Although it is liberating to be without a central line, the reasons behind necessitating its end are not benevolent or demonstrative of revelational healing. The irony is that I hardly even used my line. The bureaucratic shortcomings of infusion companies, TPN pharmacies and what are supposed to be supportive services precluded me from getting the care I needed. I am outraged by the lack of sensitivity, integrity, respect and professionalism of in-home nursing services. In my quest to find appropriate TPN care, I contacted many pharmacies, explaining in detail my needs. They responded empathetically, promising to return my calls. I never heard from them again. The ineptitude of medical care cannot simply be a failing of intellect, it is a failing of morality. Because these and more problems happened repeatedly, it is not an aberration, but rather, a reflection of the devaluation of the lives of individuals with chronic illness. This is not OK. Luckily, I was able to pursue other avenues to improve my absorption so I was not TPN dependent. Many other people don’t have this privilege. A paradigm shift in the perspectives we propagate about individuals with chronic illness needs a revision. In order to serve people who truly need support, we must first recognize fully their complete humanity.
THE DAY HAS FINALLY COME! I just picked up the manuscript for my book! Holding in my hands the culmination of years’ writing, of tales of trauma I thought I could never live to share, of heartbreak pulverizing pulp–is such a heavy experience! This book is the most authentic and uncensored way to know where I have been and what I have survived. I am so grateful to the incredible team of artists and graphic designers who have skillfully collaborated with me to illustrate my words so precisely. Joy, joy, joy! What an incredible opportunity it is for me to experience my own words in this way. Stay tuned for the book release! YAAAAYYYY!
Please follow me on Instagram @brianabeaver1 for a sneak peeks and behind the scenes updates!
Here is the thing, I really don’t care. I know that many people with chronic illnesses encounter immense embarrassment with the use of mobility aids and central lines in public. While I can certainly relate to the unwelcome stares, judgment and probable castigation, the reality is that I have been encountering unwelcome assessment of my existence since the day I appeared on this planet. Having Cerebral Palsy matriculated me into a strange subgroup whereby people felt the need to insert their own opinions, suggested cures and ridiculous divinations since my kindergarten years. I have been approached by complete strangers offering prayer, reconciliation for my assumed karmic transgressions and unsolicited approval since my toddling days. Sure, I get mad, I craft flippant replies which I sometimes voice, I’ll bemoan the injustice of it all and then I keep going. So, when I recently made a lap around the local natural health food store with my giant urine-colored TPN bag in toe, I greeted each wandering eye with pride. I smiled, calling upon the reasoning my mother has offered since my childhood; they stare because you are so beautiful.
I find it curious that those who frequently castigate my writing have never been demoted to the fringes of survival. If the vulnerability and authenticity of my posts reminds the healthy of their own mortality, may that be a force for empathy and compassion, not judgment. Inauthentic positivity inhibits my healing and trivializes the torture that individuals with chronic illnesses endure to exist. Additionally, a prescription for positivity can literally be elusive for many physiological circumstances. A physical barricade for internal equilibrium can be imposed by many chronic health conditions. Instead of criticizing uncensored vulnerability, please lend support, offer to help or remain silent.
Some of you may know that I have been homebound for the past six years. My chemical intolerance coupled with my immunodeficiency have made it impossible for me to leave my home. I have been venturing out into the world again recently and although there have been paramount changes politically, culturally and environmentally during my requisite reclusivity, many things remain the same. It is nauseatingly evident that people still dismiss me because of my physical disability; that I remain invisible; that people address whoever I am with in regard to my well-being instead of consulting me. I used to believe that if I advocated enough, if I spoke up, if I excelled academically, then people would understand. I did. They still don’t. I graduated summa cum laude with honors and people still talk to me as though I’m two years old, or not at all. Regardless of my own attempts to solidify my humanity, people always reserve the right to ignorance.
One in three people with a disability is sexually assaulted or raped by a SERVICE PROVIDER.
Today, I could have been one of them. I was awoken by a knock at the door. This is the second time that this physical therapist contracted with Far Northern Regional Center has shown up without notice or arrangement at my HOUSE. I have signed no authorization permiting the release of personal information, let alone scheduled any kind of appointment. On what planet is it acceptable to show up at a non-client’s house? What was he expecting? That I would open the door to a complete stranger? That I would be home alone and physically unable to resist a forced entry?
The reality is that many people with disabilities do not have family members to physically protect them. Many individuals living in group homes or other assisted-living facilities are assaulted by the very people who are supposed to be caring for them. Because some of these individuals may be non-verbal or struggle to physically communicate, this violation may never be validated or followed up by legal persecution.
No matter how well intentioned, unsolicited medical and health advice waves crimson flags for me. In addition to simplifying the health challenges any individual is dealing with, a barrage of Google search treatments sent my way misrepresents the multifaceted individuality of chronic illness. Moreover, the subtext often feels to me like a disempowerment; as though someone else could orchestrate better my own healing. Perhaps one of the most terrifying popular patterns propagated within the chronic illness community is the urgent assertion that somebody else pursue the exact same treatment, in essence, a universal prescription. Not only is this dangerous, but it reaffirms the erroneous one size fits all paradigm for healing. Although I am happy to share about my successes and failures with chronic illness, I intentionally abstain from providing advice or recommendations. I do try, however, to be a supportive ally and transparent about the complex reality of chronic survival.
A lifetime of chronic illness has often made me an observer instead of a participant. As if conducting an ethnographic study, I view others with a curious eye. You wouldn’t believe how many people are “too busy.” They have work to do, papers to grade, money to make, somewhere, anywhere, to be but here. The vulnerability and limitations of chronic illness do not permit these distractions, challenging the normative production rat race. Someday the healthy people of the world will be scurrying ahead when tragedy strikes. Somebody they love will die, and all at once, the tedious multitasking will become heartbreakingly superfluous. Busy can wait. Life won’t. Be here now; be here now with those you treasure.
The diminished purchasing power of the dollar never seemed so macabre until that last dollar crumpled in your pocket is what stands between your life and your death. With medical insurance corrupted and virtually nonexistent, the unrealistic expectation to cultivate exorbitant piles of money to save your own life is omnipresent. Can I afford my medications, specialized diet, and keep the electricity pumping today? Tomorrow? Next week?