In today’s time there is a lot of what I call the “busy-busy syndrome”. It is like watching ants running all over the place. Families on the go all the time, people rushing from one thing to the other. And maybe it is the southern in me, but I have to wonder why the need to rush? How can you enjoy anything if you are always rushing. It is like trying to eat a meal in five minutes. You do not even taste the food.
Do people try to shove too much into their day? Maybe they want to do too many things at once. I remember being young and thinking I had all the time in the world to do things and thinking I had time later to spend with loved ones. But, we are not guaranteed that. Time is like sand and slides right through our fingers. Have you ever gotten up one morning and then suddenly it is bed time and you wonder where all the time went? That is how easily we can lose it and if we are rushing all the time, it is even easier.
“Your children can be around you all day, but if you don’t spend quality time with them and if you don’t pay attention to them and talk to them and listen to them, it doesn’t matter that they are just around you.”
There is time and then there is quality time. We all have plain ole time that slips through our fingers but if we are rushing all the time, we are losing that quality time. I would rather have thirty minutes of quiet time talking to my children, than ten hours of everyone rushing around half way talking.
I guess being older than dirt, I look at life differently. I realize that all these things we think we have to do are not going to make one difference when we die. I would rather my loved ones remember me hugging them and telling them I loved them than all the gifts in the world.
Son and I were talking about how families seldom sit down to eat meals together anymore, how televisions and computers occupy so much time that conversation does not happen anymore. When we moved over the mountain and were at the motel seven weeks, we got up every morning and went down to the little dining room and ate breakfast together and sat there drinking coffee and talking. And we got spoiled to that because we would sit there for over an hour just talking.
I am such a country girl and love the slower paced life. That does not mean I do not want to go anywhere or do anything because I do. I just do not want the rushing that seems to go on today. I would love to slowly travel across the country in that bus we have on our dream list. The reason for the little bus like they use to pick up the handicapped, is it has a lift for my chair and motor homes do not. But, slowly go across not zoom and then you can’t remember where you went or what you saw.
I would love to go and spend two weeks in a boarding room right near the Panacea in Italy and be close enough to get to the train and close enough to just meander around the streets right there and soak it all up. I love Italy and on my bucket list is to return there one day. I would love to go to France and see Julia’s France, the back streets and the real people and slowly walk the streets and see all the vendors.
I think I no longer have a hurry button on me and it makes me sad to see so many rushing around and then can not even really tell you what they did that day. Time, it runs out for all of us so what have you done with yours? How fast is the sand running through yours in comparison to what you are doing? We have no guarantees of tomorrow and I do not want to regret not being with those I love and not telling them and showing them how much I love them.
Son and I do grounding which is going back to earth and nature. We sit outside, bare feet on the ground with the wind softly blowing and the sun shining through, and we allow all the negative energy to escape through our feet into the earth. We also take the time to just talk about life. You all should try it some time. Unplug those computers, cellphones, WiFi or turn them off and allow your bodies to just release all of that negative energy that flows through the air from all the electronics we use and let it flow out the bottoms of your feet. I think you will be amazed. Our NA ancestors knew this and knew that we were part of nature and how to heal ourselves.
I believe in fighting and keeping going in life in spite of obstacles. I have been this way all my life and it has been a good thing with all the health issues I deal with. I could do like some people and lay back and whine that I just can not do it and expect others to do it for me but I do not. You can call it self-respect, personal pride…whatever…but the truth is I do not like being thought of as someone who uses other people for what I can do for myself and so I do not. I am just too head-strong.
I am still going and fighting to get better. Some days it is really hard and it would be so easy to lay back and say I can not do it. But, the truth of the matter is, I get a rush every time I push myself to keep going and I accomplish doing it in spite of what the illnesses are doing to me.
My health issues will take me down one day, but they will not without the fight of all fights. I refuse to let it win if I have anything left in me to stop it. Sometimes my son will say I should not do this or that or that I can not do this or that and my response is ”you watch my shirt tail pop son”. That means I am going to try or go down trying. So, I put on my wonder woman head band and say to my illnesses and diseases that are stealing my life ”you take that cause I am NOT giving up!” The diseases will take me down one day but I can guarantee you that they will get an “arse whupping” on the way down from me.
Some days the diseases will win but that is ok because when I lay here at night recouping, I am building my fight back up to give it a run for its money tomorrow and the next day and the next. Hear me diseases for my roar may be small at times but it is still a roar.
I live on faith. Yes, I have faith in God but there is also another kind of faith. It is the faith that I will wake up in the morning ready to fight again. It is the faith that I will endure one more round of high pain and muscle spasms and a hard time breathing one more time. It is the faith that I will not give up but will keep fighting not just for me but for the ones I love. It is the faith that when things are too tough and I can not stand it, I will be carried through it. It is the faith..that I will never lose my faith in God, in those I love, in survival, in truth, in honesty, in justice, in goodness, in peace, in love, in compassion for those things keep the world going. And it is faith in the knowledge that sometimes, faith is all I need.
I have a great deal of emotion about the truth and people being honest. I tell people I live by a creed which is do not lie to me and do not steal from me. It does not matter whether it is my time, my money or my heart just do not steal from me.. Son tells people I have a built-in radar and know instantly when someone lies to me. And my son is probably right and that makes some people very mad with me because they know they can not lie to me and get away with it. The reason I hate lies is the following:
This one sentence changes the whole scope of things. When someone lies to me, than I know in their eyes I am not worth knowing the truth. And anytime anyone lies, that is what they are saying whether they mean to or not. Once a person lies to me, they have lost all credibility with me. I would rather hear the truth even if hurtful than to be lied to.
I guess I am a funny person. As long as you are truthful to me, I will stand by you through whatever comes. That does not mean I will defend you if you are wrong. It means that I will not leave you even if you get in trouble. I will stand by you so you do not have to go through it alone.
Do not believe in anything simply because you have heard it. Do not believe in anything simply because it is spoken and rumored by many. Do not believe in anything simply because it is found written in your religious books. Do not believe in anything merely on the authority of your teachers and elders. Do not believe in traditions because they have been handed down for many generations. But after observation and analysis, when you find that anything agrees with reason and is conducive to the good and benefit of one and all, then accept it and live up to it. ~Buddha
This is very evident to see in what is going on in our country and the world right now as politicians are campaigning for office. We can not longer trust mainstream media to tell us the truth. They will present what they stand for instead of being the watch dogs they used to be years ago. So, if you can not believe the media about these politicians or these political parties, what do you do? You research for yourself the people you want to vote for and then make your decision but do not let others lead you into that decision. Not all GOP are bad nor are they all good anymore than all Democrats are good or all or bad. This is why I do not vote by party.
The truth and standing up for what is right go hand in hand. One should not stand up for something that they have no clue as to whether it is true or not. We were given a brain and that brain was so that we might reason and study and learn and not just accept the appearance of something without first checking the foundation. Believe in what you know to be true not what someone else tells you to believe. And once you spot a lie, then put your guard up for that means anything that the person or place has told you is suspect.
“In the End, we will remember not the words of our enemies, but the silence of our friends.”
Martin Luther King, Jr.
I found this to be a very profound quote. And it shows which should be the most important thing to us and that is our loved ones and friends not our enemies. I find that people can get so caught up in what the hate mongers on the internet have to say that they waste a lot of time fussing about them instead of just enjoying and living their life. It is all in how we view it and I do not view what strangers and enemies have to say as important enough to keep me upset for days on end.
I see people put quotes on all the time that say that real friends will go along with what ever you are doing, they will follow you into trouble, etc. And my response is: no, a real friend will try to stop you from getting in trouble and will tell you the truth even when it hurts or makes you mad.
There are two ways the silence affects those we love or ourselves. One is when friends and loved ones are not there to support us in times of pain, suffering or crisis. That silence is acutely felt and is hurtful. We will remember it for a long time. We will remember the silence they left us with. Perhaps they could not handle it or perhaps they just do not like to deal with others suffering or a crisis but it still leaves a path of hurt when it happens. I usually find that those that have left me in crisis are the very ones that want me to listen when they are in crisis. And I will listen because that is how I am.
I love what this quote says for I am also a big believer in that if we are truly friends with someone or if we truly love someone like family or friends, then we are honest with them. Many people will just agree with those around them just for the sake of agreeing and actually will not say anything when loved ones including friends are doing something that will make them look bad, are doing something that can get them in trouble, are doing something deceptive or whatever. I believe that if we truly love someone, then we are totally honest with them. I do not mean make every conversation one of contradicting someone. This is about the important things.
If you saw your best friend or a family member stealing, would you say anything? If you saw them carrying on with someone’s significant other or spouse, would you say anything? If you saw them doing something that could get them in a lot of trouble, would you say anything? If your friend or loved one was telling lies would you say or do anything to make them stop? If you saw them abusing their children, would you say anything? If your friend or family member were driving drunk, would you say anything? Or would you just be silent and let it happen and then when they wrecked and killed themselves or someone else, would you wish you had said something?. I believe personally that if you love a person, then you say something to them even when you know it may make them mad or hurt their feelings for hurt feelings or anger are better than them getting in trouble or someone getting hurt or having a huge blowout because of their behavior.
I think one of the loudest noises in the world is the “silence” of others. And I think it makes us complicit to the other person’s behavior. Being silent is being complacent. And complacency causes complicity. I remember seeing a child abuse case and the whole family knew it was going on and so did the neighbors and not one person said anything, not one person. And the child died. All because people would not step up and say what you are doing is wrong and you are hurting those children. And if they could not do anything to stop the family member personally, they could have reported the person for child abuse and had the child removed from the home. And so now, to me, it was not just that parent that killed that child. It was all the people who failed to say anything that helped kill that child too. It was all the ones that were silent that contributed to the death of the child.. That sound that echoes across the land is called silent complicity.
Stand up and do what is right. Yes, it is hard and can be uncomfortable but if you really care, you will stand up and will tell your loved ones when you see them acting in ways that are harmful to themselves and harmful to others. I see many parents who will not stand up to their children and try to be their friend instead of their parent and the children suffer from it. I hear people say they know that their friend or loved one is doing this or that and going to get in trouble but they will not sit them down and say to them ”If you do not stop you are going to get in trouble”. And the big question is why? I believe people are afraid to do that for fear they will lose that friend or loved one or have them get very angry at them.
I simply believe that the anger or even if the person never speaks to you again because you have told them that you know what they are doing and that they are messing up royally is worth the price. That way you can say you did all you could. I would rather see anger or have them walk away than to see them go to prison or to lose their family or whatever. I would rather see teens be mad at parents who stand up to them than see them turn into something that will get them in trouble down the road and that will turn them into people who do not make them selves accountable for their own actions.
To me, this is what not being silent is. It is an attempt to make a person be accountable for themselves. If someone lies all the time and you just sit there and let them, then you are encouraging them to not be accountable for themselves and you become complicit with their lies. You are enabling them. If you let them know in some way that you know they are lying, then they must face themselves and be accountable for that behavior. Plus by saying something, you are making yourself be accountable. For when you know that it is going on and never say a word, then you are part of the lie or the deceit.
I know I have been missing in action and I do apologize to all of you. First I was recuperating from surgery and it was taking a lot longer than I thought it would. And when you feel so bad, the brain just does not work to well. Fortunately I am over the surgery and feeling much better and can now work towards getting work done on the spine. And just to show you, here is a picture of me feeling so much better since the surgery. Amazing how much better I look with all the infection gone and healing taking place. This was taken a few days ago.
Second reason I have been MIA is I have been so exhausted, more than normal due to the van transmission dying on us and having to ride in son’s jeep. To repair it is more than the value of the van. Our only mode of transportation now is the Jeep Wrangler. And if you know anything about jeeps, you know it is not made for someone with my disabilities. But, I am resilient and I do manage to get into it. I only go out for doctors right now. We are working on selling things we no longer need and then my son is going to sell his jeep and get a vehicle easier for me to get into. But, that brings us back to the exhaustion point. When I have to go beyond my normal means to do things, it zaps me and I tend to crash and sleep to try to rebuild the strength. Another reason I have been MIA.
And the third reason is that my son here has helped me compile my poetry book that I have worked on for almost two years. Some of you have read my poetry so you know how I write. Well….*drum roll* ….the book is complete, we just got the proof copies for one last look and then it will be time to hit the publish button on Amazon so that the book goes on sale. I am so proud. I feel like I gave birth only it was less painful. *Giggling*. And here are a few pictures to show you front and back and one to show how thick it is. It came out to be around 80 pages. I know poetry books do not become huge sellers but I will be happy if it just sells some. The author is shown as “simply danLrene” because that is the writing name I use but there is a picture of me sans the oxygen hose in the back with my name and a little write-up.
The font is a size 12 because I wanted people to be able to read with ease. The picture on the front is the view from my front door. There are other pictures I have taken in the book too. And on the back is one of my quotes that I love so much. I could not have done this without my son here helping me put it together. My hope is that it sells enough to help with the vehicle fund.
So, as you can see, it has been a very complicated few weeks. But I am back ready to write again. I will post the link on Amazon once the book is published and ready to go on sale.
Before I can tell you of Juliana and her siblings, I must first tell you of John and Tammy Carver. I came across their story on YouTube and it touched my heart to the core. Maybe it touched it so much because of the health issues I have been through and my sons have been through. All I know is that John and Tammy are two of the most loving and caring parents. You only have to watch them to know how much they love their children. Back in the late 90’s I believe it was, they decided they wanted to adopt children. They started off adopting two and then kept going back and getting more until they had six children from Russia. Juliana is one of the younger ones. And they are all wonderful children.
In 2007 when Juliana was barely five years old, she was diagnosed with cancer. I can not imagine my child being diagnosed with cancer much less at the age of five. Juliana is now I believe 14 and she has battled cancer seven times through these past 9 years and has had many treatments and surgeries. She is such a warrior child and I love her strong attitude.
video from John Carver
They thought they were cancer free at the end of 2015 but it did not work out that way and so the battle goes on. Only now, the doctors told her parents that the cure might be a bone marrow transplant. This is how loving these parents are. They knew it had to be a blood relative that donated the bone marrow. They had adopted her older sister but she was not a match. And so John went looking for Juliana’s real mother and they found her. They are always right there with her through each medical thing.
image from Angels For Juliana
image from Angels For Juliana
The birth mother flew over to the bone marrow donation and while she was here they learned that she had a very rough life and because she was working so hard to care for her parents and her children, she left them with her mother. Her mother had some serious problems and the children got taken away and the mother did not know where they were. The Carvers paid for her to fly to America and donated the bone marrow only with the cancer back, the bone marrow transplant had to be put off for the second time. And this is where they are now.
Two Mothers–One Mission
video from John Carver
This is the post they made about the transplant being postponed:
“Thursday April 7, 2016 7 Juliana goes back to Johns Hopkins for a blood and platelet transfusion. ALL her 120+ transfusions have been done at Sinai Hospital in Baltimore Maryland since 2007 so this will be the first time she’s received transfusions at Johns Hopkins Hospital.
Friday, Juliana has Hickman lines put in her chest (again) in preparation for the bone marrow transplant. She had Hickman lines when she had cancer the 3rd time. Friday afternoon she, also, goes to the Radiology dept to get set up for 5 new radiation treatments. As I understand it she will be getting 5 radiation treatments starting on or hopefully before April 14. That puts us up to about April 20.”
I am writing about them because I know they need some help. People sent many presents for all the kids but with all this happening again, they asked people instead of sending gifts if they could, would they send gift cards for gas and food places to eat as they have to travel back and forth to the hospital. Caseycares.org was kind enough to give them tickets to the Aquarium there for all of them including the kids. It was a nice break for them from the hospital.
So, if anyone is interested in helping them, here is their PO Box.
P.O. Box 39
Manchester MD 21102
Here are links you can watch to see the story of Juliana and her cancer journey.
If you click on the You-tube link, on the right hand side of the page you will see many other vlogs about Juliana and what is going on. Also her Facebook page is located here and they welcome any and all prayers and support.: https://www.facebook.com/Angels-For-Juliana-250289225091998/?fref=ts
I laid here today thinking about all the hate that seems to be in the world today. You can not go on the newspaper sites, on social media sites, any site without seeing it. Our world is being taken over with hate and anger which accomplishes nothing. Only in calmness can we accomplish anything. And remember how important forgiveness is. Forgiveness is for our hearts not the one who wronged us.
I do not call myself by any party name for I am ashamed of what I see in the politics of late. I call myself an American. We really have to stop being complacent and saying that is just how it is for it is not working. We need to hold our leaders be accountable and we need to set the tone for what we as Americans accept and that is a tone of compassion and love and of caring about the people of this country. If we are cynical, filled with anger and hate, then we are teaching our children and those around us to be that way when they grow up.
I remember growing up in racially tense times in the sixties and remember hearing over and over that only we could change the prejudice and anger by changing what we do and what we teach our children. I wonder if it is time that the American people start infusing love into this world and work to regain what we once had. Is it time to bring back respect, and honor and trust and most of all understanding.
Part of this song below says “when we stand together it’s our finest hour” and how true that is. Look at what this country did after 9-11 when we came together as one. Politicians put aside all the ugliness and joined with each other to help this country heal. People came together and there was none of this division for we were standing for our country as one and not as this section and that section.
video by EmoNinjaVampireWolf
But somewhere along the way..the past few years, that has all changed and I see so many people who are so angry and filled with such hate and only want for themselves. I hear comments mocking helping those in need, helping animals, helping people who are starving in other parts of the world. And all I hear is people who look for something to be offended over.
So, I wonder if we can replace the hate with love and bring back the love for our country and for each other. I wonder can we once again swing the tide back to a country that is “for the people”? This is our country and in spite of all that is going on, I am proud to be an American. I love my country. I am ashamed of those running it and of all the fighting and bickering and racial tensions that I thought we left behind from the past. Is it possible for Americans to take back the country and infuse love and respect for each other in the atmosphere? Can we repeat our “finest hour”?
If you could take one step to help our country become more unified, what would it be? One of my older than dirt lessons in life has been that we can not go out and change the whole world by ourselves. We must change our corner of the world and if everyone is doing that, then the whole world will be better.
One of the biggest lessons I learned in life being disabled and sick is that I have certain choices. Yes, things happen that are out of my control but I still have the choice in how I handle those things. And so I rely on the victim and survivor/warrior philosophy. I am a warrior and a survivor. Warriors/survivors are the ones that look for the solutions. Victims are the ones that are constantly bringing up all that is wrong and whining about it. They never once try to find a solution because they are comfortable complaining about all that is wrong. So, be a warrior/survivor and look for choices to make life and our country better.
image from https://www.facebook.com/jennifer.styers
When I saw this, I thought oh my, what awesome words. I have always tried to be honest with those I love and so if any of the people I know have gotten mad because I was honest with you, please remember this. I had enough love and belief in you to be honest with you and I believed that you were person enough to handle it. That is a lot of love. See, I believe that when you lie you are telling the person you lie to that they are not worth the truth. The truth does not have to be harsh or ugly. It can be gentle.
Do not let fear make you be someone who lies or who will not answer truthfully when asked. If someone gets mad and will not speak to you because you told the truth, then that tells you something about the other person. I also believe that when we avoid standing up for what is right and speaking the truth, we are complacent. And being complacent makes us complicit. Honesty will set you free. I think that is one thing that bothers me during election time. All the lies told from so many directions. Does it bother you that politicians think you are not worth the truth?
And when we get mad because someone loves us enough to be honest with us, we need to ask ourselves these questions. Are we mad at the honesty or the fact that someone dared to tell us the truth even when it was telling us what we were doing was wrong? That is a pretty tough question is it not? Are we mad because we are like the child who got caught with the hand in the cookie jar and now others will know or are we mad because we do not like honesty.
I believe the best gift I can give those I love is honesty for then there is no confusion, no middle ground, nothing except the truth between us. I had a friend back east some years back who was going to pretend to be having a fling with a friend of her boyfriends to make him jealous. I told her I thought she was wrong, that it was deceptive and it would really mess up her relationship. She got mad because I would not support her in this and help and she quit speaking to me. She also lost her boyfriend because someone else told him the truth after a long time and he told his girlfriend that he could not stand liars and manipulators.
I loved her enough to tell her the truth knowing full well that the friendship might end. But, I could not keep a friendship based on fake or lies or anything else. I still love her. If we really love someone, we are honest. We do not agree just because we do not want them mad, or we want to be liked or any other reason. We agree when we believe it to be right and only then. I had someone tell me a while back that if you disagreed with what a friend was doing then you were not a friend and no way could you love them. I said you know what, I disagree with things my sons do and I love them dearly and they disagree with things I do and they still love me. That is part of life and love.
Being truthful does not mean you have to be a bad ass bitch about it. It means telling someone the truth in as gentle a way as possible. Sometimes it means saying absolutely I will not go along with that. And sometimes, it means walking away. But, if you can not be truthful with those you love, then how can you be truthful with yourself? My sons know I have not always agreed with things they have done and they have not always agreed with things I have done, but we have always loved each other. When you lie to a friend or loved one, you tell them that they are not worth the truth.
There was a time, when I felt like life was under our control. And then one day on one of those days where I felt like I was trying to move the mountain, I started feeling like I was running against the wind. It was that day that I realized that there really is very little we are controlling in our lives. We just think we are. In reality, the only thing we can really control is how we react to what happens to us.
video from BobSegerChannel
(I take no credit for this video. It is strictly for educational purpose on the content of my blog.)
It is then that I realize that when you have to beat your head against a brick wall, constantly fight to do what you want and feel like you are constantly running against the wind, that perhaps you are trying to change the flow of your life in a way that was not meant to be.
I believe that the Creator watches us sometimes and must smile, just like we do as parents when we watch our children try to put one of those little wooden star, circle, square and rectangle dowel shaped things in the hole and when it does not fit, we will see our child pick up the hammer and try to beat it in to fit. It is those days we feel like we are fighting a constant battle.
Now, do not misunderstand me. I think the good things in life are worth working for, but I think when we come to the point that we are beating our heads against the wall ALL the time to get to where we want or to get something we want, than we are trying to force the glass slipper on like the ugly stepsister did in Cinderella. We are trying to force that which does not fit. I have learned that sometimes what we wish for is just not meant to be. That is not to say do not try. The wisdom I learned was that if we have to force something even if we manage to “get the glass slipper on”, it will pinch and hurt and not feel right afterwards.
So, how do we know when we are trying to force that which does not fit? I love this quote below for it gives the first hint of what I have learned. How do we know? The answer is by how long we keep beating our heads against the wall.
image from www.rodneybrace.com
If we find ourselves month after month after month pushing and battling to get what we want, if we find ourselves never making any headway, then perhaps it is time to stop and feel the wind. It is time to feel the current again and see if it was trying to lead us into a direction that is even better. All good things take sacrifice but we have to learn the difference in sacrifice and beating ourselves in the head for something that is not meant to be. And that is a hard lesson for several reasons. One is learning how to know when we are trying to make something happen or make someone love us that is not meant to be. The other part is that we are “self” people by nature and some of us have the “I Want” gene a lot stronger than others and do not know that not all we want is good for us.
I learned this with working our dreams. It took us two years to sell our house and I will have to admit that I was getting to the point at the end that I wondered was I trying to force something that was not meant to happen. As long as I felt happy and excited and it felt right with this decision to sell, then I knew that we were headed in the right direction. But there were a few times at the end that I felt that despair and defeat. It was then, I asked the Creator to please show me and to please tell me was it time to let it go or were we supposed to do this move. And every time I asked, that very day it never failed we would get a call and someone wanted to see the house. That one little sign told me to give it a little more time. And we sold our house and here we are.
“You are not the momentary whim of a careless creator experimenting in the laboratory of life…You were made with a purpose.”
Og Mandino in “The Greatest Miracle in the World”
image from lisamhloyi.wordpress.com
I read a blog where the person was saying they hated to hear people say that chronically ill people should not let their illnesses define them. And a few agreed with the person’s rant. As the person talked about how, when they were healthy, they prided themselves on being fit and exercising, on looking pretty, on being smart and talented and how they hated how they were now. They said that they hated they were sick. And the person went on to say that everyone should be able to know that they were chronically ill and know that they were chronically tired and could not do things anymore. It was almost like they wanted to put a name tag that said their name and then in bold letters stated “CHRONICALLY ILL”.
The person in this blog that I randomly ran across on another blogging site was defining herself and judging herself by what she used to be and so she felt that now she was inferior. And all I could think was “Is that all you think you are worth?” Do you think the only things that make you worthy are your looks, your muscles and being able to jog, your hair, your work ability, etc. And she and about five other people truly resented anyone saying that we should not let ourselves be defined by our illnesses. I personally believe that we have to learn to love our imperfect selves.
Boy, they would hate me because I do believe that we are more than our illnesses. I am Deb….What I am is disabled and chronically ill but who I am is what I choose to be inside. My name is not disabled. It is not chronically ill. It is not COPD, Fibromyalgia, Neuropathy, Sarcoidosis, Seizure Disorder, Hypertensive Heart Disease, Blood Clotting Disorder, Cystic Lung Disease, Kidney Disease, GERD, IBS, Degenerative Disc Disease or Joint disease, Spinal Stenosis, Osteoporosis, Osteopenia, Osteoarthritis, Chronic Fatigue, Autoimmune disorder, pernicious anemia, Lipidemia, Thyroid Disease, or any of the other things I have wrong. My name is Deb and yes, I am disabled and I am chronically ill with all those things wrong and many more but they are what is wrong with me and not the person I am.
Sometimes I think people who are chronically ill can let themselves become cloaked with their illnesses and almost wear them like a badge. And that is a cloak that can get very heavy after a while as they keep attaching more and more importance to what is wrong instead of what is right. Perhaps this is why I have survived as well as I have because I do not focus on all that is wrong. As I have said before, I leave dying up to God and I focus on living. I focus on the good in each day. I live, even with the really bad days, with hope in my heart that the next hour or day will be better. I refuse to let what is wrong consume me and keep me from living life. Remember victims focus on all that is wrong. Survivors focus on solutions.
I have learned through my older than dirt years that some people can allow their illness(es) to take their lives from them and there is no room for anything else. While I may read about new approaches to the things wrong with me, I would venture to guess that I spend less than two hours or less in a day concentrating on what is wrong with me and that includes such things as taking meds, breathing treatments, etc. If I cloaked myself with a badge of Chronically Ill, I would be spending every minute of every day tied up in illness.
My days are filled with writing, family, talking to friends,photography, dreaming and remembering wonderful things, laughter, my sons and granddaughter and most of all love. And most of my day is spent on this hospital bed in one room. And yet, when asked, I can honestly tell people that my life is very full and very happy in spite of all theses things. Yes, I have days and sometimes weeks where I am having to make trip after trip to the doctors or hospital but I still rely on my ability to distract myself from the medical like taking photographs as we ride up or in the hospital. I have learned to love my imperfect self and learned that just because life has changed and become different for me, that different is not necessarily bad.
And I think the difference is that I believe that what makes me Deb is more than my ability to walk which I lost, more than my ability to work which I have not been able to do in over twenty years, more than my ability to keep physically in shape which is a dream long gone, more than my ability to go out and visit people which is impossible for me now, or more than how pretty I look or how much I can dress up or any of the things I lost when I became so ill. If that is all that makes me worth while, then I must be worth a big fat zero right now. And I do not think so.
I refuse to give up or give in. I smile a lot and have had doctors say “Wow, you do not look like you are hurting that bad because you are smiling.” And I tell them that it is a choice. And then later, they will ask me how I stood so much pain because of what was wrong like the severe stenosis from head to tail, the neuropathy, the torn rotator cuff, the collar-bone out-of-place and ribs out-of-place, etc from falling. I choose to smile and be happy. It did not take my pain specialist long to learn just how severe my pain was and that it was debilitating and I did not have to tell him. I did not have to act like I was miserable and dying of pain. He could see it in how I handled my pain and it makes me feel really good that he admires my attitude and my determination.
I can not go places to visit people or do things outside like my flowers and so I had to learn a new way. Now, friends, even those chronically ill but still able to get out and do things, take me with them via camera. A dear friend in the UK took me to the beach there and walked me..by camera..into the water. That was such a wonderful thing. She shares photos of all her travels with me.
Another dear friend takes me places by camera as she traveled. She also takes me to the beach and walks out into the water so that I can hear it and see it and feel it in my heart. And boy does that make me smile. I can not go visiting and so I visit by Skype and it is like having them in the room with me. I have my red high heels and my leopard cape and I can feel quite classy and entertain here from this bed and be happy.
A friend in Italy and I were talking about this one other day how some people let their illnesses consume them and then some are like I am and have accepted what is wrong and find new ways to find the joy in living.. Those closest to me know that the more I joke, the harder I am fighting. It is my MOJO and my way of living with chronic illness. My value does not lie in what I can not do or how I look. It lies in what is in my heart and my head and in my actions. The diseases do not make us who we are rather it is what we do with the illnesses that make us worthy. If your choices are not working and you are miserable, then make different choices. That is the right we all have.
Someone told me once that I made being chronically ill look easy because I seemed happy. I told them to not be fooled into believing that it was easy. If a person starts having limitations or illnesses and finds themselves miserable but are still able to go out, to be about and around in their house, and while limited…can still function in life and take care of themselves but are miserable because of those limitations that they have now, they would be dying in misery if they were as sick as I am.
When you get this ill, you lose control of your life to others who come in to help you. Your privacy is invaded by helpers who help you bathe or wash your hair or help you dress or fix your food or fix your meds. It is my choices that makes it look easy. My choices to choose happiness over bitterness and sadness about my illnesses and the things I have lost.
And I have had some tell me how bad life is and they just can not find a way to be happy and feel worthwhile. They tell me that they just sit there in their misery and I ask them “How is that working for you? Evidently it is not working too well if you are sitting there in misery. If you do not like the choices you are making, make new choices.”
We are all victims when chronic illness hits but we do not have to stay victims. We can choose to become survivors (and even thrivers) in that we survive emotionally. No matter how much chronic illness takes from us physically, it does not have to rob us of our joy and happiness in life. It does not have to rob from us emotionally. See, I view life through the end of the binoculars that makes everything look big and beautiful. Some view it through the end that makes the world look small and bleak. Just change ends.
We have to learn to love our imperfect selves because no one is perfect. And if we do not love ourselves, then how can we expect others to? The people you see that you resent because they are healthy and well, may not be as healthy and well emotionally as you think or may be struggling with financial crises that you know nothing about. No one is perfect. Love your imperfect self and make choices that bring you joy not misery.