Spinal Muscular Atrophy (SMA)

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Ben Mattlin, How 30 Blocks Became Thirty Years; A teenager on a wheelchair forged a relationship with a woman that endures. New York Times, Jan 7, 2018 (in the Sunday column :Modern Love).
https://www.nytimes.com/2018/01/ ... ecame-30-years.html

Note:
(a) "Personal details: born in New York City in 1962, graduated cum laude from Harvard University in 1984, lives in LA with his wife, two daughters, a cat, and a turtle.": from his own website www.benmattlin.com

(b) "When Mary Lois and I started our relationship on that humid night in Stamford, Conn, we may not have expected it to last. After all, I was unable to scratch my own nose, let alone walk. And she was three years older than me and far more independent. * * * I was 19. She wore her straight auburn hair in a short boy-cut then. * * * A few years earlier, she had come to Stamford for the summer to look after my infant half brother. She was still in college and was at loose ends. So by that first date, we had already spent a lot of time living in the same house."
(i)
(A) In his 2012 -- probably his first --  book (Against The Odds' A 'miracle boy grows up. Skyhorse, 2012), the wife was identified as "ML" only throughout the book.
(B) "Mary Lois Mattlin. Also known as Mary Lois Forward; Age 57": from the Web. (In all likelihood, Forward is her maiden name.)
(C) Lois
https://en.wikipedia.org/wiki/Lois
(ii) color: auburn (reddish brown) for human hair is same as bay for hose hair (both auburn and bay, meaning color, can be either an adjective or a noun). See equine coat color
https://en.wikipedia.org/wiki/Equine_coat_color
(photo 2: bay vs chestnut)
(iii) loose end (n): "Phrase be at a loose end: have nothing specific to do  <‘why don't you stay to eat, if you're at a loose end?>"
https://en.oxforddictionaries.com/definition/loose_end

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(c) "I was born with spinal muscular atrophy, a congenital, progressive, incurable neuromuscular condition, but my lifelong disability has never prevented me from doing anything I set my mind to. I was one of the first quadriplegic students to matriculate at Harvard. * * * I now write with a voice-recognition computer program. I no longer have the strength to hold or use a pencil. I drive my motorized wheelchair with a hypersensitive, lip [not voice]-controlled mini joystick. Nevertheless, that first girlfriend and I have been married for nearly three decades. * * * she learned to live with my limitations — those caused by my atrophied muscles, my respiratory distresses * * *
(i) He was "born with" the disease in the sense that it is a genetic disorder. However, Mr Mattlin says the disease first came to notice when he was six months old. See Ben Mattlin, A Half-Century of Living with SMA. Directions, Spring 2013, at page 26.
http://home.earthlink.net/~bmattlin3/id70.html

"Directions" is published by a non-profit organization Families of SMA ("Families of SMA is dedicated to creating a treatment and cure for Spinal Muscular Atrophy by funding and advancing a
comprehensive research program"), whose website is www.curesma.org.
(ii) You need not read this page carefully. You only need to know that before molecular biology, the disease "spinal muscular dystrophy" (SMA) was classified as Type I to IV (from the most severe and starting the earliest -- as a newborn 00 as Type I, in decreasing order). Mr Mattlin had thought he had Type I until he did not die in childhood when all should. Then he realized he was Type II.

Spinal Muscular Atrophy. Genetic Home Reference (GHR), National Library of Medicine (NLM), National Institute of Health (NIH), undated.
https://ghr.nlm.nih.gov/condition/spinal-muscular-atrophy
(A) With advent of molecular biology, SMA was found to consist of a gene mutation in a single gene called SMN1 (on chromosome 5) for Type I to IV, plus rare mutation involving a couple of other genes (UBA1, DYNC1H1, and VAPB) -- similar manifestations notwithstanding.  
(B) SMN1 (SMN stands for Survival of Motor Neuron) is expressed in many types of cells of the body, whose function is unclear. As to why gene mutations if SMN 1 leads to death of motor neurons, but likely not other kinds of cells, it is also a mystery.
(C) The UBA1 gene is located at X chromosome in humans, whose gene mutation causes the X-linked disease. Mutations in all other are autosomal recessive.

(iii) Thomas W Prior and Erika Finanger, Spinal Muscular Atrophy. In Margaret P Adam (editor-in-chief), GeneReviews (a loose-leaf book). (publisher Seattle, WA: University of Washington, last update Dec 22, 2016
https://www.ncbi.nlm.nih.gov/books/NBK1352/
("Before the genetic basis of SMA was understood, it was classified into clinical subtypes; however, it is now apparent that the phenotype of SMN1-associated SMA spans a continuum without clear delineation of subtypes")

There is no need to read the rest of this Web page, and the next/.
(iv) Spinal Muscular Atrophy. Muscular Dystrophy Association (MDA), undated
https://www.mda.org/disease/spinal-muscular-atrophy
("SMA involves the loss of nerve cells called motor neurons in the spinal cord * * * The primary symptom of chromosome 5-related (SMN-related) SMA is weakness of the voluntary muscles [ie skeletal muscles, but not heart or smooth muscle]. The muscles most affected are those closest to the center of the body view the illustration] * * * Sensory, mental and emotional functioning are entirely normal in chromosome-5 SMA")

Having viewed the illustration, you might conclude that Mattlin might not have a problem with penile erection. Accord Rosemary Molloy (a reader who wrote a review on May 24, 2015)
https://www.amazon.com/Miracle-B ... ution/dp/B00BK81IES
("Sex? There's sex, all right, both partnered and--uh, otherwise")

choi

(d) ”There was an Elvis Costello concert in Manhattan. I made her walk 30 blocks through the sweltering stench of Hell’s Kitchen in her date shoes and slinky pink dress because in those days New York buses and taxis weren’t wheelchair accessible * * * Toward the end of that night, emboldened by a couple of Black Russians downed at a bar on the walk back, I suggested she ride on my lap. * * * even if my disability made me seem harmless, she admitted she was nervous during our first sexual encounters in the weeks that followed that concert — afraid, primarily, about injuring me. 'You were so fragile looking,' she said. 'And I was worried about balancing in the tiny bed. And if there was a problem, would I have to go get your attendant? Or worse, your dad?' * * * 'But you survived the first few ]sexual] encounters,' she said.”
(i) Elvis Costello
https://en.wikipedia.org/wiki/Elvis_Costello
(1954- ; stage name of the Englishman Declan Patrick MacManus)

Costello is an Irish surname.
(ii) Black Russian
https://en.wikipedia.org/wiki/Black_Russian
(vodka and coffee liqueur)

(e) "For better and worse, disability tends to break down the barriers of privacy. When someone must assist you with dressing, bathing and using the bathroom, you come to understand each other's most intimate processes and needs. (I still have paid help every day, but she fills the gaps.)"

(f) "Early on, before we had children, I got deeply involved in disability rights (and pride), a movement that can sometimes view able-bodied people as the enemy, as oppressors. For a while this led me to feel more bonded with a disabled woman and fellow advocate than with my wife."
(i) One (indefinite) article means just one person, not two.
(ii) Compare
(A) An Officer and a Gentleman
https://en.wikipedia.org/wiki/An_Officer_and_a_Gentleman
(a 1982 American film)
(B) Horace Dalmolin, The New English Grammar; With phonetics, morphology and syntax. Tate Publishing & Enterprises, 2009, at page 399
https://books.google.com/books?i ... mmar%22&f=false
("> An officer and gentleman is ... (same person)   > An officer and a gentleman are ...* (different persons) [text omitted]  * The title of the movie An Officer and a Gentleman, even without a verb, appears to refer to one person. As such, it is erroneous and ungrammatical use of syntax. However, it may be singular only when referring to the title as a unit -- 'An Officer and a Gentleman' was ...")  

(g) "Ben Mattlin, who lives in Los Angeles, is the author of 'In Sickness and In Health; Love, disability, and a quest to understand the perils and pleasures of inter[-]abled romance,' to be published later this month."

There is a hyphen in the subtitle of the book, whose publisher is Boston, MA-based Beacon Press.