By Jane Ridley
- Shava Nerad has a terminal illness and intends to end her life by refusing food and water.
- Her health-insurance company has denied the services she needs to carry out her plans.
- This is Nerad’s story, as told to Jane Ridley.
This as-told-to essay is based on a conversation with Shava Nerad. It has been edited for length and clarity
I once talked a good friend out of suicide.
We were both in our 20s and I asked, “If you could do anything in your life, what would you do?” He said he’d be a roadie and learn to do the lighting for bands. So I told him, “Quit your job, get rid of everything, and go try that.” Then I said, “You can always kill yourself later.”
He took my advice. He became a lighting director for some of the biggest musicians of the 1980s and ’90s.
Now, four decades after that conversation, and at 63, I’m the one who wants to end my life. I’m not pro-suicide, but I am against the idea of a meaningless life — something that I see in my future. If I was handed millions of dollars, it wouldn’t give me back my health. If you can’t do what you love and you are suffering pain all day and every day, maybe it’s time to go.
I need clearance from my health-insurance company before I can properly end my life
But it’s not as simple as that. I am not going to hang myself — it sounds awful. All I want is to go out on my own terms while I can still say goodbye. The best way for me to die is by voluntarily stopping eating and drinking, or VSED.
I believe it’s the most compassionate method of suicide — both for yourself and your family. It’s not painful — you’re hardly even aware toward the end — and your loved ones can be at your bedside if they wish. But before I go ahead with VSED, I have to rip up the red tape and change my advance directive. My health insurance won’t pay for the geriatric psych evaluation that I need to prove that I’m of “sound mind.” If I don’t get the clearance, I can forget about receiving any form of hospice care.
I had raging headaches and excruciating pain in my joints. It felt like the inside of my body was covered with hives. I was forced to leave my job as the director of a nonprofit software project. I used a walker because of my mobility impairments.
I think that my pain threshold is impacted by barometric pressure. I felt the best I had for years on a trip to South Africa in 2019. My symptoms seemed to ease in warm, dry weather. I moved from Boston to Fremont, California, the same year. The change of location helped — for a while. But if a doctor asked how I was feeling today, I’d say, “really, really, really terrible.”
Behcet’s tends to exacerbate any old or new injury. Right now, the inflammation is in my left hip. I’ll feel it in my shoulder, back, internal organs, and even my feet. I’m taking medication for diabetes and thyroid issues. I’ve tried vitamin D and herbal supplements. Nothing’s done a really great job. CBD eases the pain — or allows me to better ignore the pain.
I got COVID in January this year. I had even more pain and fatigue. A lasting effect was double vision, so I can no longer drive. The eye strain has restricted my reading and writing. I’m a retired journalist, so that’s particularly distressing. I sleep 18 hours a day. I only leave my house for medical appointments.
I don’t want to die a long, torturous death like my mother did
I decided to end my life last month. My 29-year-old son, Joseph, supports me. He knows I’ve been ill for 15 years, and I’m in decline. I knew that I was not eligible for any of the Death with Dignity laws. It was highly unlikely that a doctor would say I’ve got six months to live. Behcet’s is a slow, progressive disease. It could kill me by January next year — or when I’m in my 90s.
My mother died a prolonged and torturous death from Lewy body dementia — the same thing Robin Williams had — at the age of 94. She got squeamish thinking about death.
The only legal option I have available is VSED. The Supreme Court ruled that any person has the right to refuse treatment, including refusing hydration and nutrition. At the point that I stop eating and drinking, I can’t get medication to help me die, only medication to make me less distressed.
I don’t need the certification to move forward with VSED, but it’s an important measure. The advocates said that my decision would be much less likely to be contested if I got the legal documentation. The wishes of some VSED patients, they said, had not been honored.
But Kaiser Permanente, my HMO, has refused to pay for the psych evaluation. I said that I needed the referral to pursue VSED and receive hospice care. They have not been transparent about their denial.
If I have to pay out of pocket, it will cost tens of thousands of dollars that I don’t have. I’m a senior on a fixed income.
I feel that it’s time for me to go
It takes a great deal of strength to talk about options like VSED. We’re running into a lot of social taboos. It’s a product of how incredibly good modern medicine is — it’s hard for people to die. We’re so focused on prolonging life, we don’t talk about the quality of life.
I’d rather die at home with hospice care rather than in an institution. People I haven’t seen in years have come to visit. They’re happy to have the opportunity to say goodbye, which is how it should be. I have a dark sense of humor and say that we should light a few candles on my “unbirthday cake.”
I’ve led a good life and packed in a lot. I look back at Joseph’s birth and the first few hours that I held him. When I was to marry his dad, I made my own wedding gown. I loved dancing and climbing the mountains where I grew up in Vermont.
I want my death to be as gentle as possible, for everyone involved. I want to be as brave and determined and loving in death as I have been in life.
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