Giving Caregivers a Platform: Leigh, Mother of Melissa

Imagine a campfire built with logs of wood in a pyramid with a tinder underneath it to get it going. You ignite the tinder and blow on it to encourage the flame to rise upward and catch hold of the larger pieces of wood. A log by itself does not catch the flame, but the simmering tinder is always there, burning like an ember ready to expand. 

Now imagine that happening inside your head. 

This is known as kindling, a metaphor used to describe the worsening of withdrawal symptoms that can occur when someone repeatedly stops and restarts the use of a specific psychoactive substance. It is commonly associated with alcohol and benzodiazepine use and many other substances, including antidepressants and antipsychotics. And for those who live through it, it’s agony.

This is the story of a young woman who suffered through that agony and other drug-related harm, eventually dying by suicide. This is also the story of her mother’s path ahead, nurturing her deep grief and finding some peace with her daughter’s troublesome journey. 

Leigh and I met over several months as she filled in the story of her daughter, Mel, short for Melissa, to honor her memory and journey. While the whole story is compelling, I found Leigh’s quest for healing and living in her present life inspiring. We hope this story will also inspire readers who may have lost a loved one to find solace and hope in their grieving journey. 

Can you tell me a bit about your daughter and who she was as a child and in high school?

Melissa was born in France and lived there, going to an international school until she was 9, when we moved back to the US and she attended a bilingual French school. As a young child, she was an avid reader, devouring books in the fourth grade, which planted seeds for her love and belief in science and scientific methods. She never would want to hear an argument made from an anecdotal reference. The science had to back the argument, preferably a double-blind study. 

[In high school] Mel was always about making a difference and having an impact, from volunteering as a key player on the local EMS crew or being active in a Save Darfur campaign, where she committed to medical international humanitarian aid. She founded a Pet Adoption Club, which helped a local animal shelter. Even though she wanted to make a larger impact, she realized she could create the most meaningful change by focusing on a local shelter. She was president of the environmental coalition and she successfully lobbied the school administration to expand their recycling program. 

A well-rounded athlete, Mel was a travel soccer player, on the track and field team, and a sought-after dancer, even though she did not have classical training. An acceptance into a prestigious NY State Summer School of the Arts was proof of her dancing ability. 

After Mel passed [in 2017], a woman who was the coordinator of student affairs at her high school sent me a note acknowledging that Mel would have made a big mark in the world. She went on to express how Mel gave her a gift, a plaque of appreciation that she kept on her desk and cherished. Mel was very thoughtful. At her memorial service, her old boyfriend’s eulogy was all about what a great gift-giver she was, and I can attest that she thought a lot about what someone would want when she bought a gift.

It sounds like Mel had an impact on many people’s lives early on! Can you tell me about her college experience and when things began to get difficult? 

Mel was a voracious learner. As a bilingual individual from birth in France, she was thinking of teaching French with an online school called Udemy which I had never heard of before, and was in awe of her drive and abilities. 

In her sophomore year at university, she started complaining of sinus problems and was on 11 rounds of antibiotics, which I think killed the flora in her gut. After having a sinus operation to clear the issue, she started having panic attacks and anxiety, followed by depression. She was never again able to function at the high level she did before, sleeping a lot at first and then developing insomnia afterward.

 In California [after college], a doctor put her on anxiety medication, which was in a class called benzodiazepines. We know now that studies show these drugs should be used short term—and she was on them for 4.5 years.  

When I spoke to the doctor about trying something other than medication, he told me that he first was trying to calm her anxiety, and then she could try other more natural methods. I think that was a big mistake. 

Can you tell me more about your interaction with the doctor? What did Mel want to do? 

I just spoke to the doctor once. Mel was happy with the benzos in the beginning, feeling relaxed, as she imagined everyone else felt. I don’t think she realized how many of her symptoms developed due to years of taking benzos.

Did Mel understand what was going on chemically with her? 

No, I don’t think Mel realized how the benzos gave her brain zaps, made her have insomnia, and made her anxiety worse, especially after she had built up a tolerance. 

In college she started taking Adderall, an amphetamine, to help her study long hours. After college, the combination of uppers and downers [was] not a healthy one.

With benzos, a tolerance is built up when taken daily, so that the same dose is no longer enough. 

Doctors know how to prescribe, but most of them do not know how to deprescribe. We now know that a very, very slow tapering is required for many people.

Mel started drinking alcohol, as the benzos did not calm her anxiety, and both alcohol and benzos act on the same neurotransmitter in the brain, the GABA [gamma-aminobutyric acid] receptor. This combination made her depression worse.  

Melissa spent a little over a year in California after university, but that was probably not the best place for her. She tried Wellbutrin and it didn’t seem to work, so the doctor doubled the dosage, which immediately caused suicidal thoughts. Following her instinct, Mel drove herself to the ER. While in LA, she met some very shady types, and unfortunately, every man who met Melissa was enchanted with her, including the sketchy ones. She was not able to hold down a job, and finally, we had to bring her home to Connecticut..

She spent three years living with us, in and out of short stays in psychiatric hospitals, getting more and more depressed. There were periods of hope, with a four-month stay in a house operated by an intensive outpatient program. [But] it was at this program that the doctor cut Mel’s Klonopin from 3 mg to .5 mg within a very short period (two months), and she began feeling suicidal again [which can be a side effect of withdrawal from the drug]. See this resource for withdrawal symptoms. 

That drastic reduction was not a taper, and [again], many doctors don’t know how to taper patients. She experienced kindling and BIND (benzodiazepine-induced neurological dysfunction), a term that a nonprofit, the Alliance for Benzodiazepine Best Practices [ABBP], introduced. Kindling can cause anxiety, depression, insomnia, and a heightened sensitivity to light and noise, all of which Mel experienced.

She was able to hold down a job for a few months, but her self-esteem was shot. She had such high expectations for herself and could not accept living at home with her parents and not having an interesting job.

Mel was drinking more than we knew, and once, when she was drunk and staying with a male friend, I persuaded her to call a local famous mental hospital. And when she could not give her exact address, the hospital called the police, who picked Mel up. 

I had initially been so happy, thinking she was going to get the help she needed. Calling the police felt like a deep betrayal to Mel, and it made her never want to call that hospital again. And that is when the window of opportunity closed. 

I called the mental hospital the next day to give them a piece of my mind, asking them if they knew what they had just done. Calling the police on my daughter was not the way to get a person’s help, in my opinion, and by doing this, they ruined her chances of trusting a hospital to help her in any recovery. The young admissions woman with whom I spoke was slightly apologetic, but it was a catastrophe for us.

Refusing to see therapists, Mel thought psychiatrists were more highly educated because of their scientific background—and went back to her early instincts in the proof of science. At least that is what she told me. 

I found a psychiatrist she liked, but when she turned 26, the psychiatrist thought that she could no longer be on our healthcare plan. She advised Mel to get on Medicaid, which the doctor did not take, so she told Mel she couldn’t help her any longer. It was perplexing that this doctor left her in the lurch and didn’t try to help her find another psychiatrist.

When did it go downhill enough to end her life? 

Mel moved back in with us for three years, struggling the entire time except for [the] four-month stay at an enhanced treatment program [where she was abruptly “tapered” off Klonopin, starting a cascade of side effects]. She became so depressed she couldn’t leave her room and had very poor sleep hygiene, staying up all night and sleeping until noon. There were many police visits to the house; friends called the police a couple of times as she sounded so suicidal. Unfortunately, the police could only take her to the local hospital, which did not have a good psychiatric unit. She was given about seven different diagnoses, but the medical people couldn’t help. None of them knew that the benzo/Adderall, combined with alcohol, was contributing to the problem. We didn’t know she had been drinking as part of her coping mechanism. 

After Mel took her life, I realized that she was a victim of suicide, not someone who “committed” suicide, a phrase that is widely used and not a good description, as it has such a negative connotation—like committing a crime. I started reading many, many books on the subject of medication causing suicidality, like A Common Struggle by Patrick J. Kennedy and Stephen Fried. Stephen Fried told the story of his wife, who took one pill, an antibiotic in the Quinolone family, that caused her to go into a depression.

I also became involved (less so now) with the Alliance for Benzodiazepine Best Practices, at benzoreform.org, which works to educate the medical community and the public about the dangers of benzodiazepines. It has a lot of good information on benzos, including tapering. See their tools for patients and their Best Practices for Tapering, which includes information about tapering at 5 to 10 percent of the current dose per month, so that reductions become smaller and smaller. Another nonprofit, the Benzodiazepine Information Coalition, does good work to educate the public, and they have engaged with ASAM (the American Society of Addiction Medicine) to develop deprescribing guidelines.

I learned that not everyone reacts the same way to medications, and believe that doctors can do a much better job figuring out why that is and how they can improve their prescribing. Beginning with a blood test would be a good place to start to find out why people react so differently and what would be a potential path. 

On my healing journey, the grief groups did not help. Hearing about others’ grief was too difficult in the beginning. One grief group was composed mostly of women who had lost their husbands to suicide and were angry at them, which did not resonate with me.

I had no anger for Mel. I knew she didn’t know what she was doing and was not thinking clearly. I have a text she wrote to her boyfriend saying just that. So after a few months, I saw a medium who was the most loving, kind person and who changed my life. For about a year, I saw different mediums, but two stood out as giving the most evidential readings.

It’s laughable that some people think that mediums are fake and that they look up your loved one’s information on Facebook. The evidence that a good medium brings through includes situations that only you would know about and that certainly haven’t been posted online. Having readings was the most comforting thing, providing evidence of an afterlife.

I also had other healing modalities, including retreats, crystals, and participating in telephone sessions with other grieving parents. Emotion Matters was one group. Helping Parents Heal was another—and they have a strong Facebook gathering and an annual conference that draws a large crowd. Helping Parents Heal was founded by a couple of grieving parents who believe in the afterlife and openly discuss spiritual matters and signs from their loved ones who have died. I certainly have received many signs from Mel, although they are not coming as often now. I was interviewed by a Canadian University in Ontario on the many cell phone signs I received (they are conducting a survey of cell phone ADCs, or after-death communication).

I find solace in nature, as do most grieving people. I believe in a higher power, perhaps an energy field that healers, shamans, and mediums tap into. When Mel died, I knew that she would want me to try and be happy, to not ruin my life because she was no longer here in the body. So I vowed to honor her and to try and make my life worth living, as I wanted her to be proud of me. I dived into volunteer work, which I still do to this day. [And] I spoke with David Carmichael, a Canadian, who killed his 11-year-old son, while psychotic after taking Paxil. He spent four years in a mental hospital and now devotes his life to educating people about the dangers of antidepressants. His website is knowyourdrugs.org.

About after a year of deep grieving, I heard an inner voice that told me to look after myself, and that it was time to stop feeling so sad. It’s been over seven years and I still have ups and downs, but my life goes on, hopefully honoring her.