Melinda Pinkerton was on the cross-country track team when her coach noticed the 14\u2013year-old\u2019s ankles turned inward when she ran. She recalls the date, Nov. 18, 2002, when her parents received the results of her MRI.<\/p>\n
\u201cThey told me about the results; the big NF2 [Neurofibromatosis Type 2] word scared me. My first thought was that I was going to die,\u201d Pinkerton wrote. \u201cA month later, Dec. 18th, I had surgery to remove a grape-sized tumor that was squeezing my spinal cord flat.\u201d<\/p>\n
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.<\/p>\n
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.<\/p>\n
Among notable cases, terminally ill cancer patient and right-to-die advocate Brittany Maynard ended her own life Nov. 1, 2014, at her Portland, Oregon, home. She took a lethal prescription administered under Oregon\u2019s Death with Dignity Act.<\/p>\n
Pinkerton\u2019s 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\u2019s choice.<\/p>\n
\u201cWe 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,\u201d Mark Pinkerton said. \u201cShe was just devastated. She was broken.\u201d<\/p>\n
Melinda marveled at everything Maynard could still do when she took her life, such as travelling to the Grand Canyon and Machu Picchu.<\/p>\n
\u201cAnd she\u2019s like, \u2018Wow, I\u2019ve done a lot of things myself that Brittany\u2019s 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, \u2018Well, if you look at that level of activity, and when is the last you had activity of that level? You\u2019re 26 now, I would say probably your freshman year of college, if not junior [or] senior year of high school.\u201d<\/p>\n
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\u2019s office at Cedarville University in Cedarville, Ohio.<\/p>\n
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.<\/p>\n
\u201cI have a peace,\u201d she blogged Jan. 13. \u201cIt 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.\u201d<\/p>\n
Neurofibromatosis Type 2 attacks one in 40,000 people, either passed genetically or spontaneously mutated. Melinda Pinkerton\u2019s biological father, whom she calls \u201cDaddy Cory,\u201d died of the disease at age 24, weeks before Melinda\u2019s mother Bonnie learned she was pregnant. Pinkerton married Bonnie before Melinda\u2019s second birthday.<\/p>\n
\u201cThe 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,\u201d Melinda wrote on her blog. \u201cI 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 \u2013- or \u2018Mr. Mark\u2019 as my sisters called him. That special man is now my Dad.\u201d<\/p>\n
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.<\/p>\n
\u201cShe said I would just rather deal with pain than trying to stay awake all the time,\u201d her father told Baptist Press. \u201cAnd with where these tumors are it has caused her bowels to not work. And so there\u2019s a lot of health conditions there she has to fight with each day.\u201d<\/p>\n
She went through menopause at 23, her pituitary gland doesn\u2019t 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.<\/p>\n
But she professes joy and strength in the Lord.<\/p>\n
\u201cI think what\u2019s amazing with Melinda is she has an incredible ability to just laugh at life and laugh with life,\u201d her father said. \u201cI told her you can giggle in my house any time you want to, and she will. She just can find joy in little things.<\/p>\n
\u201cShe\u2019s terminal. How long, they won\u2019t even try to guess. She\u2019s lived longer than we thought. You kind of wonder how she\u2019s living day to day. A couple of times we thought we\u2019d lost her already.\u201d<\/p>\n
\u201cEvery month, in fact lately every week, we can see her condition declining.\u201d<\/p>\n
She encourages others to face life\u2019s challenges and make the most of the blessing of life.<\/p>\n
\u201cShe just said the other day that really if you had no hope, you didn\u2019t know who God was, things like suicide, you can\u2019t really blame anybody,\u201d Pinkerton said. \u201cBut [we need to] realize that there is a better way than to live in such despair, to realize that it\u2019s God that gives you that hope and joy and significance to live each day.<\/p>\n
\u201cShe 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.\u201d<\/p>\n
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.<\/p>\n
\u201cI\u2019ve had many times I\u2019ve 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.\u201d<\/p>\n
Doctors should be committed to helping people live, instead of speeding their death, Pinkerton said.<\/p>\n
\u201cIt bothers me when our health situation seems so bad, we just want to brush it off and let it go,\u201d Pinkerton said. \u201cAnd the doctors even say, \u2018Well, what do you want to do, take a pill?\u2019 Well no, it\u2019s time to go find a new doctor.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"
Melinda Pinkerton was on the cross-country track team when her coach noticed the 14\u2013year-old\u2019s ankles turned inward when she ran. She recalls the date, Nov. 18, 2002, when her parents received the results of her MRI. \u201cThey told me about the results; the big NF2 [Neurofibromatosis Type 2] word scared me. My first thought was […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[1668,2434,3373,460,1112,452,451,2433,971,1015,2811],"tags":[],"_links":{"self":[{"href":"https:\/\/www.churchedge.com\/illustrations\/wp-json\/wp\/v2\/posts\/6050"}],"collection":[{"href":"https:\/\/www.churchedge.com\/illustrations\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.churchedge.com\/illustrations\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.churchedge.com\/illustrations\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.churchedge.com\/illustrations\/wp-json\/wp\/v2\/comments?post=6050"}],"version-history":[{"count":0,"href":"https:\/\/www.churchedge.com\/illustrations\/wp-json\/wp\/v2\/posts\/6050\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.churchedge.com\/illustrations\/wp-json\/wp\/v2\/media?parent=6050"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.churchedge.com\/illustrations\/wp-json\/wp\/v2\/categories?post=6050"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.churchedge.com\/illustrations\/wp-json\/wp\/v2\/tags?post=6050"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}