Palo Seco mother lives in constant pain

For the last 13 years, Niola Flanders has known nothing but pain.

Behind her bright smile, well-done hair and beautiful features is a woman who wonders if her continued existence is merely for ceaseless torment.

“Pain to me is a cry that nobody hears. My pain comes from the soul, from within. You ever cried so much that no more tears flowed? That is my pain. Some nights I ask God why am I here still going through all this pain? Did I do something? I start to feel, blame and wonder what I could have done to cause this,” Flanders said, her head bent in resignation as she struggled to lift her freshly bandaged arms.

Every movement fills her with anguish.

The hands and arms that made her a much sought-after hairdresser in Palo Seco, are now covered in blisters and open sores. Her dark brown skin looks like it is bursting at its seams, exposing pink, white and yellow flesh and some of the tendons in her hands. Swollen, gangrenous and rotting in appearance, it looks as if someone took a knife, removed a large chunk of flesh on both arms and then left them open to infection.

“It feels like something is chewing it, eating at it, sometimes the fan breeze alone will cause it to hurt,” Flanders said.

The 43-year-old mother suffers from three conditions—sickle cell anaemia which affects her red blood cells’ ability to carry oxygen throughout her body, undifferentiated connective tissue disease, which causes her immune system to attack itself and pyoderma gangrenosum, an inflammatory skin disorder that causes open sores.

None are curable.

“My enemy is my own self. I don’t have an immune system that is working as it should. To treat my condition, they have to suppress my immune system, so I am always open to infection,” she explained.

Wincing in pain she added, “It torments me.”

As she showed her scars from the medical treatment, she continued, “I had gifted hands and now every incision like if they try to put an access or give me an injection, the skin just bursts open, I get boils and abscess and the only way to get rid of it is to cut it so I lost a lot of tissue.

“I have nerve damage, deformity in my fingers, this is my wedding finger and just look at it,” she cried showing her swollen hands.

“The only way I will not feel pain is when my body says, I am not fighting her anymore,” Flanders said.

Every smile the mother of three mustered was brief, cut short by her constant suffering.

On her coffee table lay a Bible opened to Jeremiah 29:11: “For I know the plans I have for you, says the Lord, plans for welfare and not for evil, to give you a future and a hope.”

Hope is the only medication Flanders trusts at this point. Her faith only takes her so far.

“I feel robbed, because I had the potential to do so much and I had dreams of doing so much, and it was just taken away and it’s sad because I still have life, but I can’t do too much with it,” she whispered, glancing at her bandages and swollen feet.

Flanders said the only thing she looks forward to is taking a sleeping aid to fast forward through each day.

“Laying down day to day and not being able to do anything, it’s not nice. It’s like you are in a prison and you are just surrounded by the four walls and your thoughts,” she said.

Unable to work, Flanders depends on a disability grant but most of the money goes into her treatment. The State discontinued a food card that she heavily relied on. A state official told her she could not receive two grants from the Government simultaneously.

Because of her condition, Flanders spends most of her time in hospital.

“One of the nurses said to my mom, you are standing in the way of your daughter from transitioning from dying,” she said.

Flanders spends months at the hospital but feels like a burden whenever she is there. On this day she cleaned and bandaged her open wounds to avoid the scorn she sometimes gets at public health facilities.

“I would just like to be understood. Not everywhere I go I would get the treatment I would wish for because I am always admitted, sometimes they tend to be fed up and insensitive. Sometimes, they will throw little remarks, and they affect me,” she admitted.

She was advised to have a port installed on her body to make it easier for healthcare providers to access a vein. The plastic or metal disc-shaped port is about the size of a coin and goes under the skin in the chest, arms or abdomen.

Flanders is seeking assistance to get the procedure done as she was told if she had a proper access point to regularly administer medication, it would at least ease her suffering.

“Life right now is not what it used to be, but I would just like to wake up one day feeling energised, feeling no pain, be able to cook something for my children and be able to genuinely smile and not just pain a smile,” she said.

Asked when last she was genuinely happy, Flanders said, “That’s a very good question. I can’t remember … I can’t remember.”

Any medical professional willing to help Flanders with the installation of the port and anyone willing to help her with food or medical supplies can call 336-3237.

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