7 Things You Should Know About Me

I love a good list.

Whenever I come across an article that has a list of ideas or suggestions or tips, I always take a moment to read it. I always learn something from a good list. So that’s why it made sense to make a list of things that I think everyone should know. If you are related to or friends with someone who has an adult child struggling with a serious mental illness, this list is for you. And while you may already know some or all of the things on it – and good for you if you do – this list is still worth reading. It has been my experience that many people are, or act like they are, unaware of the following seven things.

  1. I love my child as much as you love yours. Not more. Not less. Living with an adult child with a serious mental illness is challenging and hard. My son acts a lot younger than he really is and his behaviors wear me out. But I love him. He is my son.
  2. Pain is pain. It doesn’t matter what you are going through. Life is hard and we all struggle. Who’s to say which is worse: a 24-year-old diagnosed with aggressive non-Hodgkin Lymphoma or a 29-year-old with a severe anxiety disorder?
  3. Happy is not always better than sad. When people who are close to me ask how my son is and I say that he is better, they immediately think he is, well…all better. With bipolar, anxiety, and depression, the lows are brutal. It’s excruciating to see someone not change their clothes for 10 days in a row. But the highs are hard to be around, too. As much as it hurts to see my son flat on his back, unable to get out of bed and more sad than any person should ever be, it hurts to see him talking obsessively and loudly.
  4. It’s not that I don’t want to make plans, it’s just that sometimes I can’t. Like most people, I enjoy going out with friends or having people over to the house. But working full-time and then spending every waking second I have left being the only person in my son’s life he can talk to is exhausting. So, it’s not you. It’s me.
  5. Mental illness happens. Just like a young adult would not choose to get cancer or multiple sclerosis, my son does not choose to have a serious mental illness. It’s time we recognize that all illnesses – whether they are from the neck up or from the neck down – are real. It’s time we stopped stigmatizing people with mental illness.
  6. My life is unpredictable.  Doctors, therapists, medications, and hospitalizations take up a lot of my time and energy. I live an unfocused life. Not a hour or two goes by without my thoughts wandering off. I never know when or how or what I will hear from my son. Or what to expect when I get home from work.
  7. I need you. I need you to understand that I don’t expect you to fix this. I need you to stand by me. I need you to love me and my adult child for who we are. I need you to know that I am a good mother. And sometimes all I need is for you to be there.

So, counting the fact that I love a good list,  I guess that makes eight things you should know about me.

Wait. I have one more.

Finding support and making the decision to support others makes all the difference in the world. The minute I found my people – the ones who are walking the same path I am – I felt safe and understood and free to share. And while that’s not a cure, it sure is the key. Helping others who feel the same way I do has done more for me than I can describe.

I love these words of Kay Warren, co-founder of Saddleback Church in California. After the suicide of her son in 2013, she and her husband returned to church with messages of love, forgiveness, honesty, and hope.

“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. And this is true fellowship.”

And folks…this is how we get there.

 

Advertisements

Life at 5,280 Feet

It has been said that to truly understand what someone is going through, you must walk a mile in his or her shoes.

Living with someone who suffers with a serious mental illness is like walking through a thick forest. The path is dim and the darkness from the overhanging leaves and thick branches only allows brief glimpses of sunlight. And when those shards of light appear, they are welcomed, but sporadic. You can never get too comfortable because the sunlight usually doesn’t stay long and you never really know when it will peak through the tangle of vines and leaves again.

For years, my son – who is now 29 years old – has struggled with severe anxiety and depression. There were months when he was unable to leave the house. During those dark times, everything was challenging. Exhausting. Even things like psychiatric appointments seemed almost impossible. Many times I would go into the office to let the administrative assistant know that we were there so we wouldn’t be charged for just not showing up. Sometimes the doctor would come out and talk to him in the car, trying to coax him inside.

There have been years when the fear of having an anxiety attack crippled everything he wanted to do. He couldn’t attend family events, so I would host. But the crowd of noisy relatives in the house drove him to his room, where he stayed, miserable and alone. Most recently, I get texts at work from him. He wants to die. He sends pictures of himself looking absolutely miserable and dismal quotes from books and movies about death and dying. Desperate attempts to try to get me to understand exactly how he feels. Reaching out to communicate his pain and despair.

And through it all, no one really knew what I was going through. Every step I took alone in trying to deal with his pain only led to more isolation because I knew no one got how things really were with him. No one really knew what was going on at my house.

Fielding questions and comments from friends and family members who are supposed to understand, but clearly don’t, is almost too much to bear. Trying to explain that the anxiety and depression is not all in his head and that it isn’t because he doesn’t try hard enough to people who are supposed to love us unconditionally is draining. I pulled away from the people I loved and counted on. Isolation was easier than trying to explain or make excuses for why my son could not leave his room, go to school, work, or socialize.

There are 5,280 feet in one mile. It takes the average person about 2,000 steps to walk that mile. But when you walk that mile carrying the pain of a loved one with a mental illness alone, it might as well be 2 million steps. That mile goes on and on.

But it doesn’t have to.

Almost three years ago I met someone at a small group gathering I went to. We were listening to Rick and Kay Warren’s sermon series, “How to Get Through What You Are Going Through.” They had lost their 27-year-old son, Matthew, to suicide in April 2013 and were back at church sharing what they went through. I was encouraged by Rick and Kay’s faith in God and love for their mentally ill son and made a connection with someone who also has a son like mine. She knew what it was like to love someone with a serious mental illness.

She knew exactly how I felt.

My new friend and I began meeting once a week to share, cry, and pray. She had walked those miserable 2 million steps. She was in as much pain and felt as burdened for her son as I did for mine.

I can’t even begin to tell you how much it means to have someone who gets it. In the past, my first reaction to any one of the weekly struggles my son has presented me with was to draw the blinds and go back into myself. But having someone I can talk to is empowering and encouraging. She doesn’t judge. She doesn’t blame my parenting skills. She knows my son can’t walk it off. And she knows because she has walked that 5,280 feet in my shoes.

It has been said that to truly understand what someone is going through, you must walk a mile in his or her shoes. I never really gave it much thought, until I found someone who had.

Even a Small Light

The road I live on is very dark. When I pull into my driveway, the motion detector in the light mounted on the edge of the roof knows I’m home and the light comes on. On nights when I’m out late, I am so thankful for that light. Without it, I would stumble my way up to the door and fumble around, trying to get my key in the lock to get inside. And while I know there is nothing there to be afraid of, I am.

There’s something about walking around in the dark alone.

Once I’m inside the house, the first thing I want to do is flick on the lights. Even though I know where everything is and could make my way around without the lights on, I want them on. The last thing I want to do is stumble around in the dark, not knowing what could be there. Fear wins out over common sense every time. And I think I may know the reason why.

Just for fun, I googled the word darkness. Pages and pages of ominous, frightening images came up. Scrolling through the pictures, an occasional illustration of the moon shining over a still lake, or something else like that, came up. But most of the images were disturbing and evil-looking. No wonder we’re afraid of the dark.

It’s kind of how I feel about mental illness.

Ever since my son’s diagnosis, I’ve been stumbling around in the dark. We get a diagnosis, meds, and things are okay for awhile. Then things are not okay. This is when the dark becomes darkness. And believe me, there is a big difference between dark and darkness. For those of us moving through life with a child or family member who struggles with a severe mental illness, like depression, anxiety, bipolar, schizophrenia, or OCD, not having that light to guide us is unnerving. Stumbling around in the dark is not fun. And that’s exactly what I feel like I’ve been doing for the past decade. Because the truth is, unlike cancer or diabetes, mental illness is viewed in a negative light in our society.

And for those of us who are walking around in the dark and the darkness, that negative light is worse than no light at all.

In a 2014 conference hosted by Saddleback Church entitled, “The Gathering on Mental Health and the Church,” author Amy Simpson spoke about growing up with the stigma that surrounds having a family member with a serious mental illness. One of the many inspiring things she said was that “even a small light can make a difference in a dark place.”

That small light is hope. Not the kind of hope that the dictionary defines as the feeling that everything is going to work out and be fine. But the kind of hope that comes from knowing that someone gets it and knows how you are feeling. They are not judging your parenting skills or the way your family member acts. They know that he or she can’t just walk it off. They may not know what to say or do, but they are there. They are that small light that helps you find your keyhole so that you can go inside and be safe.

If you don’t have that light, my advice to you is to find it.

There are a lot of us out there. Go to your church and ask if there is a support group for families and friends of people struggling with mental illness. Call NAMI, the National Alliance on Mental Health, or go to their website. Find Saddleback Church online and watch their conference videos about living with mental illness and how hope helps.

Or find one person in your life who understands. You can be a light for each other.

You don’t have to stumble around in the dark alone.

Hope: 1. Stigma: 0.

It has to hit you in just the right way at just the right time. You don’t see it coming, but suddenly your family is looking at you as if you are an intruder in their home. They are horrified. You are crying uncontrollably at that television commercial where the kids are…and then the old man and his little dog says…and then the football quarterback hands the little boy his…and then everyone is holding hands and singing.

You know the one I mean.

And your family is so embarrassed for you, they take a collective and silent vow to never show you anything remotely close to this commercial on youtube. No one wants to see this display of weird and uncomfortable emotion from you ever again.

The times I cry at commercials almost always takes me by surprise. So, imagine my surprise when I came downstairs to make coffee early one morning before work this week, clicked on the TV, and saw a young bald woman being told by, who I am assuming is her mother, “Really a lot of people are worse off than you, ya know.”

Then in the next scene, her father says, “I’m getting tired of hearing about this.”

At this point, whatever this commercial is for, it has my attention.

“Oh honey, snap out of it.”

“You’re kinda dragging me down.”

“Why don’t you just go outside. Get some sunshine. You’ll be fine.”

“Can we stop with the pity party?”

Tears are streaming down my face as I see the expression on the young woman’s face. I can actually see her pain and feelings of abandonment. The words that appear on the screen next have now caused me to sit down because even though all I see are these nine words, I know exactly what is coming next.

“You’d never talk like this to someone with cancer.”

Now I can hear myself crying. My hand is covering my mouth and I’m feeling raw and relieved at the same time. The sentences that come next push me over the edge.

“Don’t talk like this to someone with depression.”
“Depression is real. Serious. Life threatening.”

I sat there for a few moments not knowing what to think. I have cried at many commercials before this one, but the only thing this public service announcement was selling was compassion and love for people who struggle with mental illness and their families and friends who love them.

It was a breath of fresh air and a sign that mental illness is being recognized for the serious, life-threatening, and real physical illness that it is.

That commercial changed the rest of my day.

I’m glad no one was around to see it with me. No, wait. I wish anyone who has ever known my kids and I were there to see how excruciating mental illness can be and how thinking that a walk outside on a sunny day will fix everything.

Would you tell a 25-year-old with cancer or diabetes or multiple sclerosis to walk it off? Stop complaining because there are other people worse off? Snap out of it? You wouldn’t.

I didn’t see it coming, but this commercial gave me hope. Hope that there are people out there who know exactly what mental illness does and how it affects everyone involved.

Hope: 1.
Stigma: 0.

And this is how we get there.

 

 

 

 

 

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