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.
“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.
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.”
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.”
SOURCE: Diana Chandler