The Small Plates of Tom: My Sister-in-Law Jamie Gibson Hartley

Jamie Diane Gibson Hartley
August 1977 – July 2014

If my sister-in-law Jamie Diane Gibson Hartley were alive today, her wedding anniversary would be fast approaching. She married my brother Taylor Hartley on December 9, 2005 and later passed away in 2014 due to complications and effects of a rare genetic skin disease. In remembrance of Jamie and Taylor's wedding anniversary, I want to share a great letter she wrote to my parents before Jamie and Taylor were married. There are so many things we can learn from it. Some background about her skin disease and life is in order so the letter can be more appreciated.

Recessive Dystrophic Epidermolysis Bullosa (RDEB) is one of the most severe forms of Epidermolysis Bullosa (EB) and also among the rarest. It is an inherited skin disease affecting fewer than 1 per million newborns in the United States. Jamie was born with such. She was certainly "1-in-a-million," both literally and figuratively.

Jamie and her friend Lorien (also with EB)

Severe forms of EB cause individuals to live with constant pain and scarring. The genetic skin disease destroys the skin, mouth, throat, and esophagus. It can cause disfigurement, disability and early death. Most people with EB are not expected to live past age 30, as the sores and scar tissue often lead to infection, malnutrition, and skin cancer. People with Jamie's form of EB typically live around to the age of early 20s or so. Jamie’s brother, Ben, was also affected with the same form of EB and died at age 19. Jamie was quite an anomaly and passed away at the age of 36, a month and a half shy of turning 37.

There is currently no cure for EB.

Jamie's disease greatly affected the daily activities of her life. Before dressing every day, she would wrap her arms and body with gauze to protect her skin and prevent sores. She would avoid crowds where physical contact with other people could open new sores. She would blend foods into liquids because solid foods could damage her esophagus. In fact, when Jamie was six years old, her esophagus scarred shut, and she underwent a surgery to rebuild it.

She played percussion in the 7th grade and played drums in a school band. EB, however, caused her hands to become too crippled so she could no longer hold the drumsticks. She switched to playing the xylophone, but when that became impossible she switched to singing and choir. Jamie's singing voice ended up being one of things that attracted Taylor to her.

Jamie singing in concert

In adulthood, Jaime started producing her own vocal music and CDs. This is particularly noteworthy because her mouth and throat were always full of sores and blisters. Her tongue was also so badly scarred that she couldn't even touch it to the roof of her mouth. A close friend of Jamie has said, "Jamie has the voice of an angel. The fact she can sing at all, considering all the scar tissue she has to get around, is a total miracle."

Jamie Painting

Jaime also started painting in March 2011 after dealing with the possibility of losing one of her arms to cancer, let alone having hands already severely crippled. She produced more than 60 works of self-taught art, ranging from flowers and birds to fantasy and outer space.

Jamie fought cancer for 13 years and probably died of it invading her lungs. This was occurring together with severe infections that would not go away, even with IV antibiotics.

Taylor and Jamie
Campus Plaza Apartment Complex

About the same time that Jamie’s cancer was diagnosed, she met my brother Taylor. In 2001, Jamie was living at the Campus Plaza apartment complex at Brigham Young University. And then Taylor moved there also. Four years later, in 2005, Taylor and Jamie were married. However, before Taylor and Jamie's marriage, she felt the need to be very clear with my parents about the situation. This is where a portion of the greatness of Jamie's heart and soul are exhibited and from which I look to learn and be humbled by.

With all the details I've described above, below are Jamie's inspiring words to my parents she wrote in a letter some time before their marriage in 2005:

Pre-marriage Letter from Jamie to My Parents

Dear Jim and Linda,

I’m writing in answer to some concerns of yours….As for what to expect…for my care and…life expectancy, I don’t have good news for you.

Chances are, everyday, for the rest of my life, my skin will degenerate….Chances are, that some sort of infection will reach my bloodstream eventually.…

Did Taylor tell you that on top of EB [or Epidermolysis Bullosa], I have dyslexia, chronic anemia, chronic circulatory stress that has caused an enlarged heart, chronic fatigue, arthritis, scoliosis, atopic dermatitis, psoriasis and alopecia? Chances are, I will be a bald, toothless, blind, smelly hunchback in a wheelchair in no time at all if I don’t die first….

Chances are, I should be dead by now and should not be here to tell you how wonderful my life will be with Taylor, but because of him, all my worries are about to melt away into a sweet marital bliss. My point is, I cannot tell you all the ways in which EB will destroy a life,…[b]ut as far as what to expect looking toward our future in a gospel sense, I have very good news.

My life is a miracle. I depend on the Lord to grant seemingly impossible things every day….

Marriage will undoubtedly add responsibilities and challenges….I hope you will not doubt the Lord’s ability and desire to bless us according to not only our needs, but our desires….I anticipate more physical healing than ever before. Love is physically healing. Having someone interested in my comfort and wellbeing at my side is beyond my best expectations for me in this life. Having someone who actually seems to mutually need me and my love and support is something I have not experienced and it is one of life’s choicest blessings and responsibilities—a responsibility which I do not take lightly because of my deep love for Taylor.

I am the first to point out the challenges that can be expected in our future. From the beginning I was a skeptic and did not wish to pursue a relationship with him…because I did not believe it was fair of me to share or inflict my pain on someone else. When Taylor marries me,…I will worry constantly about how to satisfy his needs, but I know that where I fall short, the Lord will help me….

It would mean a lot to us if we could have your trust and confidence that we have received answers and revelations concerning the most important decision of this lifetime. I know you want [these answers] too….

Let me add to this my testimony of our Savior and His Atonement….[T]he prosperity of this marriage looks pretty impossible….Yet I know we can’t [make this work] without the Lord and [I know] His promise that we will not be denied any of the blessings if we are obedient and endure to the end. With Taylor, I can do so much more than just endure. Life will not be drudgery. We will be happy, for the most part. We are looking at the not-so-happy parts with eyes wide open, knowing that it is all part of the journey. We both see each challenge as an adventure, a problem to be solved, a puzzle to be completed….

This life is so short. Soon we will all be in the next room together looking through the veil at our family and posterity and realize that most of our worries here were futile. Then, Taylor and I can turn and face the eternity we can enjoy, with no bounds, no EB, no doubts of our abilities and the love we have for each other.

Thank you for the gift of your son. I accept. I will cherish him. I want the best for him. He seems to think that is me. I’d like to agree. So I will do my best to be a helpmeet for him. He is my dearest friend, my love and soon, my eternal life.

With much love and respect and all my appreciation,

Jamie

P.S. please don’t take this the wrong way

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