Why not you?

Photo courtesy of Frances Gunn via Unsplash.com

Imagine, if you will, knowing that you will lose control of your body, starting with your feet, working up your legs, to your arms and hands, your bladder, your bowels, your ability to feed yourself, your voice ….

Imagine getting this news at the age of 15. You want your independence. You want to be kissed. Might you feel bitter, angry or frightened? Each ability goes slowly, leaving you time to mourn it. And each loss is permanent.

It could be you. Why not you? Or maybe it will be the person you fall in love with or your child or your best friend. But if it is you, you’ll become entirely dependent on other people to do the things you took for granted. Even your shits are scheduled.

You are not yet forty years of age but you listen to the news about assisted dying and consider your options.

Did I mention that there is still pain?

Just Jen will put you there.

You see disabled people all the time. Do you look away? Does it frighten you?

Do you think that at 15 you’d keep the diagnosis mostly to yourself, even though others can see the changes beginning in you? Would you barrel ahead with university anyway, thousands of miles from your family, ask people out on dates, travel to Europe, volunteer and propose to the person you love?

How about this: do you think you could write a book by dictating it out loud to another person who cannot always make out your speech, so you have to repeat yourself? Word by word, sentence by sentence. And let’s not forget all the editing to come.

But it’s not you. This is Jen Powley, whose achievements would be remarkable even if she weren’t a quadriplegic.

She has no use for pity. That’s not what this is about. What she wants is for people to understand. Her book is raw and honest. It is trimmed of all fat. You will get a startling glimpse into her world. You will look at life in a different way and appreciate your abilities and not look away from that person in a motorized wheelchair.

Her book opens with this quote:

“Any coward can fight a battle when he’s sure of winning; but give me a man with the pluck to fight when he’s sure of losing.” — George Eliot

Just Jen, Thriving through Multiple Sclerosis is available as a paperback and an ebook.

Just Jen : Photo Essay

In 2014, her sister, Nicole, asked me to take some photos that documented Jen’s daily life. She wanted honest images.

I spent time as a fly-on-the-wall as she went about her routine. The following is a handful from my time with Jen and her merry band of care-givers, friends and family. Some of these photos appear in the book as well.

Jen waiting in her van for her assistant to drive her to an appointment.

Transferring from her chair to the bed for Conductive Education.

Part of Conductive Education is to practise speaking . Jen is reading Leonard Cohen song lyrics.

Being transferred into bed by her assistant.

The VON visits regularly.

Meeting with her mentor, Lorri Neilsen Glenn, about editing notes for the memoir. As her MS has progressed she’s begun to conduct more meetings from bed.

Getting her hair washed in bed.

Choosing clothes for the next day.

Date night with her fiancee, Tom.

Jen has a killer sense of humour and spends a lot of time finding the funny in things. She is known for her zingers. Maybe this is one of her best weapons in dealing with MS as well as reshaping how people think of disabled people. She catches them off-guard.

She has a very active social life and gets out to local galleries & shows with friends a lot more than I do. This is Jen with her sister, Candice, brother-in-law Matt, and fiancee at an art gallery.

Jen and her mother, Barb, at the Halifax Central Library.

Jen with her mother and sister, Nicole.

Barb brushing her daughter’s hair.

One of my favourite images of Jen and Tom together. We were heading back to her vehicle from visiting an art exhibit.

Just Jen : Launch

The book launch at the Halifax Central Library.

Jen addresses the crowd with the help of Tom. She speaks into the microphone and then Tom repeats what she has said. Looking on is her publisher.

The room holds about 200 people; an impressive turnout for a first book. Halifax Central Library.

She had a few zingers for the audience.

Jen & Tom. What can I say? May you find this kind of love in your life.

Just Jen

Thank you for reading. Please share. Jen’s hope is to get this book out there for people diagnosed with Multiple Sclerosis. There is a need for more books of its kind.

Just Jen