Hands

We use our hands to function well in the world; to put on our clothes, to feed ourselves, to care for those we love.  I have used my hands to help mamas bring their babes into the world. I was honored to work as a midwife “catching” babies for over 15 years. I had a collection of photographs of old weathered hands hung on my office wall.  Hands fascinate me; what stories might hands hold? What special touch were they a part of? Hands of the aged showing their wear intrigue me, drawing me into what stories they hold.  My dream that one day my life, and the work done with my hands, might hold a story worthy of sharing.

After leaving my practice as a midwife, my hands have been busy in new ways– I call this part of my life “Act Two.” In Act Two, they have learned to mix and play with watercolor. They have learned to jab, cross, hook, and upper cut; boxing with the heavy bag, speed bag and mitts. They tend a garden, make jams and can tomatoes; craft wreaths and sew.  They move when delighted or excited by lively conversation. They also shake and are weakened by Parkinson’s Disease. New skills and challenges for a new time of life. I have been learning to acceptance.

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painting in Japan

It is a new issue, a new diagnosis, that I am struggling to accept.   Both hands are now changing as the muscles spasm and do not work with each other.  My fingers, especially the middle fingers, fail to close into a fist.   When I sleep, they might clench and are hard to open when I wake. In the car I often appear to be giving people “the finger” while driving because I can’t curl my fingers around the steering wheel. I am beginning to explore adaptive tools to let me continue to drive.

Dystonia– abnormal contraction of muscles.

Since being diagnosed with Parkinson’s I have been attending boxing classes that use high intensity interval training to provide a workout  which elevates my heart rate  and focuses on balance. We box, jump rope, do push-ups, run stairs, use the treadmill and swing battle ropes. In the last few months, it has been difficult to put on my boxing gloves and punch the bags. Using the jump rope has become nearly impossible because I can’t hold the handles properly. Exercise is a lifeline for those with Parkinson’s disease. This high intensity work out is one of the only things that is proven to help slow the progression of the disease, I consider it my “medicine.” Dystonia is painful and it is becoming more difficult to exercise.

I love my hands and treat them respect and kindness. I soak, stretch and flex. I slather them with essential oils and rich lotions. I get massage and acupuncture as often as I can hoping to make them feel better.

All this care and they do not work as they used to.

I have made a living with my hands. My second act has been empowered by things I CAN DO if my hands work.   I have loved the symbolism of hands and now it is my hands that are the most disabled part of my body.

I understand intellectually that it is the lack of dopamine in my brain that is causing dystonia. Dystonia is a diagnosis separate from Parkinson’s. It can happen to any muscles in the body.  My hands, arms, shoulders and torso are affected.  Many people with Parkinson’s get dystonia in their feet.  It is more common in Young Onset Parkinson’s Disease.  The irony that I have used my hands in my profession, I have learned to paint and to box in retirement and now I am slowly losing the ability to continue is devastating to me.

I do not feel ready for this challenge.

It is only in the last year that I have been more comfortable with my new role, retired midwife and empty nester. How long will I be able to use my hands to paint?

I am not ready to give up the use of my hands.

I am stunned by feeling….. disabled. I am grieving.  I want my function back. When will it stop?  Is this the end of many dreams?

I desperately want to someday cradle grandchildren, to take care of my loved ones, to continue to care for myself into old age.  I want to make baby quilts, teach my grandchildren to paint, build sand ca

stles and crochet.  I am 52 years old and not ready to need help cutting up my food, carrying my cup of tea, getting dressed and driving.

I feel despair. I am trying to continue to keep move my body and use the parts that hurt and don’t work well. I’ve started new medications but, have yet to feel relief. Perhaps they will work soon? Maybe new medicines will be developed? Maybe the cure will be discovered? Hope is a powerful ally. However, the reality is that dystonia is affecting my spirit to feel hopeful.

Pain is a constant partner and a challenge for me – deep aching and prickly hot nerve pain that starts in my hands and radiates up to my shoulder and neck.  Many nights I take a dose of muscle relaxants to help me sleep. I am actively practicing meditation and mindfulness. I work to accept the sensations.  It is a new challenge to not REACT or JUDGE to but to simply BE with the sensations. I work very hard to avoid the dark place of “this will only get worse.”

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I try hard to remember that each day that I wake is an opportunity and I am grateful to be here.  But sometimes, the dark sets in and the waves of grief overtake me.

Today is one of those days.

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.