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.

38 Longs

I’ve always heard that your 40s are the best years of your life.  Supposedly, people are financially stable, have some wisdom, have learned from their mistakes, blah blah blah.  I can’t say from experience that it’s true.  One thing I’ve learned from being in my 40s is that your body turns into a hot mess, and it ain’t pretty.  It’s really a cruel trick of that fickle old bitch, Mother Nature.  I thought we women were supposed to be on the same team and build each other up.  Clearly, Mother Nature didn’t get the memo.  “They” say that 50 is the new 30, which means I should be in my new 20s, but 20 sure didn’t look like this.  There is really no part of my body that hasn’t been affected by the cruel advance of time.

Let me start by saying that once you’re past the age of 18, zits should be a thing of the past.  They slyly disappeared for a couple of decades, lying in wait for their eventual reappearance. Once I hit my forties, they reared their ugly red, white blistered heads once again…and not just on my face.  Nothing says pretty like putting your gray speckled hair up in a clip only to have Mount Vesuvius staring at everyone like a third eye on the back of your neck.  What the hell is up with that?  I know I’m not the only one.  I have friends in their forties who also wonder why they suddenly have a pizza neck, or scalp, for that matter.  Don’t get me wrong, my face is not immune to such hideous eruptions.  It’s not enough that the wrinkles start making an appearance, but then to be flanked by a melon sized, oozing pustule is just beyond reasonable.  Don’t even get me started on groin zits.

Let’s move away from the face because nothing is as much a slap in the face as what happens to breasts at this glorious age.  Really.  They sag enough that they could slap me in the face if I moved at just the right angle.  They used to be so cute and perky, and almost the right size.  In my 20s they were a 34B.  Twenty years and three breast fed kids later, they are 38 longs.  When I bend over to turn on the shower faucet, they look like tube socks with a few inches of sand at the bottom.  They dip in the water at the bottom of the tub.  I could tuck them into my waist band.  They are too big and that makes it hard to find decent shirts that will contain them.  I used to wish for bigger boobs.  My wish was granted but at a time in my life that they are more of an eyesore than an asset.

Sagging in general is the suckiest thing about aging.  Apparently, someone came along one night while I was sleeping and replaced my tight little birthday suit, with one that looks a few sizes too big.  It’s also clear that it hasn’t been ironed in years and someone left it sitting in the drier for way too long.  It’s all out of shape, so apparently nobody let it dry flat either.  It also has a roadmap of veins on its legs that could lead me on a road to deep depression if it wasn’t for those lifesaving capris and long dresses that are popular now.  I have to say that as much as I love summer, I am thrilled when it’s time to get out the fall and winter clothes again.

Needless to say, this decade of my life isn’t all it’s cracked up to be.  Things sag, erupt, crack, groan, get stiff, and make involuntary noises.  It’s not enough that I notice it, but my darling children love to point out body parts of mine that are swaying in the wind or lying flaccid next to me.  They are a charming bunch.  I happily inform them that someday they will go through the same nonsense, and that if there is any justice in the world, their kids will make them feel like crap, too.  I just hope that I will be able to witness the payback from my rocking chair as the drool slides down my cratered, pock marked, droopy face.  The least Mother Nature can do is let me get there.  We moms have to stick together.

The Noose

In November of 2007, I returned to the workforce after staying home with my three kids for ten years.  My youngest child was in Kindergarten, and I needed something beyond the mommy and household stuff.  I also wanted to start contributing financially.  We had decided to sacrifice lots of things, especially money and the “extras” it can buy, so I could be home with our kids.  It was extremely important to us.  Two weeks after I returned to work, my husband’s tumor was discovered.  In addition to the toll on my husband’s health and the incredible stress it placed on the family emotionally, it began to destroy any hopes we had of financial freedom.  Over the past almost 7 years, any hope of financial freedom is gone, and has been replaced with the dream of just being able to be comfortable every month.  By comfortable, I mean that the mortgage and monthly bills are paid, we have enough food on the table, and perhaps we can do a few fun things during the month.  Our hopes of providing college educations to our children, or going on great vacations, or giving our daughters big, beautiful weddings are gone.  I don’t know if I will ever be able to retire.

We are in survival mode and have been every single month since my husband stopped working in October of 2009.  It’s a way of life for us.  It is possibly the absolute most stressful part of my life.  It’s like constantly dangling from a noose, trying to hold yourself up so you don’t suffocate. In addition to raising three kids, managing a household, and dealing with an ill husband, I work to try to make ends meet.  Medical retirement and disability payments barely cover the mortgage and food.  There have been times we considered shopping at the food bank.  We get energy assistance so our electricity doesn’t get shut off in the winter.  Our kids qualify for free or reduced lunch.  We didn’t pay our mortgage for 6 months, and still could barely make it.  We get free stuff for our household from the dump.  When we have a little extra, we do something fun so our kids don’t have to miss out all the time.  We do our best to give them things, and as a result we sacrifice what we want, or live with that much more stress.  They only get one childhood, and I refuse to make them feel “poor,” or let them feel as if they are missing out.

My husband and I have both worked since we were about 12 years old.  We both have a good work ethic, and we do what we need to do to provide for our family.  We always paid our bills, and were responsible with our money.  Then the illness took it all away.  I have sat around dinner tables where people talked about how “irresponsible” people are who “live beyond their means” or don’t “keep up with their mortgage.”  They criticize people who need help with mortgage programs, or who “live off the government.”   Comments are made by people who have no idea what it’s like to be in that situation.  People judge with no regard to the facts.  They judge people who would do anything to be healthy and provide for their family.  Living this way isn’t laziness or irresponsibility.

We commonly hear comments from friends or family members who complain about how they struggle or how upset they are over some financial stress they are having.  These same people are hiring people to clean their houses, or are taking their kids out to eat or to some fun event several times a week.  They are planning multiple vacations every year, and buying new cars.  I even had one person tell me they were a little upset that they are now making so much money that they are in a new tax bracket and no longer qualify for the child tax credit.  Their tax refund was going to be less this year.  I sat there like an asshole and gave sympathy, when what I really wanted to say was that I would literally give one of my arms to be in the next tax bracket, rather than struggling every damn day of my life.  I had just told her that we qualified for a new child tax credit because we are low income.  These same people know how hard it is for us.  Sort of.

 

There is a shame that goes along with the way we are living.  I don’t know why.  Shame implies that we have done something wrong.  We haven’t.  We’ve tried to do everything right for ourselves and for our children.  I never, ever share our true financial story with anyone.  We pretend it isn’t as bad as it is. People have some idea, but they don’t know what it’s really like.  It’s exhausting and hopeless and depressing and frustrating.  The stress leaves me teetering at the edge sometimes.  Yet, somehow, we always make it through.  We are lucky to have some family and friends who have been Godsends at times.  There are times we wouldn’t have made it without them.  The struggle is never ending, and sometimes people get tired of helping.  We don’t know if we will ever be able to repay people for what they’ve done to help us.  There is no end in sight to the struggle.  We try to pay it forward and help other people when we can.

People talk openly about the physical, emotional and psychological effects of chronic illness on themselves and their families.  But when it comes to money, people keep it to themselves.  Yet, I suspect it’s one of the most detrimental aspects of living with chronic illness for everyone involved.  It is by far the most stressful part of my life and affects my mood, stress level, health and outlook on life every single day.  The nonchalant comments from other people make it even worse.  I don’t know what the solution is, but putting it out there without shame is a good start.

Call Me Crazy

I’m about to do the unthinkable.   I never thought this day would come, to be honest.  I had to think about it for a couple of months, weigh the pros and cons, and seriously consider the fact that I just might be certifiably insane.  What would I be missing?  Would my life be over?  What the hell will I do with myself?  How will I survive?  Then it struck me like a lightning bolt.  These thoughts are precisely why I need to do this.  I need to shut down my Facebook page.  That’s right.  I said it.  I’m shutting it down.  Not permanently…I’m not that loony.  The plan is to shut it down for the summer.

For the most part, I have enjoyed Facebook over the past few years.  I’ve gotten to know people better, and I like that I can see what’s going on, and share in people’s life events.  But over the past year or so, I’ve found myself more and more irritated with the nonsense and insignificant dreariness that people feel the need to share with the world.  I’m confident that I can make it through my day without knowing where people ate dinner the night before, what cashier is out sick at the local Walmart, and whose kid saved the world from some imminent disaster.  I can manage to drink my morning coffee without seeing someone’s 137,868th  selfie or picture taken by their bff.  Here’s a newsflash:  We all know what you look like…you haven’t changed since yesterday.   I’m also confident that I can survive, and so too will other people survive, if I don’t share the crap I share, too.  Facebook is ultimately a crapfest of who did more, who did it better, who looks better, who went more places, who has a better imaginary life, who has a smarter kid, not to mention those awesome vague posts that are simply an attention-getting tactic.  I need a break.  I spend more time being irritated than I do enjoying.

As I thought about doing this, I realized I need a plan.  I can’t just go cold turkey without figuring out a way to spend my time sans FB.  At first, I was almost in a panic and came very close to ditching the whole idea.  Then I thought, what did we all do before the internet and social media?  We all managed to have a life before Facebook was invented.  So, I made a plan.  This summer, I am going to do the many things I’ve claimed I didn’t have time for over the past several years.  I am going to read as many books as I can.  I am going to go to the gym several times a week.  My family joined the YMCA, and my kids are just as eager to go exercise as I am.  We are also doing a major nutritional overhaul in our house…no more junk food or processed food.  Well, occasional junk food.  Let’s be realistic.  I used to draw and do artistic things.  I want to start drawing again.  I find it incredibly relaxing and enjoyable.  I lose hours at a time, just by creating a drawing.  I also want to get my house in order so it’s not an embarrassment when people drop by.  I HATE cleaning, so if I get it cleared out and have a plan to keep it up, it will free up time to do the things I enjoy.  I want to get back to nature by going to the beach, going on hikes, or just sitting outside and reading.  I want to spend more time with my kids and give them my full attention.  I want to write.

I’m sharing this all through my blog for two reasons.  One, it’ll keep me honest.  If you all know I’m ditching facebook, then you will also know if I sneak back on.  I don’t have the self-control to do this on my own.  I need to be able to tell myself that I’ll look like a spineless moron if I don’t do it.  It’s the embarrassment factor, which is always a good way for me to not do something.   The second reason is that this is all part of an experiment that I will be writing a blog post on in September.  The experiment is just to see if I can do it, and what I can accomplish by getting rid of a serious time suck in my life.  If I can do it, other people can, too.  Life is too short to waste time reading about what other people are doing.  Life is about going out and doing.  If I die tomorrow, I will be much more satisfied that I spent today sitting on the beach, reading a book, talking to my kids, and enjoying all of OUR moments.