Thirty-One Faces of Hope: Deborah Wallace
The lupus community includes people living with lupus, friends, family and supporters across Georgia. For Lupus Awareness Month, we would like to highlight some of our lupus heroes and champions.
2010-12-02-12:08EST - These are just numbers to most people; a minute that clicks by during one’s day. Yet to me it’s the exact moment when my heart shattered. It is the time stamp on a green paper when I lost my firstborn child Bianca to lupus.
Greetings, my name is Deborah Wallace. I am a mother, a wife, a caregiver, and for over 12 years, an advocate for lupus awareness. My daughter Bianca, passed away in 2010 at the young age of 28 from PAH, (Pulmonary Arteriole Hypertension) a severe complication due to the lupus attacking her lungs and heart.
For 9 years, I witnessed a vibrant young lady ready to start life as a grown adult suffer from this cruel disease in ways I could never imagine. I saw how her painful flares stopped her from being a person who can do anything to at times a person crying out for pain relief.
My daughter Bianca was just starting college when she complained of having a strange pain in her neck. We thought it might be a pinched a nerve, like a muscle spasm. The next day the pain spread across her shoulders, down her back and into her left arm. Concerned, we researched the internet on her symptoms. It was in the last paragraph in a very long article where we read the one line that shook me. “Back pain can be possible symptoms of SLE lupus.” You see my sister-in-law had passed away in 1990 from lupus nephritis. She was only 40 years old. I saw the genetic link and told Bianca’s doctor to test for just that to rule out lupus. Three months later at the age of 19 she was diagnosed with an aggressive form of lupus. She was given medication and completed college closer to home.
Bianca received her bachelor’s degree in Criminal Justice, December 2004 and immediately after graduation started her new job at the Dekalb County Sheriff’s office. Life was going well, A few months later she was looking for her own place when the flares worsen, and fatigue set in. She visited the emergency room almost every month that first year. Sometimes in an ambulance from work.
The job would only last 2 years. Her lupus was belligerent, so she decided to apply for disability yet keep hope in finding another job. Her spirit was strong, and she was determined to live life fully. But somehow the episodes were worsening. Actions we considered regular and normal, became harder for her to do. Something as simple as getting out of bed or going to work became a struggle. To enjoy a hug of love was painful for Bianca.
It was difficult to comprehend why I, her mother could not touch her or give her comfort. She could only touch me. A slight brush on my daughter’s arm could cause her to scream so much it would always break my heart. Sometimes I was lucky enough to rub her head, something I had been doing her whole entire life when she laid on my lap. Oh, how I miss my girl’s hugs! Bianca was in the process of facing the world on her own, suddenly become dependent on her parents again was a blow to her dreams. She could not live alone anymore. I became her main caregiver.
Dealing with lupus as a caregiver has allowed me to understand what true strength really is. My daughter endured much pain, yet she was always optimistic about getting passed her flares to enjoy life’s good moments coming. Making the most of those pain free days. Bianca made me see the courage in her soul and with her lupus support group LACES, we encountered a band of ladies who showed us even more.
In 2008 Bianca was diagnosed with PAH and had to be connected to a catheter for continuous medication needed to reduce the pressured in her lungs. She continued to make her own way despite the cartridge on her side; making her added tubes a fashion accessory. She never gave up her style or caring heart.
When I meet the many lupus warriors, I am humbled and always praise them for their strength. It was her support group ladies, who convinced me a couple of months after Bianca passed to take a bus from NYC to DC for the LFA national convention in 2011 and tell my story to whoever would listen. I did not hesitate.
Since then, we have walked every walk, and gone to many government offices to share with our legislators about lupus research needs and ask them to support lupus awareness. When I can, I support LFAGA. I vow to not have another mother go through my pain. No one should bury their child. So, I help raise money and fight for a cure to not have anyone else join the unimaginable club we are in. Make others aware of how lupus affects humans and try to make a difference by giving back my time and experience.
There have been a few ladies we know who also lost their battle against lupus. Like my daughter they were vibrant souls and full of hope. When we hear of another young one who has passed away, my husband and I feel the loss all over again. We cry, hold hands, and then we remember our daughter’s spirit. We know Bianca would want us to pay it forward. We walk, we talk, and we hold hands with our lupus family. For we know Bianca was such a giving soul, I’m sure she would have wanted me to support others as we supported her.
Her legacy must live on in our deeds to help others. Give hope and share her story. Our team motto is “STILL I RISE.” Like the poem by Maya Angelou, her favorite poet.
We will keep rising to the challenge. I am asking others to join us in our effort….To KNOW LUPUS
#teammissb #nolupus #FINDACURE