Living Life to Its Fullest

Before you read this post, I need to give you a context so you aren’t distracted from the real message. My husband and daughters all have a bleeding disorder called Von Willebrand Disease and I have described what it is here so if you, or someone you know hasn’t heard of it, or maybe even has it, you can get information about it.

But what I most want you to focus on has to do with my issues of dealing with fear (especially my fears as a parent). And whether I have fear about the ramifications of living with this disease or general fear from the scary world around me, the issue is the same. I can’t live in fear but have to trust that God is in control of all things.

So with that in mind, I’d like to share with you an excerpt (I happened to write) from a new book called, “100 Questions and Answers about Von Willebrand Disease” by Dr. Andra James. Von Willebrand Disease (VWD) is the most common bleeding disorder found in females, although unlike hemophilia, which is only in males, VWD can be found in males, too.

Quite simply, the Von Willebrand factor is a protein that is essential for normal blood clotting. It acts like a glue to adhere platelets to the site of an injury. If you don’t have enough of this protein, or the protein is defective, you have VWD.

If you have a daughter, girlfriend, or you have bleeding issues (symptoms include easy bruising, frequent or hard to stop nosebleeds, gum bleeds after dental procedures, bleeding after surgery, and heavy periods) getting checked for VWD is a good thing to do. Most of the time, VWD is just a nuisance but on occasion it can have serious health implications.

If you are interested in learning more about VWD I would highly recommend Dr. James’ book. She, herself, has mild VWD and is an OBGYN who specializes in bleeding disorders in women. She’s written a simple to understand book and anyone with these types of symptoms should read it. I am honored she has included an article I wrote as answer to question #99. Is a medical identification bracelet necessary?

Excerpt:
My husband, Steve, who had Type 2B VWD, has always worn a medic alert necklace, as did his dad, since their diagnoses. So when the girls got diagnosed [as children], I ordered medic alert bracelets and put them on their little ankles.

Of course the primary reason for their medic alerts was so their information would be on file in case of an emergency. However, the secondary reason was so I didn’t get turned in for child abuse! They always were bruised and I had more than one occasion where I was questioned because of their bruising. I do have to say, I never took offense at that – I appreciated that people, even strangers, were watching out for children’s welfare and safety.

Now fast forward. (I have permission to share this.) Steph got to be a teenager and she decided she didn’t want to wear her medic alert anymore. She hated people asking her what it was for. She didn’t like being different.

We are very close and one rainy afternoon when she was a freshman in high school we had one of the biggest disagreements we ever had. We were in the car driving during a miserable (and potentially dangerous) thunderstorm when I found out she didn’t have her medic alert on. It scared the daylights out of me. I punished her for not wearing it (she didn’t get to go to a movie with friends she had been looking forward to). And since she was a good kid, I thought that was the end of it.

But she continued not to wear her medic alert. I tried everything. I got custom-made jewelry with her info on it (they didn’t have any attractive medic alerts like they do now). I begged. I pleaded. I knew she had her medic alert card in her wallet but in an accident, she might get separated from her purse. Every time we talked about it, we got into a huge fight. It is the ONLY thing we have ever really fought about.

She is now 23, out of college, and she doesn’t live at home anymore. She still will not wear a medic alert.

Now I’m baring my soul here but I confess that I always have this deep, nagging (not really on the surface) fear that she will be in an accident and she will bleed out. I know wearing a medic alert isn’t a guarantee that she would be fine, but at least medical personnel would be aware that she has a bleeding disorder.

As a mom, a car accident is my greatest fear. That said, my faith is strong and I know worrying doesn’t help. But if I’m honest, the worry is there, particularly when she is driving. I am resigned to the fact that she is an adult and she has to make her own decisions and choices. I also know it is the only subject that is such a “hot potato” that we can’t even begin to discuss it. But I will always be her mother.

I know that she doesn’t remember those nights when she was little and I held her while she bled all night long. She doesn’t know how hard it is to watch your screaming child get medical procedures that are painful but necessary. She doesn’t know what it is like to lay in bed at night waiting for her to call and check in and let me know she is okay.

But I don’t know what it is like to be in her shoes.

Maybe when she has her own children, she’ll understand. But until that time, I try to respect her and be there for when she needs me. I pray every night that God will protect and watch over her. And that is all I know how to do.

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My friend Megan Hyatt just blogged about some of the lessons she is learning in her life while on her quest to run in a Half Marathon.  I was struck by her comment about learning to be more gentle with herself — something I am not known for!  I sent a comment back to her where I said how I wished I had learned that lesson earlier in life. It’s so true. I am increasingly aware that one of my biggest challenges is learning how to subdue my "inner critic"; that voice in my head that tells me how fat I am, or weak-willed, or undisciplined, or not worthy (obviously, the list can go on and on).

I think my "inner critic"voice has been active for so long (and the voice I hear is so familiar) that the idea of quieting it is quite a challenge.  It means I have to have a focused awareness of that critical voice and make a concerted effort to answer it in a way that speaks truth — real truth that I know in my heart is right.  (I think I’m sounding convoluted here… let me explain.)

I have yo-yo dieted my whole life. You could call me "Duncan" I’ve dieted so much (remember, those cool Duncan Yo-Yo’s we had as kids? They did neat tricks and sparkled but you could always count on them to consistently go up and down.) Well, my weight is back up and I have no clothes that fit. I had lost 50 lbs. two years ago and kept if off for about a year and a half.  I felt great.  I was actually convinced I had my weight issues licked (no pun intended) and that I could maintain that weight for the rest of my life. I actually got rid of my "fat" clothes — a huge leap for me! Then, as they said in My Big Fat Greek Wedding, the "Hormonies" hit. I started HRT and my weight slowly crept back on. Now I’m up 30 lbs…. again.  Sigh.  It is just so frustrating.  I have done this my WHOLE life.

I remember starting my diet journey by going to Diet Workshop with my best friend, Ellen, when we were 14 years old.  It was there I learned good eating habits (except for maybe the one where we went to MacDonald’s for ice cream cones after we weighed in as a treat.) Since then, I’ve done just about every diet — Weigh Watchers, Fen-Phen, Grapefruit, O.A., Zone, Liquid Diet, Cabbage Soup, etc, the typical, exhaustive list. And every time my weight came back my "inner critic" said, "Karen, you are such a failure. Why can’t you say no? Why do you always cave? Why can’t you be strong and not give in?  You have a closet full of clothes that don’t fit — evidence that you are once again a failure." 

Now, I have to tell you, at times that voice is loud but other times that voice is just quiet and persistent but effective none-the-less.

But quieting that voice is not always easy. One of the things I have recently changed–I’m interjecting something positive here–is that to begin to quiet that critical voice, I work really hard to not say self-deprecating things about myself.  Like if someone I hadn’t seen in a while asked me how I was, I’d say, "I’m great, thanks, even though my rear is looking like the state of Texas! (ha-ha)".

I always figured people were thinking it (because I was thinking it) so if I said it first, I would would actually be in control of what was going on (a bit of an illusion, to say the least). It was my way of covering my embarrassment and shame. Now, when I catch myself starting to say those things, I do the thing that is THE hardest thing for me to do… I say nothing.  I keep myself quiet and don’t say what I am thinking.  It is definitely retraining my mind to respond differently.  And it’s really hard to do! Retraining myself is takes focused discipline and diligence — that’s why I wish I could have learned it a bit earlier in my life!

Not giving voice to my inner critic is a step in the right direction.  This weekend, though, I felt was two steps forward and one step back.  I went to a wedding and saw old friends I hadn’t seen in years. I felt so awful about how I looked (and yes, I know that people are more focused on themselves and not on me but still, I doesn’t make it feel any better).  I wore all black (stretchy travelers, thank you Chico’s) and went with a smile on my face (and yes, with a bit of dread). It turned out fine and I was glad to see my old friends, yet it was still difficult.

But here’s the truth.  I know my friends love me for me — and that they truly don’t care about my weight.  I know the lie that my inner critic tells me is just that, a lie.  I know my value is in who I am not what I look like.  But, for me at least, choosing to believe the truth is a lot harder than believing the lie, particularly when the lie is so familiar.

So, today, at this moment, I am on my way to visit other old friends I haven’t seen in awhile. I am going to chose to cut myself a little slack, to be gentle with myself, and to rest in the assurance that I am loved, truly, for who I am and not what size clothes I wear.

Today, my inner critic can just learn to be quiet for a change.   

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It was 39 years ago today (Memorial Day) that my brother-in-law, Peter Borsay, was killed in Vietnam. Peter was married to my husband’s older sister, Peggy.   Unfortunately, I never met Peter.  Steve and I met three years after Peter died so it’s a bit strange for me to "remember" Peter since I never knew him.  But I wish I had known him.  I have always had a feeling that there was something incomplete in my history with Steve’s family since I never knew Peter.

Peter’s death was even more tragic (if there is such a thing) because he was killed by "friendly fire" during a cease fire: military speak for "our side" killed him by accident.  A helicopter still had it’s load of weapons and was told to discharge the load before returning to base by dumping it in an empty field. However, the field wasn’t empty. Five men were injured and Peter was killed — instantly, from what we were told. It was a tragic communications glitch. 

Peter and Peggy had only been married 17 months when Peter was killed. She was 23 years old.  Peg went on to get her doctorate and worked in the corporate world until she died two years ago from breast cancer.  She never remarried or had children.  I think a part of her heart died that Memorial Day with Peter and there was always a sense that she never recovered from her broken heart.   On a cold December day, we buried Peg’s remains next to Peter’s in a family cemetery in West Virginia.

I remember the first time I went to the Vietnam memorial in
Washington and looked up Peter.  There is a large book with all the
soldier’s names and I
looked up Peter Borsay.  He is on Panel 23W - Line 25, pretty much
smack in the middle of the memorial.  The names are
engraved in the granite and I remember touching the stone and running
my hand over the indentation.  There was something almost comforting, if that makes sense,
about touching the name of this man who loved my sister-in-law, a woman
I loved like a sister.

Peter and Peg are both gone now.  We don’t always understand or agree with "policy" but what I do know is this: Real people give real lives for our freedom. My life has been touched by a soldier I never knew and the world is different place because of his sacrifice.   

I guess that’s the essence of Memorial Day: to remember those we
knew, and those we never had the chance to know, who have served our
country by giving their very lives — and also to remember those that loved them. For that, this Memorial Day, I am grateful. 

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The nice thing about jumping into anything with both feet is that if you don’t know any better, you can just go for it and move forward. But jumping in can be scary. The only thing harder than writing blog #1 is writing blog #2!

My hesitancy comes from being a bit of a  perfectionist (though you’d never know it from looking at my home or my office!).  Sometimes, if I know too much, I hesitate to get going because I fear I won’t do it "right".  But in many cases, doing things "right" can distract me from doing anything at all. Then, once I jump in, I get overwhelmed with all the things that will make whatever I am doing "better".

In this case, I want my blog to immediately be helpful, meaningful, full of insight, pretty, as good as as everyone else’s blog, have all the whistles and pops that make it most effective,  etc.  And although those things are important, they aren’t as important as just writing from my heart. The distractions are a great way of protecting myself from being too transparent and therefore, vulnerable. (Sometimes, I just take myself waaaay too seriously!)

In the meantime, the upside is that the simple act of trying something new and learning new things just makes me feel alive.  At my daughter’s graduation last week from Belmont University, President Bob Fisher, in his commencement address, admonished the student’s to never stop learning and told the story of a man who was 83 and had a terminal illness and had only months to live.  The man decided to take Hungarian lessons because he had always wanted to learn to speak Hungarian. How remarkable (and remarkable that I actually remembered something from a commencement address!). The man was all about living and not all about dying.  (The president also did a shameless self promotion for his new book "Life is a Gift: Inspiration from the Soon Departed" which as a seasoned marketer I could only respect!)

(OK, this is a great example: I want to put a link for this book to Amazon and I don’t have a clue how to do it. Sigh. But I can either post this blog now or wait to post it until I figure out how to get the hotlink.  In this case, I am choosing to move forward and figure the rest out later!)

So for now, I am going to set aside my self protecting perfectionism and choose to just jump in.  And you know, sometimes the splash of cold water is incredibly invigorating. 

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I did two new things today… I started blogging and twittering (if you don’t know what twitter is go to twitter.com but basically it’s real time updating your life).  I have been agonizing for weeks over what to blog about looking for a major theme, message, etc.  I realized tonight I have been way over thinking it.  Finally, my friend, Gail Hyatt, said, "Just write from your heart, write for you, and the rest will follow". Hmmm.  That made sense. So I started tonight.

Recently, some friends and I walked in the Music City Half Marathon.  Because my knee had been hurting I decided to not push myself to finish the race.  My friends finished but I didn’t. That was really hard for me because I have always been about "finishing what I started".  (You know, when your mother’’s voice is in your head!) But I realized that sometimes starting is as important as finishing. Sometimes, the harder thing to do is to focus on the now and not the destination.  And sometimes, doing the the hard thing turns out to be the best thing. 

So tonight I took my first baby steps in to the world of blogging. My blog may not be pretty and perfect but at least it’s a start.

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