Live each day, says terminally ill woman

EDITOR'S NOTE: Sanctity of Human Life Sunday (Jan. 18) commemorates 42 years of legal abortion in the United States.

CEDARVILLE, Ohio (BP) -- Melinda Pinkerton was on the cross-country track team when her coach noticed the 14-year-old's ankles turned inward when she ran. She recalls the date, Nov. 18, 2002 when her parents received the results of her MRI.

Neurofibromatosis Type 2 patient Melinda Pinkerton at age 25.
Pinkerton family photo
"They told me about the results; the big NF2 [Neurofibromatosis Type 2] word scared me. My first thought was that I was going to die," Pinkerton wrote. "A month later, Dec. 18th, I had surgery to remove a grape-sized tumor that was squeezing my spinal cord flat."

Neurofibromatosis Type 2 is not a form of cancer, but is an incurable, genetic nervous system disorder. Today, the 26-year-old Pinkerton has about eight major tumors on her brain, three major tumors on her spinal cord and 40 or 50 smaller tumors on the spine.

Despite the crippling disease, she savors life and is disturbed when others facing medical adversities choose to end their own lives, even under the guise of legal physician-assisted suicide.

Neurofibromatosis Type 2 sufferer Melinda Pinkerton at age 26 with her father Mark and mother Bonnie.
Pinkerton family photo
Among notable cases, terminally ill cancer patient and right-to-die advocate Brittany Maynard ended her own life Nov. 1, 2014, at her Portland, Ore., home. She took a lethal prescription administered under Oregon's Death with Dignity Act.

Pinkerton's father Mark Pinkerton gave up his medical practice to spend more time with his daughter. He now works as a professor of pharmacy at Cedarville University in Cedarville, Ohio. He said Melinda was shaken by Maynard's choice.

"We were watching the news one night ... and it was top news about how Brittany took her life, and after that went off, she just broke [into] probably the hardest tears I have seen her have at all with this disease," Mark Pinkerton said. "She was just devastated. She was broken."

Melinda marveled at everything Maynard could still do when she took her life, such as travelling to the Grand Canyon and Machu Picchu.

"And she's like, 'Wow, I've done a lot of things myself that Brittany's robbing herself of even. But at the same time, [Melinda] was trying to comprehend how can you do these things and come home and swallow a pill. And I said, 'Well, if you look at that level of activity, and when is the last you had activity of that level? You're 26 now, I would say probably your freshman year of college, if not junior [or] senior year of high school."

Neurofibromatosis Type 2 sufferer Melinda Pinkerton worked with limited use of her hands and arms to paint this abstract acrylic that hangs in her father's office at Cedarville University in Cedarville, Ohio.
 
Today, Melinda is deaf, cannot walk without a walker, and is losing her sight, balance and the use of her hands. But she maintains the blog, MyLifeWithNF2.com, where she recorded the memory of learning her fatal diagnosis. She writes frequent, encouraging blogposts and emails with the use of two fingers; maintains friendships and worldwide connections; prays for many and less frequently, paints acrylic abstracts.

"I have a peace," she blogged Jan. 13. "It did not come without tears and questions and frustrations. Even last night I had more, but as I got in bed and reflected on the past few days -- grand days of living to the full -- I was happy. And in decisions I have made, I am happy and in this peace, I am happy."

Neurofibromatosis Type 2 attacks one in 40,000 people, either passed genetically or spontaneously mutated. Melinda Pinkerton's biological father, whom she calls "Daddy Cory," died of the disease at age 24, weeks before Melinda's mother Bonnie learned she was pregnant. Pinkerton married Bonnie before Melinda's second birthday.

"The doctor told my Mom that I would have a 50% chance of genetically inheriting the NF2 disease. She had the option to abort me, but chose to keep me, as she trusted God that He had special plans for my life," Melinda wrote on her blog. "I know it was not only special plans for me, but also for my Mom and sisters. Daddy Cory and Mom had both graduated from the same college, one year before a special man named Mark –- or 'Mr. Mark' as my sisters called him. That special man is now my Dad."

Melinda has lived longer than expected. Her numbness is so severe she could burn herself without feeling it, her father said. She deals with headaches, neck and back pain, preferring to forego pain medications that cause drowsiness.

"She said I would just rather deal with pain than trying to stay awake all the time," her father told Baptist Press. "And with where these tumors are it has caused her bowels to not work. And so there's a lot of health conditions there she has to fight with each day."

She went through menopause at 23, her pituitary gland doesn't work, and her eight-to-10 daily prescriptions cause side effects. Her skin is thin and fragile from corticosteroids; she bruises easily because of blood thinners.

But she professes joy and strength in the Lord.

"I think what's amazing with Melinda is she has an incredible ability to just laugh at life and laugh with life," her father said. "I told her you can giggle in my house any time you want to, and she will. She just can find joy in little things.

"She's terminal. How long, they won't even try to guess. She's lived longer than we thought. You kind of wonder how she's living day to day. A couple of times we thought we'd lost her already."

"Every month, in fact lately every week, we can see her condition declining."

She encourages others to face life's challenges and make the most of the blessing of life.

"She just said the other day that really if you had no hope, you didn't know who God was, things like suicide, you can't really blame anybody," Pinkerton said. "But [we need to] realize that there is a better way than to live in such despair, to realize that it's God that gives you that hope and joy and significance to live each day.

"She just said you know, you have to face the challenges. Keep doing what you love to do, even though it is hard and you have to find another way of doing it. Face the challenges as they are for what they are."

Christians especially should encourage the terminally ill to appreciate all of the time God gives them on earth, said Pinkerton, who worked 20 years as a primary care physician.

"I've had many times I've seen what could have been a worst-case scenario death process, and it ended up being a beautiful thing. They were able to spend last minutes with family. The family has gone through the grieving process, the gift that this person gave their family through this prolonged illness, is the gift of that letting go, that grieving process that you work through, so when they do die, the grieving process has already been worked through for the most part."

Doctors should be committed to helping people live, instead of speeding their death, Pinkerton said.

"It bothers me when our health situation seems so bad, we just want to brush it off and let it go," Pinkerton said. "And the doctors even say, 'Well, what do you want to do, take a pill?' Well no, it's time to go find a new doctor."

Diana Chandler is general assignment writer/editor for Baptist Press, the Southern Baptist Convention's news service. BP reports on missions, ministry and witness advanced through the Cooperative Program and on news related to Southern Baptists' concerns nationally and globally.
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