AS PUBLISHED IN THE ECONOMIST AND SUN
When it comes to health care, your doctor isn’t the only one is charge.
You, the patient, are in as much control as your doctor.
That is the message behind former health care professional Melissa Nichols’ first book, Day by Day.
The book started out as a journal of sorts, helping the Markham resident keep the days straight while re-learning how to perform basic functions, such as standing and walking.
In the fall of 2011, Ms Nichols, then 28, started to complain about headaches and blurry vision. She was told headaches were common when the seasons change.
She knew there was something wrong and sought a second opinion. She was then referred to an optometrist.
“I went to see the optometrist and his face went white,” Ms Nichols said.
She was told to go to the hospital because her optical nerves were inflamed. She went to the hospital and was told she required emergency surgery to remove a blockage at the back of her head.
Following surgery, she learned it was a brain tumour.
She spent two weeks in the hospital recovering, followed by two weeks in a rehab centre where she required a wheelchair and had to re-learn walking.
“Writing became very therapeutic for me,” Ms Nichols said. “Writing down what happened on this day helped me keep the days straight. I was very vulnerable and confused, so writing was just for me.”
What started as a collection of dates and point-form notes morphed into a story about the instant transformation from a healthy go-getter to a dependent patient on the road to recovery.
Initially, the book was intended for her family, but her sister convinced Ms Nichols to try to have it published.
Through Kickstarter, an online funding forum for creative projects, Ms Nichols has raised more than $4,200 to help offset the costs of self-publishing.
With a background in health care, her story offers a different perspective for patients on how to be a better patient and how to take control of your health care.
“As the person receiving the care, you should be an active member in the care plan,” Ms Nichols said. “You have a meeting with the doctor. Not an appointment.”
A meeting implies dialogue from both sides, while a doctor’s appointment insinuates the doctor talking to you not with you, she added.
Another tip is to start a pain journal and write notes on how you’re feeling. Whenever you have a question, write it down. You could also type up the notes to give to your doctor.
“People always say, they don’t want to take up too much of the doctor’s time,” Ms Nichols said. “Asking questions is not a waste of time. When you go into the doctor’s office, you always forget something. So write it down. You want to leave the office feeling like you understand what the doctor said.”
When it comes to friends and family, the best advice is to educate those around you on your particular disease.
People want to know what’s going because they care, Ms Nichols said. But they don’t know what to say and instead ask, ‘What did the doctor say?’
“As someone who went through it, you read it and feel so vulnerable, so naked. How do you answer that?” she said. “I don’t want to talk about that. I want to talk about all the shallow things we used to talk about.”
That’s where education comes in. Educate friends and family on the effects of the disease, including how it will affect you personally.
She says a phone call is more meaningful than a text message.
“Someone messages you and asks, ‘How are you?’ and you respond ‘Fine’,” Ms Nichols said. “That person doesn’t know if you are crying or not. I would rather get encouragement texts without a question attached.”
She also advises patients not to feel ashamed when asking for help.
“The best support is the practical support,” she said. “Ego has nothing to do with asking for a ride to your medical appointment or asking a friend to fax or mail something for you.”
The Day by Day Kickstarter campaign ends tomorrow at 3:45 p.m.
For more information or to donate to Ms Nichols’ Kickstarter campaign, visit melissanichols.ca