i waged war for this softness

thoughts on external & internal shifts in seasons, personal mortality & familial longevity, and waging wars for softness

i waged war for this softness, acrylic on Belgian linen, 2022

i’m currently experiencing the most debilitating flare i’ve had in months and it’s been surprising to both me and my family because…well, while i’ve had more mild flare-ups this year that did not last for very long, we all forgot how incapacitating they can become and how rapid the decline from one day to the next can occur. 

mentally, it has taken me back to the year pre-diagnosis when all i did was exist in excruciating pain and confusing, multi-system symptoms that doctor after doctor couldn’t make sense of. even now, there are things unfolding within my body that remain a mystery; they are highly prevalent yet stubbornly evasive of any clinical identity. 

i spent that year of unrelenting pain and the one after diagnosis in a state of rage at my physical body, feeling an acute sense of betrayal and a ravenous frustration that was just as inflammatory as any clinical marker flooding each internal system. i clung to it tightly as a defense; in many ways it felt like the only weapon i had to fight with. as illness brutalized my body and ravaged my mental and emotional health, i either raged back in defiance or sunk into gravity wells of despair. illness devours hope, it disembowels resolve, and it disfigures one’s self-perception. this type of disease can be a terrifying haint in large part because of its silence; its the not knowing from day to day when it’ll emerge that intensifies its impact once it does. for a long time i refused to let go of this rage because as much as it was destroying me, it provided a sense of comfort in the destruction i grew dependent upon to make it through some of the most painful days. i was eventually forced to realize though, that as comforting it was and as good as it felt to weaponize against my own body, psychologically i was hardening into an impenetrable fortress, locked inside of my mind with my pain with room for no one and nothing else. i found parts of myself fracturing into shards with razor-sharp edges, becoming impossible to hold onto to without wounding myself—or those closest to me—even further. weaning myself off of it, however, was only possible once i finally started to experience relief; even incremental periods of less pain gave me the energy to grab ahold of something other than the anguish that had nourished my growing bitterness.  

i’ve spent this last week sleeping in 4–5 hour stretches during the day in between moments with my family when i have slightly more energy to interact and operate as caregiver, partner, goofball, Mom. even when i am not sleeping, i have been mostly confined to my bed for the first time since january, which means i have either been bingeing seasons of television shows or reading to distract myself from boredom, pain, and a tacky malaise that refuses to release me. i started reading Seasons by Etel Adnan yesterday and was struck by a thought that began as a whisper but has grown to a shout over the last 24 hours: what if the changes in weather and land that we experience in our external environment are reflective of or parallel to the cycles and rhythms of living and change unfolding within us? and that thought has led me to consider this: if i viewed my experiences with autoimmune illness and rheumatic disease as seasons of death and rebirth, of breaking down and breaking through, as physical manifestations of the endings and beginnings i am experiencing even on a molecular and psychological level, would that help me maintain the softness it feels like i had to wage war for? would it make the moments my body is engulfed by inflammation feel more temporary instead of eternal? 

this morning my mother came for a visit. near the end, our conversation turned toward my 40th birthday, which is at the end of the year. we were discussing death and loss, and then illness and its impacts on longevity, specifically in relation to the women in our family. my grandmother died in her early 40s, and many others haven’t lived to even age 70. this is a fact that has crossed my mind almost daily since i turned 30. for the last 9 years, i’ve felt the need to grapple with my own mortality, almost as if my grandmother’s early death was genetic forecasting of my own, a warning to maximize living instead of survival, as i’d had to do for so much of my early years. the onset of autoimmune illness and rheumatic disease five years ago and its disruptive impact on my physical health has only deepened my awareness around this, especially as i watch my mother—who is in her 50s—battle through the same. she mentioned how grateful she feels to have the chance at greater longevity than her mother experienced and to be able to witness me making it to age 40. she also mentioned how her upcoming retirement is rooted in a desire to experience a life grounded in softness and centered around the need to care for her physical health in new ways that will hopefully not just extend her life but expand the quality of it. she shared how in many ways, her 40s is when she felt her adult life truly begin…it made me think that if each decade is a different season, your 40s must be a combination of harvesting that occurs in the Fall and the new beginnings that emerge in Spring. it’s like you’re able to take everything you’ve learned about yourself in your 20s and 30s and integrate it all into a foundational sense of being and purpose at 40…or at least that’s what it seems like from where i stand, four months away from this next stage of evolution. mentioning this brought us both back to the shared realization that my grandmother was barely done sending her youngest of six out into the world before she found herself on her way out of it. her last season of illness came as swiftly as death; she wasn’t afforded the time to recover and heal from traumas experienced as a young adult, nor her own initial battles with her physical health that were born from those experiences. after years of having to harden in order to raise children on her own while coping with the pains of personal traumas and impacts of oppression, she was denied seasons of softness and longevity. 

our conversation was hours ago but the thoughts and questions born from it linger as i lay here in bed again, my fingers loosely gripping my copy of Seasons. i can feel the discomfort and pain of inflammation raging in my joints, muscles, gums, eyes, and chest wall; i’m enveloped in a viscous-like membrane of fatigue that’s growing as thick and heavy as the storm clouds rolling in outside my bedroom window. i’m thinking of my mother and grandmother, of what it has taken for generations of my ancestral mothers to survive, of how cycles of hardening both brutalize and protect, of how parts of ourselves undergo death so others can actually live. 

in my most painful moments, i have used rage as a weapon against my own body. the severity of this current flare has gone far beyond my ability to manage or control, activating old impulses to harden in order to endure and protect against the pain. but that season has passed; this one requires learning to sink into softer ground—and embracing an understanding that even fallow periods can still be generative—as a defense instead.