Category Archives: Life Happens

Why are you disabled?

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An odd experience today. To understand this, you need to know that I don’t have a visible disability. You would never guess I’m disabled or even sick, unless you saw my insulin pump. Even then you would wonder how diabetes can be disabling. I get it. You can’t see the hundreds of little ways my life has been affected by illness. And, since I don’t wear a flashing neon sign either looks can be deceiving.

Today, a stranger wanted to know why I had a service dog. Not being in the mood to disclose information, I answered because my dog mitigates my disabilities. Okay, maybe I shouldn’t have used the word mitigate. It confuses people. The next words were “You can’t be disabled. My cousin is disabled and she doesn’t look like you.” I sure hope not. I have many cousins, but none live near me. There is absolutely no way this woman’s cousin could be related to me.

And I said as much. A bit snarky, I admit. I am tired of people thinking all disabilities “look” alike. Please, tell me what a diabetic looks like. Tell me what someone with vascular disorders looks like. Tell me what someone who can’t eat looks like. Tell me what someone with PTSD looks like. Tell me what someone with Autism looks like. Yeah, you can’t. Because we are not our disabilities. We are people who look just like you.

 

Want

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I’m sure there are a few people who are completely satisfied with their lives and don’t feel the urge to add something. For most of us, want is part of life. There are those who want world peace, those who want economic security, those who want health care for all and other large goals. There are those who want to lose 10 pounds and those who want a candy bar. It’s a human emotion…a gnawing feeling that we try to itch away.

Earlier this week, it was revealed that a healthcare worker who had been exposed to Ebola violated quarantine. Why? She wanted soup. She was vilified by the media for her selfishness.

When we want something, most of use try to figure out how to do it. When I want to go visit someone, I’ll make it happen. Sure, there are hurdles to overcome. But if I really want to do something, I’ll find a way around those hurdles. When I don’t really want to do something, I’ll find ways to make those hurdles into mountains so the “want” is just not attainable.

Want. Such a loaded word. It can drive you to change the world. Or change yourself. It’s a powerful descriptor for why people do what they do. Want can bring joy, satisfaction, release. It can also cause destruction, pain and suffering. Two sides of the same coin.

Your challenge: Think about what you want….big or small. Think about what you would need to accomplish that. Consider if it helps or harms others. Then, make a choice. Make a change. Do what you want and see how you feel. You just might learn something.

Death

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Death is in the news a lot. Just turn on the television or pick up a newspaper and you’ll see story after story about death. Look on social media to read all about death. It’s everywhere. Genocide, homicide, filicide, patricide and suicide. They’re all around us. So are the people with opinions about death.

So, there’s death. The end of life. It’s a fact. Everything dies.. No sugar-coating death. We can spend billions trying to find the fountain of youth and yet, death catches up with all of us.

Different ideas around death exist in every culture. Some mourn for a specified period of time, some hold wakes to celebrate a life well lived. Some have religious laws that delineate how to handle death. How we cope with death is determined as much by the beliefs we were raised with as our visceral reaction to death.

When we see the death of people during wars, we become outraged. When we read about a mother attempting to kill her daughter, we become angered. When we see a story about a child killed by their caregiver, we protest the inadequacies of the law. When we see a story about suicide, we cringe. That line created by morality is in a different place for each of us.

For some, dying by our own hand is a criminal act. Life should be preserved at all costs. Whatever Deity we hold dear will punish those who commit suicide. It’s so ingrained in American culture that even life insurance payouts are denied to those who commit suicide. We wring our hands, bemoaning the “untimely” death and crying for those left behind.

I believe that death is death. When you remove the layers of religion, culture, tradition and morality….death is still death. You can’t change that fact. You can impose your moral judgment. You can express disapproval. You can argue that your Deity would not approve. But, is any of that factual? The answer is no.

Whether death occurs as an act of war, from negligence, by the hand of another, by old age or by our own hand determines our reaction to death. I know some deeply spiritual people who have told me about the moments of grace they find while sitting with people as they drew their last breath. I also read about people so sure in their religious faith that they KNOW their Deity would not approve of suicide. To those people I offer John 8:7.

My goal here is not to claim moral superiority. It’s not to tell you how to feel about death. It’s not to change how you feel about religion. None of us knows what hand we’ll be dealt. None of us that are still breathing can make any claims to understanding what happens after death. When you publicly express your judgment about death, you are claiming moral superiority.

My goal is to simply state the fact that death comes to all of us. You live your life as you are able. Leave whatever legacy you have your heart set upon. Just remember that regardless of how you die, someone will find fault with it. Someone will judge you. I think I’m going to spend my time focusing on improving myself instead of trying to prove someone else should conform to my ideals.

Robin Williams and Me: The Killer Among Us.

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Reblogged from Big Red Carpet Nursing. I know it’s been a few months and Robin Williams has dropped off most people’s radar, but this is why his story is still relevant….

 

Robin Williams and Me: The Killer Among Us..

Invisible

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Today, I’d like to be invisible. I’d like to go to the places I would normally go and not have people notice me. I’d like to just get through one day without the conversations that I must have with people who don ‘t seem to understand. I’d like to go one day just doing my “thing” and not have criticism thrown at me from all directions. One day without being judged.

I imagine it would be a peaceful day. Not in a smell the sunshine kind of way, but perhaps in the way I imagine people not living with chronic disease or mental illness have. It’s been so long since those days existed for me that I barely remember what it’s like to be carefree, like most of the people I know claim to be.

Yes, that’s right. I said claim to be. I just can’t fathom the idea that everyone else is living a stress free, no complaints life. It seems foreign to me that everyone else can completely cope with all the things going on in their lives. I think that they are just as likely to fall apart as I am. They’re just better at hiding it.

No one likes to admit weakness. No one likes to lose control in front of others. No one likes to be ridiculed. No one likes to be shamed, No one likes to feel helpless. And yet, the world is full of people who thrive on making others feel that way.

As a society, we have made it okay for people to do all of the above while we ignore the person on the receiving end. We have made it okay to mock people who are different from us without regard for the impact our words and actions have on an individual. I’d like to believe it’s a defense mechanism….deflecting someone’s comments away from ourselves lest we crack. But that’s not right either. Understandable, but not right.

Think before you speak. Think about how your actions impact others. I’m not talking on a global scale here. Just in your day-to-day relationships. Set aside your fears of being the next target and show support for someone who is being targeted. Set aside your need to feel “better” and understand that we all need to feel accepted. Recognize the beauty of diversity and the power it has to bring beauty to our lives.

Most of all, know that many of us struggle daily to keep up with expectations. Try not to make it harder. Try not to discourage others. You have no idea if one day, you’ll be the one who needs encouragement to carry on.

Autism

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I am Autism. I am a parent. I’m a spouse. I hold a volunteer job. I’m a licensed teacher. I’m a Scout leader. I have two college degrees (almost 3). I’m an advocate. I’m a friend. I’m a caregiver. I’m female. I’m in your community.

I am Autism. You’ve met me. I tend to blend in as that’s what I was taught as a child. But if you get to know me, I’m quirky. Or weird. It seems like I know everything. I put pieces of information together faster than most. I get along in groups. I am fine by myself. I do better creating than I do following.

I am Autism. Like you, I am an individual. I am unique. No two people with Autism are identical…just like no two people of Italian descent are identical. There’s a reason you’re hearing more about Autism acceptance. It’s okay to be different. Rather than focusing on those differences, let’s focus on the fact that we’re all people

I am Autism. I see the world through my experiences They provide me with the means to understand the world. Honestly, that’s the same for everybody. What you know is what you work with. The difference is, I generalize my experiences. If one person does something, then every person will do the same thing. Unless… I have a different experience that shows me other options. It’s both rigid and flexible thinking at it’s finest.

I am Autism. I don’t intend to scare you or freak you out. I have routines and habits that are probably borderline obsessive. This is how I manage in a world that was designed with someone else’s logic. I’m trying to make sense of things. Sometimes the world becomes too much for me to handle and I withdraw. I’m not trying to be rude, but I need space to process that which overwhelms me.

I am Autism. All I ask is for you to accept my quirkiness. Accept that I see the world differently. Accept me and in exchange, I’ll accept you and all your quirks. It’s okay. We’re all a little different. That’s what makes us great.

Group Therapy

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I’ll be upfront here. There’s two types of group therapy in my book. One is the kind doctors suggest as a way to “get help.” The other is the kind where people get together, share their woes, have a glass of wine (or two), laugh and generally leave feeling better for the time spent.

My stance on type 1…hey, if it works for you. It’s not for me, but I won’t tell you it’s not for anyone at all. But when I’ve made it clear that it’s not for me, you need to back off. Period.

On the other hand, I’m a huge fan of the second variety. My favorite lines from an old movie:

Sue Charlton: People go to a psychiatrist to talk about their problems. She just needed to unload them. You know, bring them out in the open.

Michael J. “Crocodile” Dundee: Hasn’t she got any mates?

Sue Charlton: You’re right. I guess we could all use more mates. I suppose you don’t have any shrinks at Walkabout Creek.

Michael J. “Crocodile” Dundee: No back there if you got a problem you tell Wally. And he tells everyone in town, brings it out in the open, no more problem.

And that pretty much sums it up.

Medley

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Don’t let them in, don’t let them see.

Be the good girl you always have to be.

Conceal, don’t feel, don’t let them know.

This popular song summarizes how many people feel today. The image we project is the one people judge us on. We are judged harshly every day by many people, despite the fact that few of us are comfortable in our own skin. My business somehow becomes everyone’s business. Gossip, rumor and cliquish behavior funnel me toward hiding anything that would make me stand out in the crowd.

When the days are cold

And the cards all fold

And the saints we see

Are all made of gold

The people who do the best at projecting a likeable image become our heroes. These can be our peers, our teachers, entertainers, musicians and sportsmen. For at least a short period of time when we first identify these people as having something we feel would want, we talk about them. We try to get close to them, hoping some of their gold will rub off on us. It’s lonely when you’re not in. I became part of several groups, hoping that not only would the group popularity bring me closer to gold, but also that the other participants would validate me. I needed to be told that I was also made of gold.

The struggles I’m facing

The chances I’m taking

Sometimes might knock me down, but

No I’m not breaking

Self-esteem is something we all struggle with developing. Some people are naturally more confident than others, but the fact remains that we all know we’re being judged. We all know what it’s like to come up short. We all know what it is like to be labeled. Yet, we all do it. Because we know what we’re doing, it’s very hard to believe no one else is judging us. That voice is always there, even when I succeed and achieve my goal. Too many people have told me that I can never be successful; that I can never reach my dreams.

To dream the impossible dream

To fight the unbeatable foe

To bear with unbearable sorrow

To run where the brave dare not go

I started to realize that I needed to walk my own path. I need to find my own gold. Those people who told me I couldn’t or failed to support me as I was growing up had no place in my life. For every teacher who ignored me or shushed my voice, there is one who became my champion. For every person who decided they were better than me, there are five who recognize we’re all in this together. For every adult who wrote me off because I didn’t fit in their box, my desire to walk past them grew stronger. I will dream, I will fight. I will feel. And I will run.

You can be amazing

You can turn a phrase into a weapon or a drug

You can be the outcast

Or be the backlash of somebody’s lack of love

Or you can start speaking up

My choices are slowing freeing me to become the person want to be. I am standing up for myself and many others who feel they have no voice. My fear of being a victim of repercussions is fading. I can look in the mirror each morning and accept that while I face many challenges, I am strong. I have much to learn and I am ready to accept that challenge. I know I’ll fall down. I know people will continue to try to tear me down. Unintentionally or purposefully, their words will hurt. Rather than giving up on my dreams, I’ll take that hurt and use it to remind myself that some people are only happy when they are stepping on other people.

You said, remember that life is

Not meant to be wasted

We can always be chasing the sun!

My dream is to help people communicate. Whether it is formal communication or just speaking up for what’s right, people need to be heard. Teenagers need to be heard over the din of their parents’ childhoods. I don’t want to be held back by those who haven’t moved forward in twenty years. We will leave footprints in history, just as those who came before us. The poets, the dreamers, the inventors, the artists…they are my tribe. Our collective voice will lend itself to overcoming the bullies, naysayers and box makers. We will chase the sun and the world will be better for our efforts.

I try my best to get through every day
Without confrontation
Stayin’ out of everybody’s way
But then on occasion
Somebody steps across the line
And it’s not too long before they find

 

I will not back down
When you push me to the wall
Expecting me to fall
I will not give in
I am not afraid to fight
For what I know is right
I can only take so much
And when I’ve had enough
It’s not in my blood to just lay down
I will hold my ground ~ Darryl Worley

I’ll Be There

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One of the most disappointing things for me personally is when people say “anything, anytime” and then when you reach out, they’re too busy. I get that everyone has lives and commitments, but do you really not have time to connect with other people? Is it too much to ask nowadays for people to help someone else?

I have a younger friend who is coping with chronic illness, 2 kids under the age of 5 and a military spouse. I’m finding out that most of this person’s “friends” have become scarce as life has become complicated. Just when the person needs it most, people disappear.

It’s hard maintaining relationships with all the distractions available today. We enroll our kids in activities, get involved in said activities as adults and forget that the quiet moments are important. Our lives shift and change, which leaves many people in a state of aloneness. Perhaps our life circumstances change so dramatically that our “friends” no longer feel as if we fit into their lives.

I was speaking with another friend today and I asked her if she would be free to come over for a small gathering of friends in a few weeks. The date just happens to be the day before her birthday. I told her “Great!” we’ll have a party at my house so she doesn’t have to do anything. Just invite your friends, I said enthusiastically. And then, she told me she feels she only has two and I’m one of them. This friend is caught in the sandwich generation and as the family needs have increased, her “friends” disappeared.

I’ve come to realize that people no longer want to work at relationships. According to some statistics, marriages only stand a 50% chance of surviving 5 years or longer. The most common reason is listed as “irreconcilable differences.” I think that logic could be applied to all our relationships that have faded. I mean, we still get along but there is just nothing holding us together.

I mourn for friendships that have passed. People I thought would be part of my life for a very long time have departed. As I’m seeing this pattern with other people and their relationships, I don’t think it’s me. My current theory is that our lives have become so hectic combined with the need for instant gratification, we just don’t want to become involved with other people.

I maintain friendships until it becomes painfully obvious that it’s time to move on. I’m getting better at recognizing when I’m being pushed away. I don’t fight nearly as hard as I used to when I feel people pulling back. Perhaps I’m to blame for the decline in my life.

For those who get to know me, you will soon discover that I will answer my phone at 2am. I will do whatever I can to ease your burden. I want to walk these paths with you, regardless of their difficulty. It’s a choice I gladly make. I only ask for honesty. I don’t like games. I truly don’t understand them most of the time. Either you’re in or you’re out. It’s pretty straightforward in my world.

Ponder this…as your life changes, do you forget to water your garden of friendship? Do you have regrets about letting things wither and die in your relationships? What is so absolutely important in your life that you don’t need friends?

In today’s world, it’s pretty simple to let someone know you’re still there for them. A text, a social media message and *gasp* a phone call can be the gentle shower that your garden needs. We’re all in this together.

Your challenge: Make contact with a friend you haven’t connected with recently. The time you spend will be returned to you tenfold. We all need to know someone cares enough to reach out. I know I’ll be there.

Lean on Me http://www.youtube.com/watch?v=FZE16KTpu_M

I’ll be There  http://www.youtube.com/watch?v=KnDm3qr1Knk

 

Broken

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A broken bone can heal, but the wound a word opens can fester forever.~ Jessamyn West

We’ve all had the experience of someone saying something that cuts to the heart. Sometimes it’s malicious but most often it is failure to understand the impact the words have on an individual. I know you can’t control how someone feels. The perception is completely in the heart of the recipient. I wonder, if we thought more about the consequences, could we stay our voice until we are sure of what we want our words to communicate?

I’m having a rough go of relationships right now. I think back to even five years ago and how many people I could call on a moment’s notice and we could find something to do. Since then, many people have disconnected themselves from me. Sometimes, the words came and they were harsh. The number of people who have left my life because they didn’t know what to say is significant. But, I made new friends. I moved on. Life changes and so do the people who fit in it.

What did I do wrong, to chase people away? In some cases, I failed to nurture the relationship. I got so wrapped up in taking care of myself, I forgot to water my garden. And then I think, relationships are two-way streets. I don’t recall missing phone calls. I don’t think there were phone calls. I can safely say that chronic illness drives people away. Other people left because I starting standing firm for things I believe. Basically, I rubbed them the wrong way. Yet, some just faded away. I’ve been told that there are reasons for all this. I wish I could figure out those reasons.

I think I’ve burned a bridge unintentionally. I’ve been revisiting events and conversations for about it for 2 days now, looking at all the angles and analyzing the data. But there is still one angle that I can’t quite grasp. The words being used don’t make sense. Should I stay and try to salvage the relationship on the basis of it’s a misunderstanding that time will take care of? Or do I flee, torch in hand. It’s probably going to take a few weeks to put that relationship in the right place.

There is another relationship that I’m struggling with, a more personal one. I have made some new friends. I reached out and made considerable effort to connect. I guess I knew from the beginning that I was trying too hard. But, I really wanted to establish a friendship. Call that my social deficit…sometimes I just really want to make something great happen.

A few weeks into this process, I could tell I was an interloper. Another friendship existed and while I felt I could co-exist with that friendship, apparently I can’t. Conversations were had without me, even though the topic involved me. I knew what was happening by the tenor of the conversations. Little hints dropped here and there that I suspect were meant to soften the blow of being dismissed. I suspect that because I too have used this strategy. Letting people down gently is a noble thought that rarely works out.

I don’t like this feeling of dismissal. It feels like high school all over again where I’m just not good enough to be one of the popular kids. It shouldn’t bother me, but it does. I feel those same feelings of being strung along. Not quite to the level of saying I feel used, but I most definitely feel snubbed.

And then I realize that the other parties may not know how things look to me. Just because once I commit to something, I’ll stick with it until the end doesn’t mean anyone else will. Just because I work very hard to help people feel comfortable around me doesn’t mean they will. It’s just plain awkward.

So yes, I’m hurt. I’m hurt because these friends agreed to something and then backed out. I’m hurt because I was never really in the equation even though I was led to believe I was part of the equation.  I’m hurt because I wasn’t told the truth. I would still be hurt if I was told they thought I was party crashing, but I don’t think it would be nearly as painful as knowing that conversations were had and a plan to back out was implemented.

As one saying goes, some people are in our lives as lessons. Obviously, this week I needed schooling.  Lots of schooling. I needed to feel how my little white lies were hurting others. I needed to feel the sting of disappointment before I got too far ahead of myself. I needed to learn that while I crave connection, others do not.

So, your challenge. Try to use your words wisely. Don’t promise me a date when you have no intention of keeping it. If you can, think about making and keeping a date, even if it’s just for coffee. There’s so much aloneness in the world that your offer could be the lifeline I need to keep looking forward. The  hour you spend keeping me company is a gift in my eyes.

Above all, be true to yourself. You probably don’t want people to start thinking poorly of you. Your words, coupled with your actions, tell me what kind of person you truly are, through and through. Make sure that what I see is something you can be happy about.

Please try not to break me. I feel things very deeply and I can only handle so much rejection before I crack. You may not be perceptive enough to see the duct tape and super glue. I still believe that it’s there for anyone who takes the time to look for it.

PS- Yes, I have Autism. Yes, I know that impacts my perceptions and feelings. But, you don’t have to be Autistic to know that words hurt.