(3-30-20) Dianne Hiltman is flying to Costa Rica with her adult son who needs mental health treatment. The reason why she has to leave the United States will not surprise you, but it should anger you.
On Our Way Desperately Seeking Help: A Mother’s Journal
By Dianne Hiltman
Mar 28, 2020
The plane descends in the dark evening, far away lights scatter the horizon and reveal the distant city. It could be any city, a metal tube filled with travelers, folks simply getting home, some people fulfilling business obligations, others just doing life.
But this airplane is landing in San Jose, Costa Rica and I am accompanying my 33 year-old son with mental illness there.
I manage a rueful smile. I’m certain I’d win betting that we are the only people on this flight because of mental illness. Then I remember all the times we have hoped in the past. The numerous medications. The yet one more fine and highly recommended psychiatrist. The clinical trial of IVKetamine therapy. So many hopes. Twenty two years of failed hopes.
I can’t quite “read” Matt this night.
He’s quiet, more so than usual.
He’s not as hostile toward me as usual. My best guess is he feels some mixture of anxiety and hope and is covering it all with forced nonchalance. Twenty two years of despair and failed hopes.
Never mind that we have dashed from Atlanta just ahead of an emerging pandemic. I heard the daily reports and moved up every detail of the plan by weeks. David Mair of CIMA Hospital in Costa Rica helped us coordinate. I’m not afraid of getting to Costa Rica and then being unable to get back home to a husband and second son. I am terrified to miss getting to Costa Rica for help before a new virus closes down the world.
Matt has lived with Treatment Resistant Depression since about age 11.
I don’t remember the date, but I clearly remember his solemn face, and him saying he just didn’t want to keep living. I’d noticed our formerly exuberant first-born becoming serious, settled, far less playful. Watchful, I’d attributed the slow change to maturation or some such. Until his quiet confession.
Some years weren’t too bad; some years were awful. He managed to graduate from a college prep independent school, then traveled for a gap year, working for room and board in France. He landed a job most young men envied, being a professional jouster (yes). He bought his own condo at 21, sported a fit and well trained body, and completed a BA in Philosophy (Magna cum Laude) while also working.
Many years, none of those accomplishments lessened the dark sorrow in his mind or dryed his irrational tears of shame and inadequacy. Even a couple of excellent girlfriends couldn’t relieve his loneliness and despair. I adore them both still, but don’t wonder the relationships ended.
We thought the worst was finished when he became psychotic at 29 and was hospitalized.
“Oh,” we sighed, “it was more than just Treatment Resistant Depression. It was Bipolar Disorder WITH Treatment Resistant Depression! Now, he’ll get the right treatment. Now he’ll be able to recover and enjoy life!”
Three years later, no relief yet found, he and I are about to land in Costa Rica, looking for help and hope in Central America.
Treatment Resistant Depression is often defined as a failure of at least two antidepressant medications.
My records aren’t complete, but I know of over 15 medicines tried. He’s also received a course of IV Ketamine therapy—two treatments per week for 3 weeks. He reported a couple of hours of relaxed feeling each time but the depression was not touched.
In these three years since his psychotic break, Matt has bought a gun and made serious plans to die by suicide. His father and I accidentally discovered the purchase perusing a credit card statement.
Last November, he abruptly took a dangerous quantity of a lethal medication.
I leaned over his gurney, in the ER hallway of the too-crowded charity hospital that he can access without an income. I held his wrist, monitoring his pulse as I watched him slip into sedation from the overdose. I’ve worked in that same hospital as a nurse. I understand the frenzy. I tried not to be annoying as I asked for a portable heart and BP monitor. But eventually the night shift charge nurse insisted I leave.
He spent nine days and Thanksgiving in that hospital and we were grateful. But he still wanted to die when he was discharged. He threatened to run out into a busy major highway. He still had no better hope than try to find a way to die.
The airplane wings do that shimmy and wobble thing, as they cut through denser air, carrying us all closer to solid ground.
I feel the clunk and hear the whine as landing wheels emerge from the bay. My hands tighten on the armrest, an old habit. But I am utterly unafraid of a plane crash; the thought of another possible treatment failure fills my eyes with tears.
His private psychiatrist, who we adore and pay for ourselves, recommended ECT, electro convulsive therapy. Dr. Todd Antin, trained at Bellevue Hospital and fearless in the presence of serious mental illness said, “I think you should start looking for a clinical trial for ECT.”
That was shorthand for “I won’t say this in front of Matt, and I know your family can not afford the $30,000 that a course of ECT will cost out of pocket, but there are no more medicines to try. ECT is all that can help him. And you can not take the chance with him to wait the 18 months for this next SSDI appeal to be decided. He may well succeed with his next suicide attempt.”
ECT. Once hailed as a certain cure, then feared as damaging, and subsequently derided as primitive, electro convulsive therapy is now moderated and administered with anesthesia and muscle relaxants. While the action is not completely understood, it’s thought that the repeated, controlled, induced seizures release a cascade of neurotransmitters, allowing the brain to overcome some persistent mental illnesses, including depression.
It’s in Matt’s hospital records: this patient could probably benefit from ECT. And he could get it in the US if he had any kind of insurance or if we could afford to pay $30,000. He’s been denied Social Security Disability Insurance 2 or 3 times, depending on how you count it. In our state, he can’t get ACA because he can’t work. I can’t find a clinical trial. Our family doesn’t have a spare $30,000.
In Costa Rica, ECT costs $1000.00 per treatment. In the US it costs $2500.00.
Even with airfare, lodging and food, the treatments will cost only half what we’d spend at home. It’s still an awful lot of money. Family and friends—without our asking—have defrayed the cost substantially. They know our struggle and they care.
Tomorrow, we have an appointment with Dr. Bernardo Castro Dobles at CIMA Hospital in San Jose. He is an experienced psychiatrist willing to take Matt’s case. The treatments will begin the following day. Dr. Allejandro Ugaldo Fernandez will administer anesthesia. We are here, we manage to joke between us, to electrify Matt’s brain, a brain that has been admitted to law school and nearly gotten itself killed.
Tonight, we navigate the brimming airport, a driver just outside, ready to ferry us to Costa Verde Inn, a lush traditional hacienda compound that will be home for several weeks. The air is cool and fresh. Air conditioning is not available but it isn’t needed.
We have flown to Costa Rica to get ECT. We don’t know if it will turn his despair to anything resembling delight. We do know that a global pandemic will eventually affect this country, but we have come anyway.
We have flown to Costa Rica trying to save a good young man’s life, because there is no affordable help for him at home in the United States.
(All individuals mentioned in this blog agreed to having their stories told and being identified.)
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