She has been sick since becoming a teen and is about 22 right now. She is bedridden and yet she keeps fighting for awareness for the chronically ill.
Today she has challenged everyone chronically ill to put a smile selfie on their social media…Facebook, Twitter, Instagram, Tumblr, etc with the hashtag #asmileforasmile to bring awareness to the chronically ill. Also nominate people you know that are chronically ill to do the same.
I so admire her fighting spirit and she is a true warrior and in spite of some severe seizures the past few weeks is still advocating for all of us. This is Jess’s selfie smile. Jess suffers from ME/CFS and like most chronic illnesses Me/CFS is very misunderstood. The chronically ill are often misunderstood. Awareness is greatly needed.
And here is my smile selfie. I have multiple health issues ranging from CFS, Fibro, Sjorgens, COPD, Sarcoidosis and multiple arthritis’s which most who read my blog know and I am mostly bed-bound like Jessica in a hospital bed.
So here is the challenge to all who are chronically ill, have an auto immune disorder, etc. Please post on YOUR social media sites…all of them…a self smile photo with the hashtag #asmileforasmile and tell why you are posting about Jess’s challenge.. Can we light up social media and become trending?
I read this quote yesterday and have thought about it since then. Sometimes we want our blessings or wishes to come like we want them and we miss them because they are not in the form we want. I can remember a friend who so desperately wanted to find a man who loved her and would treat her good. But, she had this precise image of how she wanted him to be that when the man came along, she missed him because he was a little shorter than her. And I know from how he was around her that he would have treated her with such love and respect and would have treasured her for the rest of her life.
I remember when we moved to this tiny town and we wanted a house in the country only we had a hard time finding one we could afford. This little house was on the market and we came and looked at it but really did not want it. It was a house that was repossessed and it was nothing like what we wanted and we did not see that a blessing was coming in this house. Thankfully, our inability to see the blessing did not keep us from getting the house and cheap enough that we could pay for it with the little money we got from our last house. And what a blessing to be in a house we own that was on the outskirts of the tiny town so like in the country and had three lots with it. We can sit on our patio and watch the sun set and see the beautiful sky and listen to the birds singing.
People look at me strange when I say my disabilities are a blessing but they are. They are a blessing in that they allowed me to be able to view the world with different eyes, with more compassion and love and to understand those struggling easier. This blessing definitely came in a package I did not want but one that I just seemed to accept and it changed my life.
How many blessings have you turned away because they did not come wrapped like you wanted? How many people have you pushed away because they did not come wrapped like you wanted? Accepting the blessings means accepting them in the manner in which God sends them and I learned the hard way how valuable that was. Now, when things do not seem like what I was wanting, I stop myself and say “is this a blessing in disguise”.
image by meetville.com
What The Old Ones Know
Patinas, silvers and faded browns
dimming lights and diminishing sounds
Creaking hinges and crooked doors
gnarly feet on wooden floors
Robbers enter to steal our health
a possession far greater than any wealth
Strength wanes likes the ocean tides
making life turn into bumpy rides
Minds can defeat us on crimson rose
stopping the rise on warrior toes
Defeat looks like hedge roses so bright
lovely to smell and looks so right
A warrior knows what lurks deep inside
all the thorns the lovely roses can hide
The thorns of weakness, self-pity and blame
being a warrior is not playing a game
Being a warrior means choosing to fight
and choosing to see the happiness light
The elders know the pain and sorrow of life
they know it can slice like the blade of a knife
Must you become patina, silver and faded browns
before you know where happiness can be found?
Part of the joy from fulfilling dreams lies in the dreaming of them. We take them apart piece by piece trying to make the dream work. We anticipate what is going to happen and we work for the dream. The truth is some dreams never manage to come true but we still can have much joy dreaming the dreams.
Dreaming gives us this wonderful feeling inside and fills us with hope for the future and hope is such an important thing to have in life. No matter how bad it gets, the hope that this dream will come true can carry us through.
Remember all those dreams you have, they are YOUR dreams and you have the right to dream them, to work for them and to have them come true. We dreamed of moving out here to the mountains for over a year or so before we got here. We worked hard and we believed so much in this dream that we started packing and working towards it. Same way to our move here to this tiny town. We dreamed this for over two y ears and finally made it.
Always hold tight to those dreams. Just remember that seldom do dreams just fall into your lap. You have to work for them. And the joy is beyond words when the dream comes true. The nice thing about dreams is no matter your age, circumstances or whatever….you can always dream.
image from secretsofthedisabled.tumblr.com
The Last Dance
With wisps of hair across her beautiful face
Tears on her cheeks your finger could trace
She stood there with head bowed in humble prayer
Feeling as if she were the only one that cared
She closed her eyes and listened once more
To the music that always drew her to the door
The music rose in tempo and sound
She knew her time was coming around
Was her dream to dance just one last dance
And she knew tonight was her only chance
Rising on toes, she danced across the stage
Her body tensing up for the very next page
As she jumped to twirl up in the air
She suddenly felt his hands right there
He lifted her higher than she had ever flown
And twirled and danced better than she had ever known
He molded himself to her as if one
And remained there lifting her until the dance was done
The applause thundered and echoed around the room
And she felt as if life had just started to bloom
As the sounds died down, she smiled with tears
Not being able to dance was one of her fears
Then she opened her eyes and looked around
Oxygen hoses and hospital beds are what she found
As she glanced down she saw her toes pointed down
And she knew only her attitude kept her bed bound
No matter what happened she could dance so free
She just had to close her eyes and the stage she would see
image from commoncorrelations.wordpress.com
Life is filled with so many things and many of these things end up being overlooked or taken for granted because they seem to be hidden from our view. And yet, some of these hidden things are more important than many things in life. We live in a very “me…me…me” world and people focus on themselves at this point and time more than I have ever seen it. So many people do not want to view the realities around the world or even in our own country and so the invisible things disappear even more, the tensions rise even higher and the country and the world stand on the ledge of destruction.
Poverty is one of those things overlooked by many. I heard one person say that if it did not affect them, they did not care about it. I am realistic enough to know we can not save the world but we can help those in our own little circle of the world. As I write this blog, each day about 21,000 people die in the world from starvation and poverty. One of those hidden things in our lives but not so hidden for those in need of food and help. Had I not looked, I would not even know that number and that is one area I try to focus on…helping others in need of food and clothing, etc.
The chronically ill and disabled are often part of the hidden things in the world. Of course, being chronically ill and disabled myself, this is an area of importance to me. The world tends to show a blind eye in so many ways. Many places, even though they are supposed to be, are not handicapped accessible. Personally, I think all homes should have a handicap entrance. But, because it is a hidden thing, people do not think when they buy their houses of those that might not can come see them due to their disability or illness. Nor, do they think that one day they may need a handicapped entrance. And it makes the disabled and chronically ill people’s world so much smaller because of this overlooking them. Yes, there are advocates for people like me but sometimes the work is too difficult for us to fight to be seen.
Abuse is another area in our lives that is often overlooked and hidden. People will turn a blind eye because they do not want to be involved and so the abuse keeps happening and it is right there in plain view but hidden because it is overlooked. I do not like to get involved in other people’s lives but when it comes to abuse of any kind…children, elderly, disabled or chronically ill or even pets…I will report it and I will try to stop it.
Another area in the world that is hidden is the loneliness of so many people. I am blessed to be living with my son and I have my sweet Daisy who also keeps me company. But, there are many people in this world who live alone, who are elderly or who are disabled or chronically ill and have no one to show them love, care and kindness. We may realize that this person or that person we see appears to have no one, but do we make the effort to go visit them? My son not only takes care of me, he goes to help a couple of the elderly women in our church and takes them shopping or gives them rides or picks up things for them. There are so many who just want someone to care, to listen to them and to help them when things are really tough.
I was watching videos about JFK and although I did not agree with all he did, I was inspired by how he and his brother RFK cared about people in need, cared about those living in poverty and the racial disparity. JFK started the Peace Corps to help other countries and worked here in our own country to try to help in other areas. But, since that time, it has become an emotional war zone and everyone is arguing not helping. And so the things I mentioned earlier in this blog get overlooked.
I see so much division and that is one thing that is not invisible. When I see a picture of a group of people of one race holding a sign that stays “We stand united” my first thought is that picture should include us all in this country and we should all stand united like we did after 9/11. When the invisible things keep us from seeing the reality, we can not heal. Peace, harmony, strength and all the other great attributes get lost. And when we continue to allow things to remain invisible, we become even more divided and hopes of peace, love, kindness, unity and compassion, fall by the way side. Some things in this world and in this country we can no longer ignore.
Happy Easter Sunday folks. This is my way of sharing the joy of my faith with those around me. I had a friend that I lost a few yeas ago and I miss her a lot. What do I miss the most? I miss how we used to share our faith and traditions with each other. See, she was Jewish and I am Baptist. People today are so afraid of saying Merry Christmas, Happy Easter, etc with others because of all the political correctness that is going on today. People just look for something to get “offended” over instead of just enjoying life.
Audrey and I used to talk a lot about our faiths and we each learned how the other believed. She would wish me Happy Hanukkah and I would wish her a Merry Christmas. I would talk about Resurrection Sunday and she would tell me about Passover. She would tell me of the prayers they did and I would tell her of the meaning of the holiday to my faith. And what a beautiful thing it was.
Today we have become a world of intolerance. If people do not do it exactly like someone else wants, there is a ruckus. People say I am offended if you tell me Happy Easter or talk about Passover. And my take on this is “get over yourself”. This world does not revolve around you. I love learning how others believe and think. Just because I listen and enjoy hearing does not diminish my faith any. In fact it strengthens it.
So, today I share my joy of Easter Sunday known to us as Resurrection Sunday. Why is it called that by our church? It is called that because this is the day we celebrate the resurrection of my Lord and Savior after he was crucified. So, it is a very important holiday to us. You come in our little church and you will see Easter Lilies and flowers everywhere. You will see the communion trays set up and covered and the Sunday School lessons and songs will be about Christ rising from the dead. This is our belief. It does not make our belief any less valid or meaningful to you.
Audrey would explain the prayers and all they did for Passover and the foods they eat. I loved hearing it and on my visit to her a few weeks before she died, I got to see what her church and her faith was like. It was really a wonderful experience. I was so thankful that she and I could share our faith with each other. And it is an experience I have carried with me since she passed away.
We do not have to tear down another person’s faith to build our own up. I think this is why this Resurrection Sunday is so tender to me this year. I see so much anger, hostility, intolerance and just plain down right hate around the world and putting down of others. So, today I offer you a gift from my heart and that gift is sharing the joy of my faith. I hope you will share with someone today the joy of your faith and perhaps memories from your childhood of the faith you had/have.
For me, Resurrection Sunday is about what the song “Because He Lives” says. It all for me….”because He lives…I can face tomorrow”. Wishing you a beautiful day no matter where you live. Love from our home to yours.
All my life I have heard that patience is a virtue and I am sure it is. Just to give you a little background on me before I start writing on this, patience is NOT one of my fortes. Or at least it did not used to be. My constant health problems have helped me learn patience.
My son has dubbed me “Impatience Marie” and I will have to take the title. When I would plant flower seeds, I wanted flowers the next day. And when I had a health crisis such as not being able to use my legs…… well, I want to walk again the next day. So, I definitely am an “impatient Marie”.
Now, having said that, I will say that patience is a virtue. Some people I do believe are born with patience but this is not true for many of us. I think we have to learn how to be patient. There are so many things out the world to attract us and like a kid in the candy shop, we can be so impatient to have them that we do not make the best choices and can end up in debt really quickly. It is much easier to swipe that credit card and yet the cost in interest outweighs the goodness of getting what was wanted right now.
Son and I have learned a great deal of patience these past few years as we simplified our lives, got rid of debt through sacrifice and we continue to hold fast to the money first theory. It took a lot of saving for son to get his Nook, an item he had wanted for over a year. And the look on his face when he got it was worth the wait. And it was paid for with cash. A long time ago that is how people got things. They saved the money and went and bought it. And then, along came credit cards and now most of the country is caught up in debt. Patience can be a life saver. It has been for us.
I think as we age and mature, we begin to understand more what is truly important and we quit wishing our time away for we realize we only have a certain length of time here in this world. Things like family and loved ones become more important than the new TV or other things. Time becomes more important that owning items or going to events.
And so, a certain sense of patience seems to grow in us. Yes, I have had dreams all my life of this and that and then one day I realized that if I never got what I had dreamed of, as long as I had my loved ones and a roof over my head that was all I needed. My impatience for the material things in life waned.
Another area we learned patience in was in spending money. You know, if you are not careful you can go through a lot of money in a hurry. And so we learned to choose wiser and make better decisions. Some things we should act on quicker are things of the heart and of loved ones. Do not wait to let them know how much you love them. Do not put off calling or seeing them for we never know when our time comes. To me that (other than emergencies like fire) is the only time we should forget about patience and just act. Life is too short to wait on the memories, on seeing our loved ones or telling them how much we love them or even spending time with.
Every minute of our lives is spent on survival. Will we survive the 9 months in the womb? Will we survive birth? Will we survive any illness or sickness that comes our way. Will we survive the teen years? Will our marriages survive? Will I survive the loss of my loved one? And the list goes on. We see tee shirts with writing on them that says everything from “I survived the storm of 2015″ to “I survived the forest fires of 2014″. Survival….the name of the game of life.
Some acts of survival need mental strength and some physical strength but I truly believe most require hope and faith. Sometimes survival is purely survival of the fittest and we see that a lot in nature or in deprived countries. Sometimes the survival requires extra help as in doctors or hospitals or caregivers. Normally it requires a plan of some sort to survive. Notice the definition at the top says to live or “exist” in spite of circumstances. I am one of those survivors that wants to do more than just exist and I make a conscious choice to do just that. To me, living includes feeling joy, happiness, love, and progress of some form even it is it second by second.
Son and I survived the financial crash of a few years ago by giving up things, working together to do whatever needed to be done to survive. And I have spent the last 35 years surviving illness, disability and it seems new medical issues happen often that require resilience and determination to survive. I have survived due to making a plan that I follow. The plan does not have to be elaborate. It just needs to be there. And we just need to keep to the plan so that we do not fall off the wagon into despair, sadness or defeat.
My plans are simple and a few steps. I can survive a battle as long as I know what the battle is. Does it mean the battle will not take my life? No, but that is where my faith comes in. I know there is life beyond this world. So, to me, surviving is not allowing whatever the battle is…sickness, pain, loss, etc…to take my happiness from me or to destroy my hope and faith. Happiness is something I control and I am in charge of and that is how I have survived these many years.
I know from my faith that even when I seem to be battling in solitude that I am never alone and I know that no matter what happens to me, I will be alright as I will either be here or the next world. For example, right now, I know what I am battling and so I have plans on how I will fight this battle. I know what things I will do to make it easier, what I can not do and how I will keep my spirits up. It is all about surviving/living and not just existing. We can not always change what happens to us but we can change how we deal with it.
I have always felt older than I was. I think many things can make us older before our time. Sometimes it is that we are allowed to dress and act older than we really are. Sometimes it is the strain of life that makes us seem older for we carry many burdens. Sometimes it is war and being part of that war that makes us age quickly. Sometimes it is chronic illness or disability that does it. And sometimes, it is because one moment in time brought the reality of the universe to you and changed your life.
I think I became old when I was thirty for that is when the health issues began hitting so hard. But, I felt old even before that magical age of 30. I remember being a young teen and people thinking I was grown and having to tell them I was just 14 or 15. At 30, I was trying to raise two beautiful young sons and I loved being their mother so much that I wanted the joy of raising them to go on forever.
I felt as though I had aged twenty years during those first few years of illness but by the time I reached my forties and was on disability, I remember telling my parents that we were going through old age together. My joints ached, I moved slow and I had to learn a new way to live so that I did not get lost in the cracks. That was one kind of old I felt and still feel. The other kind of old was an oldness in life that I just seemed to know. It was not painful or tiring. It was just an awareness beyond my years.
I remember a cousin telling me that when she turned thirty that she quit wearing pants because she was old. I remember laughing to myself when she said that for I was a young mother of two boys that brought laughter to me daily. You know, being chronically ill and disabled young changed my perspective of life but I think I was just born with an old soul. I had this innate ability to see behind the face of people and just know what they were feeling. I had this ability to see beauty in the midst of ruin.
I learned to enjoy the quieter moments with loved ones. I found joy in such simple things as planting flowers or being out in the yard watching the birds. Painting was a release for me as was other types of art. And I took up writing for I loved putting words down on paper in hopes that it would touch someone. I seemed to see things others my age and even older could not see which were to me just the simple things in life. Though sometimes I felt like I was riding a different train than most people and my train had already taken me through much of life before I was barely big.
I am 65 now and I still find joy in life and still have that awe that comes when you see something so beautiful that you are mesmerized by it. I often amazed people as I came out of surgeries with a smile on my face and nurses would ask me why I was smiling. I said because I am alive. Life taught me gentleness, kindness, the ability to see behind the illusion others put on and most of all, it taught me that I travel through this world one time and what I make of it is up to me.
I developed a keen relationship with my Creator for it is He that I depend on. I learned the joy in giving and helping others and I learned how precious loved ones are. I learned that everything you see is not always as it seems. l learned the peace and joy that can be mine even laying here in this bed in high pain. I learned to forgive quickly and to let it go. And I learned that simplicity outranks all the commotion and activity and craziness in the world any day.
And so, one day many years ago, I decided that feeling old was not so bad after all for it had slowed my feet so that I could see what was really important in life.There were times that I seemed to be the only one that saw the one tiny beautiful flower in a sea of ruin and doom and I could not understand why they did not see it. I soon realized that people see what they feel and I felt joy when others were consumed with sadness.
I was told a lot that I had an old soul that just seemed to know things before my time. What I had learned came from life or was given to me at birth…I do not know. I just knew that the precious moments in life and the memories we make are the most important things for we can take nothing with us when we leave this world. We burden ourselves with a lot of trappings and the need to own. Letting go was such a freedom.