for themselves.
Because there will always be that person.
I encourage you to take advantage of the community you are surrounded by for the next several days. Take advantage of opportunities to open discussions and ask questions.
Wrestle with the hard issues together,
feel the pain deeply,
and continue supporting one another.
Approach every issue with the humility to recognize that we will not always have answers to every question.
But
remember
that holding questions together can be even more powerful than pretending to have all the answers.
Thank You
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