I have always believed that I did better in a crisis. Thus, I rarely planned ahead, and magically, it all seemed to work out -- it was a mystery. But, 2015 threw me under a bus and now I have to plan ahead, or by mid-day, I collapse. Let me explain . . .
Bump #1: Vertigo
In January of 2015, I started experiencing vertigo, which for me meant a constant state of feeling out of balance. I shrugged it off as a possible ear infection and after a course of steroids it went away - sort of. Enough for me to keep moving at least, for I was scheduled to go to Lincoln, New Hampshire to install some artistic ice for the Ice Castle.
This is the Ice Wall that I built at the New Hampshire Ice Castle while having bouts of vertigo.
Bump #2: More Worry
It was also January when a dear family member (to protect her privacy I will call her Sarah) was diagnosed with a mysterious autoimmune disease that was affecting her kidney function. It was a scary time, but Sarah handled it with grace. Fortunately, doctors were found that knew about this disease and the best ways to handle it, so we put her in their hands. As for me, it took a fall down the stairs to remind me that I should really find out what was wrong with me.
Bump #3: The Truth is Discovered
On March 30, 2015, I woke up to find that the left side of my face was numb and tingly like it had fallen asleep. I decided to go the the Emergency Room where they immediately gave me an MRI and told me that I had a benign brain tumor called an Acoustic Neuroma. "Here's a list of doctors that are good in the area - good luck - bye." OK, now what?
Shining Moment #1 and Bump #4: Tom and Discovering a Problem
One of the best things that every happened to me was that I married Tom. That would ring true once again as we were faced with this frightening new dilemma. One of Tom's true gifts is his ability to research - anything. So, he dug in and started finding out everything he could about Acoustic Neuromas (AN), also called Vestibular Schwannomas. He discovered that they typically are slow growing tumors that can wreck havoc in a person's life, but will rarely kill them. Bonus! But, it would turn out that I had an unusual type of AN. Mine was growing fast . . .
Shining Moment #2: Community
Two days after we were told about the tumor, I decided that this was just too big to handle by ourselves. I created a super secret Facebook page about my tumor called "Follow the Bubbles: a peaceful path to the annihilation of a brain tumor". I think my idea at the time was I needed to throw myself on the universe and maybe, just maybe an answer would materialize. I wrote, "When my dad was teaching me how to windsurf many years ago, he told me that I ever fell into the water and became disoriented, that all I needed to do was follow the bubbles to the surface. The bubbles don't always go straight up, but will go towards air, so while trapped under the sail, you might need to go sideways first and then up to the air. So . . . as I navigate these crazy brain tumor waters, I am going to follow the bubbles . . .
What are the bubbles? My thoughts, your thoughts, our feelings and instincts. All are good. All are relevant."
I have to tell you that what happened after that was close to miraculous. Everyone that Tom and I invited to the page chimed in with well wishes and love, but also with help. Because we opened ourselves up, we were offered names of doctors and advise for how to find our way. Meals and hugs and calming visits became the norm. To say that I am grateful for all this would be a gross understatement. There are no words for how I feel about the beautiful and diverse community that supported both Tom and me as we went through this whole crazy process.
Huge Bump #5: My Mom is Gone
We had no idea how fast this cancer would take her. Mercifully, it was just 9 days after this picture was taken that my mother passed peacefully into immortal summer surrounded by her loving family.
In April, my mother decided to have surgery on her foot to relieve chronic pain. Little did anyone, and apparently that included her primary doctor, know that she had cancer growing inside her that would use this moment of weakness to strike. We were told her cancer was terminal the same day Tom and I met with the doctors at the Mayo Clinic for my issues. It's hard for me to describe the sadness of that moment in time. All I could think about was that my mother was dying. She was the woman who taught me by example how to be strong, creative, loving and kind. She taught me how to tie my shoes and how to make an omelet. She taught me how to be. The fact that at the same time Sarah was suffering and I was increasingly having more difficulties became harder to see. When my mother died in hospice a week later, I began a confusing journey through my grief that was numbed by fear.
Bump #6: Symptoms Increase
This MRI shows how the tumor has encroached on the brain stem and is causing the surrounding brain tissue to swell.
After my mother died, I woke up to realize I needed to focus on my situation as it was becoming more and more obvious that I was in trouble. Given Tom's research, we knew what symptoms of increasing tumor size might include. Thus when the numbness around my mouth spread to include the entire left side of my face, severe pain to my teeth and tongue, as well as the fact that my left eye would not close all the way, I began to wonder what was happening. We contacted each of the neurosurgeons we were interviewing if I should get another MRI. All but one said, No, these symptoms are occurring because of stress - go get a massage! Really?
Fortunately, one doctor listened and agreed that the speed at which I was experiencing new symptoms would warrant a new MRI. Thank goodness, because they discovered that my tumor had grown exponentially. It was pressing very hard on my brain stem and the surrounding brain tissue which was causing it to swell. That last part is the most concerning and explained why I was having trouble walking. A week later, just 13 days after my mother died, I had an 8 hour brain surgery to remove the tumor.
Shining moment #3: Great Doctors!
A huge thank you to Dr. Eric Nussbaum and Dr. Christopher Hilton for listening to me and for being incredibly skilled surgeons. The most miraculous part, besides being alive and that I kept some hearing on my left side, was that the pain was gone! The feeling that I had a nail in each tooth and that the side of my tongue felt like someone had taken a cheese grater to it was just GONE. I was unbelievably happy!
Bump #7: Recovery and Refocus
Having an "assault to one's brain" presents many challenges, but the primary one for me was that I could not focus. I was knocking off all the other issues, like balancing so I could walk, swallowing, depression, brain fog and pain control. I put the pedal to the metal and started walking every day and got out on a recumbent tricycle loaned to me by new friends Mary Arneson and Dale Hammerschmidt. This activity would help me combat many of these issues, but I could not control that fact that I could not read! I could not focus on anything for more than 15 minutes before my head would start to throb and a headache would swallow me. So, I finally put away the dream of writing my book about ice luminaries that I had planned to finish that summer. As disappointing as it was, I needed to take the time to recover. I really did not have a choice.
Shining Moment #4: Sarah is in Remission
One of my great sadnesses in the year is that I could not help more with Sarah's issues. My main job in life is that make sure that she is happy and healthy and I was not able to do that. But FORTUNATELY, the doctors Tom found were amazing and put her on a track that defied all logic. The medicine she was on presented great challenges, but she would not let it get to her and now she is doing really well and on her way back to a sense of normalcy!
Bump #8 and Shining Moment #5: Non-Winter and Wonder
For anyone that loves winter, like we do, it was another hit to have a beginning to winter that was not really winter. Without cold weather and snow, what's a person to do? Really? It is especially painful when your business relies on cold weather to flourish. Would anyone be thinking about making Globe Ice Lanterns? Yes, they were. It was amazing how many people wrote of their frustrations with the warm weather and they were bursting with anticipation for a chance to get outside and play in the cold. It was very heartwarming to know of all the people out there that had started new traditions based on the beauty and magic of Globe Ice Lanterns. We also received word that a beautiful book called The Reindeer Wish written by local author Lori Evert gave Globe Ice Lanterns a cameo appearance. Please make sure to check it out along with the other Wish Books including The Christmas Wish.
Shining Moment #6: Renewal
It is a bittersweet moment to sit on the edge of a new year and look back at the grief on one hand while edging forward to the possibilities of tomorrow and beyond. This will be a year of firsts that will not feel good. A big one was that we celebrated our first holiday season without my mother. It was challenging and beautiful to see us all together honoring her memory with an empty spot at the table. I love my family and know that we will carry on -- that alone will honor her memory more than anything.
So what is my big plan for 2016? First step: get back on track for my book, Ice Luminary Magic. Now that winter is finally cooperating, I can get out there and play with ice and candles. But, because I still get tired if I overdo, I am forced to plan my time outside. Yesterday I installed some ice glass pools in my front yard. I did not fill them with water right away. Instead, I told myself it was enough that I have the pools ready and will do more tomorrow. This is big for me. Last year, I would have installed pools, filled them and put out 50 globes all in one day. That day is gone for now. I have to be careful or I will fall over - literally (I lose my balance when tired or dehydrated). Even though I have my own tiny business to run, sometimes life happenings just give us no choice but to slow down.
Why share all this, especially in a Wintercraft blog? Mostly, as I am filled with gratitude for the sustaining power of the support I received in my "Follow the Bubbles" group throughout the year. Maybe subconsciously I'm hoping that throwing myself to the Wintercraft universe will work a similar magic? Who knows? I do know that the joy I've experienced seeing others discover the beauty of ice lanterns over these last 6 years since Wintercraft was formed is very fulfilling. I never really intended to create a business - I just had a passion that began to run wild.
So, let's start again. Given my limitations, what is my plan for 2016? It is to make my book something my mother would have shown to all her friends with the glow of pride shining from her eyes . . . simple as that. Wish me luck and hopefully the book will be ready by later this year!
Enjoy the Glow!
- Jennifer Shea Hedberg, Wintercraft Founder
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