There’s a new lexicon added to the modern canon of dictionaries or repurposed words that came to take on new meanings. Yet for those of us with metastatic or terminal cancers, many of the words applied to us prior to February of 2020.
Defining a Lockdown
“A lockdown can be defined as an emergency protocol implemented by the authorities that prevents people from leaving a given area. A full lockdown will mean that the people in the given area must stay where they are and must not exit or enter a building or given area. A preventive lockdown is a preemptive plan effected to address an unusual situation or weakness in a system to forestall any danger to people, organization or system. The nature of the lockdown protocol ordered at a given time will be based on the type of threat and will feature the required flexibility to handle the situation faced during the times.”Business Insider, May 26, 2020
Lockdown, shelter in place, masking, vaxing, food stashing, toilet paper hoarding, economic disaster, socioeconomic and racially dividing, separation of rich and poor. Isolation, loneliness and a fear for many of us with compromised immune systems.
Do you feel like coming out of the pandemic we will find a “new normal?” Perhaps we never truly had a normal from which to come back? I do consider Covid as a global disaster – especially given we all had to shelter in place, a nicer way of saying lockdown. A new “abnormal.”
I’m reminded of my diagnosis and the day before and the day after. Remembering one day I had a life with plans. Excitement to start a new job in a new field that would have begun that very day, March 25, 2015. Excitement changed to fear. I emerged from the sterile walls of my hospital room after a week-long stay, stripped of everything that I knew about life, but life would never be the same, blown up into a personal disaster. A disaster of one – so what does that matter. I was one of many that the people of the hospital had released like kicking a baby bird out of a nest and watching as we either hit the ground or spread our wings to somehow catch the wind and fly.
Tonight there’s gonna be a breakout
I din’t hit the ground. It was flight from fright. The things that cause PTSD, running away from the doors of the sterile, incarceration that I found myself with bag in hand, on the curb, waiting for my husband to pick me up. Like the vision of the prisoner at the gates of the yard, but on the side of freedom. I wasn’t facing a from of freedom. At least a prisoner has something to look forward to, when I had only chemo and other poisons and a slow death ahead.
There’s nothing “normal” about living with death looking you in the eye and winking at you. There’s nothing new about death but our existential struggles come to the foreground immediately upon hearing the words, “I’m sorry you have stage four cancer. There’s no cure. We will be in touch.” And then there’s the stressful wait between diagnosis and when we begin our first lines of treatments. I was told “there’s no rush be patient.” Time out. If the person delivering such hard terms had been given a life sentence, I doubly they’d have the patience to wait to see their first oncologist.
Waiting for Results
It’s akin to the first time we have a scan. We’re left biting our nails waiting for the results. It’s like the first time we have doubts that our oncologist may not be right for us, igniting the need a second opinion and possibly a change in medical teams.
With Covid there’s the wait and see messaging that turned out to be not only incorrect but an attempt to shift the blame for the increasing number of diagnoses and the rise in deaths. We had to wait and see if we needed to be tested. When the “lockdown” came in the United States it was too late to avoid the “China Virus,” as the Trump administration called it.
And then cancer patients had to wait for treatments, watching clinical trials being postponed. And worse, not being able to use most public forms of transportation halted or cut back to a bare minimum. It’s still risky business betting our lives when we embark on a flight.
The waiting doesn’t end with what’s in store for us after we’ve found our first oncologist and been on our first lines of treatment. Mine was Xeloda (capcetabine) – an oral chemotherapy, the therapy that turned my sister into a nonbeliever because, “there’s no such thing as chemotherapy in a pill form.” It was on that she’d decided to tell everyone back home I was full of shit. Erasing anything that was me from the end of my mothers life, including her funeral. How sad that by being uneducated about the new forms of medications and having the imbued veracity of being a nurse could create so much familial discontent and disparities.
I’ve long forgiven her.
What’s the point of dragging along more baggage into this the end of my life. What she did not see were my appointments at the infusion center for subcutaneous Zoladex, which took away the last of my femininity by putting me into a chemically induced menopause, akin to chemical castration for men who are serial rapists, and in years long ago, men who were “caught” as gay in the United Kingdom.
What did I do to be forced into chemical induced menopause with get injections of Xgeva and subsequently Zometa to improve my bone strength and reduce the calcium in my bloodstream caused by metastasis to the bone.
A return to the real world
With no job to start I also had to redefine my life, which I’ve discussed in many posts on the blog. However, nothing about retiring at 49 is normal. Nothing about social security at 50 is normal. Nothing about medicare at 52 is normal. Nothing after a cancer diagnosis is normal again so there’s no new normal to answer to.
Nothing about this new life is normal whatsoever, and finding people who understand at first is not only daunting, but many of us are left completely alone in our trauma – emotional and physical. Some of us are lucky enough to have a strong family and friend network that surrounds them with love and care and stays with them. Others like myself, lose their entire lifetime of people who I thought would be there for me should the event that we fear the most become a reality.
Lockdown in Isolation
The question of a new normal, however, creates a number of subsequent inquiries that we must ask of ourselves. Questions such as, how can I learn from what’s happened over the last year and a half? How can I make a difference so the world that I have occupied since birth remembers my presence? How do we help people feel like they’re not alone?
Not being connected to anyone in any way is part of being in a deep depression. I’ve not myself personally suffered with depression, but I’ve experienced the isolation that my husband and several close friends place themselves into during a serious bout. It’s not anything I’d ever want to experience myself. But I had during the last 19 months.
Importantly, how do we guide the public memory of this time as the guardians of lessons we learned as we emerge from our homes and into the world again?
Personally I don’t think I ever left the world. In fact I found ways to create a community using technology at my disposal to learn, to teach, to write, to heal, and to solidify friendships that have become an integral part of my everyday life. All of those cherished experiences will travel with me into my everyday life, regardless. But I’m lucky I have an iPad and iPhone and a laptop I’m locked out of having forgotten the password! And internet connectivity and 5G In case I’m unable to get access via an ISP. I’m lucky. So many people don’t have infrastructure to use. Socioeconomic disparages between countries and even our own United (ahem) states have become glaringly evident in my mind, due to the current “gifting” of multi-billions of dollars of vaccines by our government to poorer and even first world countries? It’s akin to the disparity between health care in cancer between socioeconomic and racial groups in our own country.
Is it as shocking to you as it is to me that our freedom is based on our ability to access healthcare, and more specifically that there’s no charge for a vaccine against covid?
Why isn’t cancer care free then? More people will gave died globally from cancer than Covid in the duration of the “viral pandemic.” The injections are free of cost to the entire population Purchased by governments. Then why iif productivity is such a problem with Covid is it not recognized as such a problem with cancer? I believe that if we looked at the economics closely we find that we would have a higher increase in productivity and a lower increase in overall cost of healthcare if we were to give people the care that they needed for cancer and the early detection that was required to avoid stage for diagnoses like my own.
How to find freedom in a prison or at least on house arrest? And we were in a lockdown of sorts. Prior to covid lockdown described a state of emergency in prisons, when all prisoners stayed locked within their cells to avoid a riot or violent breakout. I noticed that the word lockdown shifted out of prison and into the public global domain during covid. Online dictionaries, Wikipedia, and all the ethereal and digital data l can find refers now to periods in time in which hopefully at the tail end.
The fungibility of language has never been more evident in my lifetime. Look up the word lockdown in a printed dictionary. Tell me what you find out, especially in other parts of the globe than the United States. The dictionaries haven’t a way to be edited once printed so there’s proof that language is not interchangeable. The word is not exactly the same as what it means in a prison as it means in a state of global emergency when a disease that could kill those who contracted it by interaction with people in our communities, on airplanes, or even in our own homes by celebrating with our families holidays and birthdays and anniversaries. Interruption of happy times with physical proximity taken for granted.
Thus normalcy cannot define what we’re entering in this new era post covid. I have thought long and hard about this, and recall only that wen I came out of the hospital with my diagnosis paperwork like a diploma or release papers from prison, I heard the words “new normal” thrown about at me like confetti at a parade.
Living for months or years in isolation can psychologically damage even the most mentally resilient individuals. In Madrid v. Gomez, a landmark case involving conditions in California’s Pelican Bay supermax prison, Federal District Court Judge Thelton Henderson observed that twenty-three-hour isolation may press the outer borders of what most humans can psychologically tolerate. Placing mentally ill or psychologically vulnerable people in such conditions is the equivalent of putting an asthmatic in a place with little air to breathe.”(Editorial, Inhumane Justice, ALB. TIMES UNION, Oct. 23, 2002, at A10)
I wasn’t celebrating then, and I’m not celebrating now. The experience of gratitude, the feeling of surprise at the kindness of strangers, and the willingness of organizations and individuals to participate in shifting activities immediately to an online format so that participation could continue was stunning. Some arrangements were wobbly at first but eventually became smoother over time. The greed, anger, mismanagement and profiteering of maligned individuals and organizations also surprised me. How can anyone even want to take advantage of people desperate to se their families or in need of medical care that wasn’t available to them because of the resources of hospitals and other facilities weren’t available.
Hope for Freedom
I hope there’s something new in our futures. I really do. I hope that there’s a more humane scope of work ahead of us as people, families, friends, corporations and governments. But the pandemic has shed light on so many problems and the trickle down of the lack of important resources to those who need them most won’t be tallied up for many years to come. The statisticians should be having a field day with their crystal balls and spread sheets.
I hope we can breathe a sigh of relief soon, but the economy isn’t even ready to have a nervous breakdown yet, though it will in my opinion. As usual, the rich will get richer and the poor and underserved will become more devastated as a result. I remember when art and music weren’t going to be taught in my step kids schools anymore due to lack of funding, and now we’re seeing the results of that in so many areas of life as they grow up into the next generation of workers.
Writing for Our Lives
But poetry has seen a lot of attention, if you’ve noticed lately. Which brings me back to the point. There’s no such thing as normal. There’s medians and lots of averages but not normals. Everyone’s different, of that I’m very sure of, but will our differences cease to be what makes us unique and keep us in a kind of lockdown in our society that we may never emerge from no matter the rule set?
I really have hope – in this moment. The future is only ours to foster now that we’ve arrived in it. I suppose Elon Musk isn’t so crazy after all, and someday our children will indeed call themselves martians, the stuff of science fiction and dystopian tales of futures past.