By Carol Fredrek, Registered Psychologist
Originally I wanted to write a blog post about neurological conditions which would have included spinal cord injury, stroke, multiple sclerosis (MS) and Parkinson’s. This became quite overwhelming as each have their own etiology, treatment, emotional and physical adjustments, supports and resources. It would not have given justice to each of these challenging, unique and courageous stories.
First, I had to be clear what the objective was for writing a blog post about neurological conditions. It was to increase awareness, understanding and tell a story of authenticity, vulnerability and courage. Everyone has a story about courage. A story about how you faced those things that would have been easier in the short term to push away such as feelings, change, illness or adversity. So often we search for ways to do things better, a list of coping skills, a recipe of some sort but we eventually find that there isn’t one. It is important to listen to those individual stories and take from each story what resonates most for us.
Second, whose story will I tell? This was a bit of a dilemma as I was diagnosed with MS in 1993 and have moved through my own journey but I didn’t want to write about me. I wanted to tell the story of a woman who I greatly admire and not because of the type of MS she has or where she is with her MS today but her honesty, perseverance and desire for joy and happiness in her life. She was diagnosed with MS in 2002 and has her own story which I have been given permission to tell.
As for many people with MS it can be a very long process to get a definitive diagnosis. This time of waiting can be excruciatingly difficult as it was for Barb. She visited a Chiropractor and then was referred to a Neurologist. She had numbing and tingling. She was numb from the waist down. And then it just went away. Does this sound familiar?
Then she developed blurred vision and saw an Opthamologist. Guess what she had? Optic Neuritis. She was then determined to find out why this would happen as no one could tell her. She googled and found the MS Society website. A source that gave her a lot more information. She was then referred back to a Neurologist, had an MRI and was diagnosed.
“You never really believe it until you hear it from someone else.”
“This isn’t happening” she told herself.
She cried and cried in the doctor’s office and those tears continued as she went into her car. “I wish someone was with me” never expecting this diagnosis. Her worst nightmare was “I will be in a wheelchair”.
She told me that she did have to change most everything in her life. She was just in a new relationship of 6 months and was going to take an EMT course at SAIT. She found herself in a deep depression. What would you expect? This is the time to be talking with others. This is a pivotal time to reach out for support and probably the most difficult as you feel so vulnerable.
Her symptoms have remained invisible as it is for so many people with MS but others tend to forget she has MS. She doesn’t have a walker, wheelchair or cane. However, she feels a lot of pain and fatigue which comes and goes depending on the week, day or even time of day. She works hard at not feeling sorry for herself and doesn’t want others to have pity on her.
Here are some of the more powerful statements that came up in the interview with Barb. They resonated with me and perhaps will with you:
“Unless you live with it you don’t know how it is.”
“They try to understand. I don’t share it all the time.”
“I don’t want to walk around with a black cloud.”
Her energy for life is so apparent in the words that follow:
“There is stuff that I want to do. We love traveling. I want to do things with my daughter.”
“I have my daughter, husband, my family, friends and myself.MS is not going to hold me back.”
“I have a creative career that I love.”
She talked to me about the good things that living with MS has brought her. “It’s been a life changer. It has changed my life completely. In good ways and bad ways.”
“It changed the path of my health, my career and my relationships and on so many different levels.”
“It brought out parts of me that I never really knew were there.”
“I discovered what matters.”
She went skiing with her daughter last year. She goes to the gym, cycles, travels and hikes but often they hurt. There is a recovery period but she says “I’m a fighter. I will not let MS win.”
This doesn’t mean that she may some day not be able to go to the gym, cycle or hike but she won’t stop living. What has been vital for her is the support she has from family, friends, her husband and the MS Society. She cycles in the Bike Tour for the MS Society of Canada.
What has helped Barb is to:
1. Educate Herself: Learn as much as you can. Only look on reliable sites. The others scared me. Call the MS
Society. They can guide you in the right direction.
2. Prepare Herself: Be sure to make plans. Look ahead.
3. Family & Friends: They need to be compassionate and try to understand. They need to “listen”.
4. Support: A support system is critical. People you know who can be there for you.
Carol Fredrek is a Registered Psychologist that specializes in the areas of women’s issues, life transitions, chronic illness, body image, disordered eating, trauma, depression and anxiety. If you feel that you would like to explore therapy you can call me for a FREE 30 MINUTE PHONE CONSULTATION at (403) 249-9337 or email me at firstname.lastname@example.org
I encourage you to start a conversation by posting your comments below. We all have a story to tell.