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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.