An in­spi­ra­tional story of light in the dark­ness

Irish Daily Mail - - It’s Friday! - by Philip Nolan

YOU prob­a­bly have heard of Si­mon Fitz­mau­rice, the film­maker who was di­ag­nosed at 32 with mo­tor neu­rone dis­ease and given just four years to live.

He told his story in the best­selling 2015 mem­oir, also called It’s Not Yet Dark, and this year, his wife Ruth en­joyed huge suc­cess with her own mem­oir, I Found My Tribe, which tells how sea swim­ming with friends in a cove in Grey­stones, Co. Wick­low, be­came the re­lease she needed from the sit­u­a­tion life so cru­elly brought to her door.

Now di­rec­tor Frankie Fen­ton has made this doc­u­men­tary based on Si­mon’s book, flesh­ing out the writer’s po­etic ac­count of his bat­tle to live with fam­ily in­ter­views, pho­to­graphs and home videos.

Nar­rated with hyp­notic grace by Colin Far­rell, the story is told in Si­mon’s own words. Nine years af­ter the di­ag­no­sis, he has lost all move­ment in his arms and legs and no longer can speak ex­cept through an eye-gaze com­puter he con- trols with his pupils and which de­liv­ers his words in the sort of dis­mem­bered Amer­i­can voice fa­mil­iar to any­one who ever has heard Stephen Hawk­ing speak.

There is a par­tic­u­lar cru­elty in the fact that Si­mon first no­ticed his con­di­tion, in the form of a foot that went ‘floppy’, while he was in Park City, Utah, show­ing his short movie, The Sound Of Peo­ple, at the Sun­dance Film Fes­ti­val.

When he was given the news about his health, it was a dev­as­tat­ing blow. The Fitz­mau­rices had three young chil­dren, and Si­mon was de­ter­mined to carry on liv­ing to see them grow up.

When he suf­fered res­pi­ra­tory fail­ure, the doc­tors wanted to switch off the ven­ti­la­tor and let him die. He and his fam­ily had other ideas, and they pre­vailed.

Mirac­u­lously, he went on to fa­ther

It’s Not Yet Dark (PG) Ver­dict: Mov­ing and in­spir­ing

twins, bring­ing the to­tal num­ber of chil­dren to five, and to di­rect a full-length fea­ture film, My Name Is Emily.

The mak­ing of that film takes up per­haps a lit­tle too much time of a doc­u­men­tary that is at its best when it con­cen­trates on Si­mon’s re­la­tion­ship with his fam­ily. It is sad to watch his progress from a young, hand­some, vi­brant man to how he lives to­day, but the im­por­tant mes­sage is this — he is alive. Along the way, we see how parts of that life are pro­gres­sively cur­tailed — a video of his sis­ter’s wed­ding is, he tells us through Far­rell, ‘the last time I danced’.

Yet it is hard not to cheer when, hav­ing filmed the last scene of My Name Is Emily, he tells the cast and crew, through the com­puter: ‘That’s a wrap.’

Si­mon’s will to per­se­vere, and the as­ton­ish­ing sup­port he gets from Ruth, are in­spi­ra­tional and pro­foundly mov­ing; I’d be derelict in my duty if I didn’t tell you I fre­quently found my­self in tears.

But, please, don’t be put off — most of those tears were not of sad­ness, but of joy. This is not a film about dis­ease and ill­ness — it is a film about love, the all-con­sum­ing love of a man for his wife and chil­dren, and the love of par­ents for a son, of sis­ters for a brother, of chil­dren for a fa­ther, and of a wife for her hus­band.

Above all, it is a film about the in­domitabil­ity of the hu­man spirit. In an early scene, Si­mon is shown reach­ing the sum­mit of a moun­tain in the Hi­malayas. The moun­tains he has climbed since were even big­ger, but he has faced ev­ery chal­lenge head on.

His con­clu­sion is a motto we all could do with re­mem­ber­ing — ‘it’s not about how long you live, it’s about how you live.’

Mov­ing: Si­mon Fitz­mau­rice and his wife Ruth

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