Archive | August 2014

Beyond The Cover

You can’t judge a book by its cover.  How many times have we heard that phrase?  We know what it means…you can’t judge something based on its appearance.  Yet, it’s human nature to do exactly that.  How many times have we seen a dirty, homeless person on the street, and thought to ourselves how lazy they are, or perhaps mentally ill, or just plain losers?  How many times have we looked at someone of a different race and made assumptions about them based on stereotypes?

A little over a year ago, we were on vacation in Sunset Beach, North Carolina.  My daughter, Hannah, was 14 at the time and had brought a friend with her for the week.  One day, they decided to walk down to a group of gift shops because her friend wanted to buy her younger siblings some souvenirs.  As they walked through the store, the owner followed them around, and then finally kicked them out and told them not to come back.  Both girls were shocked because they had been doing nothing but looking around.  They weren’t bothering anyone, or acting suspicious, or trying to steal.   What were they guilty of?

Both girls were teenagers.  Both were wearing black, perhaps one or both of them had a skull somewhere on their clothes.  Both of them had numerous piercings in their ears, and Hannah’s friend had gauges that enlarge the earlobe.  They may have been wearing black eyeliner.  Did the woman feel threatened by them because of their appearance?  Did she judge them as shoplifters because they looked different?  That’s a shame if that’s what she did.  Not only did she lose a sale that day, but she also made two nice, honest  girls feel offended by her actions.  They felt what it was like to be stereotyped and judged, based on their appearance.  Both of them were upset and didn’t understand why they were being judged when they weren’t doing anything wrong in the store.  I explained to both of them that the woman likely judged them by their appearance, and even though I know, and they know, that they are good girls, the woman saw only their style, and reacted based on that.

Hannah is now 16, and she wants to get her nose pierced…a small stud on the side of her nose.  I have always told her that I wouldn’t allow her to pierce her face, but I am allowing this small piercing.  Why?  Because I think it looks pretty.  All of her piercings have small holes so that they can be removed when she wants, and they won’t leave large holes in her body.  Hannah wants to go to nursing school, and eventually she will be going to interviews for jobs.  She has seen first-hand how appearance affects people’s opinions.  She understands that it’s okay to have your own personal style, but that there are times that you may have to tone it down in order to get to where you want to be.

There are some people that have told Hannah that it’s “wrong” to have piercings, or that the way she dresses is wrong.  She’s been told by family members that she is ruining the body that “God gave her.”  She has been made to feel bad for what she likes as her own personal style.  She has been judged based only on that style.  She has been given gift cards for her birthday in past years for places like Aeropostale, or Hollister by people who think the preppy look is the “right” look.  Isn’t that a not-so-subtle way of telling her that her appearance is wrong? I think that a lot of us look at the people close to us, and feel that their appearance reflects on us.  If she is wearing black and has her nose pierced, what does that say about me?  It says nothing.  It’s not about the rest of us.

People overlook her amazing qualities, and allow her appearance to overshadow them.  Hannah is a person who is open minded, doesn’t judge others, and is quick to speak up when she feels someone else is being judgmental.  She has no tolerance for intolerance.  She is loving, and caring, and wants to spend her life caring for the sick.  Yesterday, Hannah and two of her friends saw a large amount of garbage left in the woods near our house.  They filled three garbage bags with someone else’s trash, brought it home, and put it in our garbage pails.  Are those the actions of a person that deserves to be told she is ruining what God gave her, or to be kicked out of a gift shop for doing nothing but shopping?

Never judge a book by its cover.  Hannah’s cover is beautiful, regardless of a few holes, or the black clothing it wears.  Her cover encases a beautiful soul that shines wherever she goes.  Don’t miss the soul because of the cover.  Wherever you go, take a moment to look beyond the cover, and see the soul inside.  THAT is what counts.

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The Ice Bucket Challenge

As almost anyone who lives in the free world is aware by now, there has been a viral campaign going asking people to either dump ice water on their heads or make a $100 donation to ALS (Amyotrophic lateral sclerosis).  ALS is also known as Lou Gehrig’s disease.  I’ve watched as friend after friend on Facebook has been nominated, and videotaped themselves making a little speech, and then dumped ice water over themselves.  Honestly, I was starting to feel relieved that nobody had nominated ME for two reasons.  One, I don’t have $100 to donate to anyone, and two, dumping ice water over myself sounds like some version of self-torture.  I hate being cold.  I don’t even like to drink ice water.

But then it happened.  My dear sister-in-law, Julie, nominated me in her video.  That was an instant of sheer dread that I haven’t felt since, well, I don’t when.  I started thinking of excuses as to why I couldn’t do it.  I considered donating money I didn’t have.  Then my heart took over and I realized that the ten seconds it would take for me to pour ice water over my head, was a much shorter time to suffer, than the patients with ALS have to suffer.  I decided that not only would I do the ice bucket challenge, but I would also make a donation within my means to ALS.

Once I made the decision to participate, the next order of business was to plan my wardrobe, makeup, and hair for the big event.  I don’t normally post videos of myself on the internet.  In fact, this would be the first time.  People who are my friends through the internet only, would hear my voice and see me live for the first time.  I went with black pants for the slimming factor, which honestly didn’t matter much.  Bare feet sounded good because I hate walking around on wet flip flops, and I have a tendency to slip ungracefully on them.  I couldn’t have that happen, although I’m sure it would have made my video much more entertaining.  I actually showered, and did my hair and makeup before the dumping.  I know.  That was really vain and stupid.  But whatever.  The ALS was getting their money and some awareness, so if I wanted to look decent, then call me vain.  I don’t care.  It doesn’t matter that the video quality was so poor that I could have done it with bed head and yesterday’s makeup running down my face and nobody would have seen it.

The time came to suck it up, prepare the ice water, and do the challenge.  I practiced in front of the camera first, to make sure the angles were good, ie. a “thinner angle.”  I wanted to practice my speech, so I didn’t sound like a bumbling fool.  It took a few tries because my son was standing next to my cameraman daughter, making faces and pretending to laugh at everything I said.  His support is always a blessing. All he had to do was look at me a certain way and I would start laughing.  He kindly offered to pour the water for me, but I passed on that offer as I knew he would inevitably throw it in my face, rather than allow it to prettily run down my svelte body in a “supermodel standing under a waterfall” way.

After a few practice tries came the real thing.  It’s very easy to hesitate indefinitely before pouring ice water over your head, so I told myself I would just do it without thinking about it.  I made my speech to the camera, nominated my unsuspecting friends and family, and dumped the ice water.  Holy shit, was it cold.  The shock to my system didn’t wear off until hours later.  I think I had frostbite down my neck and back.  My kids laughed…a lot.  It was okay because every good comedy needs its own laugh track.  My kids were happy to oblige.  They’re sweet like that.

So, it was over.  Done.  It really was easy, and kind of fun, all for a great cause.  If you get nominated by one of your loving, considerate friends, please seriously consider doing both the ice bucket challenge AND making a donation.  The ice water is to spread awareness…asking for donations wouldn’t have the same impact if it was just some person standing there asking for it.  It also gives your friends and family the sick pleasure of watching you torture yourself.  In my opinion, simply dumping ice water doesn’t excuse people from making a donation.  I think it’s important to spread the awareness as well as make a donation, even if it’s just a small one.  Every little bit helps.

If you are interested in learning more about ALS or in making a donation, please visit http://www.alsa.org/.  In the meantime, if you are nominated to do the ice bucket challenge, buck up, buttercup, and just do it!

Out Of The Ashes

Living in a household affected by chronic illness is challenging, stressful, frustrating, and sometimes next to impossible.  It often feels like a jail sentence from which there is no escape.  But over the past almost seven years, my family has experienced amazing acts of kindness that we may not have seen if all had been well in our world.

In October of 2010, my husband wound up in the hospital with a failing kidney.  It was decided that he needed a nephrostomy tube placed through his back and into his kidney to allow it to drain properly.  His tumor had occluded his ureter and his kidney was swollen.  It was the only thing they could do to save his kidney function on that side.  We didn’t know it at the time, but that was the turning point for his disease and we had yet to feel the full impact on our family.  Meanwhile, I had a hip resurfacing surgery scheduled for early November that year, and we decided I should keep the surgery date and get it done before he was any sicker and I couldn’t take the time to do it.  I had surgery, and a few weeks later, my hip fractured, and I had to return to surgery for a total hip replacement.  My second surgery was 10 days before Christmas, and my sick time had run out.  Neither of us had any income coming in.  With three young kids, and no income, the stress of Christmas was the highest it had ever been.

One day, a letter came in the mail, addressed to me.  I opened it and found $500 with a note saying that it was so my children could have a nice Christmas.  It was signed, “Santa.”  I felt the tension release from my shoulders immediately, and was so excited that I could buy them presents to put under the tree.  A week or so after that, we found a gift basket full of cheese, crackers, snacks, and assorted other goodies, left inside our back door.  There was no note and we had no idea who had left it for us.  We put it under the tree to save for another day.  We decided to open it a few days before Christmas.  At the bottom of the basket was a green gift box.  I opened the box and found $800 in cash.  To this day, we don’t know who left those for us.  But whoever it was, they were our Christmas angels that year, and we will be forever grateful for their kindness and generosity.  That was the most stressful two months of our lives.  Our world had completely fallen apart, and yet out of the ashes came hope, love, and incredibly kind gestures that made all the difference to us that Christmas.

Over the years since my husband got sick, we have been the recipients of numerous kindnesses from many people.  Our friend celebrated her 40th birthday, and asked all of her friends and family to donate money to help us, in lieu of gifts for herself.  Our parents have helped us out numerous times when we were in a bind.  They have paid our mortgage at times, bought us heating oil, bought us appliances when ours had broken, and my awesome uncle even gave me a car when mine had died.  Friends gave us money this past Christmas and we were able to buy heating oil and pay some bills.  My parents treated us to a Disney vacation,  have taken us on vacation to the beach in North Carolina, and my husband’s parents treated us this summer to a vacation in Vermont.  The list goes on and on.  People have made us dinners, and taken our kids to do things, and helped with projects around the house.  Every gesture of kindness has been very much appreciated and drastically reduced our stress during those tough times.

Families dealing with chronic illness tend to get caught up in the day to day stress of trying to keep their lives as normal as possible, even though their lives are anything but normal.  It helps to take a step back sometimes and look at the good that has come out of a tragic situation.  We have had friends come into our lives who have provided companionship, laughter, and time away from “the disease.”  Anonymous people have come through to help us when we needed it most.  We all have a choice to get lost in the rubble, or to stand up and see the beauty that can come from the same mess. We were dealt a crappy hand, but because of that hand, we have also been given the profound gift of friendship, love and generosity.  THAT is the true gift.

Signs

A Prayer for the Caregiver
by Bruce McIntyre

Unknown and often unnoticed, you are a hero nonetheless.
For your love, sacrificial, is God at his best.
You walk by faith in the darkness of the great unknown,
And your courage, even in weakness, gives life to your beloved.
You hold shaking hands and provide the ultimate care:
Your presence, the knowing, that you are simply there.
You rise to face the giant of disease and despair,
It is your finest hour, though you may be unaware.
You are resilient, amazing, and beauty unexcelled,
You are the caregiver and you have done well!

 

Several years ago I was on vacation in North Carolina with my husband, kids, parents and my aunt and her boyfriend.  One night after dinner we went around the table and asked each other the questions that James Lipton asks celebrities at the end of the TV show, Inside The Actor’s Studio.  The last question he asks is, “If  heaven exists, what would you like to hear God say when you arrive at the pearly gates?”  My answer to that question was that I’d like to hear the words, “You did a good job.”  I’ve always tried to do a good job, whether it was raising my kids, being productive at work, or just by being kind to everyone.  I’ve always tried to be a good person and do the right thing.

I’m not a religious person.  I’ve never had use for organized religion, but I definitely believe in God and consider myself a spiritual person.  My relationship with God is personal, and I don’t feel a need to share it with other people.  However, in my daily life when I’m struggling with a decision, or unkind feelings, or coping with stress, I frequently ask myself what God would want me to do.  Daily life with a sick spouse can be filled with stress, frustration, anger, resentment, sadness, loneliness, isolation, and exhaustion.  This is especially true when your day also includes raising children, managing a household, and working.

Over the past several months, it’s been a real struggle for me to deal with the resentment I have for my husband, our life together, and my life personally due to an illness we have no control over.  I’ve watched my husband go from a man who was always extremely energetic, busy, and on the go from morning until night, become a man who has so little energy that even the shortest tasks exhaust him.  I’ve watched him go from the life of the party to someone who stares into space, wanders around the house, and sleeps for long periods of time.  It’s extremely hard not to feel resentful when I’m running around taking care of the daily needs of three kids, myself, my husband, a household, and be responsible to go to a job.  I often feel like he is here physically, but his mind is tuned out.

I resent that everything is on my shoulders.  My plate is overflowing.  It makes me not want to do things for him.  I do it anyway.  It makes me want to run for the hills sometimes.  I daydream about what it would be like to run away from it all.  But I stay.  It makes me fantasize about life after the illness, when he’s gone someday.  That will be an awful day, but it will be liberating, too.  All of these things make me feel guilty.  It’s a daily struggle, a never ending cycle of resentment, fantasy, guilt.  We aren’t even at the point that my husband needs personal care, but I’m overwhelmed.  I had breakfast yesterday with my friend Yvonne.  She is my dear friend of 41 years.  I told her all of this and said, “I’m not even really his caregiver yet.”  Her response was, “you still have the mental stress.”  That acknowledgement was priceless for me.

I came home from breakfast and found the above poem.  I believe that sometimes God sends signs.  I believe that poem was a sign for me.  “For your love, sacrificial, is God at his best.” That line changed my entire perspective.  God works through us to help people who need it most.  It made me remember that question that I hadn’t asked myself in a while…what would God want me to do?  My husband is in need of someone to be here for him, not only to meet his physical needs, but emotional support, and to provide a home environment where it’s okay to feel lousy, and sleep, and just be sick.   When the days get rough, and the stress gets high, I will read this poem to remind myself of the good I’m doing for my husband and the example I’m setting for my children.  I’m sure there will be many days that are a challenge for me.  I’m only human.  Hopefully, there will be fewer days of resentment, and more days appreciating the time I have with my husband and making his years as comfortable as possible.