The prospect of not getting epidurals, injections and surgery I need to survive is more frightening facing surgery during Covid19, this like many disability issues that I can barely begin to describe, crying a lot, but I need people to get what #HighRiskCovid19 is
Being #HighRiskCovid19 means suspending all your non-essential but still important care and suffering in wider multitudes to find out your essential care may also run out and facing confinement to your bed and/or death as you couldn’t get that care even if you go to the ER
Being #HighRiskCovid19 is coming to terms with if your neck, spine and related skeletal and neuromuscular systems collapsing can wait and to which extents, realizing you’d need to risk Covid19 or you could die, in a Mexican standoff that’s predicted to last months or years
Being #HighRiskCovid19 is running probability on which facilities and specialties you’re more likely to contract it from, knowing no urgent care, ER or hospital under duress have time to research, remember, believe your DXs, protocols, meds as they often didn’t before Covid19
Being #HighRiskCovid19 is a battle of strength and wills and truths, loved ones and yours, try to sink in the chance you won’t see them again, this time worse than before, reconciling a virtual birthday you’re not sure you want and never certain you’ll have
Being #HighRiskCovid19 is apologizing to your roommate for being the only person besides your home health nurse who will help you if more care falls, if you get worse or die. “If discrimination didn’t cost me my job, if I wasn’t sick, if my family wasn’t ableist” “Don’t be sorry”
Being #HighRiskCovid19 is trying to do a small and good thing like a garden to sustain your mental health and feed your roommate, weighing the cost on your body and recovery tolls not worth the effort, the line between muscular degeneration and points of no return
Being #HighRiskCovid19 is seeing millions of people “get bored” when you’ve been mostly home and bedbound for 3 years, working from home denied to you immediately granted to abled people, who don’t care medical and food and government systems are even more inaccessible for you
Being #HighRiskCovid19 is being patient with loved ones upset about not being able to pop into the store, when it took you 5 brutal hours last time you tried, as other loved ones run errands for them but you’re “too young” to “really need help” “try harder” “smile” “we’ll pray”
Being #HighRiskCovid19 is seeing a ton of jokes and thirst traps, wanting loved ones to cope but knowing you exist outside social or sexual realities to them, that 85 percent won’t date disabled people while 25 percent are disabled, ableism internalizing lateral ableism fiercely
Being #HighRiskCovid19 is a bunch of messages and calls from people, you’re burned out but want to and do triage their needs, trying to forget saying “I’m scared” “I need you” “I miss you” “I love you” “Please” to empty air, unreplied DMs, one liked status, forgotten invites
Being #HighRiskCovid19 is teaching, reminding, fighting for everyone to get extended prescriptions, teledoc or reschedule appointments, write wills and DNRs and instructions, make or get masks or gloves or dinner, but no one offers to do this back, and you’re too empty to ask
Being #HighRiskCovid19 is explaining to ER staff while it’s despicable they’re facing lay offs and pay cuts, US laws and leaders have and will let disabled people who “don’t qualify for resources” die, of course we’re not risking going to the ER unless we’re certainly dying
Being #HighRiskCovid19 is being so below the poverty line in Social Security you don’t have to file taxes, watching a weeklong congressional national fight, will I have to find and pay an accountant I can’t afford (as software rejects you) for minimal Covid19 relief so I can eat
Being #HighRiskCovid19 is seeing everyone buy meds, vitamins, food, fluids, supplies I need when world leaders give dangerous medical advice news colleagues choose to televise, when people who can won’t buy filters or boil water, when people who can won’t stop eating GF, LF, SF
Being #HighRiskCovid19 is checking if my mom and (undergrad) sibling who are essential medical workers need supplies and PPE I also need, weighing their flareups and needs against mine, hoping family genetics is kinder to my sibling, that we all live to see them graduate
Being #HighRiskCovid19 and seeing another sibling managing traveling nurses, too slammed to talk shifting nurses around the US, nurses who quit facilities for never getting cost of living raises, vilified by health care managers who lay off and slash pay for other nurses anyway
Being #HighRiskCovid19 as another sibling has patients like me in clinic and conferences, high risk in many ways, incredulous at colleagues before Covid19 not going the full mile (nevermind extras) for disabled patients, thinking about others first even as LA outbreaks grow
Being #HighRiskCovid19 and telling my mom to not fly in for a critical follow-up, seeing how this was falling out early, knowing she would risk me or travel would risk her, her living what I’ve lived for almost a year, now she can’t travel and is trapped too
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