Simply danLrene

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The Ramifications Of Helplessness In The Chronically Ill

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The ramifications of helplessness in the chronically ill is a very sensitive topic and one that I hope I can do justice to. I have many times talked about how the chronically ill must grieve every time a part of their ability to do something on their own is lost and then comes the need for acceptance of where they are in life. Probably the hardest thing to accept is helplessness.

Helplessness comes in many forms and we give up personally when we are helpless to do whatever task it is that we are attempting to do, whether it be something like tending to one’s own personal needs or trying to plant a few seeds in a pot or fix your own dinner plate or even wash your own hair, or we feel helpless to deal emotionally with some event in life. No matter what it is, unless one is in the exact same place, it is hard to understand what it does emotionally to the person that is helpless.

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I have lost the ability to do many things. I tend to focus on the positive and to try not to dwell on what I have lost but there are moments where we feel such a sense of frustration and loss that it can bring us to tears. I have projects that I have tried to work on over the past year or so and can not do it alone.My son offers to help but it is not something that is in his area of expertise. It makes me feel impotent to carry out this task and leaves me feeling defeated. I have to fight these feelings for they can take over if we are not careful. I have started work once again on these projects and am slowly making some headway.

The ramifications of helplessness in the chronically ill are the person losing the desire to keep trying, the person becoming filled with despair, and the person feeling  frustration and loss that is as big and black as looking into a big empty volcano hole and the one that is feeling helpless feels like they are falling head first into that black hole.

“To my mind….. the more helpless the individual, the more it is entitled to protection by man from the cruelty of man.”  Gandhi

I have had people tell me that they would do this or that  for me and they mean well and it is nice to have the help but most people are totally clueless about the devastation that comes with becoming helpless. They are cavalier about what is happening to us, which makes us feel minimized or diminished. And their help is in actuality taking over whatever I am trying to do or taking it out of my hands because I am slow doing it.

As I normally do, I am going to use myself to explain and to paint a picture that I hope helps others to get a glimpse into what it means. I am helpless when it comes to putting my shoes on. I can no longer bend my legs up close enough that I can put my socks or shoes on. My son has to do it for me. I can not wash my back sitting in my shower chair and so my son, after I get wrapped in a towel, will reach in and scrub my back. And the list goes on. Over time, I have found some solutions such as wearing clogs that just slip on even in the winter and the snow when going to the van. Now, my son has no problem putting my boots on for me but sometimes I just want to do it myself.

When I had the radio frequency ablation, I was helpless to change the bandages that were on my lower back  which was extremely embarrassing because the lower spine ones are down below the waist of my pajamas. But I must have it done and son is my caretaker and so he does it. I handled well losing the ability to cook and having someone else fix my food for me because I can still feed myself. And the list goes on.

Helplessness equates with dependency on another and none of us really like to be dependent on another person for our most basic needs. There are so many things I want to do and dream of doing. I want to take my photographs of the clouds and put them in a book and yet I am helpless to do it alone. I want to put my blog posts in a book but the helplessness comes because I get so exhausted and in pain just from trying to cut and paste and get it just like I want it. And I fight the urge to just give up. I want to go out on the patio but can not alone because there is no ramp out to the patio and if I go out the front door, there is a big heave gate that I can not open into the patio. People who can do often fail to see that some things are just impossible for the chronically ill to do alone.

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Yes, you all know me well and I wear my mojo and I refuse to give up but I want to use myself so people can maybe get just a small look and a flickering of understanding of what helplessness is like even for strong people like me. And some have told me “oh I know. When I broke my leg, I was totally helpless”.  Yes, that is true that a person with a broken leg is helpless to do many things. But the difference in someone with an injury like a broken leg and someone with an incurable chronic illness is that the broken leg will heal and the ability to do will return where a person chronically ill will continue to lose the ability to do things.

I am writing this because I want others that are not chronically ill to maybe get where they can look at us and see we are not just lazy or just do not want to do anything. We are really ill and in many aspects of our lives, we are helpless. We fight to keep going and to not lose the ability but it happens. Yes, I will admit there are some people in the world who fake or exaggerate how sick they are and that makes it even harder for those truly sick, but not all of us are exaggerating. In fact, the majority of the chronically ill are not so please do not let those that exaggerate or fake color your view of all of us. I am also writing this because I want those that are around us not take things out of our hands if we are taking too long to do it but to look at us and say “can I do anything to help?”   And if we are at the point we can accept help we will tell you yes.

I remember someone who is a reader of my blog telling me how she was trying to get the snow off her car and she just could not do it and was standing there crying in despair and frustration at the feeling of being so helpless. Not one person came to help and just walked on by her. Helplessness has many ramifications. It can strip us of our dignity. It can strip us of our fight and determination. It can throw us into the pit of despair and make us quit fighting to keep going.

And when those around us look at us like we are just not trying or we are just lazy, then it causes us to pull into ourselves and we become isolated because we just can not take the judgment. And most of us do not want to keep drawing attention and keep saying we are disabled and can not do this or that. One of the most important things for a person chronically ill or disabled is to be able to accomplish for our own self-pride and to do things for ourselves as best we can. This may mean we do not do the kind of job you would but just doing the job can make us feel pride in ourselves. We have to learn to praise ourselves and be proud for ourselves when we accomplish something and we do not depend on the words “I am so proud of you” coming from others. For what happens when that person is no longer there?  We are always with ourselves..

Please stop and look at us sometime and see our grit and determination but also see the tears that helplessness brings and step up and gently say “can I give you some help?”.  That would mean the world to us. My aunt that I call “Mama” fell in a parking lot one time when it was summer and the black top was boiling hot. Not one person came over and asked her could they help her as she struggled to get back on her feet. She walks with a cane and has spinal problems like me. She had tears streaming down her face as the helplessness set in and her hands burned every time she put them on the black top to try to stand. Looking around she could see people just watching but no one offered to help. She finally managed to get herself up by hanging on to a hot bumper until she could pull herself up and slowly walk until she got into her car where she sat crying from the helpless feeling and burnt hands and knee. And that memory seared deep into her heart and the fear of being helpless has really set in.

We are not contagious. Most of us are not lazy or faking or exaggerating. We are people with chronic illnesses, some that you can not see if you look at us but that are slowly taking our bodies and as we lose more and more of the ability to do. And that feeling of being helpless, of being dependent on another begins to hover over us and we have to learn how to accept the reality of what is happening to us and know that our lives are changing in ways we never dreamed would happen. And when we need help and keep asking and no one is willing, the ramifications of that helplessness are staggering especially as it grows and we become more and more helpless in other areas of our lives.

People ask me how I handle this. I have my moments where I cry in frustration. It is not bad to feel frustrated or down about it. It is how you allow those feelings to dominate your life that matter.  I might cry and then I shake my fist at it and say “you are not going to win” Sometimes beating that helplessness involves asking for help.  We have to be willing to ask. Life is full of things that batter us and we may cry in frustration or pain but then we have to pick ourselves up and say we choose to not let the loss destroy us. It is our choice to decide how we are going to feel about our lives no matter how they are.


February 26, 2016 - Posted by | All | , , , , , ,

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