Grieving Bodily Loss in Celebrity Illness Memoir

Abstract

The relationship between public and private is central to celebrity memoir, even more so in connection to chronic illness that slowly progresses. This article examines the process of grieving publicly a life and body that are changing in Michael J. Fox's No Time Like the Future: An Optimist Considers Mortality (2020), and Selma Blair's Mean Baby: A Memoir of Growing Up (2022). Fox addresses the slow deterioration brought on by Parkinson's disease and other conditions, whereas Blair focuses on her childhood and increasing symptoms of multiple sclerosis, as well as alcohol abuse. The article draws on autobiographical perspectives on the aesthetics and purposes of illness narratives, examining the limits of public personal narratives when faced with progressing disease. The selected texts indicate that celebrity status provides opportunities for advocacy work as well as access to treatment, while also emphasizing bodily loss when illness manifests itself publicly.

Celebrity memoir is currently gaining new ground through widely publicized bestsellers such as Spare (2023) by Prince Harry, The Woman in Me (2023) by Britney Spears, Paris: The Memoir (2023) by Paris Hilton, and Finding Me (2023) by Viola Davis. Another subgenre of life writing that is increasingly influential is the illness memoir, in which authors recount experiences of illness from symptoms to diagnosis to recovery or, in the case of terminal illness, impending death. Many such memoirs have become widely recognized, for example Nina Rigg's The Bright Hour (2017), Paul Kalanithi's When Breath Becomes Air (2016), and Dying: A Memoir (2016) by Cory Taylor. Memoir's impact lies partly in its negotiation of public and private, and bringing the two categories together enables an examination of the balancing between private and public in a life that is already public to begin with, and which is transforming due to illness. The memoirs in focus are Michael J. Fox's No Time Like the Future: An Optimist Considers Mortality (2020), and Selma Blair's Mean Baby: A Memoir of Growing Up (2022). This article conducts textual analysis of their personal accounts of illness, Parkinson's disease and multiple sclerosis respectively, and bodies in slow deterioration from the perspective of publicly grieving lives that are changing. The article draws on literary studies of autobiographical writing, celebrity studies, and illness studies, for an understanding of the cultural impact of celebrity illness memoir. The temporalities of coming to terms with disability resulting from illness as represented by Fox and Blair are central, as Fox addresses bodily transformation after having lived with his diagnosis for an extended period of time, whereas Blair received her diagnosis more recently.

From a medical humanities perspective, the end-of-life memoir has received attention, with researchers focusing on the embodied experiences of illness (cf. Avrahami, 2008; DeShazer, 2013), the desire to be remembered (cf. Chiu and Yu-Ling, 2012; Kogan et al., 2017), and the impact personal narratives can have on health care practices and practitioners (cf. Jain, 2013; Myers et al., 2020). The celebrity aspect of narratives about dying has also received some attention, with well-known writers and journalists providing details of terminal illnesses and conditions for the public (cf. Brennan 2017, 2022). Fox and Blair represent a more popular and traditional category of celebrity, having both appeared in multiple films and TV series, and their autobiographical texts address bodily deterioration. Alice Hall (2016: 134) outlines the rise in disability memoir, written in the last decades by so-called ordinary people, bringing attention and awareness to their various lives and conditions. She sees contemporary disability memoir as a collective undertaking due to its advocacy dimension, yet the texts examined here offer a somewhat different trajectory as they, too, advocate for awareness relating to the two conditions the authors live with, but the memoirs remain otherwise focused on the self and progressing illness. As Susan Sontag (2003, no p.n.) notes, “[n]arratives can make us understand”, emphasizing the importance of individual experiences for greater insight into the realities of illness and disability. Celebrity, too, is relevant, as Arthur Kleinman (1988, p. 5) acknowledges the “distinctive” nature of illness, and how it is shaped in relation to the interpersonal contexts of the ill person. Illness and disability are not always easily distinguished between, and as Alison Kafer (2013, p. 6) observes, “impairment” is seen in medical terms as a lack of some kind, while societies are generally not accessible to those with nonnormative bodies. In Fox's and Blair's case, illness leads to disability as represented in their memoirs.

Both writers have become spokespeople for the illnesses they suffer from, engaging in advocacy work to promote awareness and raise funds. As Michael Brennan (2022, p. 1044) notes, “‘[g]oing public’ with one's illness/dying (especially by those already in the public domain) may help resist such victim status by normalising illness/dying as an everyday part of life”. This is an important aspect of the memoirs and the writers’ approach to their lives and public personas, yet their celebrity status impacts the care and treatment they are able to access. Living in the public eye also brings its challenges as expressed in both memoirs. Memoir as form is also highly personal, and its impact with regard to achieving “social justice” for those living with disability (Adamson et al., 2022) is limited, but as cultural expression it carries meaning beyond the personal. G. Thomas Couser (2022, p. 304) defines the disability memoir as a text that negotiates what it means to “live with, in, or as an anomalous body”. Other studies have acknowledged the difficulty in arriving at a definition, asserting that it may not matter whether “the condition is life-threatening or not, congenital or acquired”, as “it affects both self-definition and relationships with others” (Raoul et al., 2007, p. 5). This is reinforced by Faye Wachs, who observes in interviews with people living with chronic pain that “self-transition” emerged as the most central, as their experience of the self had changed, including feelings of “loss, grief, and growth” (2023, p. 6). The experience of transition and transformation is central to both texts examined here.

Illness memoirs have been criticized for their commodification of suffering (Brennan 2017, 67), yet they also bring attention to matters surrounding deterioration and even death (Brennan 2017, p. 70). Celebrity memoirs, for their part, are criticized by Couser for often listing the services of ghostwriters, and for becoming “inspiration porn” (2022, p. 304), a somewhat derogatory label. Several contemporary celebrity memoirs reveal intimate details about personal struggles, for example substance abuse as in Carrie Fisher's Wishful Drinking (2008) or Matthew Perry's Friends, Lovers, and the Big Terrible Thing (2022). As for ghost-writing, Fox outlines the process of writing No Time Like the Future in an interview for the New York Times and reveals that he would dictate his notes to his “longtime producing partner Nelle Fortenberry” (Egan, 2020). Fortenberry asserts in the same interview that “I am not his ghostwriter or a co-writer. He is the writer of this book”. No explicit information about the writing process of Blair's memoir is currently available, but she does state in an interview for Elle that the act of writing her memoir became a process of healing, and of “reckoning” regarding her past (Kaur, 2022). The indication is that she did write the memoir herself. Hannah Yelin (2020, p. 2) confirms that a celebrity who enlists a ghostwriter “is often a figure of derision”. Such disdain for memoir does not concern solely celebrities, as it has previously been seen as a “lesser” form of writing, providing “an anecdotal depiction of people and events” (Marcus, 1994, p. 3), standing in contrast to autobiography which documents life as a more complete process (ibid.; Lejeune, 1989). Both texts examined here are memoirs according to the definition, depicting particular parts of the writers’ lives and focusing on certain topics. Gender also comes into play, and as Yelin observes, many female celebrity memoirs offer stories of trauma and sexual abuse, inspiring the question as to why they are “required to have suffered” (2020, p. 268). Blair's memoir conforms to this, as she recounts rapes and assaults she was subjected to.

Temporally, the memoirs are different as one concerns the account of a person who has been living with his condition for decades, and the other addresses a diagnosis received more recently. The processes of coming to terms with bodily loss are therefore also different. Although many recent studies of so-called grief memoirs focus on narratives of the loss of loved ones (see for example Bartlett et al., 2022; Snauwaert, 2021; Zylla, 2017), there are also those that offer a different trajectory, examining memoirs where the grieving process connects with terminal illness (see for example Deller, 2024). As argued by John Archer (1999, p. 1), grief is often thought of in terms of losing a loved one but can also emerge if life irrevocably transforms. He adds that there is “no systematic account of how grief changes the way people think” (ibid., 8). This article subsequently goes on to discuss the two memoirs from a perspective of grieving publicly a changing life and body, accounting for time passed and the time that is left, as well as examining the balancing between public and private persona.

Michael J. Fox: Meanings of Loss

The memoirs examined in this article present different trajectories of debilitating illness and are therefore analysed separately, with a concluding discussion bringing them together. The subtle grieving process in Michael J. Fox's fourth memoir relates not only to living with Parkinson's disease, but also to aging and inevitable life changes that come with it. Fox states that he understood a long time ago that he cannot control his Parkinson's and has instead resorted to “adaptability and resilience” (2020, p. 1). That resilience is put to the test throughout No Time Like the Future, as Fox undergoes surgery for a tumour on his spine and then some months later falls down in his kitchen and suffers a complex fracture in his left arm. Both incidents lead to prolonged periods of rehabilitation and physical therapy, made more complicated by the ever-present Parkinson's. Peter A. Kempster (2004, p. 106) discusses Fox's first memoir, Lucky Man: A Memoir, and argues that Fox approaches his disorder “as a journey to acceptance and understanding”. This same journey is still ongoing three books later, and Fox's autobiographical writing, spanning two decades, offers material for examination of the balancing between health and illness, optimism and despair, privately and publicly. Kempster (2004, p. 105) observes that within neurology, doctors may sometimes distance themselves from personal narratives, as the “subjectivity in such writing, although valid for that individual, does not always deliver insights of a strictly clinical description”. The analysis provided here does not attempt to reach any clinical insights and is purely cultural, examining the coming to terms with a (public) body that is deteriorating.

Michael J. Fox's celebrity status continues to be one of prominence, detailed in a 2023 documentary, Still: A Michael J. Fox Movie, nominated for a BAFTA award (British Academy Film Awards) in 2024. Fox presented the award for Best Film, receiving standing ovations (“Best BAFTA moments”, 2024). In 2022, Fox was awarded the Jean Hersholt Humanitarian Award for his work with The Michael J. Fox Foundation, focused on funding research on Parkinson's (Yamada, 2022). The memoir examined here provides a more personal behind the scenes view of a year, 2018, in Fox's life that was his “annus horribilis” (Fox 2020, p. 179). The opening paragraph of the memoir describes the fall that shatters his arm, leaving Fox feeling “emotionally diminished” (2020, p. 157). Optimism is a central theme of Fox's memoir, and it is repeated in his speech accepting the Oscar, as well as in the title of the second memoir which has a documentary film spinoff (2020, p. 36). Fox explains that the documentary examines his optimism and mentions towards the end of the memoir a phrase he got from his father-in-law Stephen Pollan: “With gratitude, optimism becomes sustainable” (2020, p. 197). It also closes the memoir in the epilogue.

The desire to stay optimistic to some extent clashes with the lived reality of Parkinson's and other conditions, becoming part of the grieving process. After receiving his diagnosis, Fox reports that people would ask him and his wife if they felt apprehensive about having more children, considering that it entails an “open-ended escalation of a major neurological disorder” (2020, p. 7). The future promise involved with having children is therefore shadowed not only by the illness itself but by people's reactions. The illness impacts Fox's acting career as well, causing him to lose some of his facial expressive abilities (2020, p. 32). The character of Louis Canning on The Good Wife, a lawyer who uses his illness for professional gain, provides a chance for him to continue acting (2020, p. 33). Pramod K. Nayar's (2020, p. 87) study of cancer memoirs by Bollywood actors notes that such “celebrity somatography” draws on the “ontologically real”, which is “the pathologized body that is in sharp contrast to the cosmetic one”. In Fox's case, the “ontologically real” becomes fused with the “cosmetic” body, as he was diagnosed at a young age and still continued to act despite progressing Parkinson's. Eventually, the role as Canning, designed for Fox and adapted to accommodate his illness, becomes too taxing and he indicates that it may be the end of his acting career (2020, p. 210). The disease therefore inevitably impacts Fox's career.

Having lived with the illness for a while at the time, Fox recounts how it was obvious in his mid-forties that his physical deterioration was “inarguable. I could do some things well, but not as well as I once did” (2020, p. 55). The time covered in the memoir spans mainly 2018–2020, but Fox reminisces his early days with the illness. It is therefore retrospective yet also future-oriented, looking ahead in other ways than just with regard to Parkinson's. Kafer (2013, p. 4) observes that disability is generally connected with a lack of future, as it is a future no one would desire, and she calls it an “ableist failure of imagination”. Fox's memoir to some extent counters such failures of imagination as some of his concerns and worries concern the process of aging which involves bodily and cognitive transformation for people without disabilities, too. He writes about his children growing up and leaving home, realizing together with his wife that “as [the children] began to create their own future, we begin to face our own mortality” (2020, p. 11). The life change brought on by children becoming independent adults is not connected with illness but with more ordinary rites of passage.

The memoir is therefore not solely centred on illness but also on aging and life changes that are unconnected to Parkinson's, serving as a subtle reminder that some form of bodily change, including impairment, is inevitable for most people who reach old age. This stands in contrast to Tanja Reiffenrath's (2016, p. 33) observation about how “writers of illness and disability memoirs take their ailments and bodily differences as their trajectories and focal points”, although Fox does write somewhat wistfully that he did not know he would go “straight from young to old” (2020, p. 62) and that to him, “movement always represented freedom” (2020, p. 65). The weight of Parkinson's and its consequences are presented as considerably more profound than just relating to a deteriorating body. The illness has warped time itself, taking away Fox's chance at regular adulthood before growing old, with the inevitable impairments that afflict most people. It has taken away his ability to move freely, to be at ease in his body and with his body in the world. This is where the process of grieving publicly can be detected most acutely, in the losses that are not just related to the illness and its consequences but to the parts of life it affects.

These losses are reinforced during a visit to Canada to see his 90-year-old mother. Fox marvels at the fact that she still drives a car, whereas he had to give up driving “almost a decade ago” (2020, p. 77), realizing that he had become a hazardous driver (2020, p. 78). Fox reveals feelings of envy concerning his mother who is still in charge of her own life, whereas he, the much younger person, is not (2020, p. 78). The issue of control emerges later as Fox addresses the toil of travel, particularly in airports, comparing himself to “luggage” wheeled around by attendants (2020, p. 121), implying loss of agency. Katrin Den Elzen (2021, p. 218–219) suggests that so-called “grief memoirs” with a complete storyline, a category into which Fox's writing probably does not fall easily, helps in the “rebuilding of identity that has been disrupted by loss”. In Fox's case, the loss is not confined to a single, tragic event, but a life-long process that began in his late twenties when he was first diagnosed, continuing for the rest of his life. Fox mentions side effects he had from some of his medicines interacting with “opiate anesthetic” after surgery, resulting in hallucinations, and acknowledges that the experience “gave me a window into what may await” (2020, p. 191). The progression of Parkinson's promises more losses, not just of physical mobility, independence, and control, but also of cognitive capabilities. The grieving process, therefore, comes to encompass losses in the past and those ongoing in the present as well as those to come.

Public Illness

Combining experiences and anticipations of physical and to some extent mental deterioration brought on by Parkinson's with Fox's celebrity status offers a few noteworthy observations. His celebrity status in the present moment is arguably tied to his work for Parkinson's awareness and research into the disorder. Yet, as previously noted, he is still celebrated for his acting career. In addition to the actor's CV presented in the memoir, Fox recounts a few encounters he has with people, for example when he injures his finger during travels, receiving medical care in Delhi, and the doctors want pictures with him (2020, p. 52). Some experiences in the memoir involve a degree of humiliation brought on by Parkinson's, as when he attends his daughter's graduation in a wheelchair, so proud of her accomplishments that he does not “give a shit about who sees me in a wheelchair” (2020, p. 137). The sentence indicates that the wheelchair is not easily accepted, and another more humiliating incident occurs when he trips and falls upon leaving a restaurant, “tempted to offer a sheepish bow to the now-staring diners in the establishment” (2020, p. 140). A disease so visible as Parkinson's therefore transforms not just personal identity and how to live with the changes brought on by illness, but also how to exist in the outside world, as public and private person.

Lars-Christer Hydén and Jens Brockmeier (2008, p. 2) argue that narrativizing illness is a way of connecting with others, with the hope that some may listen. Fox, as the high-profile celebrity he is, provides such hope to others, exemplified by an encounter in a shopping mall where a man, ex-military, recognizes Fox and tells him that he has been of help as the man suffers from PTSD and depression. Fox asserts that it gave him a feeling of gratitude, having been able to make an impact on someone's life (2020, p. 177). The encounter epitomizes the balancing between public and private, as the man shares his own difficulties, aware of Fox's illness and the challenges it presents. Contrasting the meeting with a visit to his father-in-law Stephen shortly before Stephen's death is less optimistic, as hospice supplies are delivered during Fox's visit by a delivery man who does not recognize the actor and asks who the package is for: “I was a little surprised at the question, although I admit I wasn’t looking too ‘Marty McFly’ in my sweatpants and old T-shirt, a few days’ growth on my chin” (2020, p. 196). The surprise at not being recognized but seen, potentially, as a terminal patient waiting for hospice supplies is both humiliating and foreboding, as Fox returns in the final chapter to his deterioration, writing that he has accepted having to use a wheelchair, comparing himself to Franklin D. Roosevelt and John F. Kennedy who did not, according to Fox, want to be seen in one (2020, p. 224–225). Fox states that he is not a president, just a “retired actor” (ibid.) and therefore has less to lose. He ends the memoir on a note of gratitude, expressing his gratefulness for all parts of his life, including “the unexpected losses” (2020, p. 226). The statement to some extent counters the presidential comparison, that he may not have to perform the formidable leader in front of other heads of state but is able to decline in the privacy of his home, with the occasional public outing. Yet, the “unexpected losses” Fox has to contend with manifest the grieving process, public and private. The stage he provides for Parkinson's awareness in the memoir is about personal recognition, about coming to terms with bodily loss which becomes a life-long process of grieving and acceptance, alternating constantly between the two.

Selma Blair: Living with Undiagnosed Symptoms

While Michael J. Fox's memoir emerged long after diagnosis, Selma Blair's personal account of her life with multiple sclerosis offers a different perspective as she was diagnosed in 2018 and the memoir was published in 2022, in the aftermath of her mother's death. The losses portrayed and the public grieving undertaken in the memoir are more immediate, a reaction to life-altering events, more in line with Den Elzen's (2021, p. 218–219) definition. The memoir follows the script of a childhood narrative of growing up, a troubled youth and young adulthood as an aspiring actor, and ending with diagnosis. Multiple sclerosis, or MS, and early signs of it are woven through the narrative, as Blair suspects at a young age that her body is not functioning as it should. In addition to MS, alcohol abuse is part of the illness narrative. Blair recounts visiting psychics, fortune-tellers, and tarot card readers throughout her adulthood, seeking “the story of who I would become” (2022, p. 1), desiring to know “what came next” (2022, p. 3). The future-orientedness is therefore not only related to progressing illness, but to understanding her life's trajectory.

The celebrity status of Blair is one of film stardom, appearing alongside actors such as Sarah Michelle Gellar, Ryan Philippe, and Reese Witherspoon. Blair outlines the productions that made her famous, moving from New York to Los Angeles and getting a part in Cruel Intentions that would see her career take off (2022, p. 144). The memoir is replete with stories of actors whom she has befriended or spent time with, such as Sharon Stone (2022, p. 152), Claire Danes (2022, p. 154), Jake Gyllenhaal (2022, p. 155), and her connection with Carrie Fisher (2022, p. 176). The acknowledgements section of the memoir lists celebrities that Blair wishes to thank, further emphasizing her celebrity status, worded by her in terms of having lived “through another golden age of Hollywood”. Yet, she states that she watched “the new greats making their mark” (2022, p. 156), indicating that she was more of a bystander, observing others rise to fame.

The bystander experience relates to more sinister events in Blair's life, as she provides a brief account of sexual assaults, having been raped multiple times, “more than I care to recall or admit” (2022, p. 126). The writer connects the repeated assaults with her drinking, stating that she drank “to disappear”, and “to numb the pain I was in. The mysterious aches and ever-present-pains” (2022, p. 128). The symptoms she was living with from childhood are represented as part of the alcohol problem she developed. Blair approaches these issues and their interconnectedness from a relational perspective, arguing that going back to the root cause of an issue is important: “I look to my family for signs of illness, for evidence of sadness” (2022, p. 19). “Sadness” indicates unprocessed grief in this context, suggesting that the attempt to “numb the pain” was about more than just physical discomfort. Although Blair was unaware at the time of the illness she was to be diagnosed with, the knowledge of it is present in the retrospective account, manifesting to some extent what Kleinman (1988, p. 8) refers to, seeing illness as “inseparable from life history”. MS and life at the time of writing the memoir guide the narrative, concerning life before diagnosis as well.

Seeking out answers from fortune-tellers is exemplified here too, as Blair utilizes her memoir to trace her family history and the causes of her illness and alcohol misuse, yet she retains certain distance to the text and her memories. This connects with the act of storying one's life, as Paul John Eakin (2020, p. 94) argues that autobiographical narration rests on “the opportunity to give a shape—however provisional—to the constantly changing reality of selfhood”. This changing reality is exacerbated by vague symptoms in Blair's memoir, such as headaches and pains in her face, the result of trigeminal neuralgia which she did not know at the time (2022, p. 88). A first suggestion of MS is offered by an ophthalmologist whom Blair visits in her early twenties after having experienced trouble with her vision. The doctor states upon examination that she suffers from optical neuritis, which can be a symptom of MS (2022, p. 138). Later re-examination shows that the inflammation is gone, leading the doctor to conclude that he was wrong. One of the many psychics she visits tells her many years later that she will one day become an advocate (2022, p. 184). While Blair does perhaps not occupy the same prominent space as Fox, at least not yet, she states in the acknowledgements of her memoir that she is “humbled and honored to be one part of a representation. I am an ally. Thank you” (2022, p. 301). The time elapsed since her diagnosis is considerably shorter than Fox's and does therefore not entirely compare, yet the memoir can be seen as written partly for advocacy purposes.

Diagnosis

The MS diagnosis is addressed at the end of the memoir, providing context to Blair's life story, while being something readers would likely already be aware of before reading. The memoir recounts Blair's pregnancy and the birth of her son, a period of brief respite with regard to her symptoms. Afterwards, her symptoms become more severe (2022, p. 221). Her son, too, becomes part of the illness narrative, as Blair finds out that he has reflex asystolic syncope and occasionally, she has to perform CPR to revive him (2022, p. 228). Meanwhile, her own MS symptoms continue to worsen (2022, p. 231). The culmination of her physical symptoms and substance abuse takes place on a flight home from a vacation in Mexico together with her son and his father, during which she is offered Ambien, generally used to treat insomnia, by a fellow traveller (2022, p. 233). The pill together with the alcohol Blair had consumed during the trip cause her to lose consciousness and nearly die during the flight, resulting in intense press scrutiny (2022, p. 234). The memoir does not give details about the incident, but headlines assert that she was “carried off flight after bizarre rant” (Tse, 2016), and that she “flips out on plane” (Taylor, 2016). The memoir therefore provides a chance of telling her (public) version of events. Blair explains that she was suffering from symptoms of her MS and “trying to self-medicate with booze” (2022, p. 234). Alcohol abuse is therefore attributed to undiagnosed illness and her mother's drinking habits (2022, p. 240). As Hydén and Brockmeier (2008, p. 2) assert, narrating illness provides “meaning to our experiences. Likewise, we order, and reflect about, events that lead or may have led up to the illness”. Mean Baby seeks reasons as to why Blair's life turned out the way it did, and the alcohol misuse is explained as a consequence of MS symptoms and parental example.

While Fox's memoir is temporally open-ended, Blair's is contained within the time span represented. She recounts buying a house for herself and her son, and adopting a dog which is soon injured and put down. The violent way in which the dog dies, potentially attacked by a hawk, “should have been a sign of some of the losses ahead” (2022, p. 243). The sentence likely refers to increasing symptoms Blair tries to manage, not being taken seriously by doctors. The memoir, therefore, like Fox's, anticipates what is to come, but it is not an “open-ended escalation” (Fox 2020, p. 7) yet, merely relating to the time span of the memoir and the diagnosis to come. Eventually, Blair makes a post on Instagram, which is read by Elizabeth Berkley, another actor acquaintance, who puts Blair in touch with a neurologist: “The scan was my new fortune-teller. The only one I needed” (2022, p. 248). Blair expresses relief at finally getting a diagnosis, acknowledging its power to “make sense of a plot you could hardly keep up with any longer” (2022, p. 249). The importance of diagnoses is observed by Chloe R. Green (2021, p. 639), who argues that diagnoses help provide “shape and narrative to an experience of illness”. Blair's memoir indicates that not only does diagnosis give shape to narrative, as the information impacts how the memoir is constructed, but that it shapes life itself, both before and after diagnosis.

Being able to see a neurologist via a celebrity friend emphasizes Blair's own celebrity status, having access to care that may not be available to others. The public and private dimensions therefore clash in terms of the incident on the plane which inspired unpleasant headlines, whereas being well connected eventually helps Blair get her diagnosis. The MS diagnosis does not lead to explicit grieving, as Blair notes that she was “too tired to be sad”, having no energy to be “angry at all the time I’d lost” (2022, p. 249). Paradoxically, the time before the diagnosis presents time lost. “A person is not just the sum of what has been lost or is about to be lost to an illness”, notes Michelle Chiang (2023, p. 957), and the comment rings true for Blair's memoir. The losses recounted appear to a more significant degree before diagnosis than after, referring to sexual assault, a demanding mother, early alcohol misuse and, eventually, the humiliating incident on the flight from Mexico. The MS diagnosis becomes a watershed not between health and illness, but between a life without control and one that suddenly takes shape and form. Blair's memoir, therefore, goes against simple notions of what constitutes a “good”, which is often seen in terms of being healthy or not too unwell despite progressing illness (Wendell 2013, p. 170). Temporality is here relevant, as it bears remembering that the memoir was published not long after diagnosis.

Blair's celebrity status changes, too, due to the diagnosis and the stem cell treatment she undergoes to manage increasing symptoms, including chemotherapy (2022, p. 259). She decides to make a documentary of the process, becoming for the first time the star and not the “sidekick” in a production (2022, p. 260), indicating that the illness has provided her with new possibilities for publicity. The documentary is done for advocacy purposes, to raise awareness of living with MS (2022, p. 260). A comparison can be made with Fox's advocacy work, and for example with Céline Dion's documentary from 2024 about living with stiff-person syndrome (see Coleman, 2024). The stem cell procedure requires quarantine, providing Blair with the insight that she “no longer felt tied to the mystery of death. […] I want to be here now” (2022, p. 262). Paradoxically, the illness and treatment with a long convalescence are depicted as reinforcing will to live, and Blair even goes as far as stating that “MS has cured me” (2022, p. 284), implying a healing process that transcends bodily boundaries. Yet, losses appear as well, as the final pages of Blair's memoir outline lost abilities, such as “short-term memory loss” (2022, p. 266) and “bad proprioception, from frontal cortex damage due to MS” (2022, p. 281). She ends on a positive note, refusing pity and taking responsibility for her life and illness, writing that “my disease is not a tragedy” (2022, p. 287). Diagnosis is therefore represented as empowering, with the acknowledgement that life with a progressive illness involves losses.

Conclusion: Willing a Way Forward

The temporal trajectories of No Time Like the Future and Mean Baby indicate that living with incurable illness can be seen, in the case of the former, as a process that continuously shifts between grieving and acceptance, and in the case of the latter, as the answer desperately sought for to make sense of life and eventually paving the way forward. Michael J. Fox and Selma Blair, born a decade apart, provide illness memoirs that outline the debilitating effect of living with disorders that can only be managed, in Fox's case a process that has been ongoing for most of his adult life as outlined in previous autobiographical productions. Blair's account is more immediate, centring on the need to find answers about life both past and future. Both authors to some extent fall into the category of “young and middle-aged people with chronic illnesses”, one which is “not easily understood or accepted” according to Wendell (2013, p. 164). People such as Fox and Blair remain productive members of society and still appear in various productions as outlined, and it is possible they will continue to do so for the foreseeable future. Disability and illness are therefore presented as trajectories, as both memoirs manifest the ongoing process that is life, and life writing, itself, creating and performing realities that are ever changing, just as the physical symptoms of their illnesses. The losses recounted include various physical and mental abilities that are slowly transforming or disappearing, and Fox devotes more space in his memoir to these transitions as he also tries to come to terms with his own aging and the growing up of his children. Blair centres on her childhood and rise to fame as an aspiring actor, always haunted by MS symptoms and alcohol use that shadows her narrative. The diagnosis is eventually presented as a relief, providing a way to living instead of dying.

The grieving process in both memoirs is a subtle, unspoken thread, with Fox being more up front about the difficulties in accepting that he can no longer run or drive a car, has lost his sense of smell and resorted to using a wheelchair more frequently. In Blair's case, the losses attach more to life before diagnosis, living with unmanaged symptoms, both physical and those of a more psychological nature. Instead of presenting illness as a disruption, Mean Baby introduces it as a stabilizing factor, giving shape to life and existence that previously suffered from diffuse symptoms. The private and public dimensions in both memoirs are minutely managed, in Fox's writing as an extension of his advocacy work for Parkinson's awareness, and in Blair's account as a tribute to the numerous A-list celebrities she met and befriended while working in Hollywood. Both writers draw on their pasts in the spotlight, reclaiming it a while longer to make space for their personal narratives of living with progressive illness and to reach out to others.

Both texts speak of privilege with regard to accessing healthcare and support, exemplified by Fox's assistants and Blair's stem cell treatment. Both writers possess significant cultural power as celebrities, well known to large audiences and with a platform to address how chronic illness is perceived and to help collect funds for research. The responsibility that comes with such a public role is taken seriously by both as outlined in their memoirs, yet the two texts also serve as reminders of the private life behind the public façade. A memoir is always selective, edited, and possibly even presenting a narrative that is partly fictionalized, but it draws upon real, lived life and carries the promise of authenticity, offering a reading experience that is both private and public, with the potential of informing readers of life with progressing illness and disability, as well as supporting those facing similar challenges themselves. The commodification of suffering that is an inevitable part of illness memoir, therefore, turns illness into a collective challenge without losing sight of the fact that for the person at the centre, Michael J. Fox and Selma Blair in this article, illness, along with the grieving process that accompanies it, is always deeply private.