LateFIRE Chapter Three: The Price of Mental Illness and Addiction

Catchy title, that…nothing like mental illness and addiction to make you feel all warm and fuzzy inside, right?

Yeah, well.

This is not the post I was going to write. I wanted to write about pensions, Social Security, and money tied up in our home’s equity.

However, my husband and I recently went to the movies and saw Beautiful Boy, with Steve Carrell. It is the story of a father’s desperate journey to save a son from his own drug addictions. I don’t really know why my husband wanted to see it; it was a brutal movie to watch. Yes, it was an “important movie,” and it was well written, acted, directed. Realistic, yes. Too real, actually, for my taste.

This is because, as it happens, I have a bit of experience and knowledge in this area. I lived this “dream” in my own home. To begin with, I can tell you three things:

1. Beautiful Boy is authentic.
2. Drug use and treatment are extremely expensive.
3. The whole thing gets hella worse than what the movie showed.

Because I deeply respect the fact that I can only tell my own story, not my child’s, that is what I will endeavor to do, staying out of the nitty gritty details that are not mine to tell.

Plus, what I want to tell you about is the financial side of addiction and mental illness. The parental financial side, specifically. The rest is a very huge story, that I will only fill in with broad brushstrokes so as to set a context.

Before I tell you more, I ask you: Do you think that this is only the story of my family, and not yours? First of all, someone affected somewhere in your life probably comes immediately to mind. At this point in history, there are few US families untouched by mental illness and/or addiction.

Second of all, these two issues represent a tsunami breaking on shores we all share, even if your particular family is still blessedly untouched: life expectancy recently declined in our country for the second year in a row. The last one-year decline in life expectancy was at the height of the AIDS epidemic in 1993; The last two-year decline was due to an influenza outbreak, 1962-1963. Why is this happening now? Drug overdoses.

Among adults under the age of 50, drug overdoses are the number one cause of death. Number One Cause of Death. Are you under 50? That’s you. Are you over 50? That’s your kids. Specifically it is opiate overdoses that are killing us, which broken down by “flavor” are:

• Fentanyl and other synthetic opiates, which more than doubled
• Heroin, which increased nearly 20%
• Other opioid painkillers such as hydrocodone and oxycodone, which increased 14%

According to preliminary data from the Centers for Disease Control and Prevention, more than 72,000 people in the US are predicted to have died from drug overdoses in 2017 — nearly 200 a day. That’s up from 2016, which was already a record year in which roughly 64,000 people in the US died from overdoses. At least two-thirds of drug overdose deaths in 2016 and 2017 were linked to opioids.

If the estimate holds, it means drug overdoses in 2017 killed more people than guns, car crashes, or HIV/AIDS ever killed in a single year in the US. As with 2016, the 2017 death toll is higher than all US military casualties in the Vietnam and Iraq wars combined. (as quoted)

Suicide is the second leading cause of death in people ages 15-34. These deaths represent just one depiction of mental illness, and these two causes – overdoses and suicide – are inextricably intertwined.

I won’t even try to assess the cost of these two issues as public health concerns.

That is the big picture. My own picture is smaller, painted within a frame of ordinary life, on an ordinary street, in a pretty ordinary city.

The beginning broad stroke of our story is hard to paint, because it is hard to pinpoint the beginning: where did the pain start that led to the drug use that led to the horror? As a character says in Beautiful Boy, the drugs are not the problem; the pain is the problem, and the drugs were chosen as the solution to that pain.

So, briefly…

We were an ordinary suburban family: married parents, stay-at-home mom, working dad. No drugs, minimal drinking. PTA. Room mom. YMCA. Soccer and dance after school. Camping trips. Organic produce and early bedtimes with children’s books. Ordinary struggles, doing ok, hopeful of good futures for our kids.

Nonetheless, things started to go overtly off track for our second daughter while she was in middle school (although she told me years later that she had begun to think dark thoughts about herself, especially focused on her weight, by fifth grade). She hung with a fierce “popular” crowd, but the parameters of that popularity and the alliances within the group were always changing. It was an “in-one-day-out-the-next experience,” and social media made the whole circus highly visible. Brutal for a girl who felt everything, and took it all to heart.

To my daughter, no one was overweight, or lonely, or insecure. No one struggled…except her. She once told me (at high volume), “What were you thinking, raising me here?!? Everyone is rich, and pretty, and a size zero!” Everyone, as she saw it, except herself.

Of course, that’s a lie: everyone suffers struggles in some way or another, and “perfection” is but a mirage. Nonetheless, for someone highly sensitive, already feeling “other than,” middle school was painful, and high school was even worse.

We live in one of those parts of the country and this state that at first glance may seem populated by only beautiful people: orthodontia for everyone. Not just soccer, but All Star soccer. Kids do a lot of activities, and they start young. They join expensive club teams for sports and dance, and get extra private paid instruction, so by the time they hit high school, kids with “extra” dominate the teams. When I was in high school, it was very common to go out for a team as a method of trying a new sport, making new friends along the way. Here, not so much. My daughter trained all summer for Cross Country, and got cut at tryouts by five seconds.

Once she got cut from Cross Country, there went the new friendships she had formed with other runners, bonded over a grueling summer of hard training. These new friendships had allowed her to reduce her huge new school into a manageable size, and find friends to eat lunch with. Now that she was no longer on the team with them, she felt weird eating at their table.

But her former “group” from middle school had moved onto their own groups by then, groups she was not welcomed into. So she spent her lunches in a bathroom stall with her feet drawn up, too anxious to go out into a crowded quad, too insecure to make new connections. She felt invisible, and at the same time like everyone was staring at her.

With her gut in a knot and her lunches spent in a stall, she started to lose weight. Then…she started to get positive attention for being skinny! Finally, a ray of sunshine into her dark world. She found ways to accelerate the weight loss process, and an eating disorder moved right on in. Once we became aware of this, we took her for professional counseling.

Financial Touchpoint #1:

You may have mental health benefits as part of your health insurance, but that does not mean that a counselor right for your troubled child will be in network. We tried very hard to stay in network, unsuccessfully, and we lost a lot of time in the process.

When you go out of network to find a good match, you will pay more. A lot more. In our case, more than double the “allowed amount.” What about out of network benefits? This usually involves a separate (higher) deductible, a lower percentage reimbursement, and a maximum visits-per-year limitation. (By the way, that count of those visits begins within the deductible period while you’re paying 100% out of pocket. I found this out when I thought we had actually met our high deductible – yay! Now insurance would start paying! I received notification that yes, we had met our deductible; unfortunately, we were now “out of visits.” No pay.)

Action Step #1: Fund your Health Savings Account yearly, and fully. You can use it to pay for most non-covered services (find out which) as well as copays and deductibles. If you never need it, it will roll with you right on into retirement.

Action Step #2: Adolescence is fraught with emotional landmines. There is a likelihood that you may need to access counseling services of some kind to help your child navigate it. Laws have changed regarding “parity” of mental and physical health benefits. Investigate your coverage while your oldest is still in elementary school. Consult someone with experience: worst case scenario, what kind of coverage might we need? Make any changes before you need to, if possible. Also, keep your ear out for recommendations.

We tried very hard to fight this adversary. It is ugly and powerful. Seductive and greedy. Here are some of the things it defeated: Art class. Dance. Counseling. Dieticians. Volunteer work. A puppy. At first, being skinny seems to solve all the problems. But then it becomes an inferno that burns everything up within it. Pages and pages and pages of math equations in my child’s handwriting: calories in minus calories burned off, or purged. As desperately as we tried to pull her out of it, our daughter ran as desperately back into the middle of the flames.

Finally a suicide attempt. Two days in a local hospital, then me following behind an ambulance carrying my daughter 60 miles down the freeway to the closest open bed available for her in a locked psychiatric ward for children. That this place exists at all is something I wish I did not know. But there she went. I stayed in a hotel nearby, while my husband worked and stayed with our other kids.

I got room service and made calls. So many calls. I found a place for her to go upon exiting the psychiatric facility after four days, and she spent her fifteenth birthday in a residential adolescent eating disorder facility.

Financial Touchpoint #2:

There is such a thing as a “single case agreement,” wherein your insurance company may pay a facility more than an “allowed amount,” if you can make the case that no such appropriate placement reasonably within your area exists for the allowed amount. You will need tenacity, time, a fat notebook, and to make very good friends with whomever is handling billing at the facility. Bribe them well with coffee drinks, flowers and treats. This facility ordinarily charged $1000 per day. Yes, I did say PER DAY. And our insurance-allowed maximum day rate was much lower. Together, via the single case agreement, they agreed on $750 per day. Our benefits were for non-residential, which meant that 6:00pm – 8:00am, plus the weekends, were on our nickel, not paid by insurance. Nonetheless, it would have been much much worse without the single case agreement (and the out of pocket maximum we reached pretty quickly). Our daughter stayed there 50 days residential, and another 60 days as a day patient, with me driving her back and forth every day, 37 miles each way.

One of my first calls was to my daughter’s prior counselor, who advised me that eating disorders typically require six years of treatment. She told me to dig in and be discerning, and not gut our home’s equity to send our child to the $80,000 cash “ranch” option a state away. She knew that this was only step one, and as hard as it was to hear it, I listened, and I was glad I did, because she was right. We would spend so much more time and money in the years ahead.

Action Step #3: Keep your brain on. Paying more for treatment does not mean that your loved one will get better care, or get “fixed” quicker.

Financial Touchpoint #3:

Once your child is admitted, stay involved with the counselors and medical staff associated with the facility. Here is a horrendous cruel irony: as your child with this particular diagnosis gains weight, she draws closer to being discharged because she is seen as stabilized. The insurance company wants to spend as little money as possible, and you will need staff help to substantiate her need for continued treatment. Believe me, she is far, far from stability, and in fact is probably quite horrified at her expanding body and making plans to correct it, once out. You must be proactive to get her as much treatment as possible.

[Sidebar: several extremely kind gestures made to me by friends during that time stay with me still. One made a care package for our daughter, with crafty supplies in it, along with a sweet friendly note. The one (the only one) of my daughter’s dance friends who stayed in touch with her the whole time, writing frequently. During the day patient phase, I fixated on the miles I was racking up daily on my car. Now I see that the situation was so out of my control that I fixated on that particular piece of data, inflating its importance. Regardless, two of my friends drove my daughter a couple of times, relieving me of that worry for the day. And a different friend lent me her convertible Porsche once for a day; driving with the top down and my hair whipping all around was extremely good medicine.

Action Step #4: Be a mensch. Drop some love onto the people around you. You have no idea how much any simple small gesture will mean to them in their pain.]

After treatment, and reentry to school, the rest of high school was challenging, but our daughter finally managed to find a home in the art department, and make a few strong friendships with creative people who “got” her. She saw counselors all those years, and her weight and her mental state fluctuated between stable and unstable, healthy, and not so much. She was (and is) a complicated person, and her life throughout high school was…complicated.

Years down the road, she would tell me, “I was never going to have a ‘normal’ adolescence, Mom; it just wasn’t in the cards for me.”

Translation: an eating disorder would not be her only struggle.

I was pretty sure she was experimenting with drinking and smoking pot in high school. She went out with friends, and this was prevalent across most social groups in her school. I worried, I stayed up late, and I tried to make sure she was safe. I thought I was keeping it in perspective, too, as this all had all gone on in my own high school, and we all turned out ok. But her experience went beyond experimenting. After graduation, and getting into a relationship with a horrible man, she escalated to using a slew of other drugs, including “bath salts.” These are not the pretty-smelling things you put into water and soak in. Bath salts are concoctions just legal enough (at that time) to be sold at convenience stores and liquor stores, in little plastic bags with fairies on the labels. But bath salts are synthetic methamphetamine. They are deadly, causing horrible erratic behavior, up to psychotic breaks.

The short version of this part of the story is that she went downhill very fast, and very scary. Dangerous people surrounded her. There were times I didn’t know where she was. And I really didn’t know what she was putting into her body.

I am so grateful that this all came to light before she was lost to us forever. Through a loving cousin, good friends, and a couple of key people who reached out to both our daughter and my husband and me, it came to a head and our daughter agreed to go into rehab.

For me, more calls. We almost put her into a 28-day program in a city close by, which came recommended. But when the director assured me that “the first relapse was free,” my hackles went up. What did he think all the zeroes on the check I was about to hand over were for, if not to fix her? Did he not realize that I was buying the “fix her once, no relapses” plan? I ended up driving her to another state, where she was admitted to a 90-day program.

I was reminded of this moment in Beautiful Boy when the father character slides his credit card across the staff person’s desk. I relived my own feelings of defeat, hope, despair and exhaustion as I observed that: please take my money, please take my precious child, please take such very good care of her.

Financial Touchpoint #4:

The person on the other end of the phone or across the desk has a bed to fill. Do not forget that. Your child is your everything, and you are wrestling with death, but the person you are talking to does not love your child. Get someone to help you if you cannot do this with some self-control and fortitude; you will need every scrap of yours, and there is no shame in reaching out for strength you lack. Buy as many days as you possibly can. You are purchasing monitored time without drugs for your child’s brain to get clear. This stint will probably not fix her, but at least it will allow her some clarity, and a shot at being able to do the heavy lifting needed to forge a new path. In 28 days, your kid is just barely going to get her bag unpacked. It takes 60 days to get some clarity, and 90 to even begin doing work. Do not get confused by extras offered; your child is not going to get well via yoga and horseback riding. These are nice things, but if you have a choice between a solid bare bones program that is longer, or a fancier one that is shorter, forget about that yoga. Look for a 12-step program based on Alcoholics Anonymous. This is tried and true.

Do not dilly-dally and waste time, however; her “yes” today may turn to “no” tomorrow, and if she is an adult, you cannot force her to go. An acquaintance heard of our situation somehow; she came to my home and convinced me to leave that night instead of in the morning. Huge.

If you choose to pay for rehab, you will probably be writing a check with a couple of numbers to the left of the comma, and you will not likely get any insurance reimbursement. I hope that I am wrong about this if you find yourself in this situation. I really do. My daughter’s first rehab cost $21,000 for 90 days.

Action Step #5: Get your kid out of her environment and for as long as possible. Plan for a year away, consisting of rehab, transitional housing, then sober living. She has to build a new life, and that takes time. (The later phases do not cost as much as the first phase – some, in fact, require the resident to work full time and self-pay.)

I was advised to go to three AlAnon meetings a week once I had dropped off my daughter. I was beyond ticked to be told that: who had the problem here? She wrecked her life, yet I’m supposed to get myself to an 8:00am meeting…on a Saturday?!? But I did go, and there came a day when I didn’t cry through the whole meeting. Later, there even came a day when I laughed at some horrible story along with the other parents, because it was absurd and it was actually darkly hilarious to those of us in that room. I found sanity there. Laugh when you can.

Seven years later, I still go to a meeting most weeks, and I probably will go forever. I came because of her; I stay because of me. AlAnon is a place where others are going through the same struggles, focusing on becoming healthier better people, whether or not their loved one is still using or not. We found a parent-focused meeting that changed our lives. Among many other important concepts that apply to all parts of our lives, this is where we learned to distinguish what is hers, and what is ours. AlAnon is anonymous and FREE.

I also went to open AA meetings, where I learned invaluable insights into the addictive mind. You know what I never once heard, though? Two things: “I did this on purpose to my parents.” And “I got sober for my Mom.” I heard humility, shame, heroism. I hung up the God suit I didn’t even realize I was wearing, and learned that I did not cause this, I couldn’t control it, and I was not going to cure it. She didn’t do it “to me,” and she would not do it “for me.” My own guilt and shame had to be flushed out of their dark corners, and I had to admit that sometimes arrogance masquerades as “help.”

As our daughter acquired skills to build a new life, so did we. There is a moment in Beautiful Boy when the son’s character meets his dad in a café and asks for some money – “I just need a couple hundred dollars, Dad.” I think he says he is hungry. The father’s character does not give his son the money. Saying no to one’s hungry child (who is still using) takes tremendous courage and strength. There were moments we said no, with great fear in our hearts. But I think our daughter would agree today that these were important moments in her recovery, and I know that they were integral in our own.

Action Step #6: Get yourself to AlAnon. Your child may be addicted to drugs, but you are probably addicted to the current drama of your child. You probably don’t fully realize the crazy inside your own mind right now. You need to find out how to say good bye to the kid you thought you had, so that you can have a shot at an honest relationship with the kid you actually do have. Plus, you cannot expect her to come home to an environment that did not get healthier while she did, and have her stay recovered. Old patterns are very powerful. You have to get better, too, and you have to learn a new way of being.

Financial Touchpoint #5:

You cannot actually buy recovery for someone else. It is impossible. Perhaps you can gift someone exposure to tools that have been used by others successfully in the past…but you will never buy or gift actual recovery to another. Recovery is an inside job. What you can do is get out of the way of the consequences that come with addiction, so that your loved one can enjoy the unmitigated full force of their own actions. Give them the dignity of their own choices, and you can love them through this process while hating the addiction, and while also not getting taken advantage of.

Action Step #7: Get used to gripping the sides of tables until your knuckles turn white with fear and rage to keep from yelling. Get used to biting the inside of your cheek so that you do not rush to rescue with words or wallet. Instead of paying for some problem that rightfully belongs to another, develop the ability to say, “I love you, I have faith in you, and I know that you will make the choice that is right for you.” Also (my favorite): “Wow…interesting. That sounds challenging. I can’t wait to see how you handle it.” And when that person does in fact handle it, do not withhold praise.

There is a saying that AlAnon and Alcoholics Anonymous share: “just for today.” That means that when you ask me how I am, and I can truly say, “I am well,” we both understand that my answer is just for today. Tomorrow will start anew. When my child is doing well, I am grateful that she is, but I am also grateful to now know that this is a separate question from asking me how I am. Either of those answers are just for today.

My gratitude is no less sweet or deep because I know that stable and good circumstances can change. In fact, in a world where a loved one of mine has battled addiction, I know from experience that things can change very quickly…and probably will.

Addiction is extremely powerful and cunning. Relapses are often part of the path to recovery. Recovery is as imperfect as life itself, and as unpredictable. There is simply no way to get it perfectly right. It’s incredibly hard work. What I like about it, though, is that it is real. And I like real.

My daughter has her own life to lead. As it unfolds, I am delighted and surprised by many of the choices she makes. She is smart and creative, and our interactions are loving. There are questions I do not ask, because the answers are none of my business. I have more than enough of my own business to mind! She is creating a life very different than the one I envisioned for her when she was a little girl. But you know what? All three of my children are doing that, and so did I.

At a meeting, you may hear someone express gratitude even for the illness that brought him or her to that room, which will sound pretty darn crazy to you if you are like the me of seven years ago! I was there for the checklist, please: how do we fix this, and fast? But gratitude seeped in around the edges of my walls. In fact, gratitude punched a doorway through my walls, and as I walked through that doorway, I became a better person, and I see life much, much differently than I did. So yes…I am grateful, too.

I am grateful to know that ALL we have is just for today. The sun on my face in the morning…a new baby’s fingers curled around mine…birdsong in the afternoon…the fact that all three of my children are alive…I do not want to waste the joy of any of these things by worrying about tomorrow. The fact is, all we have ever had is today, anyway.

Action Step #8: Handle it right, and “just for today” is just perfectly enough.

Lin

Lin is the voice of LateFIRE, and our resident copy editor. She believes in the power of the semicolon, and a dash properly placed. Her life mission is world peace: can’t we all “just get along” by using contractions properly, and placing punctuation marks firmly inside quotation marks?