“I’m getting my Look Good Feel Better bag soon,” Lindsey said excitedly. “It’ll probably arrive by the next time you are here!” Lindsey, my big sister was 57 and had already been living in hospice for a number of months. I had spent the fall with her, accompanying her through her recurrence of ovarian cancer.
Only a few months earlier, we had heard the sweetest words from her oncologist: no evidence of disease. In true sisterly fashion, we celebrated with a shopping spree for makeup and skincare. Unfortunately, distressing headaches and dizziness followed, caused by a rare and devastating 5.5 cm brain metastasis. Soon we realized that no more treatment was possible, and that Lindsey could be best supported in the home-and community-like environment of a hospice.
I had spent most of the fall sleeping in her hospital room or helping her recover at our aunt’s house in Alberta, but now that she was settled in hospice, I visited from BC for one week of each month, taking up residence in the hospice guest room, drinking in all that precious time, and doing what I could to amuse, ease, support and facilitate... all of which felt like everything and nothing at the same time.
Makeup, skincare, makeover shows, these were Lindsey’s happy place, and we spent *hours* in hospice binge watching our favourite fashion series, researching the latest skin care, and discussing other people’s and our own (sometimes lamentable) fashion choices. It all represented the Land of Normal, the place of laughter, fun, possibility and transformation. And it also represented our old selves as sisters.
When that big Look Good Feel Better purple kit arrived one day when I was visiting, we dove in as if it were Christmas Day. Every product was spread out on her bed and table, tried and exclaimed over. Lindsey read every word of the accompanying materials and we both remarked over and over about how generous this gift was. It was just that – a gift.
For me, it was not just a chance to see Lindsey happy and excited about “goo” as we called all makeup and skincare, but it was a blessed opportunity for her to be… her. It was an opportunity for Lindsey to embrace her newly grown-back short steel grey pixie cut and set it off with a bold lipstick, for me to gently fill in her brows and add some colour to her pale cheeks, and then to capture it all on my cell phone camera.
Maybe everyone who receives LGFB’s Big Purple Bag has this type of story. I hope so. We called Lindsey’s time in hospice her butterfly days, in part because during those five months she more fully embraced who she was as an autistic person, fully owning her unique set of communication, processing and sensory needs. She also became more comfortable in her own skin and her own environment, which had somehow aligned perfectly to suit her needs and wants. She fiercely loved her curves, her green eyes and her sassy post-surgery new haircut. She loved the hospice volunteers, the supportive cancer care programs, audio books and her chair workouts -- catheter, walker and all. Her room was filled with home baking, soft quilts, family art, photographs and cards. She enjoyed the other residents and was sure to have chocolate for breakfast every day.
As we know, autism is a spectrum, meaning that each autistic person has a unique combination of traits, need for levels of support, interests and abilities. These also can change throughout a person’s lifetime. Cancer can change things radically once again, requiring adaptation, education and re-evaluation on the parts of the patient, healthcare providers and loved ones.
Hospice life worked well for Lindsey’s deep need for routine and predictability; regular meals and cleaning schedules, friendly health care and support staff who she got to know. Hospice was far quieter and calmer than various areas of the hospital that had defined much of her cancer experience. Her sensory needs were not overcharged and over challenged by constant announcements, bed alarms, and IV poles dinging in the background. In hospice, she could socialize and access her cancer care programs one-on-one. The less hurried medical check ins with familiar healthcare providers allowed her to participate in all these more fully. This led to more time and space for her own decision making and consent about crucial medical and legal matters to occur in a supported and calm environment.
I am still balancing grief and gratitude. It seems ironic that this “ideal” environment for an autistic cancer patient occurred during Lindsey’s last five months of life. Was she leaning into an end-of-life freedom and joy and pride in her newfound “love me or pass me on by” kind of attitude? Seeing her goofy/ laughing/ everyday coral lipstick wearing/ hour-long facial every night self thrilled me after five decades of watching her be clipped, quieted, silenced, ignored and misunderstood.
I was equally astounded and delighted by her newfound love for musicals and micro gardens, her joy of favourites cat memes and long wanders down memory lane retelling favourite family stories. She abandoned her earlier cancer self-talk of “I should be wearing a wig” or “I should care about the weight gain from the high dose steroids”. She prioritized her sense of self and reveled in the most luxurious self care routine she could wrangle. Look Good Feel Better was an essential part of these butterfly days, and for that I am forever grateful.
