SOMETHING TO CONSIDER: Wife is encouraged through faith – Herald-Banner

Selenon Related Myopathy. SEPN1 for short.

Thats what Jesse has.

Jesse has known of her muscular dystrophy since she was in the 8th grade. Her doctors in Michigan clinically diagnosed her with fsh muscular dystrophy after sending off a muscle biopsy sample to the lab. The biopsy wasnt comprehensive but she had all the seeming markers of that type of dystrophy. Jesse now sees a specialist in Dallas once a year, who encouraged and enable her to undergo various genetic testing in hopes of getting a more concrete diagnoses of fsh, or to narrow down what specific dystrophy she has.

We went to a geneticist a few weeks ago who ran a gene test on her as well as her parents. A week after that I came home and found her in our office/guest bedroom sitting on her computer chair, staring at the screen, tears flowing down her eyes.

Selenon Related Myopathy, she said, smiling. Thats what I have.

Though we dont know exactly what function it performs, selenonprotein N is thought to most likely protect cells against stress from oxidation during a babys development in the womb and works in the formation of muscular tissue, as well as muscle function and growth after a child is born.

SEPN-1 Related Myopathy is an extremely rare form of muscular dystrophy even more than fsh MD. This form of muscular dystrophy occurs when there is an error in the genetic code passed from parents to children. It can either be passed on by one parent who has a dominant gene or by both parents when each has the recessive genetic error.

Both Jesses parents have the same recessive error.

My friends and I have been discussing the purpose of pain and suffering in this world. It ensnared nearly the whole of our discussion one recent Saturday afternoon. Has pain and suffering been purposed by God, and if so, for what purpose, what is the end, the telos of pain? Is there a meaning to our pain, or is it all meaningless? Thats the perennial question that must be answered for all humanity, not simply those who adhere to a cosmos created by a good and loving God.

We call something providential when it seems to work out for our immediate good. We call something unfortunate when it works out the opposite. Jesse and I both hold that we worship a sovereign God: nothing is outside the boundary of his will that includes the bad that occurs.

Shall we receive good from God, Job tells his wife while he writhes in pain and sorrow of losing his children, flocks, and health. And shall we not receive evil? And we are told in the following sentence: In all this Job did not sin with his lips.

Job was right.

Last week I wrote about my bouts of vertigo. I get those, on average, quarterly. Four times a year I deal with being overly dizzy for a day. The rest, Im fine, normal. Jesse deals with her disease daily. Our apartment complex rests on an incline. She usually needs assistance walking up the incline. More than two or three stair steps become impassable without assistance. She cant sleep without her breathing machine.

My first reaction is to complain when my own dizziness sets in. Yet Jesse often praises God for how she has been used to share her love for God, even in the midst of a disease as this. Her joyful suffering brings hope to her friends, family, and to me. It puts my pain in perspective and reveals, through her joyful life, how to trust God even in the midst of suffering and pain.

Since Jesse was only clinically diagnosed with fsh MD, she was not eligible for clinical tests and trials for medications that could help. Those running the trials wanted to be sure that those receiving the medication in fact had the disease. A clinical diagnosis wasnt enough.

For 20 years Jesse lived, knowing she had a disease but not knowing for certain what it was. Now she knows. Now she is eligible for future trials for new medications or treatments that may arise. We are currently looking into those treatments.

There may never be a cure for her disease and Jesse knows it. She accepts it.

One of the things Jesse misses is the ability to simply run. How often do I take the simplest of things for granted? Though Jesse knows there may never be a cure, that she may never again run on this planet, she is encouraged because she knows there is a new one we await, one in which she will run unencumbered into the arms of her gracious and loving Father.

And that gives me great joy.

Joseph Hamrick is a semi-professional writer and sometimes thinker. He lives in Commerce and serves as a deacon at Commerce Community Church (C3). He can be reached at jhamrick777@gmail.com.

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SOMETHING TO CONSIDER: Wife is encouraged through faith - Herald-Banner