Tag Archive | Acceptance

Adjustments

It’s been almost 8 years since my husband’s disease was discovered.  It’s been a long 8 years, full of learning experiences I never thought we would ever have to endure.   I’ve learned how very possible it is to get through every day life, struggling with exhaustion, or finances, or lack of time, or situations out of our control.  I know what it’s like to continually take one step forward and two steps back.  I know what it’s like to make sure my kids have a good childhood, with interesting experiences, unique opportunities, and the chance to become the people their souls are meant to become, all while living with a fathers’ illness that invades every part of our lives.  Life has been an ongoing struggle between dealing with a sick spouse, the loneliness of losing people in our lives who can’t deal with it, grieving the loss of our dreams, and living every day life, raising kids, enjoying what we can, and just keeping on going whether it’s an easy day or a hard day.

The hardest lesson has probably been acceptance of how this disease has changed our marriage.  Eight years of spousal illness takes a rough toll on a marriage.  Both of us are dedicated to each other until the end.  There is no question of that.  We love each other and we are both loyal to each other.  But life has changed for us.  My husband sleeps all the time.  When he is awake, he has no energy, or he has energy for short amounts of time.  He is on so many medications that he is often in a zone and not really hearing what I’m saying, nor responding to me.  He is in pain almost all the time.  It never goes away completely.  For all the exhaustion he has, he never sleeps well because he can’t get comfortable.  It’s really hard to watch your husband suffer every single day.  I get tired of it all. Sometimes, I just want to get out of the house so I don’t have to look at him like that.  There are days I want to scream out of frustration…frustration that he isn’t talking to me or listening to me, frustration that he can’t do much to help me out, frustration that it will never get better.  It’ll only get worse.  We likely won’t grow old together, and get to do the things we used to talk about doing when we retired.

There have been many times that I felt alone with all these frustrations, grieving the loss of a marriage that won’t be what we had hoped.  But, he deals every day with illness.  He never feels good, he is always wiped out and exhausted, he is bored being home alone all day while we are at work or school.  He wants to be included when we go out and do things, even though he doesn’t always have the stamina to keep up, and often wants to come home early.  There are times I need to get out of the house and away from the disease, so I don’t ask him to go.  I want to go out, and not have to worry about whether he is tired or in pain and needing to leave early.  We recently had a conversation in which he told me that it makes him sad when we do things and don’t invite him.  Honestly, I hadn’t really thought about it…I needed to get out, and I figured he wouldn’t want to go because he’s sick and can hardly stay awake.  I didn’t always think about asking him.

It made me realize how important the little things are when you are in this situation.  We can’t easily do the big things any more.  I don’t remember the last time we had a date night, or went away for a weekend, or did something fun together. Now, I’m happy when we have a ten minute conversation and he is awake and paying attention.  I’m really happy when he acknowledges the things I do around the house, or the little things I do to help him out, or when he brings me a candy bar just because I know he was thinking of me.  He is happy if I go to Walmart with him, or ask him if he wants to go with us somewhere, or if we pick up sandwiches and eat lunch together.

Life with a sick spouse is all about adjustments.  If you can’t adjust to a situation, you’ll never make it.  A simple shift in the mind can make all the difference in how peaceful your life is.  We have made small changes in order to make life a little easier for each other.  There will be more challenges and crises down the road, but if we do what we can for each other along the way, even little things, those challenges will be that much easier.

Advertisements

For Now I Won’t Be A Loser

I recently entered a “Biggest Loser” contest at work.  The way it works is that the person who loses the highest percentage of weight by April 9th will win the title of Biggest Loser, as well as a monetary reward.  I thought this would be good motivation because not only can I use the money, but a weekly weigh-in is required and I figured that if someone will be seeing my weight every week, I am going to make damn sure it goes down consistently.  It is now 3 or 4 weeks later, and I haven’t lost a blessed pound.  The only reason for this is that I haven’t even tried to lose weight.   Well, I tried on some days and not on others.  I didn’t really try to resist the temptation to eat something I wanted, but shouldn’t have. I finally realized that I wasn’t in the right frame of mind to try to diet.  It’s not that I don’t WANT to.  It’s that I just can’t do it right now.  So, I felt like kind of a jerk about it.  I let the group down, and I let myself down.  I want to be thin, and look great in my clothes, and have people look at me and see a 47 year old, thin, fit, and healthy woman.  But I’m not ready to do the work yet.  And after really thinking about it, I wondered why the hell I should be feeling guilty about it.

I am not in a place in life right now where I feel I can take on a personal goal and be successful at it.  I have more on my plate than the average person.  I have a sick husband who has failing kidneys, and is on so much medication, that he spends his days sleeping, or severely lacking the energy to do much of anything.  My weekdays start at 6 a.m. when I get up to make sure my kids are up for school, and to get myself ready to go to work.  I’m in work by 8:30 and spend my days with 5 year olds.  I am home by 4, at which time I have to make any phone calls that need to be made (if I remember to make them), run any errands, shop for and/or make dinner, help with homework, make sure there is some clean laundry for the next day, straighten up any messes (usually half assedly because I am out of energy by dinner), run any errands that didn’t get done before dinner, have at least a little conversation with my kids, and get ready for the next day.  That is all I do on a good day.

In addition to my full time job, I just took on a part time “small business” that I’m trying to get up and running so I can make some “extra” money.  So my evenings also now involve answering emails and FB messages, learning about the company and the product, and promoting my business.  Soon, there will be evenings that I will be out at parties, selling my product.  Then there are the evenings that my kids have appointments or activities that I need to get them to.  Friday nights are often spent taxiing kids to friends’ houses or to meet them at the movies or ice skating, or even at the occasional concert.

The weekends aren’t much quieter.  They are spent trying to motivate myself to get up and clean the pig sty that is my home.  After a full week of working and running around, it’s all I can do to dust, vacuum, clean the toilet, straighten the mess, and catch up on laundry.  I never catch up on laundry.  My house always feels dirty and messy, even if I clean.  I feel guilty about that, too.  I wonder what kind of wife and mother I am that I can’t keep a neat, clean home, have dinner on the table every night a la June Cleaver, and have everyone’s clothes cleaned, pressed and put away.  I try to do it all.  But my weekends are also spent carting my kids around, or out and about getting things for them for school, or things for the household for the following week.  At some point, I have to get to the godforsaken grocery store…a place I’ve come to detest.  I’m tired all the time.  This isn’t how I want to spend my weekends.

Recently, I thought about all that I do.  When I list everything like I did in this blog post, I realize I do A LOT.  And I do it pretty much on my own.  My husband and kids will help out a little, but the majority is all on me.  Why is it that I always feel like I’m not doing enough?  Why do I feel guilty that I’m not a perfect housekeeper, or a perfect cook, or a perfect wife and mother?  Why do I never feel good enough?  Why do I always feel like I should be doing more?  I compare myself to other women who have neat, clean homes, or who go to the gym and look perfect in their jeans, or who cook a hot meal every single night rather than order take out.  It’s not just me.  I think A LOT of women feel the same way.  Why do we do it to ourselves?  I don’t know the answer to that question.  But at this point, I’m allowing myself to be okay with not trying to lose weight.  I just can’t put that on myself right now.  I need to let something go for now, and so I’ve decided to let the guilt go of not trying to lose weight and being the perfect size 10.  I’m going to be okay sitting in my dusty living room, eating my chocolate chip cookies.  Just for now.

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.