Identity

(The story of a chronically ill man)

His gaze falls upon an unknown figure in the mirror. He has tried to ignore for year but fails to do so. You see, the wounds from surgical procedures must be attended to so he must look. There the image is, staring back at him. It is also looking at the same wounds and scars. It winces in pain. it cries at the sight. Why? Is  it mocking the man? Teasing him because of his pain and agony? No. The image in the mirror is the man. He has forgotten who he was. 

He no longer wants to be what is in the mirror, what everyone else sees. Try  as he might to explain it, he just can’t . The fear of being judged and looked down upon haunts him. 

The identity he made for himself is gone. No is no longer strong, confident, or defined.. The body is bruised and battered. Scars and wholes cover him. They are signs of struggle from a war that he is not winning. Pain and weakness cover his face although he crease his lips to force a smile. Even laughter has become a task…too much of it and he is fatigued. 

The image that he avoided has become him. No one else sees it. They do not carry the burden of that visual. When he hears “you look good” all he can see is the image. Would  anyone feel this way if they saw what he has to see each day? Hearing it has become a burden.

Denial of his condition pushed him too far. Trying so hard to be normal and escape the reality hasn’t worked. He now stands before that image and realizes that it is him. There is no more running from or ignoring it. There are no more calls to him for help for he can barely help himself. Own it, do not let it own you. Cletia thoughts like these bounce around in the mind. He wonders if he is a failure because he is sad and depressed about all of this. People make it seem as if one cannot mourn. So he hides it all in an effort to appear stronger. In the end he feels like a fraud. Who saves the rescuer? He has become tired and exhausted from the charade. Now the image speaks back, “Are you done running from me? I have watched you for two years. I too felt what you felt but you never comforted me. You ignored me and pretended I didn’t exist. All the while I was here, wearing down. I begged you to take care of me and to listen. You were in denial. So I waited. Now here we are face to face. Are you finished? ” Then I, the man, answered back, “Yes, I am.” As much as it pains me, I am finished denying that I chronically ill. 

There isn’t anymore strength to pretend anymore. I am the image I tried so hard to ignore. So much time has been spent in denial. Constantly feeling ashamed and guilty for being sick and not being the person I want to be. There aren’t any more words to express. It is my identity.

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My Extraordinary Wife

My wife is EXTRAordinary. She is beyond anyone I could have ever imagined that would want to be with me. Certainly more than I deserve. I try to express it to her in word and deed, but it will never be enough. Sometimes I stop and take stock of all we have been through over 12 years. Our gains and losses. We have lost a lot. Not for the lack of trying though. We just end up losing. Don’t  get me wrong, we have gained much in friends, and relationships and that will always be most important. They have helped us through those losses but the losses still hurts. When she could have folded up and threw in the towel she kept on rolling along for us. Through the years of bad jobs that brought in little for us, my unfair lay offs, and even her jobs that didn’t appreciate her loyalty she never waivered. Even when I was finally able to make things good for us for a couple of years she never took it easy. That’s all I have ever wanted to do is the care of us. It’s all any man wants to do for his family. As quick as it came, it was all taken away. My hopes and dreams for us were smashed out of existence. Everything had to disappear. Once again we were the ones that lost and we still keep losing.

My disease caused it.
I lost my health, income that took care of us, vehicle….hope.
I could no longer take care of us. Still she never waivered. I know there are some tough women out there and this is not to dicredit them. Yet, have you ever had to lift a 230lb man off the floor in the middle of the night, or out of a shower because he was dead weight to weak to stand? How about cleaning him after going to the toilet then lifting him back to wheel chair or bed, bathing him, fixing food for him, dressing him, all of this before you left to go to work a job that barely paid you enough to make rent and car note each month. Then you came home and did the same thing again that night and the next day not knowing if this was going to be your life now? How many have watched their husband near death, rushed away to a hospital, keep composure enough to get him the care he needs, never breakdown, and still take care of things? When I did not want to go on living she lifted me up, even though she was exhausted. My wife has done those things and continues to! To say it amazes me is an understatement. Rent, electricity, heat, insurance, car, fuel! All of this on salary that would barely support ONE person. We have had some help and it so appreciated. Still she has carried the brunt of this load on her shoulders.

She has jumped right in and learned how to take care of the lawn. Last summer she raked leaves, mowed the grass, and kept the yard looking so nice. Whose wife should have to do this! I should be the one taking care of us! She has done so well. I have tried to help but it has been minimal what I can contribute anymore. She continues to do so with grace. We are literally day to day financially but she doesn’t balk.  I know it wears on her. It makes me feel that I must be so worthless in her eyes but she never looks down upon me. Jehovah has blessed me with a true gem, a capable wife. She is industrious, goes out and takes care of her home. She is prudent, respectful, and strong. Never thinks of herself. Most of all she is mine and I am so thankful that she is in my life. I knew when I met her that my life would never be the same. We could never have forseen what we would be dealing with 12 years later. My dream and hope now is that we can have  many more together.

Yes we have lost much but the one thing for sure is no matter what happens our love will never be lost. I have come to know that no one out does her!

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This Old Truck

I was wrenching on my old truck, which I call the Wheels of Freedom, and a thought came to mind. I am a lot like this old truck. Like me this truck started it’s life working really good. It has worked hard,  traveled many miles, and been a lot of different places. This old truck was perhaps once someone’s prized possession. Well, times passes and things change. Oftentimes they change rather unexpectedly.  Maybe this old truck doesn’t start one day. It has to be fixed to operate again. Its not as fast as it used to be. There are dents here and there and blemishes that can be seen and some not so visible. Its shakes a little and doesn’t stop as fast as it used to. This truck is just like me.

Although it has its imperfections it is still worth something.  I saw this truck and immediately saw some life there. When I look at myself in the mirror these days I still see some life there. My muscles aren’t as big as they used to be. This body isn’t as strong. There are blemishes all over. I don’t start as well anymore. Like this old truck I don’t move as fast. With all of my weaknesses I still feel loved. My family and friends make me feel valued. I appreciate that. I have seen the bad side of illnesses where people are forgotten and thrown away because they can no longer do what they used to. People shun away or stop looking out for them. That is not fair. We need to take care of one another for better or worse. Everyone has value whether physically strong or not.

Life is better with family and friends. There more value in an old truck that has someone to love it than a pretty one that doesn’t belong to anyone.

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Dream to Reality

My life took a major change earlier this year. Those changes led me to this point I am at now. Before this I would just go with the flow. Now I am creating my own path. I have been inspired by many surrounding me and in turn I seek to inspire as well.

This #MGWARRIOR refuses to go down without a fight. I now see my dreams as not just dreams anymore but an ever present reality now. Its amazing what how coming close to death will open your eyes. I am not afraid to test myself anymore.

In 2015 I plan to start my own business selling emergency preparedness gear. The utility belt will be one of the products that I have developed and will manufacture. Inspired by my love for outdoors! This campaign will help me get things up and running and see my vision become reality! Thank you for looking and sharing.

I will be sure to keep you all up to date on the progress as well. I have been working as hard as my little MG laden body will go LOL.
I am really looking forward to starting my new company. This will give me a new lease on life. It will also give me an outlet to create and put my mind to work. 2015 is going to be a wonderful year! I will not let Myasthenia Gravis stop me!

Take a look at the link. It takes you to my campaign page. Feel free to share as well!

The Outdoor Utility Belt Campaign

The Battle Within

I am tired of being me. Where is the reset button? It should be so simple and easy but its not. Why have I spent so much time giving yet have so much taken away? What has been the point of this if in the end it all means nothing? Or does it? The lines and meaning of so many things are blurred now. The frustation of all that is happening leaves me not able to see straight both literally and figuratively.  My world is upside down. No, I take that back it’s all over the place. It spins out of control, I see it when I close my eyes to try and sleep. Utter chaos!  No one would know it because I try to be strong for everyone else so that they don’t have to feel bad. I can’t do it anymore.  It has worn me out. There is no way I can sustain this for as long as I will need too. I am chronic. There is no end. Therefore how can I go on hiding. I will never be found if I do. Never have I felt so lifeless. The last few months have been the second worst of my life. There have been good days but evevn on those days I am fractured inside. Mainly because I am trying so hard to be what I am not anymore. I want to be who I thought everyone loved before I was sick. Perhaps  they liked that guy more is my reasoning.  Not sure anymore. I do not like this person I see in the mirror now. He is sad, alone, and hurting inside even when surrounded by others. It is a strange feeling. Pain, both mental and physical permeates my soul everyday. The smile can only mask it for a short while, and even then it hurts. This weight is crushing me.
I always wondered what would happen when the calls, cards, and visits became infrequent.  How would I react? Now that I am home do I need them more? We check on people when they are at the worst.  Why not in the aftermath? Don’t leave them. Thats when they need you more than ever!
I need you! Arghhhhh…I am all over the place! I told you it is maddening!
Feelings of irrelevance are frequent. Not having a meaningful voice in anything or just not being heard. I don’t know, this could all just be in my head.  I am confused, embarrassed, and just plain sick of it all. Still I wouldn’t trade with anyone because I love everyone too much. In a way I feel perhaps having to deal with this has protected someone else from having to carry this burden. No one should have to live in constant fear that the next breath can be the last. Or that the pills you just took may not work today, or those steps may be the last ones you take.  Over dramatic?  No it’s the everyday reality. Its the reason for the thought behind wishing there was a reset button. Its not feeling sorry it’s just feeling.
Its not healthy to bottle this up. The highs and lows of living with illness is apparent now. There is no hiding it not even from myself. I have to be true to me otherwise I will never be true to anyone and that, I cannot accept.
Although I intend to push forward everyday these feelings will come up. I fought them for a while because I felt it made me appear weak or perhaps my faith was weak. Then I spoke to someone in my situation and found that it wasn’t the case. I was just human. Bear with me. These writings are never intended to incite anyone to feel bad. They are meerly the dronings on of a broken man who found that he needed to stop ignoring the inner voice. A man who, although broken will continue to go on.

(This is the point where my heart calms)

There are many things I want to do. Things that I can do now that I didn’t even consider or took for granted when I was an able bodied man. I still have dream and ideas that I want to see come to reality. My mind is not as sharp due to the medications but I do what I can to keep it active and creative.  There have been and will be more days when I want to toss my hands up and be done with it all. Days when the drain on me is just too much. On those days I will pray even harder, because that is what my heavenly father, Jehovah would want from me. Those days are the most enlightening. I see things clearly then because he acts in our behalf when we are weak as he promised. We throw our burden, fears,  and concerns on him and let it go. On those days the surprise call, card, or visit comes.  See there, he knows what I need. Its such a comforting thought.
In the end my saddness is there but it doesn’t smother me. My resolve is strong. I won’t let this take me. It will eventually take me physically but I will not be taken without a fight. There is so much good in life even with all the problems we are faced with. My wish is that we all continue to look for the good more! It helps folks like me and it will definitely help you too.
I am calm now, hopefully sleep will find me soon. This day has passed, tomorrow is on its way.

THE BOOTS

The last time I wore these boots was April 7th of this year. That day I was laid off from my job because of loack of work. Three days later events started that have changed my life forever. These boots are significant to me because they represent work. I trained in these to be a firefighter, worked construction sites, and put miles on them in the woods while hunting. I wore these the day we were trapped on the roads during the “Snowpocalypse” ice storm. That day I spent hours out in the freezing cold pushing cars with fellow drivers. I never slipped or fell with them on. They kept me warm during the long walk to warmth later that night when I was stranded. Whenever I put them on it’s always for a reason. It seemed like that reason would never come again when my body began to deteriorate as a result of this dreaded disease. Beside this fact they were not accessible to me because they sat collecting dust on a shelf in the basement. It had become far to dangerous for me to go there due to not having enough strength to safely go up or down the stairs.

My power to do what I was taught from childhood by my father was gone. The power to create, to work hard and take care of yourself and others. These boots meant more to me than just something comfortable or warm to wear. In my mind I became more when I wore them; someone with purpose, a goal driven individual with mind made up that today was his day. It may sound over the top, but if you don’t have a reason for doing things then why do anything at all. Everyone has a reason: family, love, self, friends, etc. When the alarm clock goes off in the morning whether you are going to work, for a run, or just simply waking up there is a purpose to the day.

I felt like I was going to lose that purpose. Each day only brought more and more pain and trials. The boots drifted further from my mind as my life became filled with the horror of being unable to take care of myself. Instead of putting on my boots, they were replaced with by wife putting on my socks for me. Instead of standing tall and readying for the day, I had to be lifted from bed and into a wheelchair. After this it was to the living room to be helped with eating. Then the long day of waiting to be bathed and put back to bed again. What purpose could I find in that? It was a struggle to find any at all. Yet I did. Even through the battle for my life in August I still found purpose. I AM GOING TO LIVE AND WEAR THOSE BOOTS AGAIN!

This disease has taken its toll and will continue to as the months and years go by. My leg muscles are badly damaged because of how aggressively my system attacked my muscles. The arms are a little better, although my triceps will be very slow to come back. Still everyday I wake up with a purpose. TODAY i am going to try! What more could I ask of myself than to do just that. The day I awoke with that thought in mind it was then I realized that the qualities my father taught me where to be used for more than just the physical but the mental. I wouldn’t be getting ready to go to work for someone else anymore. The project now is myself. Today I am the one under construction. If yesterday was a tough day one on the job, I will learn from that and work hard to overcome it today. The advantage here is at least I’ve had a lifetime of on the job training, right? Tomorrow is not promised, but today is mine.

Guess what? I wore my boots for the first again the other day! They felt just as good then as the day I took them off. Its amazing what something so small can do for the mental and emotional side. That day was one of the best I have had in a while. I awoke with my mind made up, “Today is mine!” It was a wonderful day. The dog was even happy to see me venture outside with him! There has been a project that I have been dreaming about and I finally started on it too. You see what a pair of boots can drive one to accomplish. Ha now that I think of it I should have worn them in the hospital for PT! That would have been a sight. It’s ok, I wore my awesome running shoes then, but that’s a subject for another time. The point is that I once again felt proud of myself. I even told my wife about how happy I was to wear my boots again. She smiled!

When I took them off that night, it was with the thought that I will definitely wear them again, no matter what. No matter what happens to me in the future I will never lose my purpose.  Each day is a day to be thankful and to give thanks. Let us remember this and look forward to each and every day. Today is yours!

It started as therapy for myself but became something I wanted and was encouraged to share with others. It documents my journey with Myasthenia Gravis, my feelings, victories, defeats, and fears from diagnosis and throughout treatment. I am open and honest with how I, a once healthy 34 year old man, feels. No holding back here.