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.
I believe that there is an eternal connection that all living things have in this world and that we have with mother nature. All living things have a connection because we are alive and we depend on each other for different things. But, I believe there is an even deeper connection…a spiritual connection that joins us in a special way. We can not live without water or oxygen or food and plants and animals need the same type of things. But, we also can not live without that connection on the spirit level.
The old ones predicted what is happening in our world today and all the changes. We have lost our connection to the earth. We come from the earth and yet now we abuse and mistreat the earth and the animals there. And many mistreat the people here. The connection is broken and people do not see the value of life, of the living, of the world and the forces there in. I consider water a moving force and the wind as they are both moving things that our Creator put here. There is a quote that says a country can be judged by how they treat their animals and I have yet to see a country that passes this test. The Native Americans predicted the shape the world is in a long time ago and if we do not find our way back, the world will die on us.
I love sitting in malls or in the park and watching the people there but the last few years what I saw was so few that were actually happy. I saw people disconnected, people with walls up and people with agendas. I saw people who never saw anything good in their world, who spoke with words of negativity constantly and who had narrowed their world to this small square of angst, hurt, anger, pain, sorrow and isolation. People sit next to each other and do not even speak to each other. The connection is broken.
“As children and adults get sucked into cyberspace more and more each day, there is a growing disconnect with the natural world — a trend that is alarmingly negative. We as a species depend on the ecosystem services of the ecosphere. As much as some of us might believe, we do not depend on Facebook, Twitter, Google Plus, television or online gaming to keep us alive.” Jeff Sayre
Somehow, some way we have lost the knowledge that we depend on, the earth, the ecosystem and the spiritual connection and we seem to keep mutilating it. Not a day goes by that we do not read of animals being tortured, mistreated and killed. Not a day goes by that we do not read of some place in the world where due to “technological advancements” we have screwed up the environment and mother nature is rebelling against us with storms and floods and other natural disasters. The connection is broken.
And on personal level, families are broken apart, children are abandoned, babies are killed, families do not speak, abuse happens, and with cyberspace, we are isolating ourselves more and more as if we think this earth can live on if we never see nature again. There is a connection that comes from knowing we are all from this earth and all from one huge family and that connection is broken. And yet, here we are with our faces in computers and I-Phones and no real face to face connection.
I hear people say they never speak to this person or families that never speak again, friends that were so close that quit speaking and this connection broken is the saddest to me. For the consequences are so damaging. We as a culture have lost the ability to listen. We are so busy talking and trying to prove we are right that we never hear what the other person is saying to us. And so, the connection remains broken.
“If we continue to move mentally and emotionally farther away from those systems on which we truly depend, then we will fail to appreciate our intimate dependence on and connection to the rest of the world. Our existence may be enriched and extended by our artificial creations, by our technologies, but we must not forget that we are part of a larger Web, we are part of the original Web – the Web of Life.”
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”
I use many things to help me through the pain filled days. Visualization is one of those things. So, let me take you on one of my visualization times when the pain is making just breathing hard. Come fly with me for this is what I see when I close my eyes and all the pain vanishes for a brief period of time.
image from http://faithgraceandjoy.blogspot.com
On The Wings Of An Eagle
Standing ready, she closes her eyes listening for the sound
She raises arms to the heavens as she edges forward til her toes curl round
The moon beats down upon her face and the glow warms her from within
She lets her eyes follow the mountains as they curve around the bend
She is barefoot in splendid wonder, her cotton gown clinging to her knees
The whiteness of the cotton gown slowly rippling like fog amongst the trees
Her hair flows like dark rivers over her shoulders in layers of earthy brown
There is no fear within her as she again raises her face listening for the sound
The moon,a glowing beacon, had risen from the treeline like a goddess in the sky
She had heard her softly say “come darling, follow me, it is once again time to fly
She found herself walking on legs long since withered and broken as she rose to obey
she felt no pain or weakness as the moons glow wound round her legs in soothing play
She grew excited with anticipation for she had heard the call many times before
Silently moving through the house until she finally reached the exit door
Her breathing was shallow and a smile upon her lips as she quietly eased outside
She stood looking to the moon nodding she was coming, as the door left open wide
Now, she stood with toes curled upon the ledge and her arms raised ready to fly
Not one drop of fear around, she waited only for that sound of the familiar cry
She hears them in the distance, the echo of eagle’s cries float into her ears
She raises up on tiptoes, with arms open wide and steps off the cliff with no fear
Falling downward she smiles for she knows the softness of the landing will be sweet
When her body sinks into the familiar softness and she feels the heart begin to beat
She nuzzles her face in closer and lays there in silent wonder cheek to cheek
The power of the beating wings fill her heart leaving her breathless and weak
Looking down she sees the meadow illuminated with the glow of the moon
The animals are scurrying around as if making a magical nature tune
She watches with delight perched high up in the sky as the world flies by
And in breathless wonder, her heart skips a beat as a tear falls from her eye
She closes her eyes for a moment, sighs in deep content with a smile upon her lips
Feeling the power of this body as they make turns and dips and flips
she realizes the gift she is given when she stands on the edge waiting for the sound
As she stands looking with arms raised to the sky, just waiting to be found
He gently sets her back upon the earth as his wing touches her face tenderly
And she sees the gentleness in his eyes that is only there for her heart to see
She feels him say as he looks at her that he will return again, to wait for the moon
The moon will let her know the time and she will return to the cliff very soon
Few can see with the eye of the eagle or soar across mountain tops touched by snow
She used to ask him why she was picked but he told her it was not for her to know
All she needed to know was to come when the moon told her it that it was time to fly
She could hear the echo of hooves, feel the warriors near as he lifted her to the sky
And as she lay on the softness of feathers and caressed his beautiful head in love
Some could only feel his beauty through the thickness of a leather glove
She knew it was a gift she was given to ride in splendid wonder in the sky so high
And feel the presence of heaven so close that the beauty made her heart cry
Now, as not all my readers are southerners, some may not understand what whitewash is and why I say it can be a problem. White wash is “A solution made up of lime and water, used for painting picket fences, walls, etc”. You can just “slop” it on the fence and it covers up the grunge and flaws pretty well.
image from doug-johnson.squarespace.com
In life, I call such things as denying what going on in life, covering up things we do not want others to know and sometimes making light of serious situations as whitewash. People whitewash all the time but when it becomes a way of life, then it can be very detrimental to us. The problem with whitewashing is that it does not fully cover the dirt and after time it bleeds through again and again and you have to keep whitewashing the fence.
Before anyone starts, whitewashing has nothing to do with race. It is how we in the south kept those picket fences and sometimes outbuildings looking fresh. You would have this big bucket of white liquid and a big paint brush and you would “slop” it on the fence. What got on the grass would wash off with the rains.
Snow reminds me of whitewash. It can cover all the dirt and grime and make the ugliest house look beautiful. I have watched people do that through the years and deny things like an alcoholic son, being in financial ruin, abuse, an affair, loss of a child, etc. It does not solve the problem but makes things look pretty on the outside.
Let me tell you, that in the old days, southerners especially southern women were proficient at whitewashing their lives. As far back as plantation days, the women of the mansion would whitewash that their husbands were going into the slave quarters and having sex with the female slaves. And sometimes it resulted in a child. But, when they came home, the wives put on that Stepford wives face and acted like nothing happened at all. They would deny that their husbands were having an affair with the neighbor’s wife and even invite her to dinner parties and act like nothing was going on. Boy, talk about some whitewashing going on.
When I was coming up, abuse was whitewashed by the families, by the social services, by the doctors, the churches and just about anyone that should have helped to stop it. They just snowed all over that and made it look pretty and as if nothing happened. Long sleeve shirts covered bruises, keeping children at home hid trauma, telling the children to get a smile on their faces and to never tell what happened is some whitewashing at it’s best. The most perfect home with the perfect children and perfect parents could be a house of hell for children. Just some statistics:
That is a lot of whitewashing, is it not? In the time it takes you to read this blog, we will say three minutes…18 children will have been reported as being abused. Think about how many are reported in 24 hours. That is way too much whitewash to cover up and people are finally doing something about it. People are getting rid off the whitewash and bringing it into the public view.
Animal abuse has been whitewashed and the poor animals have suffered. I am talking both domestic and wild animals. They have been tortured, misused and abused and it has been whitewashed for years. The good news is that advocacy groups are now speaking out and making it public. They are looking for solutions to the problem.
Now, how about our own lives. How many things do we whitewash? Do we whitewash that we are unhappy in our lives? Do we whitewash that we are being abused? Do we whitewash our feelings and pretend we are fine when we are hurt, angry, sad or whatever emotion we feel is too bad to let the world know we feel that way? Do we whitewash that we are financially in ruins and just living like we still have money? Do we whitewash our illnesses and how bad we really are?
Whitewashing is pretending that our lives are just fine and nothing is wrong. And like the snow…eventually the truth will come through. Whitewashing things in our lives is a choice and once we start doing it, we continue to do it and use it as a way of dealing with painful emotions. We fear being ridiculed, abandoned, embarrassed, judged, etc.
This is some good ole danLrene older than dirt wisdom. I learned these things through my many years of hard life. First, we have to learn to accept ourselves as we are. I look in the mirror and I see myself…I see the gray hairs, the lines on my face and I see that I am getting older and can not do a lot of things. Took me a long time to accept that but I do and I am ok with myself. So, first comes acceptance of ourselves just as we are.
Second comes putting the brakes on how much we let the opinions of others influence us or determine who and what we are. As long as WE know who and what we are and are ok with it, then it really does not matter what those “out there” think. Until we learn to live with ourselves by ourselves, we will never learn to live with other people. And I have learned that when others judge so harshly, they are only speaking what they know from their own lives and are dealing with but it is easier to point it out to someone else. Keep on being the person that is accepting of yourself, believing in yourself and showing your true inner integrity and feelings and others will soon see you as you do.
And last but most definitely, do NOT minimize or whitewash problems. They are still there when the whitewash starts to fade. Whitewashing problems is like trying to drink your problems away. Instead of whitewashing, step up to the plate and do something about it. If you have a problem, get help. If you have someone you love with a drinking or drug problem, step up to the plate and confront them and let them know you love them but you will no longer cover for them but you will help them get help. YES, it hurts to do that but it is either that or spend your life whitewashing everything in sight and that is an exhausting job.
There is no greater joy than learning how to help yourself, learning how to deal with and accept things from the past so that you can move on, learning that having a sister, brother, father, etc that is an alcoholic is not because of you. It is their problem and hiding it from the world does not help you or them. Standing beside those you love is not the same thing as fighting to deny the obvious problems in our lives.
And remember, the fear of what others think or will say about you is like me calling you a garage. It does not make you one. Everyone has problems in life and no one is immune to these problems. Hopefully one day we can turn to each other and be ourselves instead of whitewashing and people will be ready to reach out to help us instead of shoving us further down in the hole. I truly believe this is why there is so much anger and hatred in the world. You can only whitewash for so long before it starts to boil over.
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.
Times are horrible economically all over. People have lost jobs, lost homes and more. And yet, at times people have a hard time admitting that life is different. Son and I saw a few years ago this coming. We were lucky that we did and we started paying off bills we owed and trying to get down to basics. And we managed to get where we are, in a much smaller house that was a repossessed home that needed repairs. But, we had exactly enough from the sale of the other house that we could afford to buy this house.
We have become a country of over extended credit card families. When we look back at our ancestors who, if the money was not there, then they did not buy. Then look at today and we see people with credit card debts and loans of ten, twenty and thirty thousand dollars and more. Few people plan for an emergency such as losing a job. When son was laid off a couple of years ago, had we not already been working on this contingency plan and had already put our house up for sale, we would have lost everything. We were late in planning for something like this but did at least have a head start on it and were able to get where we are now.
The truth is, many people live what I call “entitlement” lives and that has nothing to do with race. They over extend because they believe they are entitled to have this or that or go here or there and get in way over their heads and do not see past today. The most important thing should be keeping family together even if it means giving up things. I am sure by now, I have some people gasping and thinking I can not live without my I-phone, I can not live without two cars, I can not live without being in this big house or the fancy clothes or eating out all the time. And the truth is YES, you can. It is a matter of deciding what is important.
Son and I decided that the most important thing was family and being together no matter what size house, how many cars, what kind of cell phone or how many times we eat out or if we have Niki shoes or any other name brand. We are on a pay as you go cell phone plan and seldom use it. We moved to a smaller, less expensive house. We moved to a small town where there is less driving. We seldom eat out if ever. We are just very conservative and conscious of what we spend because we wanted a less stress filled life and being better financially helped in that department.
The truth is we have to be in charge of our lives and that includes how we spend and the risks we place ourselves in. The economy is not solvent and we can not be assured of tomorrow. No one can. So, we have to prepare for that by cutting back, by not spending unnecessarily, by conserving where we can, and by not over extending. And that includes having an emergency fund that is put away not to be touched.
Many think their children will not be happy without all the fancy things on the market now and the truth is, I was a single parent with limited money and had two sons that I was raising and we had very happy times. We made our fun at home and we did family things together for entertainment. Children can be happy without all the I-phones, designer clothes, fancy electronic equipment, etc. It is all a matter of choice and what you teach your child is is how they will respond to economic crisis that are occurring and keep occurring. Make a choice to look at finances, look to see what you would do if one of you got sick and you had to have a big amount of money to get tested or see the doctor or what you would do if you car broke down. I can assure you that having a plan will lessen your stress in an already stressful world.