Category Archives: Life Happens

Conform

Posted on by
Reply

This little light of mine, I’m gonna let it shine.~ Harry Dixon Loes

 

Here we are again, in the midst of what many consider to be an important time of year. My social media feed is telling me how to wish everyone a wonderful season, in language meant to show respect for every single person’s beliefs. Honestly, I don’t know what the cashier at Walmart believes. Do I risk it by using one of the phrases or just nod my thanks? Social dilemma?

It isn’t just the holidays (oops, that implies Holy Days, which might offend someone). I struggle with all kinds of celebrations. I also struggle with social demands…requests to fit in with a group. I think through thousands of things before I speak. Before I accept or decline. Before I act. It can be quite exhausting.

Conforming is exhausting. Yes, I accept these expectations as part of getting along, but that doesn’t mean it’s easy for me. The best thing I can compare this feeling to is the need to have the latest brand of clothing or shoes or to be seen with the “in” crowd. At least you can purchase those things (yes, even the crowd; see celebrities) and blend in. But when you’re wired differently and no one really knows, it’s a huge challenge.

So I don’t always fit in. I’m old enough to get that and live with the fact that I rub some people wrong. I worry about people younger than me who still struggle to conform. There is so much emphasis on fitting in at school, at the store even at church that it’s no wonder parents are getting burned out. There are so many expectations of quiet, well-behaved (yeah, perspective matters) children that just aren’t natural. I grew up with children should be seen and not heard. I learned as a parent that not hearing my kids meant they were up to something….

So, here we are. What to do?  My answer…let your light shine. Together we make up a beautiful portrait of humanity. Sure, we need to respect each other (hence the requirement for conformity), but we don’t need to be exactly alike. Our differences make us stronger as a whole. Let’s teach our kids that being different is okay. Let’s teach our kids that each light is valuable and part of the chain that keeps our paths illuminated.

And for those who wonder…the cashier wished me a blessed day. I wished her a Merry Christmas. I’m not totally clueless…..

 

 

 

New Normal

Posted on by
Reply

You know how there are some phrases that just rub you wrong?  Push your buttons? Raise your hackles? Yep, that feeling.

There is no such thing as “the new normal.” For me, life just goes on. Every day brings change. There really never was a “normal” point in my life. I suppose if you used the picket fence, 2.5 kids example as normal….well, not sure what you did with the other half of a kid.

My point is, change brings about more change. Just because your life changes doesn’t mean it’s not normal. It also doesn’t mean it’s going to stop changing, thus my objection to “new.”  It just is. We live in a state of constant change and trying to label that is just an exercise in futility.

Instead, try living. Stop trying to pin labels on everything and everybody. While it is human nature to want to categorize things, labels are pretty meaningless in reality. Live. Love. Let go.

No, Really?

Posted on by
Reply

In the business world, they use the acronym “subject matter expert” or SME to describe a person who seems to know a lot about a particular topic. But what about outside the business world?

Take parenting. I’ve successfully launched three young adults on their chosen career paths. Twenty-one years of parenting does provide a certain level of expertise, at least about my own children. I have to keep my chortles to myself when I read about women who have these absolutely perfect ideas about bringing a tiny human into this world. I remember being one of them…21 years ago. I have since learned, as many of us do, that things rarely go as planned.

Doctors are another group that doesn’t seem to think anyone except them could be a SME. I live with my multiple disease processes. Every. Single. Day. I didn’t learn about them in a semester long class. I didn’t write a research paper or capstone project. Actually, I might have done the equivalent trying to learn about the 1:50,000 occurrence rate diseases (translated: rare) that no one seems to know how to deal with. But even with that knowledge about a single disease, I still have to consider what domino effect is triggered in my body when one of them acts up. So, yes, I am a SME on myself. Don’t look at me like that….when you live waiting for the other shoe to drop because you know it eventually will because you have studied everything available to you so you can educate others…yes, that’s a fair assessment.

Yes, it absolutely is hard not to laugh sometimes. I struggle to keep a straight face as I watch people learn about life’s curveballs and see their surprised expressions in photographs when the plan changes. Maybe it’s mean, rude or otherwise unkind. I really do try not to do it out loud. I call it controlling my inner snark.

And I apologize in advance if you catch me with a little grin sometimes.

Make Me

Posted on by
Reply

How many times have you heard or said this taunt? I know I say things along these lines. I’ve done it for as long as  I remember…Eat your vegetables! Make me! Clean your room! Make me! Take out the trash! Make me!

Almost every time, the words are said out of anger or frustration. It’s like reaching the point of no return and digging in your heels. Challenging someone to force you to do something you have no desire to do. I dare you…make me do this.

Getting boxed  into a corner brings out this phrase. Not being able to process a situation brings this out. Not comprehending how far along that path someone has already traveled also leads to this type of confrontation. At some point, communication just breaks down and, well, make me.

I honestly can’t think of a single person I’m around on a regular basis that hasn’t gone into make me mode at some point. I believe that most of these confrontations resolve with some space and maybe a time out. But what if they don’t? What happens when someone decides to dig in and truly make you do something?

You have a choice. Recognize the confrontation for what it is. Understand that the other person has reached their point of no return. Step back. Breathe. It’s not easy to do in the heat of the moment. I get that. Sometimes my sense of “justice” demands that I dig in as well. When that happens, let’s just say that there’s smoke behind me from the bridge I just burned.

Sometimes, you do have to be the person who gives a little. Sometimes, you are the person demanding a little. Either way, you’re much more effective if you step back from “make me.” That’s a challenge. It riles people up. And resolving things is much more difficult when people are riled up.

Your challenge: Breathe. Pause. Regroup. Be respectful. Evaluate your options. Keep in mind that what you feel is right may be the other person’s point of no return. Work to improve communication so you don’t run into “make me” moments. Trust me, it’s much less stressful to pause than it is to get caught up in the heat of the moment .

It’s a People Thing

Posted on by
Reply

This week brought 12 unfriendings, 3 really awful comments to be deleted and a need to start censuring posts. I’m reminded that what I put on the Internet takes on a life of its own that I have zero control over. I guess we all need a reminder every once in a while.

The unfriendings happened for several reasons. The most common reason was a comment I made (as well as a blog entry) supporting police officers. Not dismissing recent events. Not shaming or blaming. Just stating that police officers are our thin blue line that keeps us safe. Suddenly, I’m a racist pig. I’m a 1% who could never understand struggle. I believe that the victims are completely at fault. Literally, my social media blew up in my face.

The second most common reason is a post about World AIDS day, which was December 1. About 6 people  informed me that I was going to hell. A few others took it upon themselves to point out that December is the month of Christmas and how dare I bring up such an un-Christian topic. And yet a few more condemned my efforts to raise awareness about a disease that affects a broad spectrum of society. I was told that AIDS doesn’t deserve research dollars because there are  other diseases that people didn’t “bring on themselves.”

Truth? Your attitude shows me your true colors. Anyone who has actually met me will tell you I get along with 99% of the people I meet. They’ll tell you my personal space is comfortable for them. It’s a no judgment zone. They can tell me anything because I listen and empathize. Yes, I have the things I feel passionate about. Yes, I have opinions about politics, religion and even justice. I’m human just like you.

However, I don’t believe my opinions are the end of discussions. I don’t believe my ideas are superior to anyone else’s. I don’t believe that we all have to be passionate about the same things. I certainly don’t believe that I must shove my beliefs in your face.

So, to those who can’t see the hurt they are causing, I hope one day you realize that causing pain doesn’t accomplish anything. To those who feel they must take sides and polarize communities, I wish for understanding. To those who carry deep passion, I hope your love can extend to those who may not see your vision.

This isn’t about politics, ethnicity, religion or equality. It’s about people. It’s about accepting that we all feel differently about events and we all respond differently to actions. It is about trying to understand each other better so we can close gaps and cross bridges. It’s about seeing past our own perspective to learn what other people see.

Your challenge: Step outside your zone. Not your comfort zone, but the one where the people around you all feel similarly about things. Look at where you live and try to understand your community from a different perspective. Take the time to think about what you’re going to say and how it could impact others. These few gestures won’t take much of your time and the insight you gain and then share makes a difference.

Cope

Posted on by
Reply

Cope:  to deal with and attempt to overcome problems and difficulties —often used with with <learning to cope with the demands of her schedule> ~ Merriam-Webster

 

I’ve spent the last few days just getting by. Some of it is my own fault for not taking care of myself. Some of it was just so random…things you would never expect. A close friend struggling with a difficult situation. A friend’s service dog was hit and killed by a car. More news stories about violent deaths in my city. More stores about bombings overseas. Posts in my social media about missing and exploited children. Ferguson. That’s a lot of things to cope with.

I know I’m not the only one who gets told to “just deal with it” and cope. I’m starting to really dislike that word. Cope implies that I can contain all my emotions. Cope implies that I have to keep a stiff upper lip. Cope implies I’m less than if I cry. It’s a lousy piece of advice to give to someone who feels deeply.

There’s a lot going on this time of year where people get told to cope. The holidays bring strong emotions to the surface for many people. There are empty seats at the table. Empty stockings in times of relative bounty. Empty hearts that are still healing. And the best advice we can offer is to cope?

I think not. I’d like to think my readers of this little blog can sense my emotions when I write. I try to use words that convey what’s going through my head and my heart. I think we can do better. I think we should do better.

Instead of telling people to move on, get over it or cope…try a random act of kindness. Take a coffee or tea to someone. Bake a few extra cookies for a friend. Invite people to share in the liveliness of your home. Try listening without judging. Kindness is free….sprinkle that stuff everywhere!

Your challenge: Let go of judgment and stigma. Take a chance on offering a smile and a handshake. Help where you can. Be kind. And please, don’t tell people to cope.

 

Diabetic Love

Posted on by
Reply

To love me means you accept all the messy bits as well as the fun-loving “normal” bits. My spouse and I are approaching 24 years of marriage. Fourteen of those were filled with the everyday things…careers, raising children, helping with the kids’ activities. Fourteen years of “normal,” although you must remember that normal is a dryer setting.

Now my spouse has learned to wake me when my service dog whines in the middle of the night. To tell me when he smells insulin. To not freak out when he has to do an injection or help me change a pump site. To know where I keep the stash of carbs for emergencies. To accept that I don’t eat what he eats anymore. When to rush me to the emergency room and when to keep me home. I’m sure it’s exhausting for him.

Most of my friends understand diabetes to some degree. They know what Blizzard’s alerts look like. They know she carries meds and carbs. They know which restaurants I like. I don’t think they live in a constant state of awareness about diabetes, but they know I am a diabetic.

November is diabetes awareness month. My message here is to be aware. Be aware of your own health. Know the signs of diabetes and don’t be afraid to ask. Most of all, don’t be afraid of people with diabetes. It’s manageable.

http://www.diabetes.org/

 

 

 

It’s Cool

Posted on by
Reply

This week brought several stories about Autistics into the news. I’ve read so many comments on social media about Autism that my head hurts. Why? Because people are arguing and judging things they don’t understand. While none of my contacts has said anything to me, I wonder if some of the commentary applies to me.

Jerry Seinfield stated in an interview he thought he might be Autistic. This has sparked huge debates about diagnosis and “attention seeking” behaviors. Some people seem to feel that the only “true” Autistics are those who are diagnosed by medical professionals and have severe impacts in their lives. Um, yeah. It’s called a spectrum for a reason.

I’d also like to point out that until recently (about the last 15 years), Autism awareness was pretty low. Unless you had classic Autism, with all the severe behaviors associated with classic Autism, you weren’t Autistic. Many people over the age of 35 are just now figuring out why their lives are what they are and it isn’t because of more stringent or even looser diagnostic guidelines. It’s because we’re becoming more aware.

Some of the commentary by non-Autistic “experts” indicates that people who self diagnose are wrong and trying to grab the spotlight. One BCBA flat-out said it should be illegal to self-diagnose. Illegal? I self-diagnose all kinds of things including colds, stomach bugs and other maladies. Thanks to the information that is readily available 24/7/365, people guess at their conditions all the time. Are they wrong? Are they doing something illegal? I think not.

John Elder Robinson is recognized as an Autism expert. He also has Autism. Mr. Robinson was the lone Autistic voice in an organization supposedly dedicated to helping Autistic people. He left that organization in 2013 because of their stance that Autism needed to be cured. Well, and the fact that the big line item in their budget is advertising, not helping Autistics.

In a piece on the blog Psychology Today, Mr. Robinson elaborates on the polarization of the Autism Community. Read the full article here: http://www.psychologytoday.com/blog/my-life-aspergers/201411/jerry-seinfeld-and-autism

Assume you actually clicked out to the article, wouldn’t it be nice if we could just embrace people and not rip them apart? I’d love to know why people are so suspicious of motives when public figures share information. Then I think about me. Here I am, writing this arguably small blog. I’ve outed myself on several topics. I have received comments like “I never would have guessed!” What is my motive? To help people become more aware.

So, there you have it. The more you know, the broader your view of the world. It’s so easy to isolate ourselves. Quick, name 5 of your immediate neighbors! I know I can’t.

It’s cool. We all are busy with our lives. My passions are not your passions. I appreciate people taking the time to read this little blog. I hope you’ll learn something. I hope you won’t judge me too harshly. Most of all, I hope you’ll understand that people are people…deserving respect for their journeys even if you don’t understand their path.

Judge Not

Posted on by
Reply

For every action, there is an equal and opposite reaction.~ Sir Isaac Newton’s Third Law of Physics

Being who I am is complicated. If you nudge on part of me, something else shifts. Medically, this drives my doctors nuts because things happen that shouldn’t happen. Mentally, this is incredibly taxing. Trying to keep my ship on an even keel is a whole lot of work.

It’s not all done by me though. My family, especially my spouse, are fabulous. During my recent illness, I was in the land of “not fun” for about a week. It was really not fun for my spouse.

I’m starting to somewhat understand the talking heads that want to empathize with caregivers when they snap. In the last few days, I’ve found out that caring for me when I’m not well is hard. One friend said it was weird seeing me act mentally ill. Yes, that was an educational opportunity right there. The point is, I’m starting to “get it.”

That does not mean I condone the actions of those who snap and take it out on their charges. As I don’t remember about a week of my illness, I think I can safely speak for the people who rely on others to care for them, even when it’s really hard. There is pain and regret that I am so “hard” to care for sometimes. I feel remorse for putting my spouse through “hell.” I don’t remember the specific incidents, but I can hear the pain in people’s voices as they gently try to fill in the blanks for me.

Now imagine a person who can’t communicate as I am able. I feel all those things and can’t express them. Those are very powerful feelings to keep bottled up. So when I act up, I’m not trying to be difficult. I just don’t have any other way of letting you know what’s going on with me.

Empathizing with people and feeling compassion towards others are good things. They keep us human. Those qualities and the actions spurred within you balance out the people who don’t share those qualities and make life that much more difficult for others. Just don’t move into apologizing for others. It’s not your job.

The recent murders/attempted murders of disabled children were choices made by their caregivers. They were choices. The caregivers must now face the equal and opposite reaction of their behavior. We cannot define what those caregivers should feel. We cannot judge those caregivers. We can hold them accountable for their actions. And that is what keeps us as a society in balance.

Cynic

Posted on by
Reply

Sometimes, it’s not easy to see the glass that’s half full. I have my good days and my not so good days. Some days I seem to be the eternal optimist. Others I’m just rolling with it. Still others I’m about as negative as they come. I like to think we humans are all like this. So, most days I walk around with a half full glass.

Recently, that’s not been working for me. A number of things have happened in the last few weeks that make me feel like the glass is half empty. Or even three-quarters empty. There’s been some friendship stuff. There’s been some family stuff. There’s been a whole lot of medical stuff. There have been set backs on so many fronts. None are insurmountable. Compared to many, many other people my problems fall under “first world problems” as my daughter calls them.

So, I’m cynical right now. Faced with yet another health issue, I’m worrying about how things will turn out. Will the doctors listen to me? Will they understand just how stressful this is for me? Will they do what I ask them to do and not get so wrapped up in how things *should* be? These doctors don’t know me and it’s my first experience at this hospital. My Autism is telling me I must have everything planned. I have to know what’s going to happen. I have to know the outcome. But, that’s just not possible. My body tells me that my mind is just along for the ride.

I have people telling me to trust that everything will be fine. I’ve been down this road enough to know that “fine” is a very broad state of being. I have to trust people I will have met maybe once for something that has gone wrong more often than right. Stop thinking like that I’m told. Stop worrying. It will all be fine.

I wish. I really, really do. I wish I could believe that everything will be fine. I wish I could go into this expecting a great outcome. But I can’t. Fear, hope, helplessness, frustration. And, because of past experience, a whole lot of cynicism.

The one bright spot in this current mess is my primary care provider. She’s been working with me since February, when the local military healthcare providers decided to fire me as a patient. She inherited what is now known as a “hot mess.” In 8 months, we’ve come to understand each other. So when I messaged her that I needed help, she called me almost immediately. Her response was to ask what I needed, talk through the options and then handle the need. I must say, I found it encouraging. Maybe, just maybe, things will be okay.