Former dancer lives moment to moment with rare genetic condition

I walk through the passage of time living “this” life housed in a body which for 59 years has partnered me in a dance of disease ...

By Debra McNie

I walk through the passage of time living “this” life housed in a body which for 59 years has partnered me in a dance of disease with beats of artistry.

The cloth of pain which sharply caresses my body has been with me since I took my first breath.

The journey of a life lived with pain and disease brings with it great responsibility to not squander life but rather honour what is and know without hesitation – only this moment counts. The next moment is opportunity to continue to move forward.

Without the desire to reach for one more moment I may give in to the demands of this ill body.

Moments guided by a clear understanding of the tenacious inner strength needed to define for me what my body will or will not become.

Otherwise I shall certainly parish and become that which my body keeps demanding I become. Diseased!

The fight is great. For hours I am controlled by intense pain matched only by overwhelming fatigue. Fatigue which insures I not leave the house for weeks. I continue to reach for the moment to pass and the next moment to arrive.

Opportunity and hope for me live in the moments of my life and belief the next moment will deliver a waterfall of moments to cleanse and heal this body.

The key to insuring I continue to unlock the door to enter the next moment lies within my beliefs, prayer, meditation, movement/dance, tenacity, hope, Bob, family, friends and community.  I know the strength sent by elders who have walked before me.

In 1992 I was diagnosed with a rare genetic blood disorder called C2 Deficiency.

I was born without the C2 gene which is one of nine factors in the Complimentary System.

These factors produce proteins and enzymes to fight bacterial or viral infections. Lacking the gene causes the inability to fight bacterial infections and manifests a chronic state of inflammation, pain and over all malaise and severe acute states similar to Lupus, the disease of 1,000 faces.

While staging Potato Dreams – an original play I created for The Potato House Sustainable Living Society, which had a successful run in the summer of 2012, I noticed a distinct switch in how I was feeling.

I traveled to Vancouver to see my immunologist and after testing it was discovered that due to C2 Deficiency another gene has been damaged and is not repairable. As a result my body is not producing antibodies.

The decision was made for me to have weekly infusions to put antibodies into my immune system for the very important support needed to fight bacterial infections.  Oct. 26, 2012 on my 59th birthday I started my first infusion.

Since then I have had great difficulties with the weekly infusions which I do at home.  Currently I am in a holding pattern until my immunologist and I can come up with a game plan.

My quality of life has been very poor. Many specialists with various credentials have told me they would never meet another person like me in their career.

The biggest challenge to this disease is one minute I can be fine, active, engaged and moving forward, and within minutes I am thrown into a flare up which for months can render me immobile and housebound.

During the good times I forge ahead and try my best to be a creative active member of society through involvement with the arts and volunteering my skills to the community.

Many people live with chronic or acute illness which is always accompanied by pain and fatigue.

If you have a loved one in your life living moment to moment due to illness, please give an offering of special moments to that person for it makes an amazing difference even if it is only for a moment.

Recently I discovered Feb. 28, 2013 was National Rare Disease Day.

Please visit http://www.rarediseaseday.org/country/ca/canada

It is my hope to connect with others who may have C2 Deficiency.

There is no cure and the only course is treating the symptoms which for me insures I look at modern medicine as well as holistic as both have offered relief.

 

Just Posted

2021 graduate Annaliese Hunt-Owega with Burton Astleford in advance of the Reverse Grad Parade held Saturday, June 12 in Williams Lake. (Angie Mindus photo - Williams Lake Tribune)
Jenna Harvey. (Photo submitted)
RCMP looking for missing woman between 100 Mile House and Williams Lake

Jenna Harvey was last heard from a week ago and claimed to be hitchhiking north

Big Brothers Big Sisters of Williams Lake’s Robert Webster, who helps operate the organization’s Parking Lot Clothing Drive, and Angela Kadar, executive director, collect clothing at BBBSWL’s new, permanent cargo trailer location at the Williams Lake Stampede Grounds infield. BBBSWL will be at the infield parking lot from noon to 1 p.m. every Tuesday until the fall collecting soft goods including men’s, women’s and children’s clothing, outerwear, boots, shoes, hats, mittens, scarves, ties, socks, purses, wallets, bags, bedding, towels and jewellery. Kadar thanked the Williams Lake Stampede Association for being so accommodating and for allowing them to use the space to park the trailer. (Greg Sabatino photo - Williams Lake Tribune)
Big Brothers Big Sisters of Williams Lake Parking Lot Clothing Drive gets new, permanent location

BBBSWL will be at the Stampede infield parking lot from noon to 1 p.m. every Tuesday

Williams Lake Stampeders forward Dylan Richardson thwarts a Quesnel Kangaroos defender as he skates in for a shot on goal during the 2019/20 Central Interior Hockey League season. (Patrick Davies photo - Black Press Media)
Stampeders plan post pandemic return to ice in Williams Lake

The eight-team Central Interior Hockey League includes franchises in Quesnel and Williams Lake

Interior Health’s mobile COVID-19 vaccine clinic will be at the 150 Mile House Fire Department on Wednesday, June 23 for people to receive their first dose of the vaccine. (Monica Lamb-Yorski
Interior Health mobile COVID-19 vaccine clinic slated for 150 Mile House June 23

The clinic is for people who have not received a first dose

Marco Mendicino, Minister of Immigration, Refugees and Citizenship during a press conference in Ottawa on Thursday, May 13, 2021. THE CANADIAN PRESS/Sean Kilpatrick
Canada to welcome 45,000 refugees this year, says immigration minister

Canada plans to increase persons admitted from 23,500 to 45,000 and expedite permanent residency applications

Cannabis bought in British Columbia (Ashley Wadhwani/Black Press Media)
Is it time to start thinking about greener ways to package cannabis?

Packaging suppliers are still figuring eco-friendly and affordable packaging options that fit the mandates of Cannabis Regulations

Emily Steele holds up a collage of her son, 16-year-old Elijah-Iain Beauregard who was stabbed and killed in June 2019, outside of Kelowna Law Courts on June 18. (Aaron Hemens/Capital News)
Kelowna woman who fatally stabbed teen facing up to 1.5 years of jail time

Her jail sentence would be followed by an additional one to 1.5 years of supervision

Cpl. Scott MacLeod and Police Service Dog Jago. Jago was killed in the line of duty on Thursday, June 17. (RCMP)
Abbotsford police, RCMP grieve 4-year-old service dog killed in line of duty

Jago killed by armed suspect during ‘high-risk’ incident in Alberta

The George Road wildfire near Lytton, B.C., has grown to 250 hectares. (BC Wildfire Service)
B.C. drone sighting halts helicopters fighting 250 hectares of wildfire

‘If a drone collides with firefighting aircraft the consequences could be deadly,’ says BC Wildfire Service

A dose of the Pfizer-BioNTech COVID-19 vaccine is pictured at a vaccination site in Vancouver Thursday, March 11, 2021. THE CANADIAN PRESS/Jonathan Hayward
NACI advice to mix vaccines gets varied reaction from AstraZeneca double-dosers

NACI recommends an mRNA vaccine for all Canadians receiving a second dose of a COVID-19 vaccine

A aerial view shows the debris going into Quesnel Lake caused by a tailings pond breach near the town of Likely, B.C., Tuesday, Aug. 5, 2014. THE CANADIAN PRESS/Jonathan Hayward
Updated tailings code after Mount Polley an improvement: B.C. mines auditor

British Columbia’s chief auditor of mines has found changes to the province’s requirements for tailings storage facilities

A North Vancouver man was arrested Friday and three police officers were injured after a 10-person broke out at English Bay on June 19, 2021. (Youtube/Screen grab)
Man arrested, 3 police injured during 10-person brawl at Vancouver beach

The arrest was captured on video by bystanders, many of whom heckled the officers as they struggled with the handcuffed man

Most Read