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I'm Planning Rational Suicide. Here's Why |
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By the late Jessica Minerd-Massey |
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[Editor's note -- Jessica Amnity Minerd-Massey (1968-2023) was the daughter of Marion "Jean" (Stevens) Minerd and the late Jon Joseph Minerd of the family of Rev. William Mullen and Violet Pearl (Johnson) Minerd of Westmoreland, Armstrong and Somerset Counties, PA.]
I’m a 55-year old female, single mother of two adult children who’s planning rational suicide. In 2013, at 34 years old, I was injured in a workplace accident. Subsequently I underwent 15 major surgeries including five failed back surgeries, one failed Total Hip Replacement (THR), and one THR emergency revision.
I currently need five more surgeries; neck, hernia, another THR, another back fusion, and repair of a torn rotator cuff on my right shoulder.
I have a long list of painful diagnoses including Adhesive Arachnoiditis (AA), Spondylolisthesis (back and neck), Ankylolethesis (back), bone-on-bone vacuum phenomenon, Avascular Necrosis (AVN), and more.
I’ve had a lifetime total of nineteen major surgeries, of which I suffered from complications that ranged from mild to severe, during and after, with all but three or four of them. I’ve been coded (stopped breathing) twice while under general anesthesia, been mistakenly given incorrect medications, dosed with Narcan just hours after open back surgery, lost 20% of my bladder function, and more.
palette, in happier times
Courtesy of the family
Due to this I’ve developed PTSD, which is why, along with loss of financial stability, I have decided to forgo further surgical treatment.
I currently have several loose and broken screws in my most recent failed spinal fusion which is currently inoperable and causes further severe intractable pain.
In the past I was prescribed high doses of opioids that reduced my pain which allowed me to attend aqua therapy, land based therapy, chiropractic appointments, and Myofascia Release Massage, which altogether improved my Quality of Life and function.
However, in the mid 2000’s I was forced to discontinue my most effective pain medication, a prescribed opioid, by the Workmen’s Compensation (WC) insurance company. Due to perpetuation of the false narrative that prescription opioids are behind the opioid crisis and fear of the DEA (Drug Enforcement Agency) by prescribing physicians, I was force tapered off more and more of my pain medications.
In 2010 Workmen’s Compensation made major across-the-board changes that also disrupted my continuity of care and access to other proven therapies resulting in continued increases of pain. I also developed AVN in both hips due to being overprescribed steroids. I’ve undergone one THR on my right hip and currently need another on my left. The AVN is now extremely advanced and extremely painful.
By 2016, when the CDC published their opioid prescribing “guidelines”, I’d been force tapered to a very ineffective dose. In 2018 WC decided I needed to discontinue all my opioid medications, but I was able to fight in court to keep my prescriptions at the 90 MME (Milligram Morphine Equivalent) limit the CDC guidelines had suggested as the max dose for opioid naive & acute pain patients, but those guidelines misapplied by almost everyone, including the DEA.
When I was forced down to 90MME I was almost completely bed-bound, only getting out of bed to use the bathroom.
My elderly father was doing the shopping, cooking, ect. and I only left the house once a month for a doctor appointment.
My children were now old enough to fend for themselves, and did, but just because they can feed and dress themselves doesn't mean they don't still want, or need, parental guidance or input.
The last two times I was force tapered my doctor tried very hard to help me plead my case. She wrote letters and made phone calls to my WC insurance company informing them I wasn't “addicted,” that I complied with all “pain contract” rules, and wasn't going to “die” from the pain meds I’d been taking responsibly for the past 17 years.
She also asked my nurse case manager if she had ever looked at my imaging or read my patient file and told her I needed the medication in order to function. My physician also inquired as to what “alternatives” to opiates WC suggested and never received a viable option.
After this my lawyer finally told me the only way I’d get the care I needed would be if I settled my WC case and paid for it myself from the settlement. She also explained I was the first person, out of her entire career, with injuries as bad as mine, that she had ever advised this to. Years previously, when I’d asked about settling my case she’d actually scoffed at me and said “Are you crazy?! You’re going to need medical care for the rest of your life! You can’t work, how would you pay for it, once the settlement money runs out?”
In order to be allowed to be prescribed more effective pain meds again, I settled my WC case under duress and moved to Florida, from my home state of New York, with my ailing father.
I looked forward to the warmer weather, better access to swimming pools, physicians with more experience with bone issues and was hopeful about improving my pain & mobility issues.
The new pain management doctor I found in Florida, had agreed to continue my current care plan of slowly titrating my pain meds up to a dose I could again be more functional at. I even dreamed I’d be able to start making and selling my art glass again to help supplement my income further.
The increase in disability payments my lawyer had steadfastly insisted would manifest, once I settled with WC, was incorrect and I was left with an “income” of approximately $700/month after my insurance payment was taken out.
However, moving to Florida was not what we hoped, my father became ill immediately after the move and died five months later. The new pain management doctor had not fully reviewed my medical records and when he realized the amount of opioids I actually needed was too wary of the DEA and stopped any further increases due to fear of having his license revoked and possible criminal charges.
Even though I had settled with WC they were still a yoke around my neck and interfering with my care. I couldn’t find a Personal Care Physician (PCP) because everywhere I called I was informed it was illegal for a patient on Medicare to pay cash for treatment.
I settled my WC case through a “Section 32 Agreement” which means I would no longer receive wage money or have my healthcare provided for.
I was ordered by the WC law judge to open a Medicare Set-aside Agreement (MSA) in which a large portion of “my” settlement would go to be used exclusively for any medical needs that were a direct result of my WC injury. This meant, in effect, I was considered a cash or self pay patient.
The whole situation is very complicated and I don't have the room here to go into the minutiae of all that’s involved, but the end result is that it took me almost two years to find a PCP and the only PM (Pain Management) doctor I could find in FL, while still living in NY, was four hours away by car, from the house I was going to be renting.
The WC insurance company and the Center for Medicare/Medicaid Services (CMS) got together and decided how much money I would be ordered to take out of my settlement and put into the MSA account. I was told this “usually” comes to around ? of the entire settlement. However, in my case, my injuries were so severe I was ordered to use approximately ¾ of the amount. I was also told that CMS had determined, based on my medical history for the past three years, the money should last approximately 20yrs, before it ran out, and until it was completely gone I wouldn’t be allowed to apply for Medicaid, to help cover the cost of my disability injuries.
To summarize, I have several severely painful and progressive injuries/diseases that will not get better. This will only lead to further increases in pain and loss of mobility. It would also continue to increase my chance of a major stroke, heart attack/disease, Deep Vein Thrombosis (DVT) or something else that could cause almost immediate incapacitation.
When I first moved to Florida in 2020 I could still walk short distances (5-10 feet) using only one cane, for longer distances (10 feet-20 feet) I’d need two canes or a walker & anything over 20 feet I needed a wheelchair.
Now it’s 2023 and I’ve been unable to ambulate more than seven steps using two canes, while in extreme pain, for the past 16-18 months.
In April of 2022 I had to purchase a $22,000 power chair that has the ability to maneuver into the “Zero-G” position.
I’ve been unable to get into a bed for the past year and for all intents and purposes I “live” in a $4500 Zero–G chair in my living room, which I never would have been able to afford without the settlement money.
Very soon I'll no longer be able to ambulate the seven steps from my power chair to my handicapped toilet seat. I haven’t had a shower in over a year and the last time I had my hair washed was ten months ago.
I purchased a minivan with modifications so I could remain independent and drive myself to doctors appointments at a cost of approximately $45,000 as I’m physically unable to maneuver my body into the seat of a normal vehicle.
The slightest movements from my back, neck, and hip cause jolts of excruciating pain to shoot throughout my body. More often than not this pain subsides from a 10/10 ( on a scale of 1-10) to a 3 or 4 out of 10 in my Zero-G chair. I'm in my zero-g chair approximately 22 hours a day.
When not semi reclined in my zero-g chair I’m either sitting in the bathroom on my raised toilet seat or sitting in my power wheelchair for even short amounts of time.
The pain I experience is hard to accurately describe to people who have not experienced it. The majority of it is severe nerve pain, with the rest is musculoskeletal.
I can no longer move my left hip more than half an inch without involuntarily screaming out in pain, as it literally feels like my leg is being torn off my body, while the muscles and flesh are being torn away & my bones knock and click while a blow torch is being applied to the joint.
The broken and loose screws in my back, depending on which direction I’m moving, can cause pain that varies from burning, stinging, tearing, electrifying, zapping, stabbing shards of glass slicing through my skin, while dull heated metal rods are jammed into my lower back and neck, eventually slamming into the base of my skull, all the while white hot fragments of sharp pieces of metal fly outside my skin, wrapping & twining around my arms, legs, shoulders and neck while my fingers and face on my right side become numb, thick and throbbing.
This pain will not get better.
If I had been able to continue on the dosages of medication that had allowed me to access my different therapies ten years ago, I believe, I'd be in a much better place, both regarding my physical ability and my mental/emotional health.
But that did not happen.
Now all my future holds is increased pain, complete loss of mobility, continued loss of access to effective prescription opioids, homelessness, and/or being institutionalized in a state run long-term care facility, of which every single medical professional I’ve spoken with & has worked in that environment, has warned me against. My own experiences with short-term facilities further causes me to fear that end of life choice, as does the very real possibility of suffering a major stroke, all of which would culminate in very painful, long, drawn out existence.
Because of all this I’ve rationally chosen to end my life painlessly and quickly.
This is a decision I’ve not made lightly and have researched for many hours.
My family are aware of my choice and support it because they’ve watched me struggle and fight for care and witnessed my loss of quality of life.
My friends and family are all fully aware of my choice and support my decision. My adult children, who were seven and ten at the time of my accident, have grown up watching their mother lose her dreams of self-employment, mobility, autonomy, and the suffering of constant often excruciating pain. My family has watched me turn from a vivacious, energetic, independent, creative woman to a slow, sedentary, crippled old woman unable to even properly give and receive hugs from her loved ones. Severe pain does not only hurt the patient but also hurts everyone that cares about them too.
Promotion of stigma against patients who had prescription opioids in order to gain function and quality of life and the compassionate physicians that prescribed them and the repetition of misinformation regarding the actual data on use of and deaths from prescription opioids has led to not only the general public to mistrust and demonize the safe medications but many pain patients themselves, who will suffer greatly while their health declines and as they lose function.
Physicians are openly afraid to not only lose their licenses on prescribing passionate care but are also wary of the very real threat of imprisonment. Groups like PROP (Physicians for Responsible Opioid Prescribing) and Shatterproof are some of the most egregious purveyors of misinformation and while the name PROP sounds perfectly reasonable they are very much against all opioids except buprenorphine, and not for “responsible” use at all. Providing “expert” testimony like Andrew Kolodny who call prescription opiods “heroin pills” and who is against opiod manufacturing and also provided major input to the CDC while they developed their 2016 prescribing “guidelines.” These guidelines have been misinterpreted by many and adopted as “law” over and over again being completely weaponized by the DEA and used as doctrine for this latest crusade in the failed “war on drugs.”
Intractable and severe Chronic Pain Patients (CPP) are being openly tortured. Physicians are no longer allowed to practice medicine and treat patients based on their individual needs, forced to comply with insurance company mandates based on “guidelines” with 90MME suggested for acute and opioid naive pain patients explicitly saying they are NOT for CPPs.
By the time anyone else reads this I will be dead. Yes, I am afraid of the unknown, but I am much more afraid of the known I have been living with for the past twenty years. I have coined a term that I feel covers what has been happening to the CPPs in this country: Eugenocide (a combination of Eugenics and Genocide). These policies and laws are responsible for tens of thousands of deaths directly or indirectly, and include many veterans. To be clear, I’m not the only patient to choose suicide, rational or otherwise, and until the pendulum swings back the other way I will be far from the last.
*Disclaimer* -- Suicide is 100% legal in the US. Knowing someone is going to take their life and then being present at that time is also completely legal, as long as the person does every action themselves and nothing is touched once they have passed, and those people can not be arrested.
Copyright © 2023 Jessica Minerd-Massey. Published with permission of the family