“Generations” A Walking Gallery Jacket

 walkingGalleryNatriceholding emanuelawareness

You may have noticed that at the top of my blog there is a painting.  This painting was done by Regina Holiday and it depicts my story.  The painting is on the back of a jacket.  My “Walking Gallery Jacket” – Number 218 – is entitled “Generations”.

I was introduced to Regina (@ReginaHolliday) by another friend on Twitter who felt I should become part of the Gallery. It is a group of people who have their personal Patient and caregiving stories on their backs. I will be grateful always to Lisa Fields (@LisaFieldsPW)  who promoted caring and connections in real life and on Twitter.  Thank you Lisa!

The painting on my back depicts the story of my life and where it took me.  I grew up as the child of a Pentecostal minister and both my parents were very devoted to caring for their congregation.  They encouraged, supported and helped their church family with any and all needs.  It was an example that I was to follow for the rest of my life.  The church in the background of the painting indicates that part of my life.

My first experience with patients was as a “candy-striper.”  In my teens I was a volunteer in a local hospital, handing out reading material, refilling water jugs, adjusting pillows, making conversation, giving a little bit of time to each patient.  It felt good to do that.

My first paying job was as a nurse’s aide at a nursing home in Saskatchewan at the age of 18.  No training needed, everything was explained to you as you did the job.  The pathway I traveled in the painting shares my journey through volunteering, caregiving and right up to the present day of helping care for my granddaughter.

It is a far different job today – over 50 years later.  Now Nurse’s aides or Personal Support Workers as we have become – require a course with a passing mark.  I am proud to say I took that course at age 50 and graduated top of the class. I continued working full time for the next 10 years til I retired from facility work at aged 60.  I am now “retired” but still volunteer and visit those who need some one-on-one time with the Alzheimer Society locally.

In the painting you can see my Mom, who was my example to follow.  She also returned to school as an adult and became a Registered Practical Nurse.  She was so very proud of that title.  She worked well into her 60’s and had a lot of empathy for others.

My first grandchild was born in 1995.  She had a difficult birth and was flown to a large hospital for intensive care.  After many weeks a diagnosis was given.  It was called Partial Trisomy 11;22 – very little information was available.  My daughter began her own search to find other families with children who had the same diagnosis.  This led to a website and support group and a name for the disorder.  It is now named Emanuel Syndrome after Dr. Beverly Emanuel from Philadelphia Hospital for Sick Kids.There are now many families worldwide who have children with this genetic disorder who are connected via this website – Emanuel Syndrome

The people depicted on my jacket are my mom, myself, my daughter and  granddaughter. My daughter Stephanie has also been recognized for her activism and advocacy on behalf of families and their children with Emanuel Syndrome.  Recently she was awarded the Queen Elizabeth Jubilee Medal for the work she has done to connect educate and support families.  I am very proud of her hard work on behalf of the many families and medical professionals  who come to her for input, information and advice.  She also leads a private group on Facebook where families and caregivers can come and find answers, share stories celebrate the highs and find comfort with the difficult times also.

As different “generations” we all did our share to help support and care through the years. As the Walking Gallery jacket shows, our hands are linked “through the generations”.

My story is what drives me.  Be kind to everyone you meet, you have no idea what they are dealing with in their lives. There are hundreds of Walking Gallery jackets, and millions of stories.  Through the artistic talent of Regina, there is a focus on the patient, the family, the need for data, explanations and teamwork to ensure the best patient experience. I am proud to be part of that group.

My best wishes to each of you as you welcome the New Year…Happy 2015 to you all!

Natrice Rese

Advertisements

Patients with Patience

What is a patient?  We all will be one at one time or another.  If you have already needed medical attention and most of us have – you probably came away having learned it takes “Patience” to be a “Patient”.  It isn’t just about waiting time in an office or Emergency area.  It’s about the interaction between patient and provider.

Patients need to be listened to and in return they need to hear what their Doctor advises them.  It’s a “partnership in healthcare”.  Sometimes it’s not balanced  but its a work in progress.  The advice or medication or course of action given to the patient may not always be The answer. Sometimes it takes more than one swing at the bat to get a strike.  For whatever reason – whether a side effect or adverse reaction  – recommendations given by your Doctor may not work as desired.  That is when collaboration and persistence needs to happen.

In the past four years I have been grateful to participate in Tweet chats.  It gives me hope that we are making progress as patients in being heard, being understood and contributing to better care and better patient experience.

A patient is more than a body in a wrap-around gown.  We arrive with a condition, an illness, an injury and often a fear of the unknown.  It can be terrifying. This is not an ordinary day.  Sometimes we get good news and walk out with a huge sigh of relief.  Other times we are told words we never thought we would hear. It is nice when a prescription or a bandage  is all we need…but sometimes the words blood work, x-ray, cat scan MRI etc. begin a whole other patient experience.  Now we need a serious Partnership and answers to questions.

Sometimes the Patient-Doctor relationship is likened to a service provider and a customer.  I feel that there are times when this is true.  However this relationship is not like buying a car, a meal, or a weekend in a fine hotel.  But we still need to feel a connection, a mutual respect and confidence in the person we choose.

We come with a need, we hope to leave feeling better with a plan of action.  Does the doctor or health care professional leave feeling the same way?  I hope so.  I hope they know that we both need each other.

Medical professionals studied their passion to make a difference for others.  Patients are in need of their expertise.  Its a combination that involves both parties. We need a collaborative relationship with those on the other side of the office door.

As we end this year of 2014,  I am encouraged that with each new day there are improvements and changes in the health relationships we form.  Be Patient, but be the Patient – and use your voice to be heard.

Happy Holidays to each of you.  May you find Peace Love and Happiness as you gather with family and friends.