Tag Archive | family

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.

Abandonment

As I’ve written about in previous blog posts, I have a chronically ill husband.  It’s not a disease that will go away.  It’s progressive and incurable at this point.  It can be manageable, but it’s also unpredictable, and some days are good days and some days are bad days.  Chronic illness affects families in many different ways.  Patients and spouses go through many emotions at different times.  An ongoing theme that I’ve noticed affects both my husband and I, and has a ripple effect on the people in our lives, is abandonment.  We abandon and we feel abandoned.  I can’t speak for my husband, but I can share what it’s like for me.  I have always kept this stuff bottled up inside me for many reasons.  I feel like I have to be strong and be able to handle everything.  But I can’t.  I don’t want people who leave me out, to know I feel abandoned because I don’t want them to feel bad.  So, I feel bad instead.  I feel guilty for having less than stellar emotions.  I don’t know why.  I’m human and entitled to be negative at times, and feel sadness, and feel upset with people.  Mostly, I don’t want other people to worry about me, or have my hard times affect their happy lives.  I know in my head that I shouldn’t feel this way, but since when does that matter?  We feel what we feel.  That is one of the reasons I write.  It’s therapeutic for me, and I think it helps other people who are going through the same thing.  Writing lets me get out my feelings without having to say them.  It’s easier for me.

One of the hardest things that I have gone through over the past 6 ½ years, is the feeling of being abandoned.  There are people who I have thought would be there for me who have not.  I don’t think it’s necessarily intentional, but nothing hurts more than people you care about becoming scarce when you are left to hold together a family affected by illness.  There have been many people who have stepped up and been great supports to us, and for that we will be forever grateful.  But there are others who have not.  My husband has told me that he feels left out of things, and he says it doesn’t bother him, but I think it does.  I know it bothers the hell out of me when I feel left out.  It happens frequently.  We aren’t sure why.  Maybe people think we can’t afford something, or he won’t be up to it, or maybe we just aren’t as fun because we can’t do everything everyone else does.  We wish people would invite us to do things and leave it up to us to decide if we can or not.  Sometimes we will be able to, and other times not.  I need to get out and keep living my life and do fun things.  He is still living and he should get out and do things, too.

Abandonment goes in both directions.  I work, take care of a household, and I’m busy with three older children who have places to go and activities to do.  I’m also looking for a better job.  Thankfully, my husband is still at a point where he doesn’t need me to be a caretaker, but there are days he doesn’t feel well and I do take care of him.  I spend a large part of my life doing for others, and there are those times when a crisis happens and suddenly there is a trip to the hospital.  Out of necessity, I abandon those things that aren’t of vital importance.  My house tends to be messy…who wants to spend a free day cleaning the stinkin house?  I do whatever amount of laundry needs to be done in order to give us clean clothes for a couple of days.  I’ve also abandoned certain dreams…buying a bigger, nicer house…spending my older years traveling with my husband…retiring, in general.  There are those times, when I don’t feel like doing anything on the weekends, so I don’t seek people out to do things with.  When you spend your weeks always doing, a day off to do nothing is a luxury.  A day to myself, doing anything I want to do is almost unheard of.   Because of this, I have done my share of abandoning some people.  One of the people that I don’t spend nearly enough time with is my Mom.  But she is the one person in my life who I know will NEVER abandon me, no matter what.  It’s not fair to her.   I am going to change that.  The irony of all of this is that I feel abandoned, and the one person who has never abandoned me is the one I leave out.  Sometimes, I just feel like I have nothing left to give.  I’m tired.  There are also times I feel like I’ve abandoned my husband, but again, sometimes I feel like I am depleted of whatever I have to give.  I have also abandoned some of the people who have stopped bothering with us.  That was hard to do, but necessary for my peace of mind.  Sometimes, you just have to let people go.

All of these feelings lead to that old cycle of guilt and resentment.  There are millions of people who are going through an illness with a family member.  We have become a caretaking society…people take care of parents with Alzheimer’s, children with autism and other disabilities, cancer patients, chronically ill family members.  It’s not an unusual thing to have someone in your life that needs to be taken care of.  Someday, YOU may need to be taken care of.  Or you may be taking care of someone.  Take a moment to reach out to someone who is going through this.  Please understand that a lot of times, the person may say no to an invitation.  Keep asking anyway, because it makes a world of difference to know that someone thought of them and took the time to at least ask.  It helps people to not feel abandoned and isolated, and that goes a long way.

The Abyss

In November of 2007, the words “they found a tumor” altered the course of my husband’s life, my life, and my children’s lives.  Those words started a two year journey to find a diagnosis, followed by several years of treatment attempts, horrible illness,  multiple hospitalizations, incredible stress and strain on our family, more questions than answers, and ultimately, the realization that this wasn’t ever going away.  In fact, it would only continue to get worse…his disease is progressive and incurable.  The roller coaster of emotions never stops, but I have learned a lot about myself, the people in my life, and life with a chronically ill family member.

 

For myself, this isn’t an easy journey.  People tell me all the time that I am an incredibly strong person.  I am strong because I have no choice but to be strong.  What would my alternative be?   I can choose to give up and stop living, or I can choose to be strong, do what needs to be done for my family, and be here for my husband.  I’m strong, but not infallible. I make a choice every day to laugh, enjoy my family, find a few things for myself that I enjoy, and try not to get sucked into the abyss of never ending illness.  However, there are a lot of struggles that I endure every day that people who haven’t ever been in this situation would fail to grasp.  People who haven’t lived this may even think less of me for feeling the way I sometimes feel.  You just can’t fully understand it unless you’ve lived it.

 

There are two emotions that play a constant role in my life…guilt and resentment.  I didn’t sign up for this.  Who would?   I have a lot of days that I resent what this illness has done to me, my husband and the life together that we will likely never have.  We won’t spend our later years traveling together, or going out and doing things with friends, or staying up late having interesting discussions.  Those things are few and far between for us already.  I know this isn’t anyone’s fault, but that doesn’t make it any easier to accept.  I feel resentful of friends and family members who WILL get to do those things, or who can go on great vacations, or who express worries about money when they are making two or three times what we are struggling to live on. I am resentful when I see other couples out doing things together.  I am resentful when I see other families with healthy Dads, actively engaging in activities with their children when my children’s Dad barely has enough energy to get through a quiet day at home.

 

The usual emotion followed by resentment is a big, healthy dose of guilt.  I feel guilty for feeling resentful of the illness, and other people who have an easier life.  I feel guilty for yearning for more from life. I would never wish this on anyone.  I am happy for people who are happy with life.  But sometimes I still resent it, which makes me feel guilty.  I have a lot of things to be grateful for.  I have a husband who loves me, three amazing children who I love more than life itself, some incredible friends, incredibly supportive parents, and many family members who have always been there for us.  I get it.  I have many good things in my life, too.  But that doesn’t take away the resentment and the guilt for feeling resentful.  It is what it is, but it doesn’t make it easier to accept.  Again, for people not in my shoes, this may be hard to understand.

 

I tend to keep my feelings to myself, and withdraw from people during my darker times.  I am an introspective person, and usually prefer to solve my own issues on my own, and in my own time.  I’m sharing this not because I want anyone to solve this issue for me, or because I’m looking for sympathy.  These are my issues that I deal with every day.  They aren’t right or wrong…they just “are.”  I’m sharing this so that people can maybe understand what it’s like to live this type of life.  There are many people out there feeling isolated, misunderstood, resentful, guilty and hopeless.

 

People often ask what  they can do to help a family or person dealing with illness.  They usually mean by actively doing things…making a meal,  or helping with a task.  There are other ways you can help.  You can help emotionally by letting them know that you are there if they need you.  You can help by realizing that your every day issues are issues they would give anything to have, rather than the stress they are living with on a long term basis.  You can help by including them in things so they don’t feel isolated.  You can also help by being sincere in your interest in how someone is doing.  Don’t ask if you don’t REALLY want to be a listening ear. It is noticed when you aren’t really paying attention to what someone is telling you.  You can help by listening without trying to give advice.  Advice is nice if it’s asked for, but mostly it’s just nice to be listened to and sympathized with.  When I feel as if I’ve been really heard, it makes a world of difference.  It makes the resentment and guilt go away for a little while.  It gives me hope.