My Inner Self and Outer Elf

It seems everyone has something about themselves they wish they could change.  Some physical feature.  As many self-help gurus and pop artists will tell you, it’s important to embrace your physical traits because they help make you unique.  Yep, this is one of those self-image posts.  I thought you should be warned.

It’s so much easier said that done.  We all complain about something.  And I don’t mean weight, because we can rationalize that by eating better and exercising, we can lose unwanted pounds.  I’m talking about features that would have to be corrected by going under the knife.

So, I am going to take a brave step and come forward with mine, in hopes that you, Reader, will reconsider the next complaint.  Not only because it’s healthy for your self-esteem, but you might reconsider because mine can be very noticeable and yours isn’t so bad in comparison.

One of the trademarks of being a part of my family is the ears.  A few members have gotten away with normal ears, but there are a LOT of us, with not so much large ears, but ears that poke out from the head.  This is my father’s side.  Now, I’m an exception to my paternal family members because I also have large ears from my mother’s side.  I got a double dose.  So, my father blames my mother and my mother my father, until I reassure them that it is both their fault.  I used to be jealous of people with normal sized ears.  I never pierced my ears.  I really don’t need to bring attention to them.

As a child, I fell into the false belief that I would grow into my ears.  As you all know, our ears and noses don’t stop growing, and I feel my ears really took it as a race with my nose.   I wasn’t teased too much as a kid, mostly because I was such a tomboy that teasing me meant retaliation by violence.  I did get a few “Dumbo” comments, but they were dealt with swiftly, and the other kids knew to back off the ears.  Now, as a kid, I wasn’t really girly.  A lot of my peers worked on their hair and matched their outfits with plastic jewelry and friendship bracelets.  I just wanted to play.  While little girls were getting into their mom’s makeup, I was gifted toy makeup, and found it infinitely more fun to apply it to Dad’s face as he napped.  Poor Dad.  That toy makeup was waxy and very hard to remove.  Also, all my fashion energy went into dressing the dog for plays.  Needless to say, as a young child, I didn’t worry too much about covering my ears.   Mom tried to help by curling my hair for school pictures (that one time, before she learned), but by the time I sat down my hair was stringy and I was disheveled.

Growing up, middle school, high school, college, I became increasingly self-conscious about my ears.  Well, even today, If I make an effort to cover my ears under my hair with new people, and then pull my hair back, the look on people’s faces is one of shock.  I can see them looking left and right of my face!  I would do the same thing.  In fact, I have!  With myself.  Sometimes I take a double take at my shadow because my ears make me think the shadow is something else.   I had a thought, and somewhat still do, that putting my hair in a ponytail was the equivalent of slapping a “Don’t Date Me” sign across my forehead.  I’ve only been on one blind date my entire life, but I remember pulling at my hair incessantly.  He probably thought I had a nervous tic.

Because my job at times requires me to put my hair back because we are loading and unloading material (oh, and happen to live in 80F winters and 1115F summers), I can’t keep from pulling my  hair back because it gets stuck to my neck and gets in the way.  I think my colleagues and friends have figured out that taking a picture of me with my hair back can result in a broken camera and minor blood loss.

So instead of hiding behind my hair, I am taking this opportunity to think about my unique gift from my ancestors and the good stuff about it!

  1. When I put my hair behind my ears it’s going to stay there.
  2. Like the Fennec Fox, I feel I am better equipped to withstand heat, and am cooler in the summer as a result.
  3. The area behind my ears is exceptionally clean, because my ears poke out from my head.  No hard to reach places.
  4. I’m distinguishable among shadow crowds.

Now, all you normal-sized ear people might read this list and feel down about your normal ears.  That is understandable.  So, take this opportunity to think of a small list about not only the features that make you beautiful, but the ones that make you cool.  Both figuratively and literally in my case.

Ears were noticeable at the get go
Still thinking I would grow into them
Okay with posting a picture with my hair behind my ear.

The Mom Blog

Tonight marks the last night that my mother is 29 years old.  That is right, my mother turns the big 3-0 tomorrow.  No, no, no!  Stop doing the math!  Okay, Mom is not turning 30.  She is turning               .  Ha ha!  Thought I was going to post it.  No, mom raised me smart-like!  Let’s just say Mom was born somewhere after electricity being invented and before the new iPad came out. 

After the post for Father’s Day, Mom requested a post in her honor.  For all you bloggers out there, these things cannot be requested, they simply come, and Mother’s Day is a long way away (which would have given me reflection time).  But…since she is not getting a day at Sephora, I will publicly post some of her words of wisdom that              years of life have given her.   

There really is too much, and like with the Father’s Day post, I am more likely going to remember the things she tells me on a regular basis and the nuggets of wisdom that are more relevant to my life right now.  Mom gets a lot of frantic calls from me in need of advice.  She is Mom.  If you are a mother, reading this post with small children, keep in mind that the “Mom, Mom, Mom, Mom, Mom, Mom, Mom, Mom, Mom…MOM, MOOOOOMMMMMMM, Mah, Mah, Momma,” really never ends, it just turns into voicemails that sound something like, “Mom, where are you and why aren’t  you picking up the phone?  Gah, your cell phone is as useful as a baked potato on your person, I swear.  Well, if you ever do check your voicemail, I just wanted to tell you about my insane day.  Sigh….omigosh, I’m so tired.  You know what?  I’m just really tired right now.  I feel like I could fall asleep.  I need a vacation.  I really do.   Let’s go to Disneyland and Vegas.  Just go.  I’m going to pickup groceries before going home.  I want fruit.  Omigod!  I found the most delicious fruit!  I wish I could send it to you.  What was it called?  Dammit, of course, now I can’t remember.  It was like an apricot/plum hybrid, but not a pluot.  They were only $4.99/lb.  Geez, everything is so expensive.  Still want a vacation, though.  Well, call me! Luv ya, bye!” 

So the following are a few things Mom says that stick with me because she says them all the time.

“You have to understand.  Men are stupid.”

This is a true statement.  Thanks, Mom!  What Mom means (most of the time) is that men truly are wired differently, and they are “stupid” when it comes to the completely rational and understandable words and actions of women.  We can’t expect men to read our minds or understand our thought processes because theirs are different.  And this goes both ways.  Even though I am way more blunt and straightforward than a lot of women, I still don’t understand guys even though I refrain from games.  I thought communication was key in any relationship.  Just talk it out, and figure out what he is thinking, but that not always works.  Sometimes it makes it much, much worse, and then I remember.  Men are stupid. 

“Because I’m the Mom.”

Wow.  I’ll take years of poop, messes, screaming, stickiness, bills, homework, arguments, boos boos, sleepless nights and tantrums to be able to use that phrase with my adult children.  What Mom says goes.  The end.  Mom is all-powerful.  She is Queen.  As Bill Cosby said, “I’ve seen that job, and I don’t want it” now Mom experiences some of the pleasantries.  She really can say whatever she wants because I’m mature enough now to be respectful.  Mom dragged me everywhere as a kid.  She endured numerous birthdays of mud pies and crayon marks for birthday presents.   I was not respectful.  I made scenes, I cried for constant attention, I never brushed my hair, loved dirt and ate everything in sight.   When I got older, I would say I was a nerd, but I wasn’t really good at math, so more of a dork.  With Mom I was a total snot.  I even pleaded (successfully) for her to both finance and attend…uh….boy band concerts.  I know, I know, that was tough on Mom.  (Disclaimer:  That was a fetish of a 13-year-old me, and I have since killed her.)   So, I was sewn at her hip or locked in my room, but she was always there for me.  Through fights, through disease and growing up.  Because she is my mother.  And now Mom is always right.  Because she’s the Mom.

“You know what I found?”

Okay, usually this question is answered with a cookie cutter, but I still consider it words of wisdom, even though it interrupts me all the time.  Why?  Because it reminds me to take joy in discovery.  In everything.  In baking, in driving and seeing new things, in reading, in weird hybrid fruit.  Mom and I now commonly use this interjection, and when I see something new, I think of Mom.

“Get that fixed!  Right now!”

This pertains to everything really.  My car, my bills and my health.  She is Mom, so she worries about me.  Sometimes I wonder what scenarios go through her head when she lists all the things that need to be done immediately.  I think her fear, and something she really thinks is going to happen, is that my  tire will not only go flat but explode, I will over correct and drive 95 miles per hour into a ditch.  I get out of the car, but then I don’t have a seizure, I have some weird unnamed metabolic and neurological disease (that went undetected because I didn’t ask the right questions at my last doctors’ appointments) causing both my arms to spontaneously fall off, so I can’t dial the phone to call her and tell her that if only I had weekly doctors’ appointments and took my car in every month, I wouldn’t literally be stuck in a ditch, armless and without transportation.   Mom, no doubt, reading this blog, does not find this funny at all, because she believes,

“Hey, you never know.”

And Mom is right.  You never know what is going to happen which is both an argument for and against being prepared.  Being a responsible adult and thinking ahead is necessary.  I’ve been in freak accidents that could have been prevented with doing things on time or just thinking.  Now, this can also be a positive, and a reason to sometimes, just sometimes, throw caution to the wind and take a risk without much mental preparation.  “Hey, you never know” also made me think that maybe that guy isn’t that ridiculous, that I could enjoy a career and residential move,  and that I could get into that school.  Hey, you never know is getting me through my late 20s when everyone seems to be nesting, and I’m still on “What’s next?”

Whenever we are not talking about cheap and hollow accusations against by precious and innocent furdaughter Sydney, now in her care, we talk about work stress and my romantic life or lack thereof.  Usually, right in the middle of life revelations, she tells me the name of the new face wash she found, and all is right with the world.  Because life is not made up of daily life-altering revelations, but of little things like errands, weird fruit finds, conversations, dog hijinks and the quest for smooth skin and good recipes. 

Mom won’t tell me what to do, because she knows I have to figure it out.  This is my life, and she told me that life is full of mistakes so not to fret over every decision.  Through all of the examples Mom has given me of her life at my age, she made mistakes but she stayed true to herself.  She knew herself.  That is the goal for me.  No matter who enters my life or who exits it, I don’t lose myself in the journey.  Every year I learn something about my Mom’s journey, the life she has already led and the dreams she has for the years ahead.  The years that add up to her       st birthday, have made her the woman I have to call not only on her birthday but for everything.  I look forward to seeing and being a part of her year ahead.  Because you never know, and she’s the Mom.

On Father’s Day

On this Father’s Day, I will pay tribute to my dad my publishing some of his words of wisdom to all my readers.  So for you, and the other person who reads my blog.

Now, my father has lived an incredible life so far, full of trials, humor, grief, success, love, friendship, service, learning and transformation.  I am so proud to be my father’s child, that I talk about him quite frequently.  This post in no way can convey who my father is and how I revere him, so I will just post some little phrases that Dad has spoken, and hope they serve you as they continue to serve me.  Repitition is the God of wisdom, right? 

Life lesson:  Honor your parents.  Never forget where you came from and respect your upbringing.  The world is full of experiences and new responsibilties, from work to travel, to raising our own families.  We all are short on time and as we grow into adults, we become consumed with moving up in our careers and leading our own lives.  While this is expected, we cannot forget about our parents.  We must cherish who they are and what they do for us today, not just in the past.

“I didn’t raise you just so you could leave.”

Life lesson:  Although making lemonade out of lemons is a common way of looking on the bright side, we must develop and utilize our strengths, not complain about our weeknesses.  We all have talents, and using our talents and developing our skills will bring success.  The best ingredients make the best dishes, and the same goes with our accomplishments. 

“You can’t make chicken soup out of chicken shit.”

Life lesson:  Don’t be so negative.

“Don’t be so negative.”

Life lesson:  Appreciate what you have!  When thinking about material things we must always take stock of what really matters and really appreciate the gifts we are given.  Constant attainment of material goods will not bring us happiness.  True entertainment comes from creativity, imagination and making the best of what you have.

“You know what toys I had as a kid?  I had two, two by fours.  That’s what I played with.”

Life lesson:  Life is confusing for people.  It always will be.  Becoming upset with confusion is pointless.  We must have faith in God, as He knows our path, and we can find our true self only by serving  Him.  He knows what is best for us, and He is watching us always.  We are safe under His grace.  We must trust in God always.

“Drop kick me Jesus, through the goal posts of life.”

Life lesson:  Language ties us to our heritage.  It allows us to converse with people in speech and through culture.  This allows deeper levels of communication and not knowing the language of your family is allowing yourself to be left in the dark in conversation and not taking the gift given by our ancestors.  It can also lead to being lost in rural areas, not attaining the popular vote in any future political campaigns, and looking stupid period.  Learn Spanish. 

*Insert rant about needing to learn Spanish in Spanish with wild hand gestures here* 

Life lesson:  Everything takes a bit of strategy.  You can’t just hope for the best and go for it.  Think about it, visualize it, and execute the strategy.  Works in life, works in basketball.

“It’s all in the wrist.”

Life lesson:  There’s no place like home.

“But THIS is the Land of ENCHANTMENT.”

Life lesson:  Work hard with a kind heart and people will follow by example.  Yelling with a closed mind will get you absolutely nowhere.  People may fear you, people may do what you advise out of this sense of fear, but respect is not attained through this form of “leadership.”  A true leader is a servant of the people.  A good listener.  Someone generous and caring.  A strong sense of right and wrong coupled with a caring disposition.  Words mean nothing without action as evidence to support those words.  Lead by example.  Your example comes from being a follower of Christ.  People do not always understand by hearing, you must prove yourself.

“You don’t demand respect, you earn it.”

If I Was a Billionnaire

Days of grant research and writing grant proposals (with at least a month and a half of it ahead of me), makes me think about money.  What would I do with a million (heck, I’m dreaming, I’ll go bigger) a BILLION dollars?  Most of you might think, “Quit my job!”  I’d actually use it to enhance what I can do at JDRF, because first, I’d buy myself out writing grants.  Don’t take it the wrong way, I love writing up projects and why they are imporant and crafting budgets and strategy, but, uh, if I had money to give, I wouldn’t have do it.  So, yay! 

I would TRAVEL, oh my yes!  I would visit my friends all over the world and really immerse myself in different cultures.  Then I’d blog about it, so you, my reader, wouldn’t have to read blogs about my dreaming and thought processes.  Nice change, right?

I want to go back to school.  I want my MBA, and I want to enroll in an intensive one year program.  I know a lot of people go back to school to get the bigger bucks, and I’ll already  have big bucks, but I am an academic at heart.  Books + sense of accomplishment = me happy.  I would leave my staff position for education, then come back and try to find a job again.  I would have the luxury of not working while I wait for a position to open up.  I would volunteer of course.  No seriously, I would. 

I’d have to work, because helping people helps a person feel good about themselves!  So along with being able to keep regular hair appointments, I’d be feeling good about myself inside and out! 

I could attend a gala instead of working one.  This would be a moment for me.  I would give a giant Fund A Cure gift,  which goes directly to research.  I would also get to….wait for it…sit down.     Actually being seated for the program would be a fantasy within a fantasy.  I can just see me walking in and hearing, “Oh good you’re here, can you…”  Volunteers and staff, you  know what I mean. 

I’d buy a house with a yard so I could have a puppy.  I’d then train the puppy to attack on command.  Did I just lose the cute vote with that last sentence?

Omigosh!  I would be able to do a lot!  I would give to missions!  I would send kids to camp, help people meet their fundraising expectations by donating towards individual fundraising goals, I could pay for events and resources, I could further medical research, and the list goes on!  It would be awesome, and I would have nice hair and a puppy. 

Now, money DOES NOT buy happiness.  No, not at all.  So, I write my grant proposals to those who are able to do these incredible things and let them know about wonderful ways to give back.  Even though it can be draining, this makes me feel good.  Makes me feel good even though my roots are showing and the cat hates me. 

 

A Path of Blessings

As my last post indicates, I had a really hard, really weird couple of weeks.  So many things came at me at once.  So many answers were demanded of me, and I had so many questions.  It was at home and at work, and those two weeks left me stupefied, and a little crazy and numb.  I don’t really remember all the things I did at my level of stupefaction.  Probably said something stupid. 

If you can’t imagine my frame of mind, scribble on a piece of paper.  Yeah, that was pretty much it.  Maybe, Dublin captured it best in this photo.  This is kinda what I looked like for the last two weeks.

Now I’m still young, when the pressure to figure things out is at an all time high, or at least I perceive it to be, so I’m owed a little crazy.  I’m also old enough to learn something from these periods, of ” WTH?!?”

I’m not much of a drama queen.  I don’t like drama, I like excitement.  Please don’t confuse the two.  I’m an excitement queen.  I run on possibilities and caffeine.  If I’m bored, I’m miserable.  (And more likely to text you.)  So, when pressure and bad news are at all time high, and possibilities of excitement, adventure and happiness are low…and all this news comes at once, culminating in one weekend… I moan and I run in circles.  Phew, so tired.  You know, from the running…

So what did I learn from the running and the crazy?  A sparrow in the airport that landed at my feet was the first reminder.  Things might be falling around me, and the path ahead completely unclear, but there is a path, and there is a Guide. 

Another reminder.  This morning, I met a man whose young daughter was diagnosed with type 1 diabetes just days ago.  She is still in the hospital.  His world turned upside down and a flood of new information and new emotions hit him.  He looked shocked, he looked confused, and in his eyes I saw grief and resolve.  In a day, just like any other, his world and that of his family’s forever changed.  His world was confusing, but I had knowledge.  I had knowledge of an incredible life his family had waiting for him and friends waiting to meet him.  I hope he uses me, and our resources in the time that he is shocked, confused and heartbroken.  Because where he cannot see past her getting out of the hospital, we can see her playing and laughing with friends.  This meeting gave me perspective. 

Reminder three.  My appointment with my new epileptologist.  I had never been given a real diagnosis.  I was told I had epilepsy and ever since then, it was figuring out how to control it, the end.  I knew of people who had grown out of their epilepsy, and thought, in the back of my mind, that my condition could be temporary.  I have a type of epilepsy that does not go away, and was told that I would be dependent on medication for the rest of my life, with the threat of seizures.  It could happen, but statistically, I should not even consider it.  I could try tapering off my meds if going seizure free for two to five years (I’m in year three), but seizures are so terrifying to me that the thought of turning myself into an experiment that can’t drive, work or be left alone is not really an option for me.  This news was not disheartening for me, but I knew it would be somewhat of a let down for those who had been through this with me.  Looking at me, you can’t tell I have epilepsy.  I  haven’t had a seizure in three years, and you know what?   I might not have another one.  That’s an amazing blessing, and I cannot take it for granted.  Last weekend, I saw a young woman walking around with a helmet.  At this appointment, I saw patients with noticeable neurological disabilities – they could not walk, they could not speak.  I went to my appointment with my best friend, my rock.   He cares so deeply for me, and although the path ahead will not be free of epilepsy, I have so many blessings now.  In the midst of the crazy and heartbreak, I even have the blessing to see past it, to see the reminders.  The couple with serious health issues had each other, and in the gentle care they gave to each other, I could see that they could tell what a blessing they were given in each other.

I can get some really awful news tomorrow.  My dreams could become dust.  But in that dust come new dreams and new opportunities.  Taking hold of today, and finding the great in tomorrow.

Here and Now

Sometimes life brings you to your knees.  Then it stabs you through the heart, kicks you in the stomach and then, as you fall in agony, life hits you over the head with a bat.   At least this is what it feels like physically afterward.  

Letting go is difficult.  Of  a person, a thought, a dream.  An idea of happiness.  The absence of that idea can be quite crushing, and letting it go can be heartbreak, pure and simple.  There is more to life than what is not in it.  That realization is key.

After my beating (they happen to everyone), I knew immediately that I must take stock of what is here, in my grasp.  I have a man who loves me deeply, a family that has invested so much in me, and friends who care whether or not
I get beaten or not. 

I can’t have the life as I dream it, at least not in all aspects.  I am only human, and don’t know what’s best for me.  Actually putting this realization into action is very difficult (see multiple posts on the subject).  My friends are wonderful, but can’t give me the right answer.  Only by letting go, and giving myself to God’s will, will I find what is best for me.  Today I prayed fervently for guidance.  Moments later, a small bird landed at my feet as I sat at my gate in the airport.  Always comparing myself to a sparrow, this was a gentle reminder that I am being looked out for.  I’m sore now, but I am going to be fine.

I have been scared before, burnt before, and I have scars to prove it.  But one thing I forget when the stab hits the first time, is that I am tough.  I come from a family of tough women who gave me life examples, and just when I thought I couldn’t hold in the tears of fear, anxiety and loss, I smiled.  And I laughed.  I was aided by what is here and now – Mom, Friends, Boyfriend, a dog and a little bird.

Five Years

Today I mark five years as a diabetes fighter.  Five years ago I got involved with the Juvenile Diabetes Research Foundation.

I was just about to graduate from college with  my BBA in marketing.  This is the time when young 20 somethings go crazy thinking about getting a job.  I knew that as a college graduate, I had a better chance of scoring not just a job, but a career.  One that offered me a position to be creative.  I just didn’t know the first step. 

Professor Funnierthanmost distributed a lot of job and internship opportunities to business students.  I had sat through multiple career days and presentations from companies wanting fresh talent in entry level positions.  Nothing panned out for me, or even peaked my interest.  Then I came across one for a Marketing Intern for the Juvenile Diabetes Research Foundation.  Right up my alley, I thought!  Marketing!  Plus, Dad had diabetes (didn’t remember which type) but it was not fun and he suffered with it.  It was unpaid, but I had gotten an internship with the Office of the Governor (also unpaid), so I thought more experience to go get a paid position with!  So, after an email thread, I went to meet my new “boss.”

Picture your pantry.  Then multiply by two and a half.  That was the size of the old office.  One narrow teeny space, starting with the door ending with the manager’s office separated by a wall with a window in it.  Other than her desk, there was a small desk facing a wall.  I feared that would be mine, if selected. 

I very quickly realized this was a disease I was completely unfamiliar with.  There were pictures of kids all over the walls.  What?  Dad took shots, but it was so long ago, that I didn’t remember.  Dad was only on oral medication at that time, so I knew diabetes as a disease that required pills, watching what you eat, pricking your finger, getting blood, and yelling.  “What the…?”  “Are you kidding me?!?”  “I took my pills!”  “I barely ate anything!”  “I’ve been outside working for two hours!”  Well, you get the idea.

The first person I met with type 1 diabetes in that little office was hooked up to a pager-like device.  She tried telling me about it, but I think I was so focused on how to respond, that everything flew over my head.  What I learned from that interview was that a healthy young woman my age could have diabetes, children could get diabetes, it’s a sophisticated disease and it needs nothing less than a cure.  My Dad was in visible pain from having type 2 for so long, and I knew that JDRF would help him, too.  My new boss offered me a summer internship.  I would come in half days three times a week.  Thinking back, I now know how respectful if was of her to interview me.  I was interviewing to volunteer, but she really made me feel as if I was entering an organization that took a formalized process.  It made me feel special.  I called Dad two steps out from the office, and told him I was going to cure diabetes.

Before even starting, my new boss invited me to see JDRF in action, at an event.  It was the Corporate Engagement Breakfast for the Walk to Cure Diabetes.  I suited up.  My gray suit was way too big for me, so I was pulling on it constantly.  It was all I could think about.  The talk was about what diabetes is, and how JDRF is out to eradicate type 1 diabetes.  Then Jennie (names have been changed in this blog as a courtesy) and her family came up to speak.  Jennie was very, very ill when she was diagnosed.  Her parents talked about their fears for Jennie and her daily life with diabetes.  Jennie was fidgety.  She was up on a chair, then down on the floor, then sitting on the chair, then on the floor.  Jennie had eaten breakfast, and she needed a shot.  I watched her mother give her a shot, and this was the first time I had seen it.  It surprised me.  Jennie wiggled, but her mom held her and gave her a shot in her arm.  Her little arms had bulges right below the shoulders.  I realized later that it was lipodystrophy.  She hated to feel her shots, and fought new sites.  What floored me is that this scene had to repeat itself several times a day.  I don’t know what the look was on my face, but I’m pretty sure it looked like the expressions I have witnessed over the years at these events from those that don’t know type 1.  I became really close to Jennie and her family.   I saw them in our teeny office so many times during that summer.  I spent more time on the floor than at my desk, and Jennie drew pictures while her mom volunteered.  She drew one of me.  I was helping her cross the street.  I still have it framed in my office.  It reminds me that I started with JDRF to help Jennie, and I remain with JDRF until she’s safe. 

At the end of the summer, my boss was given the go-ahead to hire a temp.  Part-time.  I took it.  So now the office had two paid employees!  I worked as a temp for eight months.  Then I was hired on as a full-time employee. 

You take this job, one day at a time, one season at a time, one task at a time, but always looking towards the goal – a world without diabetes.  My old boss is now my colleague and I recently asked her how many Walks she had done.  It was hard to count.  I have worked 10 Walks, 5 golf tournaments, 4 galas and countless events that fall within those realms.  Every 5am start, every 9 hour time frame in heels, every U-Haul loaded and unloaded, every mailing, every phone call, every email – means something.  It means a step closer.  It all is part of a bigger picture, a bigger event, a bigger amount raised, a bigger breakthrough funded. 

Before I moved to our Chapter for a manager position with JDRF, I spent three and half years with fiscal year objectives and reviews that started with my boss saying, “I know JDRF might not be the end all for your career as it is for me…”  But it became that somehow.  On that five year road I am staying on, it has become that for me.  I have a family here.  For those you living each day with diabetes, you might only know my name, you might have seen me once and I talked to you and then  you see me every once in a while when you need some advice or a resource or just a voice on the phone.  I might have been one of the first voices you heard when your child was diagnosed or that weird girl that told you about all the cool events for adults with type 1.  I could be the person asking you for time, for advice, for your story.  In any capacity I am needed, I can fit that role.  I can be at your doorstep with Rufus, or at the hospital with magazines or on Facebook forwarding your blog.  I get to be a friend for a living.  How much better can it be?

I do get thank yous for serving families and adults with type 1 diabetes.  It goes both ways.  What a coincidence that to mark my five year anniversary, I have taken on an unpaid intern to work with me this summer.  My hope is that this organization serves her as it has served me.

BORED

I grew up to fear admitting boredom.   Boredom was treated like an addiction.  Admitting it would mean work and a long list of tasks to eradicate the problem.

Even typing it, I still feel the fear and anxiety of announcing boredom.  You see, at a very, very young age, I learned to never say, “I’m bored.”  And to never, ever, EVER precede it with, “Dad.”

I must have been just old enough to put together sentences to express myself when it dawned on me the sixth or seventh time a conversation like this took place that I needed to keep my mouth shut on the subject.

“Dad.  Dad!!  Dad…I’m Boooooreeeeeddddd.”

“Bored, eh?  Well, we can fix that problem!  Grab a hoe and chop all those weeds.  I want to see you reach the end of that fence before it gets dark.”

Now, weeds at a racehorse training facility that bordered a river didn’t mean your average dandelion.  It meant beanstalks.  I would never finish weeds.  There was never opportunity to not have something to work on.  A task for Dad to give.  Almost always weed-related. 

I remember foolishly thinking that if I had a younger friend, someone Dad would not want to see pulling weeds, that I could safely admit boredom without consequence.  I thought of my cute little niece, my dad’s own granddaughter.

“Daaaaad…there’s nothing to do!  What can we play with?

Cut to scene of me and Sweet Baby Niece yanking on weeds sometimes three times our height.  We would come back with green lines across the insides of our palms.

Don’t get me wrong, I was and am a spoiled kid.  I contend I am not spoiled rotten, but spoiled.  I grew up on a ranch full of animals and places to ride my bike and run and I had quite an imagination with all the atmosphere to indulge it.  I just could not admit being bored.  I thought I could whisper it to Mom in the kitchen so she would play with me, but Dad was standing behind me. 

“No, no, no I’m not bored, Dad!  I was just kidding!  I have lots to do.  I’m going to go do it now!  All the lots of things I have to do.  So many.  None of them boring.  All exciting.  So excited.” 

Still, as an adult, I have a serious problem admitting boredom.  I did let one slip while on the phone with Dad.  I didn’t say “bored.”  I said “boring” but immediately realized my mistake.

“Bored, eh?  Well, I’ll get you a plane ticket back to the Land of Enchantment, because I have weeds here that you can start chopping.” 

I don’t believe boredom comes from a lack of things to do to keep busy, but a lack of excitement in the things we do.  Everyone has boring aspects of their jobs, and I have them to, but I do them, and overall my career is very exciting and fulfilling.  I get lots of perks.  Outside of work, there are so many things I need to do, like clean and pay bills, work out and organize my things.  Also, outside of tasks, there (I’m sure) are lots of fun new things to see! 

But I still get anxious.  It’s a wanderlust thing I have, and I think it’s in the genes.  Sometimes it takes three years, sometimes it takes one, and sometimes just a matter of months, but I get itchy to get out.  Jump on a plane on a whim to somewhere fun or make life altering decisions that may result in the former.  Every day I become stiffer, my pupils wider, and my right eye starts to twitch in the corner.  I’m….give me a minute…bor…phew…I’m….boorredd.  That was difficult. 

I need a vacation.  It’s been four years since I took a vacation.  Four years since I got on a flight that lasted longer than an hour!  I don’t have idle hands, I have wanderlust.  And not quenching it makes me feel bored. 

Don’t tell Dad.

Happy as a PJ

When I think of a role model for good moods and happiness, I don’t think of any particular positive person who leaves an example to follow.  Don’t get me wrong, I know many a bright eyed and busy tailed person, but someone who is incredibly happy every waking moment?  That gets joy out of all the small wonders and surprises each day brings?   There is one that comes to mind when I am low and need to cheer up.

It’s so easy to let the little things get to us and pile up and weigh us down.   Not to mention the big things.  From giant work projects to a nail in the front right passenger tire (I swear the inside of my tires are covered in magnets) and from the little disagreements to the bigger problems underneath.  All of this easily deters us from enjoying the sound of laughter, the sunrise, the chance at something great that every single day brings.  When I am festering on the little annoyances and the bigger ones, I think of a face that I need to emulate.  And even the thought makes me smile.

Plain Jane (PJ) was left without a home and she had just lost her whole family, all of her children and all she had was a chance.  One morning, she could be chosen for the life that would make her happy.  It would be her turn.  I met her, and she had very sad eyes, and she rested her head on my knee, as if the weight of the world was on her shoulders and she needed respite.  I knew she would be the present from my mother to my dad for Valentine’s Day.

Just a few years later, Peej is the happiest creature on the planet.  She cannot stop jumping from the excitement of every new encounter and familiar acquaintance that comes her way.  She walks on the tops of picket fences and jumps over 10 feet in the air.  She craves adventure, calms fights, and loves deeply.  Her whole world is in each moment she has.  And she has the world.

On the Edge of a Coin

Every day I feel like I am sitting right on the ridge of a coin.  It moves back and forth a bit, but I do my best to stay right there on top, so it doesn’t fall one way or the other, and oh, it does.

My position with JDRF is on top of that coin along with my personal connections to type 1 diabetes, and my personal experiences with epilepsy.  I am sure my analogy makes sense to those associated with illness in one way or another. 

Thinking of type 1, one side of the coin is positive.  There are incredibly successful people living each day with type 1 diabetes, and they are successful in many different arenas.  In work and at home, these people are successful and live healthy, active lives.  In fact, I know many who put me to shame all the time, because I don’t work out as much or travel as much, etc.  Someone diagnosed today can do anything they dream of.  They can raise families, they can excel at school and in sports, they can travel internationally, they can become a justice of the Supreme Court, or hey even president!  There are some with type 1 who have worked hard to find every avenue they can to become pilots and race car driver!  Outside of joining the military there is nothing you can’t do!  The simplest and most powerful thing someone with type 1 can do is reach out to someone else who is having a hard time with the disease and work to lift them up.  The message on this side of this side of the coin is the positive one, the message that even with type 1, there is nothing you cannot do given the tools and the motivation to use them. 

The other side is a harder side to deal with, although it is just as real as the positive side.  Diabetes is a dangerous disease.  It can take a life in a moment, the management of it is a rigorous game that changes but never stops, and complications are devastating and sometimes debilitating.  While news breaks of those defying the odds and living beyond incredible lives with type 1, there also comes news of young children losing their lives and adults dealing with complications that impact their very quality of life.  Type 1 is a disease that doesn’t always come al a carte, either.  Other autoimmune diseases can add more strain to management.  It’s confusing and frustrating, causes depression and anxiety, and needs a cure.  Before another life is lost, before even another day is lost to diabetes, we need a cure.  We needed one yesterday.  This isn’t a disease that is easily managed, it’s a real life enemy, that strikes all ages and every one in a very specific way.  I have met so many people who work hard to manage their diabetes and are the pinnacle of health.  I also know many people who work hard to manage it, and struggle immensely from high blood glucose levels and scary low ones.  Even though long-term complications sometimes make you think that they come slowly, some can come so quickly that it takes your breath away. 

Professionally, I have used both messages.  In outreach, I am all about the positive side.  Children, parents, families and adults need to know that the choices they make today impact their tomorrow.  They also need to know they are not alone.  It is a constant battle, but because of advances in technology and treatments, and the support of millions, you really can do anything!  Just like anything else, it takes drive and work.  It also takes the ability to dust yourself off and try again.  I like outreach.  To bring people together in the spirit of family with the feeling that life is amazing, so fight for the one you want!  Incredible job.  I also worked on the other side of the coin as a fundraiser.  If someone doesn’t live with type 1 or they don’t know about the disease, it’s hard to say donate to JDRF.  There are so many places to donate money and to volunteer!  Other disease organizations all have the message that we need to get rid of the disease, or educate the public, or provide programs for those living with it, and so on.  So, knowing that this disease is dangerous and can strike at any moment, we need to convey that a cure is absolutely necessary.  You don’t just stop eating sugar, start taking insulin and that be it.  So, if we are asking to fund research into cure and treatment therapies, we need to say that we are saving lives.  And its true.  A cure will save thousands of lives a year.  Plus, it would have huge implications for other autoimmune disease cure therapies.  So, here I sit, on the edge of the coin.  Having to balance the messages.  I take my job personally, probably too personally for my mental health, but the Diabetes Online Community knows what it feels like when the coin falls on its end.  Blue candle.  The coin falls to the reality that this enemy took another, and I feel it physically when the coin tips that way.  Like a punch in the stomach.  And then, as Facebook profile pictures start to resume to faces of happy kids, family pets and vacations, the coin goes in the other direction.  Life must be lived to its fullest.  Between these two sides to the same coin we have to balance.

I always put a disclaimer that not having diabetes or a child with diabetes, makes my input a different one.  I honestly cannot know the experience of living every day with type 1 diabetes.  Mine was something different:  epilepsy.  I was a lucky kid, and am a lucky adult.  Yes, epilepsy almost took my life on numerous occasions and has had other effects on my health.  But because my management of it now consists of taking two oral medications a day and watching my routines, I feel incredibly blessed.  It’s there, but it isn’t a weight on me.  The other side to this coin is seen when I am faced with what epilepsy can do.  I don’t think too much about a cure for epilepsy, because right now I feel that my treatments are controlling my seizures, and I have a kind of cure.  When I was having dangerous seizures all the time, I wanted this disease gone and now, and was so frustrated by how confusing it was, not only to me personally, but to researchers and doctors!  Epilepsy almost took me, yes, but it takes many lives annually.  Also, some people try everything in the book, and they cannot control their seizures completely.  I can’t imagine this.  Thinking about it makes me cry.  Not having freedom?  Complications can even include loss of mental capacity.  What if I couldn’t do anything without a care taker?  What if I couldn’t read and understand or write?  But, I get to take my cure twice a day, and live my life.  I fear having seizures, and I fear that another unknown factor will come into play and my cure won’t work again.  But life is short and beautiful and I balance my own coin, knowing how lucky I am, and reminding myself of those not as genetically fortunate, who need a cure. 

I suppose I am writing because every conversation I have includes the coin.  I’m from the school of thought that people are not diseases, and there are no diabetics.  There are people living with diseases.  But we shouldn’t have to live with them either. 

Even after coming into consciousness right after having a seizure in a public place, I have never been an epileptic.  I’m Lawren.