Dream Realized

What a whirlwind!  June 4 – 7 was the Fifth World Parkinson’s Congress in Kyoto, Japan. Nearly 3,000 people gathered to hear about the latest research about Parkinson’s disease and hear from some of us living with the disease.  I was incredibly honored to present with my friend, Nancy Peate, a talk about Resilience. A robust group of us from Portland attended the conference.  I will never forget looking out into the audience and seeing so many familiar faces in a county thousands of miles from home.

My dream of presenting to an international audience was realized.

We shared our stories and a how we live with a progressive, incurable brain disease and how we find gratitude and joy. No big secrets were revealed but we shared a philosophy that is working for us and others were eager to hear our message.  It felt powerful to speak the words to people from around the world.fullsizeoutput_2c26

It was a remarkable feeling to have people seek us out.  Some had seen a video we submitted to the Congress and wanted to learn more about our stories. One couple came to our talk then attended our round table to learn more about our stories.  Another woman from Australia had been a midwife and whose story is similar to mine.  We became fast friends, are keeping in touch and making plans for 2022.

Nancy and I also had the chance to host World Café discussions as well as a round table. I found these to be a highlight of the conference.  To have discussions in small groups about topics relevant to us with others who share our diagnosis and many of our challenges felt powerful.  We discussed questions pertinent to navigating life with a diagnosis and how we might change our dialogue with ourselves, our communities and our health care providers.

Taking full advantage of our travels, we explored Kyoto.  I found the city to be filled with kind and extremely polite people.  It is also a city full of spiritual nooks to reflect and worship.  I have visited no less than 10 shrines and temples.  A group of us hiked a mountain under thousands of vermillion torii gates. We climbed over 50 stories of stairs and roughly 4.5 miles in heat and humidity.  It was a long and challenging hike which allowed for some introspective moments.

IMG_7258I realized that I am deeply grateful. Grateful to be alive, to have friends and family that love me.  I am grateful that I have had the opportunity to meet so many strong people from around the world.  I am grateful that I have a message that others share.

Another reflection was about one of the lectures I attended at the congress.  I have been needing to slow my pace down and take inventory of all the things I am saying “yes” to.  The speaker suggested making a TO BE list, not a TO DO list.  I loved this.  Like so many of us, I have spent a lifetime with to do lists.  My new goal is…

to BE more and to DO less.

It is necessary with Parkinson’s to listen to my body’s need for rest and balance it with intensive exercise.  Many days this may be enough, just being is enough.

 

My time in this beautiful city afforded many moments of stillness spent sketching or observing others.  Stillness, being, is important and I will work to find more of this in my everyday life at home.  If so many in the Japanese culture can integrate worship and reflection into their everyday lives, certainly this Western woman can find some ways to find more stillness.

I also know that I will continue to work on my message.  We hope to be invited again to the 6thWorld Parkinson’s Congress in Barcelona in June 2022. My partner and I may even start drafting a book about our experiences.

Who knows what the future holds, but the now is full of wonder and gratitude.

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Door Knobs

 

I have always prided myself in having good balance and above average coordination.  At one point in elementary school I was an avid gymnast moving with ease on the balance beam and confidently tumbling through my floor routine. Believe it or not,  I can still do a halfway decent cartwheel (I only attempt this on cushy green grass or soft gym mats).

I am, however, having a tough time making it with any grace through door ways.  I currently have several bruises on my forearms as a result of earnest attempts to navigate my home.  I can often make it through unscathed, but nearly as often I find my arm clashing with the door knobs.  I realized that it had become a pattern this week as I had the occasion to wear a short sleeve shirt.  I glanced down at my arms after the latest collision to see three bruises all in unsightly stages of healing. ARG!

We live in an old home built in 1912 in a historic neighborhood in Portland, Oregon.  We don’t have an open floor plan, so I encounter doorways at every turn.  I am grateful that we have a number of pocket doors without knobs but most of our doors sport the lovely and solid brass hardware and I have no intention of removing them. I need to learn to be in harmony with the protuberances.

Proprioception is the ability to perceive where ones’ body is in space.  For those of us with Parksinson’s Disease, this perception may be altered.  Apparently, my perception of where I am in space seems to be about 4 inches off. The depth of a door knob.  Thus, I am sporting bi-lateral evidence of my listing proprioception.

It is a deeply humbling realization.

It is another opportunity to accept that my body is changing.

It is an indication that the challenges of this disease are progressing.

The truth is, I may not move with grace or ease again.

The bruises are evidence and they serve as a reminder that I am still here, still navigating doorways, still moving, still feeling, and still alive.

I may be humbled, I may be listing, I may be bruised

but I am not broken by Parkinson’s Disease.

 

 

Let’s Party

I have always loved a celebration. Birthday parties, graduations, baby showers, weddings, even the opportunity to celebrate the life of someone who is no longer alive holds great value to me. I love the falderal, the ceremony, the cake, the wrapping paper in beautiful patterns, balloons in a rainbow of colors.  As a child, I loved picking out just the right gift for friends and watching them open it. I’d carefully select and wrap it as I cherished the celebration of their friendship. I would carefully archive invitations and favors in my scrapbook.

It is for all these reasons, I decided to throw MYSELF a party.  A BIG party…. With a band, fine china, colorful balloons, themed décor, lots of fresh roses and lavender, outdoor games, and hand dyed fabrics.

The past several years have been full of major transitions.  I left my career, our children left our home, both my parents passed away, I was diagnosed with Parkinson’s disease and I turned 50. I have mourned many losses.  With any transition, there is loss, then healing, and ultimately, growth.  This blog has been a part of my healing and my growth. The party was a celebration of the reinvention of my life after my midwifery career and of me in mid-life.

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I called the event Kat – Act 2.  It was to mark my belated 50thbirthday and retirement from my Midwifery career. My Nurse Midwife-Nurse Practitoner license will expire on my birthday this year 11/23/2018. It marks a big step in letting go for me.  My identity has been intertwined in my career.  But as my wonderful husband noted, “Fifty-one is too young to be retired, this is merely your second act.” Sage words and advice.

The six months leading up the “the event” was an integral part of the celebrating for me.  For the first time that I can remember, I planned an event solely with ME in mind.  Our wedding, 29 years ago, was wonderful AND it was not just about me.  It was the merging of two families, two lives. The planning and the budget involved many.

Kat – Act 2 was an event and was just about ME.  I love purple, and gardens, and flowers, and music.  I love my family and friends – my village. So that’s what we planned for.

When we married, we picked out a very simple, affordable and practical china.  All white, to go with every occasion and not “too floral” and “too feminine.”  We have used it for nearly every holiday since we married in 1990.  I love the history and the way we have used it.  I told my husband, however, that one day when our children where grown I would get a feminine floral pattern that I would enjoy and eat off of daily.

Leading up to the party this year, I collected over 130 floral china plates from all over Oregon in floral patterns in my favorite colors – purple, blue and pink.  All used by others for events. Many of them also came with stories. Many of the people I bought from shared that the plates where from their childhoods. I loved the stories and the way the mix of patterns looked; and my party guests enjoyed a lovely meal off of beautiful, new to me, china.

I enjoyed making decorations and space planning equally as much as collecting the dinnerware.  Earlier in the year I had the opportunity to decorate for a fundraising gala with a garden party theme.  Much of the décor we used came from my garden and we then added to them for my soiree. I was able to change it up to make it my own. Lots of purple and pink, fresh lavender, tea cups, roses,  and bird cages.  We hand pressed fresh juice to serve from our homegrown vines.

TO make the event even more meaningful, my mom was there.  Not in the flesh, but in spirit.  A year before the party, months before it was even a thought, I had purchased an engraved brick to be placed at our neighborhood community center.  The plan was that they would install them in the summer months when the weather was amenable.  I had mostly forgotten about my order until after I booked the same community center for the party.  The week before the big event, I sat and watched as contractors etched my mum’s brick.  It was propitious.

 

Then came creating and sending out lovely paper invitations. The offers of help and “yes, I’ll be there’s” flooded in.  I was delighted but mostly HONORED that so many people offered help and planned to come. My brothers and step – mum from out of state booked flights.  Friends from near far planned trips to Portland.  Months later, I am still  HUMBLED by it all.

I bought an outfit –  a purple tulle skirt that I could wear with my cowboy boots and jean jacket.  Why?  Because I wanted to.  Purple is my favorite color and tulle because it feels FUN and FREE and the boots always remind me of my dad.

The day arrived and it was perfect. The house full of loved ones and helpers.  All here for ME.  I had enjoyed the planning so much that it was easy to forget that the party was still to come.

Close to 140 people attended.

I DANCED and CELEBRATED with the love of my life;

my children (minus one who is in the Peace Corps in Lesotho South Africa);

my brothers and their families;

nieces and nephews;

my step-mum;

friends from the many towns I grew up in;

cousins, aunts, uncles;

midwives, nurses, and staff I worked with;

children I delivered;

roller derby friends;

former students;

boxing buddies;

 and art friends.

I wore a tiara, given to me for my day.

I felt royal,

I felt loved and celebrated.

It was a memorable way to usher in “My Act 2.”

I am deeply grateful and am truly blessed.

 

Until the next celebration…

 

I am Kat – a retired midwife

 

who boxes, blogs, speaks, and makes art.

 

Fight! – My speech opening the Davis Phinney Victory Summit in Portland, OR 2018

Hello everyone. It is my honor to open the 2018 Davis Phinney Victory Summit.

My name is Kat Hill and I was diagnosed with PD almost 3 years ago at the age of 48. After my diagnosis, I retired from my demanding career as a nurse-midwife after delivering over 800 babies. I then realized I had a huge choice to make. I could sit in my house and hide, watch tv, control everything around me to minimize my symptoms.

OR………

I could get up and FIGHT. I chose to FIGHT. I will not be defined by any disease.

Too many in our world today have been lost to isolation and despair. Our news headlines are riddled with the stories. Too many feel alone. We need not turn to desperate measures to find solace. We are all connected. Let us turn to each other, to our loved ones, to our community for help for connection. No one must be in this fight alone. Our presence here today is evidence of just that. We are community.

Today is an opportunity to find ways to enhance our lives, our spirits and our abilities to thrive despite adversity. Will you be focused on the fact that we do not yet have a cure for Parkinson’s, or will you celebrate your victories? The choice is yours to make.

My pivotal decision to fight included reaching out to find the PD Rebels and Parkinson’s Resources of Oregon or PRO. Before I was diagnosed, I had never met anyone else with Young Onset Parkinson’s. Now, with the help of PRO, I co -facilitate a support group. Our Young onset happy hour group meets monthly in a local pub. We have found our community with similar stories and philosophies. We find power in our numbers. We share our fight, our laughter and sometimes our tears. Many of us even sweat together at our boxing boot camp at 6:30 am.

I am also fighting to re-define myself. Who am I if not a midwife, delivering babies? Well, I AM a fighter, a blogger, a speaker and an artist. I am a wife, a mother and a sister. I am living a rich and engaged life. I study resilience and along with a fellow fighter, speak to groups.

I am also serving my community. I volunteer for fundraising events, teach watercolor at an assisted living facility, and although I am no longer delivering babies, I continue to be a resource for my family, friends and neighbors.

Today is about victory. We have achieved it simply by showing up. Let us connect with one another other, listen to the knowledgeable line up of speakers and be lifted up by being together.

We must fight. We must move. We must engage. For those of you feeling isolated, we are here for you. Do not despair. Find your people here. You ARE NOT ALONE.

Thank you.

 

 

 

Flowers and Daisies

The youngest of our three children, Sawyer, had just turned eight when he started loosing weight, complaining of stomach aches and feeling exhausted. We knew he had allergies and had been checking in with his pediatrician. At a follow up visit she checked his urine, then did a finger stick for blood and sent us directly to the hospital.

Sawyer was diagnosed with Type 1 Diabetes and life as we knew it was forever changed.

As a family we learned how to count every carbohydrate, calculate carb to insulin ratios and how to stick a finger to test Sawyer’s CBG (capillary blood glucose). The days blurred with 5-8 tests followed by insulin injections into his arm/leg/abdomen. His fingers soon became calloused from so many finger sticks, his body bruised by the injections. As his mother I begged the universe to let us trade places. He deserved a healthy carefree childhood.

We soon fell into a routine of functioning as Sawyer’s pancreas, working full time jobs and encouraging our children to live active and fully engaged lives. This meant academics, athletics, scouts, music and work for our eldest. My husband and I juggled blood sugar testing, insulin dosing, swim meets, running a small business and keeping a busy private midwifery practice thriving. We kept up this pace for the first year of Sawyer’s diagnosis.

Ken and I also realized that chronic illness management was financially draining. It was incredibly stressful! Sawyer’s hospitalization totaled more than $45,000.00 of which, we were responsible for 20%. We were also shocked and worried about the costs for insulin and supplies totaling more than $600.00/month. We were ill prepared for the increased financial drain of keeping our son alive and we had good insurance. Ken and I would look at each other and ask “How the f#$@ are we going to pay for this?”

I told myself, “At least I am a health care professional and know about the disease,” and even, “I was trained for this.” No one can ever train you to watch your child endure the management of a lifelong chronic disease and the stress that it puts on a family. I felt the drain of feeling very responsible for Sawyer’s disease management and his response to his “new normal” life. I carried a pager for my work and for Sawyer. My husband, Ken, and I added new codes to indicate he needed urgent (911) or non-urgent (411) diabetes information from me. I was NEVER without my pager. There were moments I would be attending a birth and I needed the nurses to answer my 411 page and relay information to Ken for me. It was multitasking on steroids.

I soon learned that there might be limits to being a working mum. I was physically and emotionally drained but felt the need to just keep moving. Taking one minute then the next, looking long term was terrifying. I put one foot in front of the other for if I stopped I feared collapse.

Our family was learning about survival and resilience. Resilience is defined as the ability to thrive despite adversity.

Drug companies are eager to tell us about illness and that many diseases affect your immune system. We used to play the game of “what are they selling us?” when commercials came onto the TV. As a parent, I told myself, “if we are going to have the TV on, maybe we can add in a little education.” We also learned that diabetes will compromise one’s immune system. Sawyer worried about every sniffle. Honestly, we all did at first. Illness changes how much insulin one needs and can be life threatening to a newly diagnosed diabetic. This was scary stuff and it was hard not to let the fear completely envelop our existence. Our family was learning how to define Sawyer’s disease. Each time he survived the usual childhood ills, we cheered on his body’s inherent strength and resiliency, his immune system. We often still refer to him as “the Diabetic Wonder.”

Sawyer learned how he would co-exist with a chronic disease. As with so much in life, he had choices. He could choose to be known by and defined by his disease OR he could focus first on all of his other wonderful qualities (quirky sense of humor, award winning pinewood derby car, soccer, math prowess). I am grateful he chose the latter.

Several months into the diagnosis Sawyer stated matter-of-factly, “Mom, you give horrible injections!”

“What? I am a trained professional?” I boasted.

“I want to give my own shots,” he quipped.

Really? Was it all right to let an eight year old do this? Ken, Sawyer and I discussed it and that evening he learned how to give himself shots. An adult would still be responsible for insulin/carb calculation and drawing up of the insulin, he would administer the injections. From that day forward, we only gave injections if he needed one in the middle of the night while sleeping.

One day we were going through the process and I noticed he seemed to be mumbling to himself a bit before injecting his insulin. It looked like he was coaching himself. With tears in my eyes, I asked if he was scarred about it hurting. After all his abdomen and thighs were always covered in bruises. Needles hurt. After finishing his injection, he turned to me and held my hands. He looked sympathetically into my teary eyes and said, “Don’t worry Mama, all I have to do is think about flowers and daisies and it is all ok.” His sage strategy immediately allayed my worries and was a powerful message of his strength and of his resilience.

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It has been over 13 years since Sawyer’s diagnosis. We have learned a great deal about resilience as a family. Whether one has diabetes, Parkinson’s disease, cancer, crooked teeth or a bad hair day we have a choice about how we look at it. Those challenges can define us, or we can take a deep breath, think of “flowers and daisies” then put one foot in front of the other.