DO WE NEED HEROES IN LIFE? WHAT REALLY MAKES A HERO A HERO?

My father attended the funeral of a life-long friend a week ago. He shared a few thoughts with me about things that were said, feelings that were felt. I could tell that it was a good experience for him, one where those who loved a great man gathered to celebrate the life he shared. 

I think there is a point in life when we stop being devastated by the death of a loved one, and can start to see the gratitude for a life well lived. I’m sure it happens at different points for different people. There are probably many different reasons people do and don’t make this transition.  A lot would have to do with where they are in life themselves. It may be hard to celebrate the good life of another if we aren’t feeling that great about our own.

It is at times like this that we look around and find others who we think are probably doing it right. Or at least, better than we are doing it. We watch for little things they do and we begin to compare our accomplishments to theirs. In a way, they become a hero.

Our hero.

What makes a hero?

We tend to throw that word around a lot in society today.

People who sacrifice for others are generally awarded the title. The military is getting more and more respect, deservedly so, as they continue to fight seemingly endless battles on many different fronts. Is a hero a soldier?

People who have worked incredibly hard to become the very best at something also are referred to as heroes. Just having finished the Olympic games brings many quickly to mind. Is a hero a winning athlete?

We also saw several stories of athletes who had not won in the Olympics, but were incredibly gracious in the way they handled defeat (if we could really consider anything any of them had done a defeat – great Scott, I know that I could never come close to the last person to cross the line, much less the first!). So, is a gracious loser a hero?

The truth is that there are most certainly soldiers, winners, and losers who are heroes.

The truth is also that there are most likely soldiers, winners, and losers who are not heroes.

What then makes someone a hero? What would the real definition be?

In remembering experiences with this friend who had died, my father shared a time many years ago that he was being interviewed by this same man on the radio. It was one of the interactions that had helped build their friendship.

During the interview the man asked my dad who his heroes were. My dad said that he gave a quick, off the cuff response that was something like this:

“My heroes are those who do the best they can with whatever life hands them. My heroes are those who manage to build on the good stuff that their parents contributed while rejecting the bad. My heroes are those who rise above both genetics and environment.”

Actually, I think that is a pretty great definition. Imagine what he would have said if he had been given some time to think!

In looking at this definition, it makes me wonder if the heroes who make the biggest difference in our lives are the ones that we know both the good and the bad about. We know what they overcame. We know the choices they made in love and respect for those who came before. We know about how they became more than the sum total of their experiences.

Our real heroes are people close around us. Our real heroes are people we know.

So, how does this happen? Unlike some of the other heroes we have thought about, there aren’t television commercials or newspaper articles or big pictures in magazines about what our family and neighbors are doing. How do we come to know some of these deep and personal details in the lives of these quiet heroes?

We actually have to interact with each other.

It’s a pretty safe bet that none of us live a “Mayberry” kind of life where we sit and fan ourselves on the porch at night listening to someone play the guitar, or walk the several blocks to work and back home for lunch each day, or even stop in the barber shop to catch up on the latest happenings.

But isn’t there somewhere in between that and working 14-hour days, rushing to each child’s soccer game and dance recital, and tackling the never-ending list of things that absolutely must be done? 

I will admit that I am one of the worst at this. Not that I am jetting off to make presentations or meeting with board members to make the big and important decisions. Not even close.

But I have found security in a little world with little outside interaction. Ann calls it my little box. As long as life is lived in that little box, it remains manageable and relatively calm.

So, as with all things where I think a change needs to be made, I must start with myself and go from there.

Recently we accepted the invitation to actually go over to the home of some very dear friends and just spend some time with them. Pretty unusual for me to not have an agenda and a plan and a time limit for such an activity.

We just went to talk.

You see, their adult daughter is fighting a horrific battle with leukemia. Because of the risk of getting sick, she has been pretty much homebound since returning from months and months in a hospital room. Of course, for me, being homebound is a great reward. I do well alone.

But she was lonely. She needed to have that interaction with others to help feed her spirit and bring joy and purpose to getting out of bed each day.

So, being “good” neighbors (honestly, I don’t think we will ever be accused of being good neighbors, but one can always try to paint a more flattering picture), we went over to spend some time.

We went to just be with them. To just be.

And a hero was born.

This woman sees life more clearly and more acutely than most. We learned what she is overcoming. We saw the choices she is making in love and respect from the great lessons of her parents. We witnessed someone who is certainly more than the sum total of her experiences.

I think the true test of a hero is what comes after the impressive encounter that leaves such a mark in our memories. What happens next?

Do we sit back and just tell others about what a great person this is? Do we let it put a smile on our face each time we happen to think about them and what they are doing?

Or is there something more?

Does it cause us to take some serious reflection and evaluate how we are doing with our own “little bag of goodies” that life has handed us? Do we stop and think about the things our parents taught us that have made our lives better? Are we forgiving and forgetting those things that weren’t really so great? Are we choosing who and what we want to be, above and beyond what we may just ordinarily be?

I guess I think that a real hero is someone who helps me to change myself.

And in the process, I find another hero in my life: Me.

I can become my own hero as I work hard at changing and becoming and growing and evolving and learning and stretching and failing and trying again.

Because the bottom line is that I have to put in the work. I have to face the fear, and do it anyway. I have to keep getting up after I fall. I have to learn the self-control that comes with delaying gratification.

It happens gradually, but before I realize it, I see the person I wanted to be, or at least a glimpse of what can be. I’m stronger. I’m kinder. I’m happier.

At the same funeral my dad attended a week ago, the son stood and shared this thought that really touched my father: “Dad taught us to live after the manner of happiness”.

I sincerely believe that is the purpose of all we do here in this life. We learn how to truly be happy. Maybe the recipe for happiness is closely tied in to the recipe for being a hero.

Do the best you can with whatever life hands you.

Build on the good stuff that your parents have given you and reject with forgiveness the bad.

Rise above both genetics and environment to be more than the sum total of all your experiences.

And maybe, just maybe, there is someone else out there looking for a little lift, a little help in becoming.

Find a real hero to help you become your own, then help someone else become a real hero.    

WHAT EFFECT DOES LOVE HAVE ON THE “MENTAL ILLNESS PROBLEM”?

The news reports are carrying more and more stories of tragedies that find their root cause in mental illness. After trying to process the horror of each situation, people involved comment that the person was suffering from mental illness, then everyone shakes their head, and that seems to explain it.

Those mentally ill people are out of control. We fear them and what they may or may not do. Perhaps they need to be separated from the rest of society for everyone’s sake.

In some cases, that could be true.

There are certainly days that I need to be away from others and left to just use my energy to get through the screaming inside without turning the rage on anyone who happens to get in my way. It doesn’t really take something specific to set me off; anything seems to fit the bill in the right moment. For example, once a family member simply walked by the room I was in and it triggered overwhelming anger and frustration in me. My mind immediately flooded with the need to grab her and shove her through the wall. It seemed so logical; the only thing to do in that moment  – nothing else mattered.

But I didn’t act on it. I listened to the other voice in my head, the one I trust. I shut the door and hid in the corner and waited for it to pass.

You would think that would bring relief. Nothing bad happened and that is a win, right?

But instead of relief, all that comes is overwhelming guilt. In this case, as I worked to listen to the other voice in my head, the person I refer to as the “real Greg”, I focused as it fought its way through to tell me that she had done nothing at all to me, in fact she wasn’t even thinking about me, and what on earth was wrong with me that I would have these horrible, cruel, sadistic messages that consumed me?  

Guilt.

Normal people don’t think this way.

That is usually when I start to hit my head. Flat hands, fists, the wall, the refrigerator. Doors are always good because you can swing them toward you at the same time as you thrust your head toward it. Double impact.

In my mind I call this madness. Probably not clinically correct, but it is the closest descriptor that explains how it feels. When this happens I’m not sure what is real around me, not sure of my self-control, not sure what I am supposed to be doing. Often I walk in circles muttering, trying to figure out what the “normal” thing to do is. It’s like I can almost figure it out – almost, but not quite. It is just beyond my fingertips. And the screaming inside goes from background noise to full orchestration.  

Times like these are, in fact, good for me to be alone and away from others. That can be lonely, but they are very necessary.

But I’m not always like this.

There are times that I am crystal clear and sharp and can understand everything that is happening in the room and around me, much faster than everyone else. I get frustrated that they don’t see what I see and I wonder what is wrong with them. I feel like I am capable of anything; if I just look at whatever it is that is in front of me carefully, then I will figure it out and it will work, and work well.

I like when I feel like this.

I felt this way for years and I thought it worked well for me in my job and my life. I could get A LOT done.

Yet I’m starting to see that this isn’t really normal either. This is difficult for others to work with and manage. What seems so clear to me really isn’t to everyone else. What I feel are more than adequate explanations to others actually come across as scattered and incomplete. I’m learning to just keep my mouth shut at times like this because I have no warning about what may come out. It is better to be quiet; yet my brain is anything but. At times like this I can still be in a room with others, but it’s best if I remain detached and distanced.

However, this is better than the other, at least. I can be in a room with people – just not very interactive.

So, here is the big question: Are there times when I can not only be around people, but also interact and work with them? Or to be safe do I need to just stay in my little box, in my own little world?

I wonder if many in the public who have been horrified (rightly so) at what some of the mentally ill have done would prefer it that way? I have to agree that it would certainly be safer.  

However, I’m still a person, and a pretty smart one at that (if I do say so myself!). I do feel that I have things to share, contributions to make.

More importantly, I think contributing is part of the helping and healing process through mental illness: To be a part of something that is moving forward and making the world a better place is actually pretty medicinal and powerful.

But it’s pretty hard to get up each day knowing that you have to focus very deliberately on NOT being a problem to others or causing any pain. After a while, you realize that it would just be easier and better for everyone involved if you just didn’t wake up. Just close your eyes, and it’s over.

Because you know, I am so incredibly tired. Bone weary and brain heavy tired.

Is it really worth it?

I close my eyes, take a deep breath, and shout out a resounding “YES!”

Because there is a paradox at work here.

It is in fact the very people I am so afraid of hurting who bring me the strength and resolve to keep opening my eyes, keep exerting self-control, and keep trying to make their lives better in some small way.  

I don’t want to just not hurt them; I want to help lift them and make their life better. I want to be a positive force as they move forward in life.

The truth is my wife Ann has saved my life. Again and again and again. I would not be who I am today without her. In fact, I would not have made it.  

But it isn’t easy for her. I worry so deeply about the strain and toll this puts on her year after year.

And our children. Who wants to be a teenager trying to figure out life while not knowing who your dad will be from one day to the next? Other families take trips and go skiing and do spontaneous fun things. But not ours. Never ours. Who knows what form of Dad will appear at any given time? Pretty hard to make plans that way.  

Now all of this might be a lot of foundation to lay to ask our question about the role of love in mental illness, but maybe this is where we start the conversation.

What is something that can really make a difference in our “mental illness problem?”

Certainly medication and therapy are critical. Healthy diet, good exercise, and enough sleep at night make all the difference in the world. I think everyone would agree here.  

But what more? What can make the difference for the individual who is doing all he/she can to just make it through, to survive?

What is one thing that has the power to supersede and help to overcome the encompassing effects of someone with mental illness?

Love.

Sounds pretty simplistic. It probably is. But it is certainly NOT easy.

I think our family has discovered some things that have helped bring freedom and happiness, to all of us, while working through the mental illness.

For years I fought the notions and diagnoses that I had something seriously wrong in my head. But then, the day came when I couldn’t pretend anymore.  

While helping Ann move a bookcase, I grabbed her and came very close to pushing her through the wall. I could see it in my head; I could see how to do it. Nothing else mattered but the rage and anger that sprang up from nowhere. I had no warning. I went from Dr. Jekyl to Mr. Hyde in a nanosecond. Then I had her by the arm and I could feel my muscles tensing and preparing.

I dropped her arm and backed away, not understanding the monster between us – because I wasn’t there but back a little and to the right, watching the whole scene.

In that moment I looked for and listened to the voice that is the “Real Greg”. I knew that something had to be done, and done quickly. It was not an option for me to ever hurt her.

It was time to try medication. I had fought this with all I had, because I was worried about the side effects and being numb to the wonderful feelings of being so alive that I enjoyed. But suddenly that didn’t matter anymore. If I needed to spend my life in a semi-comatose state from medication, then I would. The risk otherwise of hurting those I loved most was just too high.

The first medication was okay and helped with the homicidal tendencies, but I was kind of just that, in a comatose state. I could sleep all the time without really accomplishing anything.  But I found a way to make it work with getting things done between naps. I reasoned that if this was the way it was to be, then I could and would do this for the next 40 years.

Ann and my psychiatrist had hope that we could do better. The next medication brought a constant trip through madness and the screaming inside became all I could hear. I couldn’t stay still and walked around while I ate.

Each day, several times, I would go out and pace back and forth on the sidewalk in front of our house with music in my ears and the sun on my face to try to combat what was going on inside. However, that even got out of control. Once when things got bad and I knew that I was not supposed to hit my head, I substituted smacking my knuckles together with every step. I ended up scaring our poor but very kind neighbor when she found me, hands bloody, tears falling to the ground, and me not sure who she was or where I was.

I knew that I could not make this medication work long term. It wasn’t good for anyone.

The next medication was certainly an improvement from the one before. In fact, I began making plans to go back to work and move forward. I started to imagine our life as it should have been all along. But after a month or so I got knocked back on the ground with the return of the quiet screaming, the confusion, and the desire to just close my eyes forever.

Okay, maybe I got ahead of myself with seeing a life of shooting back up the corporate ladder. The hope of just being “normal” is a pretty tempting carrot.

But, it was time to go back to the beginning and work on figuring out what I can and can’t do. That has been the hardest through all of this, trying to find a balance between what I want to accomplish and reality.

Accepting that there are some things I can’t do anymore is pretty difficult, but that acceptance brings with it a peace that had been missing before.

I really had to look deep within and find a way to make this work with what I could do.

I think the difference for us was, with all of these medications, my focus wasn’t on how I liked the side effects, or what I thought of how it was working for me, or really how it made me feel. My focus was what kind of a life would this make for Ann and our family? Could they bear it? Did it make things easier for them?

From my point of view, it is all about them.

And they, in turn, do their very best to look at things from my vantage point, through my eyes. They listen when I try to explain it. They understand as best as someone who doesn’t have a monster inside them can.

Ann will tell me that she can’t understand what it is like to feel as I do, but she understands that it is very real for me and she understands that I am fighting as hard as I can. She knows that I am doing my best, and I know that she knows. That is huge. She is grateful for what I do contribute to our family.  

But most importantly, she is very honest with me about when I am getting out of control or when I need to change my behavior or when I need to just be quiet. I trust her when I’m not sure I can trust myself. Not just her, but our children too. They are now 19 and 21, so it is a natural transition into adulthood for all of us.

They understand that sometimes I need to be alone and it doesn’t mean I am mad at them. It doesn’t have anything to do with them.

They understand that sometimes I just need to be in the room with them but not really interact. This is when I am under control if I just stay quiet and still. This has actually been wonderful for me. I don’t have to perform as I think I should, or do anything other than just keep things under control inside.

I can just be.

Because at that moment that is the best I can do. But I am not off in a separate room. I am with them, we are together; I am NOT alone. I get to listen to and smile inside at their laughing and joking and I hear the conversations and I am still a part of things, in my own way.

And they are okay with that. They understand and they are okay with that.

That takes a lot of understanding on their part. And love. They love me for who I am and for who I am not. And knowing all that they still want me around. 

I am needed even though I’m kind of broken. (Truthfully, I think everyone could apply that statement to themselves and it would fit).

Of course, there are the wonderful, wonderful times when I am pretty normal and we have a great time together, laughing, talking, working, playing. We get to be like other families even though we aren’t.

We have found our “normal” and we choose to make it work for us. It is what it is; let’s not spend time mourning what can’t be and instead find the joy in what is.

I honestly wonder if after all we’ve been through, would we really want to be like other families? We’ve become closer in ways that I don’t see happening in any other way. We communicate clearly with each other and we just genuinely love and like each other. We choose to be together.

And that, added to the medication, therapy, exercise, diet, and rest, makes this something that we have hope of overcoming, or perhaps more realistically, learning to live with and just keep moving forward together.

Knowing this is our life, the only one we have, we take each other by the hand, look first in each other’s eyes and commit our love forever and always, no matter what, and then turn together and face the future head on.

So, why share all of this with you? It’s not at all about giving you a peek into our life and the things that are difficult. 

It’s all about giving you a peek into how good it really is.

What difference can love make with the “mental illness problem”?

I’m realistic enough to know that there isn’t a cure-all for everyone, but if what we have found to work for us could help save other families, then it is worth talking about.

What if each person who is struck with this mental illness bucket of crud, had someone for whom their love was greater than the weight of the illness? Someone they were willing to give everything for and work daily on the incredibly difficult, Herculean self-control required?

What if they, in turn, had someone who loved them no matter what? Someone who was not afraid to be truthful and honest with them? Someone who cared enough to say no when no is needed, and yes when yes is lifesaving?

What if the mentally ill person was, in fact, not alone in their lonely world of mental illness, and they knew it, really knew it deep down inside?

Could this be an important step in moving forward together in beating back the monster that is mental illness?

It’s a choice worth considering.

WHAT DOES IT MEAN TO HAVE MENTAL ILLNESS?

Kind of a scary question – everyone is certain that this is something that definitely happens to others but NOT to them. No one really ever wants to admit that they have a mental illness problem. Because, that means that I am, well you know, nuts, right? No, I’m not nuts, nope not me.

And yet, the truth is: I am.

It took me many years to finally understand and recognize that all these things that have always been different about me are actually things happening in my brain that aren’t necessarily happening in other’s brains. It took even longer to accept it (actually, I think I am still on that journey). Some days I continue to fall in the trap of “if I just push really hard through it I can be like others”. Yet, at the end of the day I know deep inside that I’m not like the other people around me.

That can be really discouraging. And lonely.

The truth is that with mental illness, a person has to expend so much more energy to just do things that many others can do instinctively and reflexively. It takes focus to not hurl hateful statements at others; it takes work to keep the tears from falling for no reason; it takes effort to reach out and pick up that dish or push that vacuum.

Others will say things like “Oh, I know just what you mean, I have days that I am so tired I couldn’t do a thing” or “We all feel like that from time to time”. I know that they mean well. Their heart is in the right place. They are trying to just “buck us up”.

But there really is a difference. I KNOW the difference.

I know what it is like to be pretty tired from a long day at work and feel like “Man, I’d rather do anything than get up and do the dishes”. It is a completely different universe from “I really wish the house would catch fire right now and I could just close my eyes and let it take me because I don’t have any energy left to do what needs to be done.” There is something very real, very physical happening that is fighting our every move and effort.

It’s not fair that others can do things without thought, things that takes planning and focus on my part to attempt, without any guarantee of success.  

Does that mean that I don’t have to try? Do I get a pass?

Life isn’t fair. And that’s okay. 

I know that every other person has things that are so hard for them, things that I probably don’t really struggle with. I will never be an alcoholic. I will never be addicted to gambling. I’m simply not wired that way. Others are. Everyone struggles and everyone has the responsibility to overcome the best they can.

Maybe that’s worth repeating:  Everyone struggles and everyone has the responsibility to overcome the best they can.

My problems are my problems and my responsibility. But mental illness is its own special brand of hell and has the potential to reach out and cause pain to others. The news has ample illustrations of this. So in that way my problem becomes everyone’s problem.

That isn’t fair either. Not to you, not to me.

We can continue to shake our heads and express horror at the tragedies that surround us because of it. Or, we can take a step towards each other and try to see things from the other’s perspective.

What would be a good place to start?  What if each of us really tried to understand what THE OTHER PERSON needed (not necessarily what we think they need)?

Here are just a few ideas:

I think that you need me to recognize that I have a problem. You need me to acknowledge that I need help in dealing with it, and then get that help and keep fighting every day. You need me to accept that my life will forever be different than what I had originally planned it to be. And I need to find peace with that.  

I think that I need you to pay closer attention to me and little signals that I may send. I need you to let me know with love when things are getting out of control and give me a chance to catch it before things get ugly. I need you to let me know that it is okay that I am trying so hard to keep up, and that my best is good enough in your eyes. I need you to still treat me like I’m still one of you - I just have a unique set of quirks. I need to know that you don’t find my differences distasteful.  

Everyone struggles and everyone has the responsibility to overcome the best they can.

Having mental illness doesn’t need to be a life sentence that segregates us from the rest of society. With effort from each side of the aisle we could meet in the middle. Who knows, we may even find that we like being around each other! 

So, how about I look outside of myself enough to help you in your personal struggle to overcome things that are hard for you?

Please know that I am so very, very grateful for all the help and acceptance I get from you.

If we choose to stop and really look at those around us, take a moment to see if there isn’t something simple that we could do that would make their day just a little easier, then pretty soon each of us will find that we aren’t dancing alone.

IF THIS IS ALL THERE IS, IS IT ENOUGH?

Years and years and years ago there was a commercial on TV that we used to tease my mom about. The commercial showed a harried housewife working hard to get through all of the demands on her day and then at the end we see her running a hot bath, pouring in Calgon bath soap. As she slid blissfully down into the tub, the caption read “Calgon, take me away.”

We would sometimes joke with my mom and ask her if she was having a Calgon-take-me-away kind of a day. More often than not, she would tell us that in fact she was.

I think the discrepancy actually came though when her day hardly ever ended in that sought for Calgon moment in a hot bath. It usually just ended with more work to be done.

My guess is that many, if not most of us, can close our eyes right now and place ourselves squarely in this same position – more to do than there is time in the day: our job, work at home, service opportunities, when-will-I-cram-that-yoga-time in moment (which more often than not ends up instead at the freezer door with a large spoon headed for the chocolate ice cream).

And as we close our eyes after leaning against the closed freezer door, we realize that waiting for us in just a few hours is the need to get up tomorrow and do it all again.

Right?

Ever stop and wonder: Is this all there is?

We think that if it is, we may as well just throw in the towel. There has to be more to life than this.

To combat that heavy feeling and give us the energy to keep driving through the day we place benchmarks ahead of us, things that we are working towards, things that we will “get to” after the hard work of today.

An Alaskan cruise.

A promotion at work with a better office and benefits.

Losing 15 pounds, and not finding them again.

A visit to the Hair Club for Men to restore the curly blond locks of 20 years ago.  

A nap (Yes, I hear all the deep sighs on that one). 

We close our eyes and keep telling ourselves: Someday.

What if, however, today is all there is? What if an Alaskan cruise never happens? What if we never get that job that will make everything so much better?

Let’s face it. I’m pretty sure that there is no trip to Hair Club for Men in my future.

So, we lay our weary body down and stare momentarily through the dark at the ceiling and think back on the day. And we ask, "Is it enough?" 

Is the culmination of all our yesterdays into the lump that is today enough?

We can probably grudgingly admit that we would survive without having these dreams come true. In the big picture they really aren’t that big of a deal. After all, bald is beautiful, right?

But what if the benchmarks in front of us are more than distractions from the monotony of daily life? Benchmarks that really matter in the big picture? Benchmarks where we find ourselves holding our breath and clinging desperately to until they resolve?

A sick child to finally get well.

A wandering spouse to beg forgiveness and become faithful again.

A rebellious family member to understand enough to change direction and choose a better way.

An incurable disease to have some sort of relief and cessation of pain.

To not be alone anymore and find that special someone who shares our life, loves us just for who we are. 

These hit harder. Instead of skin irritations that may be soothed by a Calgon-take-me-away moment, they feel like they cut down closer to the bone. And the pain is so acute, so intense, that it becomes all we think about, all we spend our time on, all we are.

They consume and dwarf everything else in our lives. Not much else seems to matter.

But what if that rebel doesn’t change his or her ways?

What if that spouse keeps wandering right out of our life?

What if our child doesn’t get well?

What if we are still alone?

Then when we lay our weary body down at the end of the day and stare momentarily up through the dark at the ceiling and think back on the day, and ask is it enough, do we simply burst into tears and shake our heads?

It’s a lot harder to shrug our shoulders and say it’s not that big of a deal.

Because it is a big deal. If these benchmarks don’t happen, the consequences matter. Really matter.

So, what are our options?

In The Hiding Place, Betsie Ten Boom manages to somehow find things to be grateful for in each day while in a Nazi concentration camp. She even expresses gratitude for the fleas that ate into their skin. Certainly people today might argue if someone could in fact be grateful and loving in the depths of such hate and hell. Isn’t it unreasonable to expect someone to react in such a way, or to even believe that someone could?

Yet she did.

I think the more important question isn’t whether or not she was able to do it, but why she did it, day after day.

What did it change?

It didn’t change her circumstances. It didn’t get rid of the fleas. It didn’t’ bring more food. It didn’t change the outcome of her eventual death in the camp.

What it did change was people. It changed individuals. It changed the spirit within.

It changed what matters most.

So, in the quiet darkness at the end of each day, we face the fact that there are parts of our life that we have no control over.

We can pound the mattress and cry out, wanting with all our might the one thing that we have no way of making a reality. As it consumes us, nothing else can make up for it. Nothing else brings us any satisfaction, because there cannot be any happiness without that one thing being real in our life. The one thing we can’t make happen.

Or,

We can take a deep breath, try to relax our body, and slowly look for and find things that were good today. Small things. Insignificant things. Silly things really. Maybe something as small and silly as a flea.

Slowly, over time, we begin to feel a change. A change that is personal and individual. A change deep within our spirits.  

And we realize that if this is all there is, if this is what life has handed us and there won’t be any more, that it is, in fact, enough.

It is more than enough. Because it is good. We can see it now. The good is visible and bright; the difficult more blurry and faded.

The culmination of all our yesterdays into the lump that is today bursts with sweet, quiet, positive memories that have changed us. Now, instead of focusing only on finding the good for ourselves, we become someone who seeks to help create good moments for others to find in gratitude.

And instead of just changing one person, one individual, we change two. Then three. Then even five. 

The funny thing about learning how to be happy with today is that it helps change tomorrow. Tomorrow now feels full of possibility and potential. We see so many things that we really do in fact have control over and can change for the better. Things we can see that we must change for the better.  

We now have a better understanding of hope. It is the music we hear as we continue our dance – in the rain, in the sunshine, and everything in between.  

CHOOSING TO DANCE IN THE RAIN

“Life isn’t about waiting for the storm to pass; it’s about learning to dance in the rain.”

The first time I read this statement we had just been told that the probable diagnosis for my neurologic problems was Hungtington’s disease. That was a pretty big kick in the head after years of trying to figure out what was going on with me. It had been a long road of more than 5 years of visiting doctors, neurologists, psychologists, specialists. We had ruled out Parkinson’s, MS, and ALS. I remember thinking that we’d go back and take Parkinson’s for $1000 please Alex – if we could choose.

But I was losing energy and the will to keep playing the game. I’m not sure winning the game was even still on my radar at this point.

I was tired. More tired than I could find an adequate way to describe it. I just wanted to close my eyes and wake up when it was all over. Over, or ended. At that point it didn’t really matter.

About that time someone sent us a quick story with that quote about dancing in the rain at the end of it. I remember I just kept reading the phrase over and over again. I could see the words but they didn’t seem to make it off the page.  

Are you kidding me? If ever there was a time in our life when it was “raining”, this was it.

I thought back to the long drive home from the neurologist’s office that day when we heard the news.  Ann and I matter-of-factly discussed ideas of how to get through it. I told Ann that I would write post-it notes with little messages to remind me what to do and put them all through the house to help when I had forgotten. I told her that I didn’t want to have changes made to the house; rather, I would find a way to drag myself around the house to do what needed to be done. I had always been able to find a way to adapt to physical changes in the past. This time would be no different.

I told her that I would be very obedient and do everything she told me to so she didn’t have to worry that I was burning down the house or something while she was at work. I was determined that I would quietly take care of myself and not be a burden on anyone. I knew that I could do it.

I really just wanted to stay home more than anything. I wanted to be together.

Ann was more realistic in her planning. It kept her up at night wondering where the money would come from for the nursing home.

Would we need to sell the house? Would she go bankrupt trying to keep me from just being a big mess on the floor?

Raining?

No.

Not just rain. A bitter monsoon.

Most painful was our family. We both agonized over what this would mean for our two children, Alex 15 and Nick 13. This was really their time of life when things were supposed to be new and exciting. They should feel like they could conquer the world, and be able to count on Ann and me to help set them up to do it.  

The storm clouds and crushing downpour seemed to take away our ability to breathe.

I continued about my tasks at home for the next several days as if nothing had changed. I needed things to be normal. It was three days before I could bring myself to talk to my dad on the phone and tell them our news.

This made it more real and I realized that it was time to move forward, to plan, to prepare.

So, as I stared at this wonderful, piercing, simple statement:

“Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain.”

I slowly accepted that this storm wasn’t going to pass. It was here to stay and we were going to get wet. Really wet. It looked like I was going to drown.

Inside, I pulled my collar up and huddled my arms around my body. I ducked my head as the rain pelted down on the back of my head.

A cold, pelting, relentless rain.

Our once happy and safe-haven home became gloomy and unsure. It seemed that everything shouted out what was to come. It consumed everything and everyone. It was too much for any of us to bear. It felt as if we didn’t dare be happy. Somehow that meant that we didn’t understand what was to come.

After a while I slowly collapsed and lay face down in the mud with my hands over my head.

Things were going to get bad.

Things were going to get really bad.

With Hungtington’s disease, there was no hope. It went from bad to worse to the end.  

No hope.

Wait a minute. No hope?

I raised my head from the mud and shook the water from my eyes. I knew that wasn’t right. All my life I had felt hope. I had known hope. I had lived in hope.

There was always hope.

It just mattered what it was that I was hopeful about.

Perhaps I couldn’t change the diagnosis or what was to come. So why spend energy on what I had no control over?

What I could do was control how I went through it.

 “Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain.”

It wouldn’t leave my mind.

I’m so grateful that it wouldn’t.

I knew that this wasn’t the life that I wanted for my family. We had spent too many years together happy and laughing and learning and working together. All of that to just have things become like this?

No.

This was still the time of life for Alex and Nick when things were supposed to be new and exciting. That hadn’t changed. They were still to feel like they could conquer the world. They needed us to help  launch them on their way.

After all, they are only this age once; there is only one senior year of high school, only one period of band competitions and track meets.  

They still could feel like they could conquer the world.

I shook my head again to clear the water and raised myself to my knees.

No, not still could. They still WOULD.  

Slowly, I climbed up out the mud and stood up straight. With effort, I turned my head up and let the rain come at me directly. At first it continued the same cold, pelting, relentless rain. Painful.

But after a while, the rain that before had been so punishing and defeating, was now actually washing the mud off. Washing me clean. Making me better.

I squared my shoulders and took a deep breath. I faced it head on.   

It didn’t take long, however, and quietly, softly, I felt someone brush against my arm and take my hand. Ann had come. As always, Ann had come.

We looked into each other’s eyes. No words were needed. She was being cleaned by the hard rain just as I was. We would face this and go through it together the best we could.

With joy.

With laughter.

With love.

With hope.

Hope in the things that mattered.

Not long after that we each felt someone brush against our outside shoulders and turned to see our children standing on either side of us, reaching out, taking our free hands.

Yes, this is more like it. This is what we do. This is who we are.

Smiling, we first began to hum and sway. Giggling at mistakes, notes were soon accompanied with words. Our voices called out in the pouring rain.

In a circle, together, we began to move in the mud. We began to dance in the rain.

It wasn’t until we had learned how to dance in the rain that we received a respite in the form of a different diagnosis. Not easy, but not fatal.

The rain stopped and the clouds cleared. With tears on our faces we aimed our gaze at the bright sunshine and let it warm every part of our tired bodies. We were ready to move forward again, having weathered the storm.

I guess we thought that it was our turn to ride off into the sunset. We’d had enough rain to last a lifetime. We were done with it.

But clouds soon began to gather again as other things seemed to deteriorate. With rain again coming down we began working through diagnoses of mental illness in addition to the neurologic issues.

Just when we thought we had made it through.

But, maybe that is the point.

Life isn’t made up of all sunshine and warm summer days. Those days come, and they go.   

And then it storms again.

The truth is there will always be another storm.

But by making it through the current storm, we learn how to make it through the upcoming weather, whatever the forecast.

In the end, the thing that matters most isn’t whether it is raining or not.

It’s if we have learned how to dance.