A new way to measure time

When I was in school, before the days of political correctness, we learned about B.C. and A.D.  These are measurements used to label time.  The correct meanings of these abbreviations are Before Christ and Anno Domini.  The more appropriate used labels nowadays are actually B.C.E and C.E. which stand for Before the Common Era and Common Era.  Back to my point, before learning the real labels, I had somewhere along the line been informed that B.C. was Before Christ and A.D. was After Death and both referred to Christ's life.  Of course, this is wrong and ridiculous.  If that were the case, Christ wouldn't have lived...which he did.  It is still worth mentioning because of its importance to grieving.  The term "after death" is something that I have become familiar with and realize will be a common theme in my life before now.  My life from this point forward will forever be divided into two stages...before death and after death.  Everything will be defined by whether she was with us, or not with us.  Even just two short months later, I've realized that this is the case.  I can't get it out of my head that this is a line in the sand.  Everything is either from before or after that time.

5 more things about Grief that no one else talks about:

Apparently, I feel a lot.  And five wasn't enough.  This blog could end up with three of four parts.  I can't tell you.  I can't predict the future.  I can only be honest in my emotions and also let you know that blogging...however cliche it may sound, might actually be helping me to get through this.  And my hope is, it will help someone else.  So, I will continue to post and I hope you will continue to read.

1. Cold

There was a time in my life when I was struggling with sleeping.  I couldn’t seem to fall asleep and when I did, I would have stress nightmares.  Lack of sleep caused the apprehension to grow, and all of a sudden I was feeling anxious about going to sleep which made falling asleep even harder.  It was a vicious cycle.  I had a friend who offered me a suggestion.  She said when she was stressed, she would replay her favorite moments in her head before going to sleep: her wedding day, the day her children were born, her first date with her husband, etc.  She would focus on falling asleep but if her mind wandered it would wander to a place she was familiar with.  She could control where it was going and ultimately it was a warm memory so it comforted her.  I made this a practice as well and sure enough, it began to help me to sleep easier.  But this drill no longer works for me.  Because without her in the world, without my best friend beside me, it is as if the memories have turned cold.  Instead of looking back and seeing a warm joyful family filled memory, I see something that was and will no longer be.  It is as if the color of the memory changed.  They bring coldness instead of warmth.  In addition, when I go to look at the future, I don’t see warmth there either.  It is hard to be excited about one day getting married or having children when I know that those days will be absent of her.  This is where helplessness sneaks in.  I have already lost my best friend and ally.  She was the person I would go to for support.  Memory recall was a calming process for me.  Now, I feel that I have lost that as well.  And this is the point where things feel overwhelming.

I have these moments where I miss my mom so much that it hurts.  It hits me like being punched in the stomach...or better yet, like a cold wind.  Like when you walk outside in the middle of a bone chillingly cold day and out of nowhere the wind picks up and takes your breath away.  And, for a moment you can't remember what warmth feels like anymore.  And I feel like I won't be able to go on, like I'll never feel ok ever again.  But, I always do.  And sometimes, knowing that I do go on is almost just as hard.

2. Jealousy

I don’t consider myself a very jealous person.  So, this particular emotion has left me feeling very unlike myself.  And, in a time when I already don’t feel like myself, I really don’t need more confusion.  I seem to feel jealous of everyone lately.  I walk down the street and feel jealous of the people passing.  They don’t have to feel what I am feeling inside.  I am jealous of God, because he gets to sit with my mom.  I am jealous of the baby my mom miscarried before I was born, as that child may very well be being held by her at this moment.  I am jealous of my mom that she no longer has to be a part of this world.  I am jealous of the people I work with, because they aren’t struggling to hide tears at their desk, or struggling endlessly to find motivation to work.  Normally, I combat jealousy by fighting back with gratitude.  While I do intend to do that, I also want to recognize that emotion.  Because, no one else seems to recognize it.

3. Privilege and Gratitude

My mom touched people.  Her story gave hope and inspired many.  We had so many people come to her service, write on my Facebook, send cards, and show appreciation.  These are all reminders of just how remarkable my mom was.  She was quite extraordinary.  She fought hard.  She chose joy.  She was love.  While the sadness currently outweighs the other more positive emotions, I do have a growing sensation of warmth from those emotions beginning.  It was such a privilege to be her daughter.  I feel quite proud of who she was.  I am proud of who I am because of her.  I am so grateful for the time I had and just the fact that she was so wonderful.  “How lucky I am to have something that makes saying goodbye so hard.”  Winnie the Pooh said that and you know what?  He knew what he was talking about.

4. Frustration

Everyone recognizes the emotional stress that goes on when dealing with a loss.  But what about everything else?  On top of all the emotional stuff, I have to call all of the bills, read all of the mail, change everything to be in my name, meet with her banks, have a judge sign papers proving that I am her daughter so I can change things at her banks, by some means go through all of her stuff and countless other things.  And, somehow I have schedule all of this around my full time job which I have no time off at because I spent the last 18 months only partially here and then took a lot of time off during the hospice time and after.  (Let me just add that my work has been great at working with me!  This frustration is not at them but at the situation which has nothing to do with them).  These are the things that people don’t think about.  Then all of a sudden, I’m drowning emotionally and otherwise.

5. Oceans

Grief is a weird thing.  I thought it would be this uphill battle, like climbing a mountain.  It's hard but eventually you get to the top and its downhill from there.  Instead, I'm finding it’s more like the ocean.  Sadness comes in waves.  And a lot of the time, in fact I would even go as far as to say most of the time, I feel like I'm drowning.  Still, there are times when my feet feel solid ground underneath all the water, and I have a moment to look around and see the true beauty that surrounds me.  The ocean may be terrifyingly big and deep but it is also magnificently stunning.  There are things in the water which can hurt or sting me, but there are also things which can nourish me, or help me along.  It is a hard and slow thing, grief is.  But, I am learning a lot.  So, there is that.

   

5 Things about Grief that you won't find in a Pamphlet:

There is a lot of literature out there on grief.  However surprising as it may seem though, things are still missed.  In this age of information overload, how can that be?  I’ll give you my opinion.  People don’t understand grief.  It is constant and yet ever changing.  My experience is totally different from anyone else’s and in addition, people don’t like talking about it.  I understand all of this.  Still, I write this blog with the hopes that someone will be touched.  Someone will read something and understand that they are not alone in their feelings and maybe I can use my pain to help someone else.

1. The answer to the unanswerable question

Are you ok?  How are you doing?  The question lingers there unanswered as I struggle for words.  If my attempt at skillfully avoiding the question with a smile and a redirect falls short, then I am left floundering for an answer.  The truth is, I don’t know how to answer that question.  Am I ok?  Obviously, yes, I am ok.  I’m still here aren’t I?  I’m not having a break down.  I haven’t gone mental on someone.  I am still working out at the gym and showing up at my job.  For all intents and purposes, were you to ask any innocent bystander, I believe “ok” would be exactly how they would describe me.  On the other hand, obviously no, I am not ok.  A huge part of me died recently.  In just a short time, my mom went from being totally there, to not being there.  That is hard.  And, no I am not ok with that.  I am not ok with the fact that I will not have a mother/daughter picture on my wedding day, or have a person to call for advice if I have a child who gets a high fever.  Nothing about that is ok.  So, to answer your question…I don’t know if I am ok or not.  I don’t know how I’m doing.  The question causes me a lot of stress when I hear it.  The over thinker in me starts pondering whether someone actually wants to know the truth of how I’m feeling at that moment.  If I am honest with them, will it overwhelm them?  I don’t like being fake either though.  In our society this question has become more of a salutation than an honest inquiry.  And “good” would not be a sufficient answer for me right now.  Truthfully, the question “am I ok” or “how are you doing” has no answer.

Still there is a confusing kicker to this little rant…here goes…please don’t stop asking.  I know that seems contradictory to everything I’ve just said.  But, right now I can’t imagine myself being ok ever again.  I can imagine the alternative.  I can imagine never being ok again, and never feeling right again.  And that thought fills me with fear and makes me feel helpless and alone.  The only thing keeping me from drowning in my own despair is a connection to the light.  I’m talking about you.  People.  People who ask me if I am ok.  People who ask me how I’m doing even if I don’t have an answer.  People who don't get frustrated by my lack of response.  People who don't expect a response.  The question may not have an answer but please continue to ask.  Because one day it will.    

2. You say you know…but I hope you are wrong.

Please don’t tell me that you know how I feel.  Chances are, you actually probably don’t.  Even if you have experienced something similar, all the literature says that everyone experiences grief differently.  Grief is a very isolated path and there are times when my only wish is to reach out to someone who could relate.  However, the overall feeling of loneliness that comes with going through something like this does not, for me at least, outweigh the fact that I don’t want you to know how I feel.  I would never wish this feeling on anyone, not even my worst enemy.  So, hearing that you know how I feel doesn’t bring comfort, but more sadness.  I hope you go through your life never understanding this feeling.  Because it is the worst feeling I have ever experienced.  I don't want to hear that you know how it feels.  

3. Grief is like a work-out

In an attempt to stay healthy, I have been working out every morning at 5:30.  This is one aspect of grief that everyone seems to agree on: lack of sleep, inability to sleep, sleeplessness, restlessness, and too much sleep, are all symptoms of grief and loss.  Still, what you do with those symptoms is your own bidding.  I seem to have ended up with some combination of the following: late night cleaning frenzy, followed by early morning passion for my work out, and then an afternoon crash at my desk at work where I struggle to keep my eyes open.  Anyways, in my trips to the gym every day I have picked up on another metaphor of grief.  Grief is like a weight.  It is there and it is heavy.  I can totally ignore it, but it is going to stay there.  However, I can wake up every day and decide to face it, to attempt it, to deal with it.  Weight doesn’t change.  Every day the dumbbells weigh the same as they did the day before.  What does change is my strength and ability to pick them up.  The more that I show up and work out, the easier it gets to carry the weight.  In 20 years, the weight of grief will not have changed.  The loss of my mom will still be just as horrible as it is today.  It will never get better.  The only difference is, that I will get stronger.

4. Worthless

For a lot of my life, and officially for the past 18 months I have been a caregiver.  Except for all of this, taking care of my mom when she had cancer was the hardest thing I have ever done.  There were many days when I felt like I would not be able to go on.  Still, with it came unsurpassed purpose and calling.  It was difficult, but I was doing something that mattered, and I was happy to do it.  In addition to losing my best friend in the world, I lost that.  I am no longer a caregiver.  I am no longer doing something that has such great meaning and sense of accomplishment.  It has left me feeling incredibly worthless. People don’t talk about the worthlessness that comes from death, but it lingers there with everything else I feel.     

5. Peace that surpasses understanding somehow brings a tiny glimmer of Hope

Things will get better.  There is a small part of me that gets this.  There have been moments when I have felt genuine relief and peace over all of this.  I don’t understand why, but it is there.  Because I don’t understand where it is coming from, I often can’t replicate it.  I wish I could give steps for how to get there but that would kind of defeat the point.  If I had a formula or an outline for you to follow then it wouldn’t truly be peace that surpasses understanding.  All I can do is tell you that it is there.  Everyone, including myself, has an expectation for how this grief should look and how I should feel.  I am slowly, and I’m talking snail’s pace here, beginning to see that letting go of those expectations is super important.  There is not a time limit.  There is no right or wrong.  Just be.  Because peace that surpasses understanding cannot be explained.  It can only be felt.  So, I have to just feel.  I have to allow myself to feel.  Feel it all, good or bad.  Because, amidst the bad, peace that surpasses understanding will creep in and with it comes a glimmer of hope.  And, things will get better. 

To bucket list or not to bucket list...

That is the question.

I have found through the course of the year that there are a few routine things that happen when someone finds out about my mom.  People tend to do some combination of the following.  They look at me, tilt their head, and say something along the lines of “I’m sorry” and then “Are you ok?”  Let me address these statements to start: first of all I am sorry too.  Cancer sucks.  Second, am I ok?  Please don’t ask unless you really want to know.  Because there is no simple answer to that question.  After my awkward response, people don’t know what to say, so they ask about her treatment.  I can give you specifics, but again there really is no simple answer.  My mom has been on a dozen different combinations of chemotherapy along with several other drugs.  We've also done diet changes when convenient and various other things.  Once the medicines have been covered, almost everyone decides to share with me some article they have read about some vegetable, oil, or new found plant which in combination with other things can greatly reduce cancer.  The best thing that you can do for someone in my position is just care.  And learn from what I’ve learned this past year.

The next thing people do is ask me what my mom wants to do.  Again, the word terminal carries a lot of weight.  And to be perfectly honest, it was one of the first things I asked my mom also.  We are approaching our anniversary.  January 7^th was the day that my mom received her prognosis that she was terminal and the doctors best estimate was that she would have a year left.  After meeting with the doctor, my family went out to dinner.  While my family worked out details, I asked my mom one simple question: What do you want to do?  And the scariest thing was, she didn’t really have an answer.  Why do we wait to determine these things?  Why do we only ask that question when we know the end is near?

So back to the original question.   Do I think we should all drop everything we are doing and make a bucket list at the first possible moment?  And the answer is yes and no.  If I’ve learned anything from the past year, it is that we should embrace the time we have.  If making a bucket list is going to motivate you to figure out what you want in life and go after it, then by all means bucket list away.  If it won’t, then figure out what will.  I am very pro choosing joy.  I am pro finding happiness through the hard times.  I am pro doing what you want and love.  Sometimes that means working hard to support yourself.  Other times it means quitting your job.  There isn't a right and wrong.  This year has been hard but I also feel like I have learned so much.  It is my new year’s resolution to help others come to the same conclusion, without needing the horrible cancer part in order to make the connection.

The last thing people do when they find out about my mom is ask me if there is anything that they can do to help.  Most of the time, I don’t have an easy answer to that one either.  But today I do: please just choose joy!  It really helps us.  We post pictures, write blogs, and share silly videos because the core of “Operation Choose Joy” stems my mom’s words, which have sort of become our motto: “If I can inspire someone else to not give up, then that makes this all a little less hard.” It helps to know if we are inspiring you.  It makes this all a little less hard.  So now, I’m asking all of you out there to do the same.  If you do something to choose joy, please use our hashtag!  If you cross something off your bucket list, share it on our Facebook!  Let us know that we’ve inspired you and that can inspire us to not give up.

And just to hit it off, here are some things I did in the past year which I probably wouldn't have if the circumstances were different.  I wish the circumstances were different, but I'm glad that I am making the most of it.  I hope you do too.

2014: The year of abundant joy.  This year-

Dyed my hair for the first time

got surprised by my best friends

Ran my first 5K ever

Visited the big ole heads

Went white water rafting

Watched my sister graduate with her masters

Saw some of the greats.

Wore my mom's wedding dress

Jumped out of a Plane

Melting Pot...nuff said

Wore my Pajamas in Public

Went trick-or-treating 

Got to be a part of her special proposal

Hers too!

Dressed like a man

And laughed

A lot

Seriously though

Did I mention the laughing?

A Day in the Life of a Caregiver.

I sat down to write about a day in the life of a caregiver. I thought it would be easy. I could talk about a regular day and be done with it. But the truth is, I don't have regular days and irregular days. I mean, sure there are some days that appear like any other day. To the untainted eye this would seem so. However, they aren't, because being a caregiver doesn't just change your day to day life but your thought processes, your schedule, and every decision you make. What changes is the details, and much of that happens in the unseen parts.

It took me a long time to connect with being called a “caregiver.”  It felt like some kind of honor I wasn’t deserving of.  I felt like I had been given the label “mother” without having to go through the hours of childbirth and months of pregnancy.  I just didn’t fit.  It wasn’t until months after my mom’s original prognosis that I felt ok calling myself that.  And even that didn’t happen overnight.

Perhaps this came from a place of obscurity in the word.  Even now if someone asked me what exactly a “caregiver” was, I wouldn’t be able to put it into words. 

Cancer effects your entire way of thinking.  Especially terminal cancer.  I can’t just go about my business as usual.  With every holiday, there is the question of whether it will be the last holiday.  You want to make it especially good but you don’t want to make a big deal out of it.  A big deal means more stress and more stress added to an already stressful situation can cause an explosion or implosion.  And when that happens, it is far from good. 

How do we live our lives like normal, but still embrace the idea that life is short?  None of us are promised more than this next minute.  It is a concept that I have been struggling with for ten months now.  Though I know I look as though I have come a long way, I feel as though I have not made any stride in the right direction.  Perhaps that is because I don’t know which way is the right direction.

From the outside, the caregiver would appear to be the person who brings her to her appointments, makes sure the bills are paid on time, cleans up vomit in a desperate time of need.  I am all those things and so much more.  The caregiver is the person who sees the symptoms in between the good and bad and learns to hone those skills to be able to see a warning sign early on.  The caregiver is the person who cries with her when she receives yet another bad report, laughs with her when she is loopy from medication, prays with her for miracles, prepares for the opposite, yells at her when she needs to take a break, and holds her hand when all is well for a while.  

I searched and searched for some book on the matter.  See, one of the ways that I learn best is by reading.  What does it mean to be a caregiver?  I couldn’t find a good one.  Not one.  I couldn’t find one that wasn’t riddled with terrible clichés meant to work for anyone going through a rough time.  It is because there is no way to put into words all that goes in to caregiving.  It is both the most challenging and best thing I have ever had to do.  Although it has been the hardest thing I have ever experienced, I wouldn’t give up these past few months for the world.  And that, ladies and gentlemen is the true meaning of caregiving.  Speak Life, Choose Joy, Live a life abundant.

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The Words You Never Want to Hear

Words are a strangely powerful thing.  I am strongly affected by words.  Think of how important it is to hear the words “I love you” on a regular basis.  It is so much a part of our culture that we often say it every morning, every night, and every time we leave the ones worth saying it to.  I personally am glad we say it as much as we do.  Life is short, and love is important.

Now, imagine hearing over and over again that you are going to die.  Imagine hearing at every possible opportunity that a doctor has, “We aren't fighting to cure, but only to elongate your life and keep you comfortable for as long as possible.”  Just imagine it. 

Recently, the doctor said two words that generally would be characterized as bad.  “It’s spreading.” In the cancer world, hearing “it’s spreading” is almost never a good thing.  However, this is a good story.  I promise it ends well. 

Meet Regina.  Regina is a wonderful German woman who has lived all over the world.  She has pancreatic cancer and is celebrating the last of her chemo appointments soon.  Regina saw my mom and me when we were dressed in Hawaiian skirts and leis a few weeks ago.  She crossed our paths but we didn't get the chance to meet her at the time.  She felt quietly inspired to join in and choose joy.  When we finally did meet her, Regina was dressed in a vibrant green tutu with a matching green wig.  It was at that moment that our doctor came out to us and said “It’s spreading.” He was talking about the joy!  The joy is spreading! 

Regina put it this way “We can’t always decide what we go through, but we do have a choice in how we go through it.”

As a person fighting terminal cancer, or in my case the caregiver of a person fighting terminal cancer, there are a few things that you don’t want to hear the doctor say.  In a perfect world, we would never have to worry about those things.  This is not a perfect world, and I guess my belief is that we can only do our best with what we are given.  I believe that we can reclaim what is said and sometimes even change it for the better.

Recently my mom heard some other words that you never want to hear.  “We are running out of options.”  The all-encompassing “we.”  I use it all the time.  “We have chemo.” “We have a doctor’s appointment.” “We are trying a new drug.”  At first, I felt very conscious of it.  I don’t have cancer.  Is it offensive to say “we?”  Wouldn’t it be more accurate for the doctor to say “you are running out of options?” And here’s the thing.  Cancer is all-encompassing.  It effects everyone: family, friends, doctors, and even my coworkers.  Cancer not only turned my mom’s life upside down, but mine too.  It’s not offensive to say “we,” it’s almost necessary.  So the statement stands, “we are running out of options.” 

How can we reclaim that though?  Currently, we are on a break from chemo because my mom's numbers were rising.  No chemo means no dressing up.  Are we “running out of options” there too?  

We don’t want to be!  We want to continue to choose joy and show the world our choice.  I keep going back to my mom's original thought "If my silly little story can inspire others, it makes this just a little less hard."  We want to reclaim those words!  Help us to know how!  Comment below with your ideas!  Speak Life.  Choose Joy.  Live a life abundant.