Most of us remember our first bike—mine was red— and the feeling of cruising the neighborhood with a pack of kids, jumping curbs, racing and bombing hills. I also have fond memories of running through the neighbors’ yards, playing kick-the-can at dusk on hot summer evenings. A little bit sweaty and my skin splotched with the sticky remains of an ice cream cone and bug bites, heart racing with the thrill of the chase. I was one of the youngest and always got caught. But still, the thrill of playing pushed away any thoughts that could trouble a child-brain.
A few years ago, my husband and I were asked to join a softball team. I was not asked because I am good at softball. Truthfully, my eye-hand coordination is frequently the source of comic relief and that’s fine by me. But amongst our friends, there was a shortage of female players and the coed league has quotas. Lucky me. As it was throughout my whole athletic career, I wasn’t great, but I had a blast. We all had a blast despite losing every game. Well, maybe the more competitive and skilled players got less enjoyment than had we been a winning team, but no one will deny that the thrill of anticipation when the ball sails into the outfield (where of course I would be installed) or hurtling toward home plate is a magical, adrenaline pumping moment. I may not have been able to make a beautiful play, but the idea of it, maybe more like a fantasy, offered the rush I remembered from playing childhood games and school team sports. Heart pounding. Forgetting about all the other stuff.
And that’s just it: forgetting all the other stuff.
Elin and I talk a lot about the importance of “self-care” for parents who advocate for a child who has a serious brain disorder. Finding activities that bring joy and peace are an important piece of self-care. Finding an escape from day to day discussions of “the illness” benefits a person’s well being. These activities can be things that a parent likes to do alone or with the other parent or a friend. Or on a team. Ideally, a family can participate together in an activity like hiking, swimming, skiing, or cooking together. A father we interviewed for our Behind the Wall story collection, who has a daughter living with serious mental illness, advises doing whatever activity your child (or children) enjoy(s), whether that’s snowboarding or crocheting, but something that gets away from thinking and discussing the illness.
Basically, have some fun. Feel joy. Feel like a kid.
Recently, I rediscovered cycling. One day I took my mountain bike out of its long hibernation in our garage and started riding. I get nervous on tight, gravelly curves and steep, rocky descents. But the process of working on my fears in the physical world takes my mind temporarily away from real life issues I’m juggling. Riding on the trails offers that same thrill of freedom I felt as a kid in our neighborhood. A few weeks ago, my son joined me on a ride and showed me how to conquer the steep descents, specifically, a short set of concrete stairs. He made it look fun and compared doing the jump on our bikes to the thrill he gets skateboarding. He made it look easy too. Truthfully, with good body positioning, it is easy on a mountain bike. So, there I sat, poised at the top of the stairs while my heart knocked around my chest and he calmly talked me through each move through the descent. “You can do this Mom. We are not leaving until you do it smoothly. Without freaking out.” Roles were reversed; he was showing me how to play like a kid. No one talked about homework, financial issues, health issues, or future plans except what was right there before us. Those stairs, and the next ramp we’d tackle. One of the best afternoons of my life.
There really is nothing like the rush of adrenaline and being out in nature to cure (even if temporarily) whatever is nagging at you. It’s certainly working for me. I’ve also started riding a road bike too. I go with friends, or alone, with a loved one, and feel the positive effects for days after. It’s my thing.
For Elin, it’s riding her cruiser at the beach, swimming in the ocean, rowing on her kayak and walking her sweet dogs in the woods. Find your thing. Do your thing.
It’s what your loved ones need you to do.
As always, your thoughts are valuable to us:
In our story collection and book, Behind the Wall: The True Stories of Mental Illness, as Told by Parents, the parent-contributors offer advice and talk in-depth about the emotional journey—rife with grief— that defines their experience advocating for a child with a persistent mental illness. As heartbreaking as it is to watch their diagnosed child suffer, parents also acknowledge the pain their “well” children endure. At almost every speaking engagement for our book, we are asked, “What about the sibling(s)?”
Parents tell us that their children, who are the siblings of a chronically mentally ill person, grieve deeply. There are several sources of a sibling’s grief. Shifting dynamics within the family is a significant factor. In a typical scenario, a very ill child with immediate and all-consuming needs hijacks parental attention while other children are inadvertently ignored. Parents typically focus on the child who constantly gets into fights, has run-ins with the law or is abusing substances. Meanwhile, a sibling may be quietly suffering without acknowledgment. Kids need to know a parent is emotionally available, which is not necessarily the case when another child is in crisis.
Though one child’s emotional health may be the most grave, all children need support. In fact, the whole family unit needs support. But sadly, grieving parents, who are also in triage mode, may be temporarily incapable of recognizing and/or providing for the emotional needs of their other children. Parents admit they were even unaware of their own grief while experiencing it. Most worrisome is that a young person’s unchecked grief can develop into more serious health issues later.
Such was the case for Kerri, whose son, Tomas, is prone to rages. When he doesn’t get what he wants, she says, he threatens to break things and then does it. His behaviors ruin special times for her daughter and make it uncomfortable to have houseguests. Kerri says her younger daughter had “enjoyed the time when Tomas was away at college. She had felt free to bring friends around, not worried her brother was going to do something weird” (qtd. in Widdifield and Widdifield 44).
Tomas’s all-consuming illness draws attention from his younger sister’s needs due to his demands, anger, and the way he often puts himself in harm’s way, creating one crisis after another. Tomas’s destructive behaviors and the resulting stress in the home, Kerri believes, have affected her daughter’s health.
I’ve always felt he’s ruined things for his younger sister. Here we are, trying to look at colleges and had planned a whole weekend… Our daughter, who’s a great kid and good student, was having health problems, and I always wonder if it was connected to the stress of her brother’s illness and all the uncertainty he has caused. She was first diagnosed with Lyme disease then later with chronic fatigue syndrome with fibromyalgia. We’ll never know her diagnosis for sure, but she became depressed from not feeling well, always feeling tired and run down, and it finally got to her. (qtd. in Widdifield and Widdifield 47).
When Tomas is at home, Kerri says, the family often feels as if they are “walking on eggshells.” Their home is not always a place of calm and peace because of Tomas, clearly not an environment conducive to entertaining friends much less healing.
In another scenario in which parental attention is diverted to the child who is acting out, siblings may subsume their own problems for fear of causing their parents more heartbreak. But unaddressed or unresolved emotional issues can bloom into larger problems. Still, other siblings use the shift in attention to engage in risky behaviors while remaining under the diverted radar of parents who are emotionally and logistically consumed.
Grief also derives from siblings feeling that they have “lost” their bother or sister to the illness. A person with a brain disorder often suffers cognitive (and personality) changes that may be permanent. Sometimes there is memory loss. It is bewildering to all family members and siblings that their brother or sister creates so much trouble and refuses to follow basic rules they once could understand; or that behaviors that are not tolerated from any other family member are excused for the “ill child.” Children are understandably angry with a sibling who creates unnecessary drama and seems to ruin every family event—from birthday dinners to vacations.
Sadly, a young person can’t often escape the impact of their sibling’s behaviors through supports outside the home, either. The stigma of mental illness means that a loved one’s health challenges are not usually disclosed to extended family or close friends for fear of being judged or, as one parent says, because others “can’t possibly understand what I’m going through.” Parents know that because of the bad (sometimes bizarre) behaviors of their child whose illness may be undiagnosed or under-treated, their parenting is scrutinized by those who don’t understand mental illness. Other family members are scrutinized too.
Esme, a parent-contributor says that her daughter, Laura, suffered directly when attention became focused on Jennifer’s chaotic, raging behaviors caused by her mental illness. Laura, a naturally easy-going and upbeat person, was banned from the home of a long-time friend by his parents who believed she would become like her sister, Jennifer. Not only did the community conflate Jennifer’s behaviors with Laura’s, but also Laura’s emotional needs were subsumed by her sister’s volatile, demanding behaviors. Being misunderstood in one’s community is hurtful, especially for young people. About community judgment Esme says,
I was hurt, but there was no action I could take other than console Laura who had by then been affected more than once by the community because of Jennifer’s behavior. That’s what stung the most. At that time Laura was starting to experience depression, which was also crushing. We definitely never intentionally ignored her, but we did ignore her because we missed cues that could have informed us of her well-being, and we shouldn’t have. It was accidental because we were focusing 98 percent of our attention on one child. (qtd. in Widdifield and Widdifield 37).
Growing up with a sibling or any close family member known for disruptive behaviors can lead to feeling isolated from one’s community. This isolation compounds the grief of “losing” a loved one to a brain disorder, especially when friends and community don’t acknowledge loss or recognize support is needed. A brain disorder, as many know, is not a “casserole disease.” Yet, all loved ones, including the person living with mental illness, suffer from a loss the relationships before the illness became symptomatic. As Bianca, a mother we interviewed astutely observes,
When a person has a brain disorder it’s traumatic for the family, like experiencing a death. If Miguel had been in a car accident and had brain damage, everybody would have enfolded him. The loss [his brother] Arturo felt about Miguel’s illness affected him the way I felt the loss and hurt of my divorce: if the man had died, I’d have gotten a card. Flowers at least. You are left with pain and grief that no one acknowledges. (qtd. in Widdifield and Widdifield 226).
Still, it’s important to know that families can heal and recovery is possible for a person living with a brain disorder. The grieving process represents progress, allowing for a “new normal” to bloom. Families of a person with serious, chronic mental illness are forever changed but they don’t have to remain broken. First, parents need to take care of themselves in order to support their children. Parents like Esme also recommend spending one-on-one time with each child to strengthen the parent-child relationship. Though creating that “normal” one-on-one time with other family members requires some work at first, it doesn’t have to involve complicated plans. Says Esme,
I’ve been learning to have balance and spend more time with Laura when her social schedule allows. When she was taking driver’s education I’d spend time in the car with her. We take moments. “Let’s go have dinner, just you and me.” Or, “Let’s go driving for an hour and stop along the way and go into shops . . .” Anything to steal a moment so she feels connected. (qtd. in Widdifield and Widdifield 37-38)
Even as adolescents and young adults rebel or seem to rebuff parental attention, children do need time with their parent(s). As another parent recommends, find something, anything that your child likes to do and share that activity. “Maybe it’s crochet,” he says. Many families do find fun activities that involve every family member to help heal relationships and reach a ‘new normal.’ Activities can be simple, such as hiking, biking, playing a board game, working a puzzle together or watching a movie at home. Start with something small if that’s what it takes.
Siblings need time to heal from their own journey grappling with “losing” the sibling they knew, escaping the chaos the illness creates in the home and/or accepting their loved one’s mental illness. Siblings may escape or lose regular contact with the family for short-term or long-term. In some cases, the sibling relationship becomes (or is deemed) irreparable, even toxic for one or both persons. For others, siblings come to an understanding and may even be drawn closer. Having shared joyful, meaningful early years together can determine the long-term relationships between siblings and those who understand mental illness, usually become in awe of their loved one’s strength to manage it.* Many siblings we met became the compassionate, adult healthcare advocates, managing their own journey loving and supporting a person with a chronic brain disorder.
No matter what the scenario, the journey of the person whose sibling lives with a serious and chronic mental illness must be acknowledged.
We recommend finding support at your local National Alliance on Mental Illness (NAMI) affiliate and participating in the free twelve-week Family-to-Family course to learn evidence-based information on mental illness, how to communicate with your loved one and about healthy self-care. NAMI was a resource many parent contributors found to be helpful in their journey.
*For an example of sibling compassion and understanding, please see our March 20, 2014 guest post from Michael Ross about his sister Michele, Eulogy for Michelle: Defining the Success in My Sister’s Life”
If you would like to share your story, please connect to us privately through this website or private email at: mwiddi [at] yahoo.com. Identity of contributors remains anonymous to protect family members.
Of course, we welcome any comments:
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“If only he cared at all about his work.”
This is what parents of kids who have difficulties focusing on schoolwork hear from teachers. Or what the parents of students who have mood disorders, such as anxiety and depression, hear because the noise in their child’s head is distracting.
These things are said to parents during that inevitable meeting scheduled because the student hasn’t handed in assignments, often forgets or loses required worksheets, acts out in class, and even though the student is quite capable of the work, is barely passing the class. Sometimes this kid is the class clown. In this meeting, the parent feels frustrated and guilty because she had no idea it’d gotten so bad and why is it so difficult for her child to hand in finished work? And the teacher sighs because the rules are simple. Assignments are clearly written on the board and class is structured such that students can succeed. And there are all these different times for tutoring (as if this student will remember those tutoring times, or where those times are written down, and when they go to tutoring, they think they’ve got it down only to come home and forget what they were supposed to focus on).
Then the teacher says, “You are completely capable of this work.” Because they are bright enough to master the material, and when they contribute in class, their ideas are thoughtful and articulate, which always takes the teacher by surprise because what this student says during class discussions is not reflected in submitted work.
The student slumps in his chair and says, “Yeah, I’ll try harder. Yeah. I’ll get the work done. I’ll keep my binder organized. I won’t talk in class.” And they mean it. They really do want to do well in school.
But really, they can’t help it. They try but cannot do it like the other kids. It takes him longer to settle into the work, to shut down the interior noise to focus on the lesson. These students are distracted by the waving flag outside, a girl’s tinkling bracelets and the awesome skate shoes Jason is wearing. Or maybe they are worried about being away from their home, wondering if their parents are safe, and thinking about all the bad things that could happen. Or maybe the student takes longer than others to understand what was just said while the rest of the class has moved on to another topic. It’s always something. This kind of student needs a little extra help.
Maybe you’ve been the parent in this meeting?
One mother tells a story to which many of us can relate. Most afternoons, she’d watch her bright child, who struggles to focus, open his math book only to stare blankly at the pages. For an hour. She’d prod, “C’mon, hon. Focus. One problem at a time.” But because of the way his brain works, the number of problems—two sides of a sheet or often several pages— felt overwhelming, which often made him feel anxious about getting through it, which also paralyzed him to even get started. He knew how to do the problems but is a slow worker and would lose momentum after two problems. For these kinds of students, knowing that they will be spending hours each night getting through just one subject crushes any joy of learning. It’s depressing. Anxiety provoking. Often they don’t finish. Or do it at all. Then there’s the act of actually handing in the work.
Students with these types of learning challenges need support to develop workaround strategies and accommodations to prevent the student from shutting down altogether due to feeling overwhelmed. For some, it’s too much information coming at them at once. Accommodations may be as simple (for teachers) as requiring less homework, providing copies of class notes, giving gentle class-time reminders to pay attention and a dedicated front-row seat. Others require more assistance (formal specialized curriculum known as IEP) and skill development for success. Medication prescribed by a qualified medical professional may help. Success is achievable.
Offering accommodations is not about lowering standards. It’s leveling the playing field and providing an opportunity for each student to develop learning strategies specific to his or her challenges in order to reach success. Identifying what motivates a student provides a pathway to learning that is otherwise seemingly inaccessible.
In elementary grades, teachers spend most of the school day with their students and become well acquainted with each child’s learning style. In my children’s elementary school, teachers are well trained in presenting each lesson in different ways so that each student has the ability to grasp the material and develop skills at their own pace. For example, by the end of fifth grade, all those students were writing several paragraph essays. Later, students’ challenges are exacerbated in middle school where there is less time for individual attention and work is more rigorous.
…I was the parent in the meeting being told, “If your child only cared more,” a comment that made me want to leap across those uncomfortable desks and nearly strangle that well-meaning teacher.
By middle school, I was the parent in the meeting being told, “If your child only cared more,” a comment that made me want to leap across those uncomfortable desks and nearly strangle that well-meaning teacher. Because watching my child struggle every afternoon is not what a kid does if he doesn’t care. I requested that my student be tested (standard academic/psychological test) to identify root causes so we could better develop strategies and skills. I knew we needed to find solutions and I had made that exact promise to my child. I wasn’t expecting a solution that would make schoolwork a breeze. Challenge is good, but feeling constantly overwhelmed in a school setting can lead to deeper long-term issues that impact a person’s well being, including mental health.
Public school districts are legally required to provide to struggling students the testing that can identify how a student processes information and other specific challenges and strengths. This valuable information enables teachers and parents to provide workaround tools for success in school and life. We cannot change the way our brain works, but that doesn’t mean the brain isn’t powerful. It should be incumbent upon educators to offer the appropriate learning tools and teach the skills that truly enable a student to learn, no matter his process.
But our school district didn’t honor my request at first. Instead, there was a preliminary report to determine if testing was necessary. One reason cited for not initially providing testing was that my child was well supported at home. Our school district doesn’t have a lot of money. They need to avoid unnecessary costs where possible and testing is expensive. They set up barriers for parents. But how can a district do its job, that is, educate students, if issues impeding learning are not addressed?
I respect that the testing is time-consuming to already overworked district educators. Still, what concerns me as a parent and member of a wonderfully diverse district is that not all parents are aware of the ways learning differences can manifest and may feel uncomfortable about fighting for their child’s learning needs, especially when a language barrier exists. Not all parents are as pushy as I am.
Fortunately, in the end, and after several requests, our school district provided the testing (and a thorough analysis of it) which yielded valuable insights on how best to support my child’s learning.
I am keenly aware of the prevailing belief that brain differences such as ADHD are over-diagnosed, that especially boys simply cannot sit still and that there are some students who are less motivated in a school setting. Maybe some fidgety kids don’t have a diagnosable condition and some others need time to mature. Perhaps our education system is designed for uncommonly sedate children. I believe that some people are innately more ambitious than others and don’t require a parental push. Some other students absolutely do. All of this can be true, while still acknowledging that a student who exhibits problems focusing, whatever the root cause, needs to be supported. Immediately.
Whether or not a student has a diagnosis is irrelevant to the salient fact that our public education system is required to meet the needs and learning challenges of every student. To do so is to understand the specific challenge. And, for a struggling student to find success, teachers’ efforts need parental support at home.
One mother told me how she makes a concerted effort at the beginning of each school year to explain her child’s specific learning challenges to each teacher. Her child is very bright, an avid reader and always scores exceptionally well on standardized tests. Every year, teachers assure her that they understand issues around her child’s ADHD diagnosis. But without fail, by the first quarter of every semester, her child becomes overwhelmed largely due to organizational challenges. Her child loses track of assignments, and if completed, fails to turn them in. The teachers infrequently accommodate this student’s needs by allotting extensions or any other assistance. Even after this mother explains her child’s diagnosis, the teachers insist that “requirements are very clearly outlined,” and “your child is capable of the work.” As good as our district teachers are, public schools have more workload than any person should be required to manage including providing accommodations. As a result, this mother’s student becomes depressed and experiences anxiety symptoms resulting from the stress of school, despite an obvious aptitude registered in testing, in-class discussions and for in-class essays. This mother has come to realize that despite all good intentions, most teachers and the public school system don’t understand ADHD or how to help a struggling student overcome challenges the unfocused brain presents.
Let’s be clear: a person who has challenges focusing is not doomed. In fact, these types of thinkers excel in many fields, often careers requiring creativity. Michael Phelps’s mother put him on a swim team to address his high energy and inability to focus. Exercise calmed him and helped him focus. Other well-known successes include Olympian Simone Biles, actor Woody Harrelson and businessman billionaire Richard Branson.
Why does the education system need to improve accommodations for atypical learners? Because students who struggle to focus and stay on-task often fall behind in their work. A student with slow processing speed is still thinking about the first idea a teacher presented while the class has moved on to other more complex ideas. These students begin to feel lost and incapable when in fact they simply lack support and tools. They begin to believe they are “lazy” because this is what they hear from teachers and sometimes their uninformed parents. Feeling “dumb” in the classroom of peers can lead to low self-esteem and later depression and risk-taking behavior.
Tips for parents of students with learning and focusing challenges:
- Make sure the student has a workspace that is quiet, organized and with minimal distractions. Also, work with your child to block out time for homework each night. This is the best way to support a students’ education.
- Insist on appropriate testing by your school district to determine the root of a student’s learning challenges. Or, have the testing done privately by a licensed professional if this is affordable. Seek recommendations from trusted professionals.
- Seek out the many credible resources available online that provide valuable tips for students diagnosed with ADHD (such as taking mini-breaks between tasks, for example).
- Advocate for your child by communicating with each teacher and more importantly, advise your child how to advocate for her own needs with her teachers.
- Help your child to learn what she needs to do for herself to be successful in school. This may mean to take frequent breaks while working on homework, such as after one side of a worksheet is complete.
- Consider getting a tutor who specializes in working with students who have issues focusing.
- Always bring attention to your student’s strengths. If your student is a good soccer player, make sure to support this interest. If your student excels in art, consider enrollment in after school art classes.
- Some private schools support students with learning styles that are not easily accommodated in a public school setting. If this is a financial possibility, consider this option as an investment in your child’s academic and psychological well being. However, not all private schools truly accommodate these differences.
- Encourage physical activities the student truly enjoys.
- Continue to learn about your child’s specific challenges from evidence based resources and accredited professionals.
 “Difficulties focusing” refers to diagnosed or undiagnosed learning differences or brain disorders that include symptoms similar to those experienced by those diagnosed with attention deficit hyperactivity disorder (ADHD), attention deficit disorder (ADD) and/or any other mental health that causes difficulties focusing or slow processing.
 You may find basic information about ADHD and ADD at http://www.mayoclinic.org/diseases-conditions/adhd/home/ovc-20196177
Proper evaluation and testing by a trained medical professional are required to confirm a diagnosis of ADD or ADHD.
There are many evidence-based resources available. We found the following resource, which contains a list of credible resources for further reading about helping a student manage challenges focusing:
Cheyette, Sarah, MD, Peter Johnson and Ben Cheyette, MD, PHD. ADHD & The Focused Mind: A Guide to Giving Your ADHD Child Focus, Discipline & Self-Confidence. Garden City, NJ: Square One Publisher, 2016.
 Names of parent and student are changed to protect privacy.
 For more information about processing speed differences as well as other learning differences: https://www.understood.org/en/learning-attention-issues/child-learning-disabilities/information-processing-issues/how-can-i-get-my-childs-teachers-to-recognize-processing-speed-as-a-real-issue
We appreciate any and all comments.
My sister, Elin, and I bid farewell to our dogs within four months of each other. Interestingly, they were both German shepherd mixes, who shared similar black and caramel coloring and reliable, painfully loyal temperaments.
In peripheral vision, one could be mistaken for the other, though my Sweetie’s build was slight and less muscled, with a soft belly that comes from motherhood.
Sweetie, the (dog) love of my adult life, my loyal and constant companion, experienced a tragic, unexpected death. One moment she was in my life; suddenly she was not. Maggie Leigh’s illness progressed slowly. Elin watched as her once athletic companion began to move deliberately, then became increasingly wobbly until she suffered a stroke. But she remained mostly mentally capable until the end, always tracking Elin. Maggie Leigh left this world gracefully.
No one will ever convince me that grieving a dog’s passing isn’t profound, no matter how the end comes. While sometimes we can sort of prepare, that first morning without the familiar greeting of unconditional love from the bond born the moment eyes connected through metal bars at the pound, delivers a gut punch. I’ve heard it said that dogs teach us lessons we need at the precise life phase we need it. Dogs make us better humans if we allow for it. That is, if we are willing to open ourselves to that same connection that inflicts the excruciating pain in their passing.
When Elin met Maggie, she was sick with pneumonia, barely able to lift her head off the cold concrete, and according to Elin, was not nearly as beautiful as her sibling. Elin’s husband couldn’t understand why she wanted that puppy when there were so many quintessentially adorable ones putting on a show in their kennels. But Elin knew. In their last moments together, Elin thanked Maggie for being exceptional, a dutiful champion of Elin as she trained for her first, then second-degree black belt—running at her side, always eager for walks, reassurance, and affection. They canoed and kayaked together. In Maggie’s early years, she swam alongside the kayak, driven by the desire to be near Elin. Later, during challenging years of my sister’s life during which she grieved deep losses, Maggie was there, watchful, forcing Elin out of the house to do the activities they both enjoyed and nosing Elin forward to engage in life. Maggie and Sweetie had a way of resting their head on paws while their pecan-colored eyes followed us around the room, waiting for acknowledgment and eager and patient for the next outing and task. One thing to love about dogs is that no matter what kind of bizarre experience one has at work or with another loved one, the dog will always be thrilled to see you and agree with you. They never talk back. They remind us, “Everything will be alright.”
I didn’t want a dog when Sweetie came into our life. I said I’d only take a dog who didn’t bark and was easy going, and I listed other criteria too unrealistic to fulfill. But then I got the call from my dear friend, a “dog-whisperer” type who said, “I got the one for you.” She was right. I fell in love. She wasn’t a beauty though, at least not objectively. When my husband and I met Sweetie, she stood and leaned over the edge of the low wall of her pen to greet us while four of her seven puppies hung from her teats, desperately sucking. Her ribs protruded and her stomach swung as she walked. Having just transcended that phase of motherhood myself, with toddlers hanging off me, I understood completely her joy and relief to take a walk with us down the country road without the babies. And I also identified with the way she checked on each one upon her return. Her first night home with us, alone, she slept through the night, gloriously sprawled on her back, in her own bed. We understood each other.
For the rest of her life, it was her preference to sleep alone in her bed, only retiring after she’d checked on each family member. Sometimes she’d nudge us to come up to bed because it was getting late.
Family life is not easy. Adding children to the mix can bring much joy, but it’s also like filling a giant, old urn with water. The cracks of the parental relationship are exposed by the leaking water; if the thing is fundamentally unstable it all comes apart. For us, children certainly added new dimensions of stress, logistical challenges, and forced closer inspection of our marriage and ourselves. Fortunately, we have been moving through it, but the process has been fraught with chaos as well as grief, frustration, sometimes pettiness and anger. But throughout these transitions, we had good intentions. And we had Sweetie, who reminded us to get out in nature and offered unwavering loyalty and affection.
Sweetie connected us to outsiders too, which is notable considering my penchant for a hermetic life. She was a perfect citizen. She was also co-parented by our next door neighbors Patricia and Richard, whose dog, Molly, trained Sweetie on the ways of the neighborhood, barking furiously when Sweetie strolled too far down the street towards a dodgy intersection. Patricia and Richard also generously hiked with Sweetie, even after Molly’s passing, and kept her when we traveled; we never had to experience the guilt of leaving her in a kennel. When Sweetie was left alone, she was devastated, but since she loved these neighbors, known for feeding her steak when she’d stroll over for a visit, she seemed to see it as a spa vacation.
We’d had Sweetie only a few weeks when we were walking downtown and I reminded her at the curb, in a soft voice, “Wait.” She stopped dutifully as if we’d always done it that way. The first time I took her leash off, she looked at me, as if to say, “Thanks for trusting me,” and never really needed one again. She’d hear my commands in my normal speaking tone of voice, and in fact, we never raised our voice to her. There was no concern for her getting into an altercation with another dog either. When she sensed trouble, she’d simply walk a wide arc around the problem and never look back. She was a good role model for me.
I took Sweetie everywhere. Though dogs are not permitted at the elementary school, I often brought her to the campus when collecting my children. Many of the kids knew her by name and she loved the attention as if she knew it was her role on earth to be kind and represent her species well, especially for those kids without dogs at home. We’d often be approached by kids on the street who knew Sweetie and would greet her affectionately.
My identity became linked to the sense of her being constantly at my side. Like a true therapy dog, which she essentially became, she kept me calm and grounded. Sweetie was also a delightful companion. I talked to her constantly. We loved going to the beach and even enjoyed the cold Pacific water. She loved creeks too. And simply being with her pack. Dog love feels pure to me. Sweetie brought so much unconditional love and joy into my life.
So, as the years passed, and I noticed the white whiskers around her face, I promised I would be with her to the end of our natural time together. I promised her I wouldn’t allow her to feel pain. It’s the least one can do for an animal so devoted and special. Yes, I would be with her until the end. I earnestly whispered this, pressing my lips into the soft fur of her upright shepherd ears. I also swore I would never get another dog because I knew I could never do better than her.
I broke these promises I made to Sweetie. I failed the one who held unconditional love and devotion for me. It’s sickening.
It’s hard to accept that you cannot go back in time to change events. As much as I know it’s fruitless and an act of self-flagellation, I continually run the tape loop of how I could have prevented the accident that killed her. I could have found her sooner, before the accident. I know I could have saved her. All this excruciating pain could have been avoided.
When my dog-whispering friend, Cate, learned of Sweetie’s passing, she reminded me of the lessons Sweetie taught me. This did not immediately assuage my grief. Instead, I grieved more deeply because she had given so much and I failed her miserably. I betrayed her. Not a day goes by I don’t think of her.
My husband and I get a lot of compliments on our new dog, Pepper, a year-old Dutch shepherd (yeah, it’s a thing) puppy we adopted from a dog rescue to fill the giant chasm Sweetie left. Her glossy brindle coat and athleticism belies the digestive problems she had for the first four months we’ve had her. She wasn’t fully house trained during some of that time either. Last week she ate my son’s candy and threw it all up at three am, wrappers and all, on one of our good rugs. She’s still shitting wrappers. She requires a minimum of two hard workouts a day. Along with plush toys and tennis balls, there are random shoes, socks, baseball caps, TV remotes, and whatever else is within her reach strewn throughout the house, as it is her habit to carry something around to get attention. Luckily and surprisingly, she chews only her toys and bones we give her. She exhausts my husband and me. And of course, all four of us have fallen in love with her. Hard.
Which may be why this dog came to us. She has forced all of us to actively engage with her. All. The. Time. And while Sweetie was in fact, the most perfect and loving dog, she was not one to cuddle, which is arguably the most critical requirements for the well-being of adolescents and teens; nothing soothes better than a pet snuggling with you in bed on those dark, cold nights after a day when your friend(s) never returned your text or ignored you at lunch. Our house is one in which we’re all struggling to grow into something better—whether it’s into a new or changing career, getting through high school or getting the hell out of middle school in one piece. Pepper is distracting us all from the banal by needing us to play, and care, and cuddle.
It’s not always possible to make sense of why things happen the way they do. Even if we could know, I’m not sure it’s useful to know why we suffer a loss, heartbreak, or a joyful moment. I know for sure that we cannot control most of the heartbreaks we experience. I also know Sweetie pulled me into my community by being perfect; loved me unconditionally during a particularly turbulent family phase. Maggie served as a steadfast companion to Elin when she most needed it too. And now, Pepper seems to be shaking up the household in a whole different way. And to think, we almost re-homed her only two weeks after we’d brought her home.
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When our extended family was seated around my grandparent’s thick, oak dining table—one given to our great-grand-father as debt payment during the Depression and that had been elongated by inserted leaves for the gathering— the discussion would inevitably escalate until one of the men slammed a fist on that table and stomped out of the room. Usually this was Pop, my mother’s father, disgusted over where the political discourse had gone. Incredulous that these people in his house were so damn backward thinking. Not infrequently, it was my own father who’d set him off. My father had a prickly relationship with Pop. On the other hand, Mama, my grandmother, loved everyone, brought out the best in all, including my father (plus he was Catholic!) and that was reciprocated. But she’d get pissed at theatrics. “Oh N.S.!” She’d hiss, always calling my grandfather by his initials. “For god’s sake!” She’d toss her napkin down and go through the swinging kitchen door to retrieve the desserts for the rest of us.
My father got into it with my uncles too. Later, my sisters, who are a decade older than me, battled it out with Pop, a white, upper class, college-educated man who’d lost his fortune in the second big market drop of the Depression in ‘34. Throughout adulthood, he’d had a rough ride with substances but finally committed to sobriety on the day his first grandchild, my sister, was born. Those drunken years deeply affected his family and were especially ugly for Mama, whose wifely duties were primarily to cover for him. My sisters, however, brazenly challenged Pop’s views on charged topics like civil rights and Middle East politics. They were living and attending nearby colleges and had fresh, compassionate, vibrant minds with perspectives my grandfather couldn’t possibly fathom. But despite fundamental differences in their belief systems, he relished their verbal sparring and witnessing his granddaughters passionately debate. He always believed that as they matured, they’d come around to see the world as he did. On that point, he was wrong about my sisters.
I was too young to get in the fray and, frankly, too interested in getting to the dessert course. Mama had a special technique for swirling cinnamon into her pumpkin pie. But the gentle, old-married- couple bickering, sometimes all-out barking, between my grandparents remains in my memory, as does the way Mama plied my father, her son-in-law, with the fig preserves he loved to eat for breakfast while patting his shoulder lovingly, even on those mornings after a blow-up with Pop. Food has always been currency in our family culture.
I’ve been thinking a lot about sitting around that big table with my uncle who knew it irked my disciplined, raised-on-nothing father when he ate an entire roast beef in one sitting, or made us hysterical with the jokes thirteen-year-olds tell that no polite person would repeat. Especially at the dinner table. Mama’s children, my mother and two uncles, often joked about the horrific events that had happened in that house with a raging alcoholic. Or when there was no money. And it was hilarious. These were flawed and scarred adults who, along with the kids, shared a love for one another despite the chaos and ancient familial grievances; we also shared in our love for Mama and her pound cake, apple pie and the chocolate sauce she taught all her granddaughters how to make (for the record, and contrary to my cousin Janet’s assertion, mine’s the best rendition). I can still hear the din from the television console and smell the sweet pipe smoke wafting from that tiny den, where my grandfather would plant himself in that squeaky leather recliner whether after storming out of a room or just because it was that time of the day. Or because Jeopardy! was on and we’d all compete to show him who was the most clever.
Of course, Mama and Pop are now gone. Many heated discussions amongst family members outlived them. Raised voices. Storming out of rooms. And likely there are more to come. At more recent family gatherings, cousins laugh about the differences; we roll our eyes, grateful we’ve even stayed connected (thank you Facebook). It goes unsaid that we share a deep love for our flawed grandparents who we are sure would love us as much today as ever, even though we casted votes for candidates they would certainly consider ghastly.
Mama had a way of cutting through it all with a sense of humor. I wish I had her talent. On this Thanksgiving, I am grateful my grandfather lived his later years sober, and that I now understand how difficult this was for him. I am grateful we have recipes. And most of all, loved ones to feed.
Here’s wishing that you too find that which surpasses the ugly discussions in life on this day of gratitude.
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The following was, in similar form, published in The Marin Independent Journal. We thought we’d also share it here.
In well-heeled Marin County, staggering homeless statistics are visibly apparent in downtown San Rafael, near where I live. And this problem exists in urban areas across the country. The 20 percent, or 263 persons who are chronically homeless, cost the public greatly in emergency room visits, interaction with law enforcement, and incarcerations. In-depth media coverage reports that providing permanent housing and supportive services significantly reduces these costs.
Not clearly articulated are effective, holistic, long-term preemptive approaches. Largely because many don’t think the solution involves us. Or does it?
We know a myriad of factors lead to homelessness: environmental, economic, cultural, and bad luck. Brain disorders—also known as mental illness and includes substance abuse—is a leading cause of chronic homelessness. I bet all Marin’s overpriced housing that the 37 percent of homeless who self-report that they live with a “disabling condition” are underrepresented. Many also have anosognosia, a feature of serious mental illness that interferes with one’s ability to have insight that they are unwell. These individuals don’t accept treatment.
Fortunately, our city’s multi-pronged, reactive approach for current homeless includes a Police Department specifically trained for crises created by a person’s delusional thinking. A myriad of effective city agencies also support the homeless and those with brain disorders to reach independence. Still, a preemptive societal paradigm can address homelessness caused by brain disorders while strengthening community wellness.
It starts with knowing facts about mental illness and fighting stigma. Brain disorders don’t discriminate along ethnic or socio-economic lines. Bad parenting doesn’t cause mental illness either. One in five across the globe is diagnosed annually and an estimated 10 to 14 million Americans live with serious mental illness. Fortunately, brain disorders are treatable. But stigma prevents many from seeking treatment, which is devastating since early treatment equals greater outcomes. Let’s address brain disorders before a person becomes a statistic.
It’s cliché, but nurturing the whole child truly is a progressive investment in the whole community. We know that those lacking education are more likely to become low-wage earners and therefore statistically more likely to live on the margins.
Fostering youth wellbeing is possible through evidence-based programs in public schools. Initiatives fostering a healthy, inclusive school community can make the difference between a student feeling safe in his environment versus one who dangerously isolates. Adequate funding ensures reasonable mental health counselor ratios and also provides paid counselor training, psychological screenings for students, and most importantly that families can receive mental health education and support when symptoms first emerge. Brain disorders are lifelong illnesses that, similar to diabetes, for example, require ongoing management; with treatment, one can live fully.
Other youth programs foster wellbeing too. Studies show sports and enrichment programs promote healthy self-esteem and a sense of accomplishment. Feeling connected to one’s community, whether through sports, or clubs or other enrichment is critically important to young people. Engagement in positive activities reduces anxiety and depression disorder symptoms—possibly delaying onset for those at risk. Art, music, and performance arts provide students with beneficial life skills and tools for expression, valuable for us all, but especially for those who develop brain disorders.
Meditation positively alters brain structure, improves concentration and increases self-awareness, happiness, and acceptance. Schools with mindfulness and meditation curriculum have reported tangible long-term results.
Voters can also effect change by learning about HR 2646, the Helping Families in Mental Health Crisis Act of 2015 and lobbying their Senator to pass it. Importantly, this bill addresses critical roadblocks parents encounter in getting mental health treatment for their child. Presidential Candidate Clinton has also outlined a comprehensive Mental Healthcare Agenda proposing changes needed to guide a loved one from serious untreated mental illness to recovery.
It is likely your city’s many agencies and faith organizations are doing incredible work. If the long-term health of your community matters to you, consider getting involved with a school, an agency, or church; financially support relevant programs serving youth enrichment and intervention. Get informed, lobby your Marin County Supervisor and US Senator and vote. Because this is a big picture and we’re all in it.
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Jean did not delay taking her thirty-year-old son, Keith, a Medicaid patient, to a prestigious teaching hospital’s emergency room when he began experiencing heart attack symptoms. Jean, a lawyer, is the legal guardian of Keith, who lives with schizoaffective disorder that was diagnosed at age twenty. Jean knew Keith was likely experiencing a panic attack and the symptoms she was most concerned about were those of a mental illness relapse. Advocates like Jean, who have watched their loved one’s illness unfold, are intimately familiar with subtle and sometimes frightening warning signs of mental health relapse and what signifies the urgent need for an ER visit and hospital admission. On that day, Keith’s concerning symptoms included elevated mood, obsessive need to clean, racing heartbeat, and the most critical of all, incoherent speech.
Up until that ER visit, Keith had been managing his illness successfully for nearly four years with medication, therapy, sobriety and the support of his parents and loved ones. A recent college graduate, Keith teaches advanced math to high school students at an after-school clinic. He was recently promoted and had plans to move from his parents’ house into an apartment with a roommate. Stress can trigger a critical health event for those who live with chronic mental illness and Jean believes his increased responsibilities possibly caused his relapse.
The doctor quickly ruled out cardiac arrest but never addressed the mental health symptoms despite Keith’s health history, the information his mother provided, or the fact that Keith is treated at the same hospital for his schizoaffective disorder.
Upon meeting the ER doctor, Jean detailed her son’s mental health symptoms she observed and knew to be concerning and his correlating health history. But the ER doctor focused on Keith’s cardiac symptoms, asking an incoherent Keith to explain how his heart felt. The doctor quickly ruled out cardiac arrest but never addressed the mental health symptoms despite Keith’s health history, the information his mother provided or the fact that Keith is treated at that same hospital for his schizoaffective disorder. “The ER doctor couldn’t write the discharge order fast enough,” Jean says. She laments the breakdown in what should be an integrated health system, one that includes protocols in which doctors are trained to address physical and mental health symptoms.
Jean recognized Keith’s mental health was rapidly deteriorating and his ER discharge meant the opportunity to get him committed for treatment in the hospital was denied. Jean then called Keith’s psychiatrist, who was on vacation, and left a message for the on-call doctor. Several hours passed before she received a return call. In the meantime, Jean also had left a message on the answering service at the clinic where her son is treated.
When her call was finally returned, the usual and important question was asked: “Is he suicidal? Is he homicidal?” Keith was not expressing suicidal ideation though he was incoherent and clearly exhibiting signs of psychosis. But Keith does have a history of hearing command voices—voices that instruct him to do dangerous, impulsive acts. Jean explained, “No, he’s not saying he’s going to kill himself. But his thinking is becoming more convoluted and his mood is more elevated.” Despite Keith’s history, he did not meet criteria for being at risk for self-harm or harming others and therefore Jean was informed, “Have him call us tomorrow and get an appointment at the clinic.”
Jean was finally able to make an appointment for Keith early the following morning and prepared for a long night of vigilance, which was especially worrisome since her husband was away on business. Knowing Keith’s history of psychotic thinking, especially that he experiences frightening command voices, scares Jean. She would need to check on him frequently throughout the night.
Jean recalls, “The rest is a blur. About 1:30 am, I saw blood in the hallway. I banged down the bathroom door and stopped the bleeding as best I could. I called 911 and got help from my neighbors who are nurses. Before I knew it, Keith was in the first of two surgeries.”
Keith will survive but it will be a long recovery process, both physically and mentally. He told his family he wants to live, get well, and return to work. He tells his parents he had no plan to kill himself. Keith has no memory of that night. “I don’t know why I did it,” he says.
Keith’s psychosis involved hearing voices commanding him to act, nearly resulting in his own death. His act, unlike a conventional suicide attempt in which the intent is a conscious and often planned effort to end one’s own life, was unplanned and impulsive. Keith’s brain was very ill, requiring urgent treatment to stabilize disordered thinking and keep him and others safe. Had Jean been successful in getting Keith hospitalized, he could have been protected from this impulsive act that will now require a longer recovery than had he been committed to treatment merely one day earlier.
Discouragingly, these types of experiences are not anomalies. Like most mental health advocates, best selling author, Pete Earley, became frustrated by the confusing and oft enervating mental health system when his son became ill. Earley’s very informative book, Crazy: A Father’s Search Through America’s Mental Health Madness, explores the healthcare and criminal justice system for those living with mental illness and for their advocates navigating the health and justice system. In Crazy, Earley tells a story of his frustrating effort to commit his son, Mike, whose mental health was deteriorating:
The doctor said: “Virginia law is very specific. Unless a patient is in imminent danger to himself or others, I cannot treat him unless he voluntarily agrees to be treated.” Before I could reply, he asked Mike: “Will you take medicines if I offer them to you?”
“No, I don’t believe in our poisons,” Mike said. “Can I leave now?”
“Yes,” the doctor answered without consulting me. Mike jumped off the patient’s table and hurried out the door. I started after him, but stopped and decided to try one last time to reason with the doctor.
“My son’s bipolar, he’s off his meds, he has a history of psychotic behavior. You’ve got to do something! He’s sick! Help him, please!”
He said: “Your son is an adult and while he is clearly acting odd, he has a right under the law to refuse treatment.”
“Then you take him home with you tonight!” I exclaimed.
Mental health professionals are required to follow the criteria established for hospital admission. This criteria and HIPAA privacy laws restrict providers, often resulting in sub-par care and tragic consequences for people who live with mental illness. Advocates, mental healthcare providers and patients are frustrated with these laws and protocols that quite simply are more often harmful than helpful.
No good comes from an untreated illness and after leaving the ER, Earley’s son was arrested and incarcerated for trespassing. Fortunately, Mike caused no physical harm to himself or others and the arrest prompted Earley’s investigation of the mental health and criminal justice system.
Virginia State Senator Creigh Deeds and his twenty-four-year-old son were not fortunate. Deeds’ emergency intake experience was similar to Jean’s and Earley’s but with horrifying consequences. His son’s observable symptoms indicated he was becoming gravely ill. Like Jean and Earley, Deeds was unsuccessful getting his son committed. Deeds was told there was no bed available for his son. Later, Deeds’ son stabbed his father, leaving a lasting facial scar, and then he killed himself. Says Deeds about his experience with the medical system,
That makes absolutely no sense…An emergency room cannot turn away a person in cardiac arrest because the ER is full, a police officer does not wait to arrest a murder suspect or a bank robber if no jail space is identified.
Deed’s experience prompted him to initiate changes in the emergency intake laws in his home state of Virginia. The changes include:
- Doubling the maximum duration of emergency custody orders to twelve hours and establish a framework to ensure private or state psychiatric beds are available for individuals who meet criteria for temporary detention.
- Requiring State hospitals to accept individuals under temporary detention orders when private beds cannot be found. The law enforcement agency that executes an emergency custody order will be required to notify the local community services board, which serves as the public intake agency for mental health emergencies.
- Establishing a state registry of acute psychiatric treatment beds available to provide real-time information for mental health workers.
Deeds acknowledges that changes to the intake law are “just the beginning” of the process the state must undergo to modernize and increase the effectiveness of the fragmented mental health system. His detractors believe more changes should have been implemented. But he accomplished what he’d identified while on his back in recovery from the physical injury his son inflicted. And these changes can be a model nationally. Deeds said, “The bill signed by Virginia Governor McAuliffe makes needed improvements to the emergency intake process. But there’s so much more to do.” As a father of a person with serious mental illness, Deeds is keenly aware of holes in the health care system. Says Deeds,
What happens after crisis intervention?…What if a person needs long-term care? What happens after the first 72 hours? Our system was deficient before, but a lot of deficiencies remain.
Many parents interviewed for our Behind the Wall story collection share the experience that there was little information about, and questionable access to, post emergency commitment treatments or alternative resources when a person in crisis is denied hospitalization.
Frustrating experiences like those of Jean, Earley and Deeds are shared by almost all parent/advocates of a loved one living with chronic mental illness. To effect change and remove dangerous roadblocks in the mental health system, Jean could, perhaps, pursue legal retribution against the medical professionals who failed her son despite having been provided Keith’s pertinent health history. But Jean notes that the hospital and mental health professionals followed an established protocol, even though that protocol was clearly flawed. Legally, they did nothing wrong. Instead, she will work for systemic change for Medicaid patients through NAMI (National Alliance on Mental Illness) to shape a more comprehensive diagnostic protocol, one that incorporates a case-by-case basis method of treatment for mental illness symptoms. She expects pushback but she is determined.
Changes that advocates like Jean, Deeds, and Earley are pushing are critical for the reparation of the broken system. It seems overwhelming. But there is hope. In June 2015, Representative Tim Murphy (R-PA) introduced H.R. 2646, the Helping Families in Mental Health Crisis Act of 2016, which was passed in July 2016 in the House. H.R. 2646 will now move to the Senate for approval. The changes proposed are substantive. The link to read the language of this bill and follow it as it moves through the Senate can be found here: https://www.congress.gov/bill/114th-congress/house-bill/2646
There is much work to be done in order to provide the best care for our loved ones who live and struggle with mental illness every day of their lives. If you are a caregiver or a person with mental illness we’d like to know your thoughts.
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 All names have been changed to protect privacy.