Author: Beth Leverence

Mental Health

Like a Thief in the Night

Beth Leverence

 “Like a thief in the night” is an idiom that has been used by many in songs, speeches, and documents for thousands of years.  It is quite possible this figurative phrase originated in the Bible where in 1 Thessalonians 5:2 it says, “the Day of the Lord will come like a thief in the night.”  Like authors and songwriters preceding me, I will reuse this idiom.  I have seen how Mental Illness is like a thief in the night, because, like a thief entering a home in the dark of night, Mental Illness unexpectedly robs many of their abilities and skills without warning.

As parents, we can be known to exaggerate our children’s abilities. It is no exaggeration, however, that my oldest son, Aaron, was an extremely good artist.  At the young age of three years old, he was drawing cartoons like a professional cartoonist. He was gifted with the ability to reproduce well-known cartoon figures such as the Mario Brothers characters. His drawings would start off as a few lines and swoops and suddenly a perfectly drawn Mario, Koopa Troopa, Bowser, or Daisy would materialize on his sketch pad. As Aaron grew older his artistic skills matured and he won awards because of them.  As a young teenager, he especially liked to draw pretty girls and baseball players.

Almost immediately after we realized Aaron was suffering from a mental illness, we could see a decline in his ability to draw, and over the past 23 years of suffering from a very difficult-to-treat case of schizophrenia, Aaron can barely draw at all.  Aaron drew the picture on the far left about a year before he started exhibiting symptoms of a mental illness.  He drew the picture in the middle several years ago, and the picture on the far right was drawn in the past couple of years.  Aaron hasn’t picked up a pencil to even attempt to draw a picture in more than four months now.  His mental illness continues to rob him time and again of not only his ability to draw but his ability to write, read and even remember what day of the week it is sometimes.

While Aaron is impacted more than anyone by what he’s lost because of schizophrenia, we’re all impacted indirectly.  Aaron was on a trajectory to becoming a very productive member of society.  He was well above average intellectually, and when he was 13 years old he enjoyed programming computer games.  Now, however, instead of contributing to our society as a software engineer for a computer gaming company, he is one of more than 12,000 people under the age of 65 receiving Social Security Disability benefits.  Aaron wants to work, but schizophrenia has robbed him of this privilege.

Thankfully, mental illness doesn’t impact everyone as significantly as it has Aaron.  However, about 20% of all adults regardless of gender, race, age, or socio-economic background in the United States suffer from a mental health disorder, and the impact on the economy is staggering.  A report commissioned by the American Heart Association CEO Roundtable identifies an annual cost of $210 billion to the American economy due to depression alone.  Because so many mental health disorders go unreported, this cost is undoubtedly far greater than what was identified.

With such staggering costs to the economy and the volumes of adults, not to mention children and adolescents, affected by mental illness it is surprising how little the federal government invests in Mental Health Research.  While the government has increased the budget for the National Institute of Mental Health (NIMH) in 2022 to $2.14B, it is still a fraction of what is allocated to the National Cancer Institute (NCI) during the same time period, $6.9B.  I am not advocating that less should be allocated to NCI, but rather that more attention and resources should be applied to preventing and managing mental illness in the United States, especially because it impacts everyone either directly or indirectly.  This will require an increase in resources from both the public and private sectors.

Minimizing the effects of mental illness for individuals, their families, and the entire nation is something I’m confident most will agree is of the utmost importance.  It is imperative that we come together as a nation to secure mental health care for everyone in our communities so we don’t lose a single mind to this thief in the night, mental illness.

https://www.ssa.gov/

Mental Health, Uncategorized

Starting the Conversation

Beth Leverence

Regardless of what church you attend, it is likely you’ll be led by the pastor in prayer on the behalf of and in support of other members of your congregation, community, country, or even someplace else in the world.

The pastor might say something like, “Now, let us come together in prayer for Jim who’s in the hospital recovering from back surgery, and Barbara who was recently diagnosed with cancer.”  Have you ever heard a Pastor say, “Please join me in praying for Joe as he struggles with severe depression”?  I haven’t.  I’ve never heard a Pastor say anything remotely close to that in a church service because Joe doesn’t want anyone to know he suffers from depression. He’s afraid if they know he has depression, they might look at him differently.  Some people will even try to avoid him.

My son, Aaron, first became ill with a mental illness when he was a freshman in high school, many of his teachers came right out and told us they couldn’t understand why he couldn’t just suck it up and manage his behavior.  He needs to be more attentive in class.  He needs to focus on his schoolwork.  It’s his own fault he’s having so much difficulty. That was more than 23 years ago, but sadly I’m not sure much has changed since then.  People are still reluctant to disclose to others when they have a mental illness because there are so many stereotypes and prejudices against people with mental illness.

The only way we can affect change around mental illness is to start a conversation about it.  According to the American Psychiatric Association, one way we can positively influence reducing the stigma associated with mental illness is to speak out and share our personal stories.  My son, Aaron, can no longer effectively share his story.  His mind and body have been severely disabled due to his mental illness.  Once an avid personal journalist and artist, he can no longer pick up a pencil and write down his thoughts or as easily draw a picture.  With his permission, I am speaking out on his behalf and sharing his and my personal stories about mental illness.

According to the National Institute of Mental Health nearly 1 in 5 adults in the U.S. experience mental illness in a given year, and that number is higher for adolescents.  With so many people affected by mental illness, why are we so reluctant to talk about it?  When Aaron first became ill with schizophrenia, my husband and I did a lot of research on mental illness.  Mental illness is due to a chemical imbalance in the most complex part of the human body, the brain.  The specific chemicals in the brain that are out of balance, known as “neurotransmitters”, are dopamine, serotonin, and glutamate.   Very few people are afraid to disclose to others when they’re having a problem with their liver or gall bladder, or other more minor organs in the human body, but when the most complex part of their body, their brain, is failing they’re afraid to talk about it with people. This must change.

Interestingly, when I disclose that I have a son who suffers from schizophrenia to a co-worker or acquaintance, it is not uncommon for them to tell me about their son who has bipolar disease or even that they themselves suffer from depression.  It takes only a few simple words to get the conversation started and the impact can be quite beneficial.  These conversations have a ripple effect, because the more we talk about mental health with other people, the less scary and worrisome it will be.

Over time through these conversations, the stigma associated with mental illness will be reduced.  More importantly, however, the ripple effect can reach beyond a reduction in the stigma.  Increased awareness and understanding of mental illness can fuel change in crisis management, care facilities, and medical research.  That is my prayer so that Aaron and others impacted by mental illness can have a better quality of life and be healthy, productive members of our communities.

Mental Health

Happy Holidays?

Beth Leverence

“Christmas time is here

Happiness and cheer

Fun for all that children call

Their favorite time of year”

A Charlie Brown Christmas is my favorite Christmas movie. The music of Vince Guaraldi is one of the reasons why I like the movie so much. Unfortunately, “Christmas time” and the Holiday Season, in general, are not “Fun for all”.  For people and families impacted by mental illness, the holidays can be more stressful than they are for the mentally healthy.  Often time’s anxiety is created because you don’t know how your mentally ill child or family member will react to the commotion and excitement.  Routines will be disrupted, which can be a trigger for decompensation or a decline in a person’s mental health.

I can’t deny that while I’m a mainly optimistic and cup-half-full type of person, my anxiety level is slightly elevated.  Our son, Aaron, developed schizophrenia in 1999 when he was 15.  Over the past 23 years since Aaron became ill, we have had several difficult holiday seasons. 

Christmas 2002 was one of the tougher Christmases.  Every mother’s greatest joy on Christmas is to have all her children with her.  I don’t need or want any gifts really.  I just want to be surrounded by the people I love most, my husband and children.  That’s what made Christmas 2002 so hard.   Aaron was missing.

From the time Aaron was 18 to the time he was 21, he spent a great deal of time institutionalized at Winnebago Mental Health Institute in Wisconsin.  This is far from typical, but the psychiatrists at the public mental health facility in our community did not want to treat Aaron.  He is med-resistant.  While most people with schizophrenia can lead fairly normal lives with the right therapy and medications, Aaron struggles despite taking a lot of drugs.  He is frequently delusional and psychotic, and when he’s not doing well, he requires a lot of one on one attention to keep him safe.  Aaron is prone to self-harm when he’s in a delusional state.  The psychiatrists in our community did not want to deal with such a sick person, so they sent him to Winnebago.

Believing that the more time Aaron spent with his family, the healthier he would be, we would drive one and a half hours to Winnebago every Friday to pick Aaron up and drive one and half hours back to Winnebago every Sunday to return Aaron.  This routine was dependent on getting clearance from the doctors and staff at Winnebago, however.  If Aaron was having a bad week, they would refuse a home pass.  Unfortunately on December 23, 2002, when we called Winnebago Mental Health Institute to make arrangements to pick Aaron up on Christmas Eve day, we were told he wouldn’t be able to leave the hospital as planned.  His behavior was too irrational.  The doctor didn’t feel comfortable giving him a pass.  In private, the tears flowed, but I remained stoic in the company of our daughters.  I didn’t want to contribute anything but joyfulness to their Christmas.

My husband, Mark, and I couldn’t bear the thought of Aaron, just 18 years old, spending Christmas alone at Winnebago.  It made our hearts ache with sadness.  To ease our grief, we decided to make the three-hour roundtrip drive to Winnebago on Christmas Eve morning to wish him a Merry Christmas in person.  We assured our daughters that we would be back in time to get them to church for the Christmas Eve program.

As we drove, I prayed for God to give me the strength to be cheerful for Aaron and to focus on His love in the gift of His son, Jesus.  My prayers were answered.  I was able to sit with Aaron for a couple of hours and read the Christmas story to him that he had so often recited as a child on Christmas Eve in front of the church.  My visit with Aaron eased my aching heart enough to enable me to focus solely on our daughters that evening and on Christmas Day.

The mental health decline Aaron experiences during the holiday season is not uncommon.  Several years ago, the National Alliance on Mental Illness (NAMI) conducted a survey where 64% of people with mental illness reported the holidays made their conditions worse.  Having this insight in advance of the holidays and knowing the symptoms to watch for can help mitigate the difficulties a mental health decline can create.   I concur completely with one of the respondents to the NAMI survey.  They advise keeping expectations low and letting your family know in advance of your limits.

I don’t know exactly how Christmas 2022 will turn out yet.  We have learned a lot over the years on how best to help Aaron remain mentally stable.   I remain hopeful that if we can keep disruptions to Aaron’s routine to a minimum, he, and then the rest of the family as well, will have a happier Christmas.  That is the gift I hope for more than anything else.

    Mental Health

    Care or Incarceration?

    Beth Leverence

    On a sunny August afternoon, I came home from work to find my 17-year-old son, Aaron, lying on the sofa moaning in pain.  He was very nauseated and running a fever.  That night we took him to the Emergency Room where a CT scan revealed he had appendicitis.  His appendix needed to be removed as soon as possible.  The surgery was scheduled immediately, and gratefully it went smoothly.

    The following morning we came back to the hospital to visit Aaron.  Knowing what room he was in, we simply walked through the door of the hospital and took the elevator to the floor where he was staying.  No one stopped us at the hospital entrance and asked who we were visiting.  They never called the nurse’s station on the hospital floor to get permission for us to go to his room, and they most certainly did not request we lock up our personal belongings or go through a metal detector before proceeding to visit him.  It seems absurd, doesn’t it, that you should have to pass through metal detectors to visit your loved one in a hospital?

    When Aaron was fifteen he became very ill with a difficult-to-treat case of schizophrenia.  As a result, he has spent a lot of his life passing through different mental health facilities.  EVERY time we visited Aaron at the Milwaukee County Mental Health Complex, we were required to stop at the front desk and tell them who we came to visit.  They called the ward where he was staying to get permission for us to visit him.  Once confirmed that it was Ok for us to proceed, they had us lock up our belongings.  Finally, they took a metal detecting wand and checked our front and back for weapons.  This process caused me to shake my head in wonderment.  Was my son in a hospital or was he in a prison?

    The differences between many Mental Health facilities and hospitals that mainly treat people’s physical issues don’t just stop at the lobby.  Most hospital rooms are outfitted with comfortable beds, televisions and walls painted with pleasant colors intended to calm and comfort the patient.  Many mental health facilities Aaron was admitted to looked like the walls hadn’t been painted for years.  The rooms were often shared with one or more patients, and each patient only had a low platform bed to sleep on.  Patients were lucky if there was one working TV in a common room with more than a few channels for them to choose from, let alone having a TV in their room.  I can understand the stark nature of the furnishings and bed linens might be intentional to keep people safe from personal harm.  Still, shouldn’t the intent also be to create a calm and comforting environment to help the patient heal?  I rarely walked into a calm and comforting environment when walking through the halls of a mental health facility. 

    Is it any wonder that many people with mental illness don’t seek help for their disorders?  According to the American Psychiatric Association because of the stigma surrounding mental illness more than half of the people with mental illness don’t receive help for their disorders.  The 3 types of stigma researchers identify are public stigma, self-stigma, and institutional stigma.  It is the institutional stigma that promotes policies that create significant disparities in the environment and care people receive in mental health facilities versus hospitals for the physically ill.

    Aaron is 38 now.  I’ve been observing the institutional care he has been receiving for the past 23 years and I have only seen limited positive change if any.  Mental illness is, however, getting more visibility in the past few years due to the impact many have felt from COVID and social policies created because of it.  This is unfortunate, but at the same time, I’m hoping it is a blessing in the long run.  Because the more people talk about mental illness and the more people understand it, the likelihood of positive change will finally be realized.  Institutional stigma can be reversed.

    “Stigma, Prejudice and Discrimination against People with Mental Illness.” Psychiatry.org – Stigma, Prejudice and Discrimination Against People with Mental Illness, Jeffrey Borenstein, M.D., Aug. 2020, https://www.psychiatry.org/patients-families/stigma-and-discrimination.

    Mental Health

    Whole Wellness for our Babies

    Beth Leverence

    Aaron was born on Tuesday, April 17, 1984, just before 7:00 am after a 9-hour labor.

    As can often be the case, a mother’s delivery of her first child can be a more difficult one. Because Aaron was the first baby, of my four children it was the most difficult delivery for me. It probably took far too long, and they should have considered using forceps, but for some reason unknown to us the doctor did not do that causing Aaron to be in the birth canal for an extended period. When Aaron finally made his appearance, he was blue and quiet. He didn’t start crying for several minutes. His Apgar score was only three. Although not extreme, Aaron was below normal weight – only 6 lbs. 7 oz. He was born 10 days before his due date, but the doctor said he had symptoms of an overdue baby like startling easy and peeling, dry skin.

    No one raised any alarms about Aaron’s low Apgar score or the symptoms of being overdue, and while he was less than 6 pounds when he left the hospital, he gained weight quickly and appeared to be completely healthy. In fact, he was better than healthy from what I could see. He was NEVER sick, and he was SO gifted. So, I never gave the events of his birth a second thought, until many years later when he was 15 and he got sick. Though, he wasn’t physically sick.

    When the psychiatrist is asking question after question about your child’s health history and social history (i.e. drug use, alcohol use, etc.), all sorts of memories get dislodged, and for me, that was the memory of Aaron’s birth. I started to wonder if the oxygen deprivation at his birth caused a fault in his tiny brain that was festering over the years and was now presenting itself as a mental illness. Why didn’t I see this sooner? Why didn’t our pediatrician see this coming on?

    In hindsight, I wish I hadn’t buried the memories of Aaron’s birth so far back into the recesses of my mind. I wish I had discussed it with his pediatrician at his first doctor’s visit, and I wish I would have been more keenly focused on his mental health throughout his entire childhood. Maybe, I could have done something to thwart the mental illness that was now presenting itself.

    I don’t know with any certainty that I could have taken action to prevent Aaron from developing a mental illness, but I also don’t know that I couldn’t have. Mental illness is such a difficult thing to treat, and anything parents, caregivers, and pediatricians can do proactively to ensure the health of a child’s mind should be done!

    Almost twenty-one years after I gave birth to Aaron, I gave birth to my second son, Kyle. From the time Kyle was born, I have been very attentive to his mental health. I made sure he developed a habit of always wearing a bicycle helmet. I ensure he eats healthy meals and gets plenty of sleep, and I frequently ask him how he’s doing. I will not hesitate to take him to a psychologist or counselor if he says he’s feeling mildly depressed or excessively stressed.

    Whatever actions we might take to ensure our children’s minds remain healthy, they need to be deliberate, thoughtful, and specific to each child. We should not be passive about the mental health of our children. We should be managing the complete health of our children, both physical and mental.

    Mental Health

    The Power of Community

    Beth Leverence

    Community as defined in the Oxford dictionary is “a feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals.” 

      There isn’t enough emphasis placed on the value communities provide.  We’re all part of many communities.  Some of them are informal, so informal that we don’t even give them a second thought, like the random people my son plays video games with while online.  Other communities are more formal and well-defined, like the churches we belong to or the places we work.  We don’t even think about these communities very often, but when we’re in need, it’s often the people within these communities that help and support us and lift us up.  I’ve experienced the value communities bring time and again throughout my lifetime, especially when I’m going through a personal crisis.

      My hope by starting this blog is that a new community will be created, and like most communities, its members will be there to help and support one another through sharing ideas, experiences, resources, etc.  Specifically, I am very passionate about sharing my thoughts, articles, and videos on issues that impact people touched by mental illness.

      My husband and I were thrown, maybe even catapulted, into the middle of mental health concerns about 23 years ago when our oldest son, Aaron, became very ill with a mental illness.  Over time we’ve learned a lot about mental health and the impact a mental illness can have on an individual and their family.  I hope to share some of what we’ve learned through personal experience and ideas on how we can minimize the stigma associated with mental illness. Over the years, we’ve seen changes for the better for people and families with mental illness, but the changes have been small and a long time coming.  There is so much more we need to do so that people suffering from mental illness can get the care and support they need.