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.
You sound like you have a healthy attitude toward this tragedy. Keep finding joy in the little things! My mother struggled with cancer my entire childhood, dying when I was in my 30’s. Not quite the same but I feel for you.
This piece brought tears to my eyes. I deal with similar feelings, being the “sick” one in the family. The strength and perseverance you and my husband show dealing with the day to day challenges is awe inspiring! Thank you!
Renee, The only way people will truly begin to understand friends or family members who are going through similar situations, is to have a “Voice”. YOU are that voice – your feelings, thoughts and comments are what people need to hear… to know what to do when they are suddenly in this position, to know that listening does more good than they realize, that feelings of guilt and resentment are natural and “others” feel like they do.
Your message is inspiring and I’m going to share it. Good luck.
Thank you so much! It was hard to hit “publish” on this one, but I know there are a lot of other people out there, feeling the same way.
Hear, hear, Judy!
Reblogged this on "Greatest Generation" Life Lessons.
Renee, what a thoughtful piece. Thank you for sharing the challenges of your journey with us. Easy for me to say, but please be gentle with yourself when you feel resentment. Of course you do. You got dealt a crummy hand. Maybe there’s worse out there, but yours stinks. You have those feelings, but you don’t wallow. You shake them off and keep moving. I’m sure you are doing the best you can do every day. And some days you are less awesome than others, just like the rest of us, but I bet most days you are pretty darn great.
And you can still revel in what’s funny in life, and that is a true gift!
Renee, I think it is a virtue of mine to be a good listener. We live so near each other…let’s get together for a drink and I promise I’ll listen. 😌 I love you so much!
I feel like I wrote this myself. I have been where you are now. Your feelings are very normal and I felt them too. One thing that helped was keeping a gratitude journal. It’s obvious that you are grateful for many things, but making yourself find something unique each day may help a little. Some days it was a cup of coffee, but I had to take what was available.
I never thought my caretaking situation would change, but I learned that change is the only constant in our lives. My mother still needs help 7 years later, but she made strides in ways I was told were impossible.
You have the right to your feelings. I can’t tell you to stop feeling guilty because I couldn’t either. Let yourself feel and do what you’ve been doing – writing about it. At a minimum you will find people who empathize, and that alone is comforting.
Also, take care of yourself. Caretakers are not good with self-care, but it is a requirement. You deserve as much care as you are giving.
A brave post. I am sure it will help others who struggle to admit the complex anguish of living with this kind of rough deal.
I’ve been wanting to read this for weeks, and was finally able to sort out my stupid phone in order to do so.
You say that you’re a strong person because you have no other choice, but this isn’t true, you’re a strong person because that is what you are, and therefore choosing to fall apart, is not an option for “you”.
And…Not only do you not fall apart, but you also find the strength to give voice and be honest about your feelings in a public arena, allowing others to see inside of such a personal situation, in order that it may possibly help others going through similar situations, to not feel so alone.
There is a reason that you are one of my best friends.
You’re a truly beautiful person inside and out Renee, one of the very best people i know, and i love you dearly my friend.
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