A Per­fect Life

  • Review
By – May 3, 2016

Eileen Pollack’s absorb­ing new nov­el is an excit­ing depic­tion of painstak­ing sci­en­tif­ic dis­cov­ery and an insight­ful exam­i­na­tion of the nature of iden­ti­ty and love. The book is nar­rat­ed by Jane Weiss, a post-doc­tor­al researcher in genet­ics at MIT who is obses­sive­ly seek­ing the genet­ic mark­er for Valentine’s Dis­ease. Valentine’s is a fic­tion­al inher­it­ed neu­rode­gen­er­a­tive dis­ease that bears a strong resem­blance to Hunt­ing­ton s dis­ease. Jane had a strong inter­est in sci­ence from a young age, but became fix­at­ed on Valentine’s Dis­ease because her moth­er, grand­fa­ther, and uncles were vic­tims and she and her much-loved sis­ter, a dancer, are at risk. The nov­el is large­ly set in Cam­bridge, Mass­a­chu­setts and MIT dur­ing the 1980’s and in an iso­lat­ed Maine fish­ing vil­lage that fore­shad­ows life in a post-apoc­a­lyp­tic pan­dem­ic zone.

Jane and her sis­ter, Lau­rel, are dom­i­nat­ed by the pos­si­bil­i­ty of ear­ly dis­abil­i­ty and death. Valentine’s, like Hunt­ing­ton s dis­ease, caus­es vio­lent shak­ing, clum­si­ness, inabil­i­ty to eat, demen­tia, insan­i­ty, and death. There was no treat­ment avail­able dur­ing the time peri­od of the nov­el (and there is lit­tle avail­able in the way of treat­ment now for Huntington’s, thir­ty plus years lat­er). Jane notes in her nar­ra­tive that she had to rush even when she wasn’t late because her moth­er had come down with the dis­ease when she wasn’t much old­er than Jane was. Jane sees her­self as the good daugh­ter who cared for her moth­er dur­ing her final year and now works tire­less­ly to find the gene mark­er so that she and her sis­ter can deter­mine if they have inher­it­ed the bad gene. Lau­rel is con­vinced she has the gene muta­tion and hopes to die young, before she comes down with the symp­toms of Valentine’s. She lives her life like a scav­enger hunt, flit­ting from one inter­est to anoth­er, one rela­tion­ship to anoth­er. Nei­ther of the sis­ters plans to mar­ry or have chil­dren. Knowl­edge that they are neg­a­tive for the gene could per­mit them to con­tem­plate hav­ing families.

The frus­trat­ing, labo­ri­ous empir­i­cal method for iden­ti­fy­ing a gene mark­er in the 1980’s, decades before the map­ping of the human genome, is vivid­ly por­trayed. Life in a high-lev­el research lab pop­u­lat­ed with diverse eccen­tric char­ac­ters and fraught with com­pe­ti­tion is vivid­ly created.

Eth­i­cal dilem­mas about the use of genet­ic test­ing to iden­ti­fy bear­ers of muta­tions when no treat­ment is avail­able for the con­di­tions they cause are explored and remain ger­mane today. The vic­tims of Valentine’s Dis­ease who make blood sam­ples avail­able for the research are ful­ly real­ized in the nov­el and the inabil­i­ty of the sci­ence to help them is tragic.

The role of genet­ics in deter­min­ing iden­ti­ty is a key con­cern of the nov­el. The Weiss sis­ters believe Valentine’s is part of their iden­ti­ty. Who will they be if the mark­er is dis­cov­ered and they find they don’t have the muta­tion? Will some­thing essen­tial be tak­en away? Lau­rel believes she would be ordi­nary with­out Valentine’s. Her inspi­ra­tion for dance comes from her expect­ed ear­ly death. If the human genome is ever mapped, Jane won­ders, Would you know your­self any bet­ter than you know your­self now?” A map only fools you into think­ing you know where you are.”

Inger Saphire-Bern­stein is a health pol­i­cy pro­fes­sion­al with exten­sive expe­ri­ence across mul­ti­ple health care deliv­ery set­tings and the insur­ance indus­try. She has pub­lished a num­ber of arti­cles and papers in the health pol­i­cy field.

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