Paul Alexander, the man who spent more than 70 years in an iron lung ventilator, had a devoted carer by his side acting as his ‘arms and legs’ for the last three decades of his life.
Though their relationship was not romantic, Kathy Gaines, 66, lived with Paul ever since he graduated law school and moved to the Dallas-Fort Worth area, until he died aged 78 on Monday.
‘Kathy and I grew together … she stretched herself over as many things as I needed,’ Paul told The Guardian back in 2020.
Paul did have a lover called Claire decades ago – but her mother forbade them to marry.
His brother, Phil, said his relationship with Kathy, who is legally blind due to type 1 diabetes, was the next nearest thing.
Paul Alexander and Kathy Gaines, his carer of 30 years, who he met from a newspaper advert
Paul Alexander, the man who spent more than 70 years in an iron lung ventilator, had a devoted carer by his side acting as his ‘arms and legs’ for the last three decades of his life
Paul Alexander (front, left) with Kathy Gaines (front, right) at the Rotary Club of Park Cities in 2014 for World Polio Day, where Paul shared his story of life in an iron lung
‘Paul has always been aggressive about things that he wants and needs around other people,’ Phil told The Guardian in the same 2020 interview.
‘He’s pretty demanding. But Kathy is more demanding than he is. They’ve had their moments, but they always work it out.’
Kathy was the brains behind the title of Paul’s memoir, Three Minutes for a Dog, which he self-published in April 2020 about his extraordinary life story.
She said she became his ‘arms and legs’ after responding to a job advert to be his career around 30 years ago.
Kathy was responsible for Paul’s daily upkeep like shaving his face, changing his clothes and sheets, trimming his hair and nails, handing him his toothbrush.
This also involved working the unusual machine which kept him alive for 72 years after he contracted polio aged six in 1952.
She also did much of his life admin – from paperwork to making appointments and doing the grocery shopping.
Throughout their 30 years together, she always either lived with him or within the same building. She would see him every day, whether she was working or not.
During his five-month long stay in hospital in 2019, Kathy kept this up by visiting daily by bus – since she was unable to drive due to her eyesight.
International source of inspiration Paul Alexander pictured voting from a wheelchair
‘Kathy and I grew together … she stretched herself over as many things as I needed,’ Paul told The Guardian back in 2020
Paul Alexander fell ill aged six and spent most of his life inside an iron lung ventilator
She taught the nursing staff how to manage the iron lung machine, and about Paul’s preferences.
Paul contracted polio as a child during a major US outbreak of the disease in the 1950s, and he was paralyzed below the neck for life.
He ordinarily used the ‘iron lung’ machine to breathe since he couldn’t contract his diaphragm – but he also taught himself a breathing technique which allowed him to leave the machine for up to one day.
Known as glossopharyngeal breathing, the technique involves gulping air into the lungs.
He was home-schooled, and at age 21, he graduated second in his class from W.W Samuell High in Dallas 1967.
Paul went on to study law at the Southern Methodist University in Dallas, where he fell in love with a woman named only as Claire.
They got engaged, but his mother disapproved of their relationship because of Paul’s condition, and forbade them to marry or even speak again.
‘Took years to recover from that,’ Paul told The Guardianin the 2020 interview.
He qualified as a lawyer and lived a rich and varied life as an amateur painter, law teacher, published author and rights activist despite being bound to the machine.
Paul wrote his 2020 memoir by tapping at keys on his computer with a pen glued to a stick, which he held in his mouth.
Paul Alexander, a trained lawyer, signing papers for work from the iron lung
In spite of physical constraints, Paul became an avid painter, traveller and author
Paul Alexander pictured with his beloved brother Philip. In a heartbreaking Facebook tribute, Philip called his sibling ‘loving’ and ‘also a pain in the as**’
Paul Alexander managed to author a book by holding a pen in his mouth to tap his keyboard
News agency AP shared the story of how Paul became a top student despite the condition, noting was due to graduate as the first homebound pupil in the district, trialed from 1959
He hoped his words would encourage and inspire others to live full, positive lives.
Paul’s story touched the lives of millions who tuned in to his social media talks to share his reflections on life from within a metal box.
He proudly recounted the opportunities he had carved out to travel as a speaker on disability rights, to enjoy views of the ocean and even to visit strip clubs as he shared all the reasons to remain cheerful.
In his own words of defiance: ‘You can actually do anything, regardless of where you come from, your background, or the challenges you may face.’
‘You just have to turn your heart to it and work hard… My story is an example of why your past and even obstacles don’t need to define your future.’