Four Words

We were driving back home from an appointment with my son’s therapist. My son – sitting in the passenger seat, the hood from his jacket over his head, headphones on over that – was looking down at his iPod. It was warm and sunny. A bright day.

Nice.

He was listening to his music. I had the radio on. We were in our own worlds. And then, out of nowhere came four words. Four simple words strung together to make a simple sentence. A short group of words that people say all the time. A simple sentence that could have easily been overlooked. An observation that was ordinary by most standards.

But there was nothing ordinary about those four words.

“Those flowers are beautiful.”

My son, whose life is consumed with debilitating depression, bouts of strangulating anxiety, and moments where death seems the only way out, looked up from his iPod and out of the car window. He looked out the car window into a field of bright green grass and clumps of purple wildflowers. I can’t even tell you what kind of flowers they were. I was driving and listening to music. But somewhere in his brain, he remembered that flowers are beautiful. And out loud he acknowledged that there was beauty out there in the world.

Beauty was possible because of those little flowers.

“Those flowers are beautiful.”

I know what you’re thinking. What’s the big deal with someone making a comment about flowers? Why does this even warrant an entire blog? Those four words spoken spontaneously and earnestly gave me hope. Those four words were a gift from my son to me. They meant more than the obvious meaning of those four words. They meant that deep down, tucked away in the darkness, there was light.

And I hadn’t see that light in years.

I thought a lot about those four words. It made me feel like maybe his meds were starting to work again. It made me feel like maybe he was feeling more hopeful. More aware. More like everything out there wasn’t all dark and sad.

It doesn’t take much. And this time it only took four simple words. Four simple words to remind me that gratitude is essential. Four words that were a surprise and a gift. Four words that made me feel hopeful for his future.

I know.

But when all you hear and see is darkness, even the tiniest bit of light makes a big difference.

Those four words could have easily been missed. I was driving. I was listening to music. I was feeling tired and thinking about all of the things I needed to do when we got home. But lucky for me I noticed. I heard those four words. I even asked where he was looking, but we had already driven by. But he knew I heard him. I knew he said them.

And I am so thankful I was listening.

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Take Care Now

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You know how when you’re on an airplane and the flight attendant gives that post-take-off speech? The one about how to fit that dangling plastic oxygen mask on your head if something goes wrong while you are 37,000 feet above the ground? The one that says, “If you are traveling with a child or someone who requires assistance, secure your mask on first, and then assist the other person.” [i]

I’ve heard people use that as an analogy. They recite the line to convince others that making sure you’re okay enables you to make sure those around you will be okay, too. It makes sense, right? If you pass out, how can you place an oxygen mask on the child sitting next to you?

But what happens when there is no dangling plastic oxygen mask that automatically drops down in front of your face?

If you are a Grey’s Anatomy fan (I am), then you know that somewhere in season 5, Owen uses three-word phrases to talk to Cristina.[ii] There’s a backstory, of course, but what you need to know is that the phrase “take care now” replaces the words “I love you.” Owen wants nothing more than to say those three words to Cristina, but he knows – because of something that happened – that he is no good for her. That they cannot be together. At the end of the day, after hearing, “take care now” and “nice work today,” Cristina calls him out. And after he explains that his therapist helped him come up with three-word sentences to replace the three words he really wants to say, she gets it.

And that’s when I realized I’d been doing that same thing for years. Through the diagnosis, the therapists, the psychiatrists, the failed educational programs, the meetings, the hospitalizations. Only my three words was one word: Fine.

How’s everything going? “Fine.”
How are the kids? “Fine.”
How’s work? “Fine.”

Back then – and sometimes even now – things are fine. I use that word as a shield. It deflects more questions and ends the conversation. Because talking about mental illness doesn’t always go the way you hope that it would. Because some people – most people – don’t know that while cancer is the fourth leading cause of death among young people, suicide is the second. More teenagers and young adults die from suicide in the United States than from cancer, heart disease, AIDS, birth defects, stroke, pneumonia, influenza, and chronic lung disease, COMBINED. [iii]

So is mental illness serious? YES.
Is a mental illness diagnosis for a child, teenager, or young adult devastating? YES.
Do people rally around with support and casseroles for families with a child hospitalized with cancer? YES. (And they should.)
Do people rally around with support and casseroles for families with a child hospitalized with a mental illness? NO.

NO.

There are no casseroles. There are no dangling plastic oxygen masks. There are lots of phrases that mask reality.

Take care now.
I’m fine.

But here’s what I’ve learned: It doesn’t have to be this way. Maybe those of us who love and care for people who struggle with a mental illness should rewrite our own version of the traditional airplane oxygen mask speech.

“Oxygen and stress are always being monitored by you alone. In the event of a crisis, nothing will automatically appear in front of you. To start the flow of oxygen, pull the mask towards you. Place it firmly over your nose and mouth and take a deep breath. Breathe in and know that you are not alone. What may seem devastating and awful right now is because it is devastating and awful. But you have the power to be brave. There are people out there who know and understand. You just have to find them. Your oxygen mask is your support and your fortitude. It automatically releases and becomes available when you speak up, share your story, and find people who get it. And if you are traveling with someone who requires assistance, hang onto that mask. Do all you can to end stigma. And take care now.”

                 “Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
                                                                                                                      Joshua 1:9 (NIV)

[i] (from https://airodyssey.net/reference/inflight/#safety)

[ii] (from https://www.youtube.com/watch?v=5weZ91bkNJU)

[iii] (from http://americanspcc.org/facts-teen-suicide/)

Be Brave. Find Your People.

Brave looks like many things.

It’s starting a new job. It’s putting words on a blank screen or apologizing to someone for something you did. It’s doing something you’ve never done before or telling someone something about yourself no one else knows. It’s blasting through your anxiety to do something you really want to do.

It’s going to a women’s march in NYC, to see a new therapist, or attend a support group for the first time. Brave looks different because it is different.

When my son was young, he was a watcher, not a doer. He hung back and stood as close to me as he could. He seemed fearful at the beach or on a new playground. He stood behind me, peeking around at parades and birthday parties. He was reluctant and watchful. Fearful and apprehensive. As he grew into school and friends and life, what looked like shyness became anxiety. What looked like hesitancy became a coping mechanism for his learning disabilities. And after evaluations and experts, we had a diagnosis.

Whether he was brave or not was no longer an issue. There was a reason why he was unable to reach out and engage. Severe anxiety disorder and depression was swallowing my son, and as he made his way through his teenage years, things worsened. School was a nightmare. Social situations were daunting. Even family events and parties were difficult. I watched helplessly as mental illness took over his life.

I didn’t really know what to do then. I sure don’t know what to do now. And I soon realized that no one does. Not his teachers. Not his doctors. Not even his countless therapists or psychiatrists. Wading through the mental illness pool was more like sinking in quicksand. He was slowly being swallowed when suddenly a pill or therapy lifted him up and he almost got to get out. After awhile, though, that stopped working and he began to sink again. Until the next magic fix that gave hope.

Almost three years ago I was invited to a small group study focused on Kay and Rick Warren’s teaching series entitled, “How to Get Through What You’re Going Through.” They had lost their son, Matthew, to suicide after an almost lifelong battle with mental illness. At that group I met a person who understood exactly what it was like to parent a young adult with a severe mental illness. We started meeting for coffee and started a faith-based support group for others who love and care for family and friends who suffer from mental illness.

Four years ago, I would never have predicted that I would be talking out loud about mental illness to anyone, let alone people who I hardly know. For decades I worked so hard to hide it. The real stigma of mental illness drove me to make everything look normal on the outside. But I can’t even describe how liberating it feels to be with people who get it. I don’t have to feel guilty about expressing frustration. I can say exactly how I feel. And the best part is that as I listen to what others say, I can nod my head in understanding because I truly have walked in those shoes. I am not alone because I have found strong and brave people who know how devastatingly unbearable mental illness is.

And this has changed me. It has made me brave.

Many years ago I was struggling and at one of the lowest moments in my life. As I sat sobbing at my kitchen table, my Bible – which I only occasionally opened – fell onto the floor and opened up. I walked over and picked it up and my eyes were drawn to Joshua 1:9.

“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”

I didn’t recognize it at the time, but that was God’s grace. He reached out to let me know that I needed to be brave, but I didn’t have to be brave alone.

If your normal means you are loving and caring for someone with a mental illness and no one understands, find your people. Find your people and tell your story. Find people who will pray with you and pray for you. Find people who know that God promises to give rest to those of us who are weary and burdened. Find people who trust that joy is out there and peace is within reach.

Finding my people has changed me. My son is still struggling with severe anxiety and depression, but I am able to wake up every morning, and with gratitude and peace, get through another day. I can see my son through God’s eyes and forgive him, love him, and never give up hope for him. This is what finding my people has helped me do.

Be strong and courageous. And find your people.

[Contact your place of worship to see if there is a support group for family and friends of people who struggle with mental illness. NAMI also has lots of faith-based information here: http://www.nami.org/NAMIFaithnet.] 

Holding Space

I first came across the phrase “holding space for someone” in a blog post on a website called Uplift, a media channel devoted to wellness, consciousness, Earth, peace, water, and science. Oh, and yoga. The post unfolded in a remarkable manner and brought me back to the week my own mother passed away. Like the author and her siblings, we chose to allow our mom to live her last days at home. We sat with her. Fed her. Cared for her. We were there beside her when she died. And we said our goodbyes the same way Heather Plett and her family did. We even had a hospice care nurse who played the same role in our lives as the one in the blog. I think about how we journeyed beside our mother, unsure of where we’d be at any given moment, but certain of where things were headed.

We were holding space.

We were there loving her, talking to her, showing her old photographs, and sitting beside her quietly. We shared the same space without any idea of what the rules were. We knew three things were true: We loved her. We didn’t want to see her in pain anymore. But we didn’t want to let her go.

Until I came across this article, holding space didn’t have a name. It was just people sharing an experience and knowing that it was okay to just be.

No judgment. No advice. No conditions.

Kay Warren, co-founder of Saddleback Church in California, said it best in 2013, just four months after the suicide of her 26-year-old son, Matthew. Kay said “facing the darkness together is about making a decision. To express compassion is a deliberate choice. We are most like Christ when we choose to offer the gift of our presence and choose to absorb within ourselves the suffering of others.”

Holding space is a privilege and an honor. A gift. It is walking alongside someone who is walking in darkness. It is being a warm and quiet light. Only those with pure empathy and love can hold space for someone. And it is walking a mile in someone’s shoes that creates the credibility to be the holder of space.

Life at 5,280 feet comes with a bittersweet joy. It comes with the strength to hold space. And if we’re lucky, it comes with someone willing to hold space with us.

On Pins and Needles

I apologize.

I came across some great research about caregivers and I didn’t share. I read the document and found myself lost in the numbers. I was a statistic and it made me feel both terrified and relieved. Terrified because there are so many of us. Relieved because there are so many of us.

It has been said that misery loves company. I have to say, though, that I would not wish the heartbreak and pain that goes with caring for someone with a mental illness on any one. In this case, misery wants company but doesn’t want others to suffer as we do.

We really just want people to get it: To not blame us. To see that we love our kids, our parents, our siblings, our spouse as much as you do. And to be there when we need you without judgment, without prejudice, without advice.

The study, entitled “On Pins and Needles: Caregivers of Adults with Mental Illness,” was published by the National Alliance for Caregiving (NAC) almost a year ago in February of 2016. The research was conducted in partnership with Mental Health America (MHA) and the National Alliance on Mental Illness (NAMI). The study’s purpose was to “provide an in-depth look at the unique issues and challenges facing those who provide unpaid care to an adult who has a serious-to-moderate emotional or mental health issue.”

So it’s about me.

What the research had to say was interesting. I could have written the report myself. No surprises there, except for the statistics. Did you know that at least 8.4 million Americans provide care to an adult with a mental health issues? The study found that those 8.4 million people – aka us – are especially vulnerable, and face complex and high burden care situations. As a group, we face emotional and physical stress. We don’t feel like we have a choice. And financially we struggle. Compared to caregivers who take care of adults with any other kind of condition, which is about four years, we have been in our role for more than twice the amount of time – an average of more than eight-and-a-half years.

The study is interesting and the link, if you are interested in reading it, is at the end of this blog post. There is a list of recommendations that came out of the research and of the eight specific points listed in the summary at the beginning of the report, which include suggestions pertaining to screening, access to services, reimbursement for medications, and outreach, I found the last two most interesting: Education and resources for caregivers, including short-term respite, one-to-one support, and peer support for caregivers; and ending stigma.

So the report recognizes the need for people to talk and support each other. Something many of us have already figured out. Misery really does love company, but only if the company is credible and understands what normal looks like when you care for a loved one with a mental illness. So I am sorry for not sharing sooner. I apologize for starting a blog and then only posting a few times. It was a tough year for me. Thankfully I have people who pray for me, meet with me, and know my pain because it is their pain, too.

I’m a mom who cares for young adult children with severe mental illnesses. And I live my life on pins and needles.

You can read “On Pins and Needles: Caregivers of Adults with Mental Illness” here: http://www.caregiving.org/mentalhealth/

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Always Sing

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I will always sing.

I grew up in a big house in Queens built by my grandfather, who immigrated from Poland and became a contractor in New York City. In the corner of our giant living room was a grand piano. My mother taught piano lessons, took care of foster children along with the five of us, and loved my father and Tchaikovsky, in that order. I remember watching a musical, The Unsinkable Molly Brown, with my mother. I must have only been around 8 or 9 years old at the time, but I was swept away by the music, the rags to riches story line, and the sheer joy that I witnessed with my young heart.

That movie made me feel like I could do anything. It made me believe that I would always sing. But here’s the thing: I can’t.

Now when I say I can’t sing, it doesn’t mean I am physically incapable of singing. Well, maybe, it does. I can open my mouth. I can make words come out one after another. And I can string those words together to keep up with music. That’s singing. But just as everyone can pick up a pencil and form letters and words, not everyone can write.

I have a vague memory of being at my mother’s church not too long before she died. We were standing and singing and she turned to me and asked me if I could sing a little softer. My mother was never mean and I know it was coming from a place where cancer allows you to say whatever you want to say, but, ouch. I was praising God. I knew he didn’t care how loud I was singing (pretty loud) or how off-key I may have been (I was). I think Mom wanted everyone around me to love me as much as she did. And she knew my singing wouldn’t help with that.

Come to think of it, when my three children were little, I have a similar memory. Only we were in the car and they asked me to stop singing all together.

So now that I’ve established that singing is not one of my gifts, I have decided to keep singing anyway. I really love music and I really like to sing. In fact, according to a few studies I read, singing is good for us. Not only does it release endorphins and oxytocin, two hormones in our brains that make us feel happy, but singing also lowers stress and anxiety. And the good news is that you don’t have to sing like Adele for those benefits to kick in.

Thank God.

Singing is one way to do that, too. More often than not, singing makes me feel better. And it’s no coincidence that singing along with Hillsong’s Cornerstone or Matthew West’s Forgiveness makes me feel great. Singing doesn’t change the reality that my son has not left the house in three weeks because of his anxiety and depression. Singing doesn’t take away his feelings of hopelessness or change the fact that my daughter’s anxiety is paralyzing and overwhelming. But singing brings me joy. And that tiny bit of joy helps me remember how big my God is.

It makes me feel unsinkable.

Did I say that none of the studies I read said being a good singer is important? In order to reap the benefits, you just have to sing. That’s good news for me, because I wasn’t planning to stop.

Life is hard.

Sing.

 

 

Those Shoes

When my kids were young, I was given a pair of brown Bass leather shoes by my mother-in-law. I didn’t really like them at first, but as I wore them, they became more a part of my feet and so, a part of my life. Those shoes were the most comfortable shoes I’ve ever worn. I can’t even find them today. I tried. Bass does not make them anymore. I did however, find another pair 20 years ago, right after I got the first pair, and bought them at an outlet store. So then I had two pairs of these wonderful, comfortable, great-looking shoes that I could wear all the time.

I didn’t know it when I got those shoes, but I would walk through darkness wearing them.

My son, who was just starting school at the time, seemed shy and more of a watcher, than a doer. His blonde curls and bright blue eyes made him the center of attention wherever we went. He and his sisters were beautiful children who grew into beautiful young adults, and when we went anywhere together, everything seemed perfect.

But it wasn’t.

Getting my son to school was exhausting. He cried. He pretended to be sick. He got angry. As an elementary teacher, I knew some degree of anxiety and fear occurs in many children the first day of Kindergarten, but it never got easier for Christopher. We started with our pediatrician and was soon immersed in the world of psychologists and psychiatrists and special education. His severe dyslexia co-existed with a fear of school that scared me. It was hard to understand. As the years went by, we sought out therapists and began what would become an excruciating trek through the world of anti-depressants, mood enhancers, sleep aids, and anxiety medications, endless appointments, hospitalization, and pain.

His diagnosis was severe anxiety disorder. He was bullied in high school, had a panic attack and refused to go back. By then, I was a single mom. Working together with teachers, guidance counselors, and teams of special education professionals, we tried countless programs that, one-by-one, proved to be inadequate. Soon, no one knew what to do. He turned 18 years old, and it seemed as if he had dropped off the planet.

I visited day programs. I sought out groups and other types of therapy that I thought would work, but my son was entrenched in his depression and anxiety. He soon became 21, 22, 23, 24 years old…and could not leave the house. He began attending church, held a six-hour-a-week job there, and was mentored by a wonderful former educator and pastor. He is 29 years old now and he is back even further than where he started. A new diagnosis of bipolar is being kicked around. Meds are being messed with. Life at home is depressing and bleak.

He has lost all hope.

Through all of this, I have learned that hope is the one thing that will make things change. And without hope, there is nothing.

Sometimes I wish I had that pair of brown Bass shoes to walk around in now. They wouldn’t solve my son’s pain and his struggles with mental illness and hopelessness. But just maybe I would feel a little more comfortable in this world. Because unless you have walked a mile in my shoes, you have no idea what parenting a young adult with a severe mental illness is like.

I wear those shoes. Every day. And if you are wearing those shoes, too, I understand.

I get it.

Melissa