People That Will Put Life Into Perspective

Below is one of the most inspiring and motivational people I have ever seen. And he is always talking about what he can do instead of what he can not do. He has that positive attitude that downplays what is wrong and shows the world that yes he can. He is one that has motivated and inspired me to fight as hard as I can..and to try to keep the happy positive attitude I do.

He has walked the walk..he does not just talk the talk and he has shown by his life that he is a Survivor.  His words ring true not hollow because he knows and has been through things most of us never have to experience. This is where attitude of gratitude comes in. See why I say..I am grateful for my legs even though they are not working well and have such pain..because many have none…and look what he did with no legs. That is what inspiring and motivational is…he makes me want to keep going because if he can so can I.

video by bullaudioengineering

Ben Underwood was the boy who taught himself to see with his ears. Can you imagine and he went just about anywhere he wanted and did what he wanted and people seldom knew he was blind. That is a survivor and so motivating and inspiring. He can roller skate between objects without touching them. And he smiles all the time and was always so happy. He died of cancer at the age of 16 and yet during his short life he lived more than most people do because he felt at home in his environment and knew how to move around.  I am chronically ill and yet I hear people who are chronically ill compare themselves to people with cancer and even say it is worse than someone with cancer. You all know what I live with and I would never presume to say such a thing. That is horrendous and very self serving and wallowing in chronic illness to me. This young man is inspiring and he walked a life of gratitude in spite of his disabilities.

Patrick Henry Hughes is another marvelous motivational and inspiring person. He was born without eyes and without the ability to fully straighten his arms and legs. This made him unable to walk. Add to that,  two steel rods were surgically attached to Patrick’s spine to correct scoliosis. And yet he has excelled as a musician and a student and singer.

“Despite circumstances, Patrick has overcome these physical issues to excel as a musician and student. Patrick started playing the piano at the age of only nine months, and also plays the trumpet and sings. He even participates in the University of Louisville School of Music Marching and Pep Bands with help from his father (Patrick John Hughes), who tirelessly maneuvers his wheel chair through the formations with the other 220+ members of the
Cardinal Marching Band. “  http://www.oddee.com

Survivors look for ways to do it instead of finding ways to stay sick. They look for solutions and not sit and stare at the problem. That is what makes them survivors and you know a survivor when you hear one because their words ring true to you. They do not sound false or lacking in having walked the walk. They are not just words but are victories in words.

Another Survivor and inspiring/motivational person is Nanno Parrado, a survivor from the Andes Crash. He said he decided he was going to die..but he was going to die TRYING. Survivors always look for a way out, look forward and look for solutions to problems. He lost family members and yet he still keeps on fighting to be a survivor in his life.

video by HistoryFeed

Another inspiring/motivational person is Jessica Cox, who was born with no arms and yet she learned how to fly a plane. She has survivor instincts and she does not just lay back and use no arms as a reason to not do. She even plays the piano with her feet. She moved beyond her limitations to excel and when she tells you that you can do it….you know you can because she has done it.

” she was born with this rare congenital disease, but also with a great spirit. The psychology graduate can write, type, drive a car, brush her hair and talk on her phone simply using her feet. Ms Cox, from Tuscon, Arizona, USA, is also a former dancer and double black belt in Tai Kwon-Do. She has a no-restrictions driving license, she flies planes and she can type 25 words a minute.” http://www.oddee.com

Another is Sean Swarner. “Sean isn’t just a cancer survivor; he is truly a medical marvel. He is the only person in the world ever to have been diagnosed with both Hodgkin’s disease and Askin’s sarcoma. He was diagnosed in the fourth and final stage of Hodgkin’s disease at the age of thirteen, when doctors expected him to live for no more than three months. He overcame his illness only to be stricken a second time when a deadly golf ball-sized tumor attacked his right lung. After removal of the Askin’s tumor, Sean was expected to live for less than two weeks. A decade later and with only partial use of his lungs, Sean became famous for being the first cancer survivor to climb Mount Everest.”  Talk about being a Survivor. He does not use his illness but rather moves beyond it to do things that he is told he can not do. He says we can live without many things but we can not go 60 seconds without hope….AMEN to that. Hope is what keeps us going.

video by spiders13

One of the things I notice about these people is that they did not dwell on what was wrong with them. They just focused on living and doing the best they could. They did not set out to be inspiring but how they lived their lives made them inspiring. How they dealt with the hardships they had is what made them inspiring.  Life is hard and when someone who has it harder than most people succeeds in being happy and in doing things in life, then they inspire others to do so. And when you consider that 25 million people in this country alone have auto immune disorders and battle every day…these people above are certainly heroic and motivating. And they help me keep myself in perspective and help me to see that it certainly could be a lot worse and that my attitude and my ability to adapt and be happy in spite of has kept me going.

 

 

 

It’s Your Job

I was watching Dr. Phil this morning and he started talking about the “black clouds” we get hanging over our heads sometimes. What was thought-provoking to me was his statement after that. He said “when you have a black cloud hanging over your head, it is YOUR job to do something about it”.  My first thought was “well crap, where is Superman when you need him” but in reality, I knew what he was saying. It is that choice thing again that I talk about a lot. Life is a choice and when things happen, we have choices and have to decide what we are going to do and with those choices come consequences. But, we do have the choice to be the survivor and handle things.

So, it is our job to do something about the black cloud that can hang over our heads. Ok, let’s try putting this in real life terms. Black clouds can be financial troubles, job troubles, health problems, family problems ….and so, we can either do something to resolve or accept the problem as something we have no control over or we can let it keep on raining on us.

Let me say this sort of as a “resume” of life experiences. I have had many black clouds and lost my car, my home, my loved ones, a baby, a job, my health and many other things in life, so black clouds are not something new to me. And yet, as I sit here, I realize that I have survived them all. I am sure there will be more black clouds in my future so the question that I have been asked is how do you handle the black clouds.

So, here is some older than dirt wisdom I learned along life’s journey. Nothing is every permanent. As long as there are people, life will change. The only things really we can count on is the weather…to be unpredictable. And to count on that the sun rises, even behind the clouds, and sets. The moon comes out and the stars. Plants grow and reproduce and so do the animals. That, we can count on. But, when it comes to black clouds floating over us, that is as unpredictable as the weather most of the time.

First things I do is realize that no matter what material possessions I lose…they are only things and not near as important as loved ones. And when I lose loved ones, I think about the fact that they are not gone forever and I will see them again and know that they are very close by.

I just learned to adapt. I lost my car and we drove son’s old piece of a klunker until we could get another vehicle. Was it the end of the world? No. Was it embarrassing? Yes, a little but that passes on by. It was in that old klunker that I learned to drive a stick shift and went on to drive a semi. So, it served a purpose.

I think the key is accepting life as it comes and realizing that life still goes on no matter what happens and we have to be responsible for how we handle life. I lost my health very young and I could have let it make me bitter and sad and yet I did not. I let it help me learn to adapt and be creative and find new ways to do things. I also learned to never..ever…give up.

Maybe that is the key. Learning to adapt and accept life as it comes to you and learning to let go of the negative feelings and finding positive ways to see life. I can tell you that I have been in some of the darkest holes before and yet some how, some way…I found that light called hope that kept me going and taught me how to smile in spite of what is lost.

I can remember a few years back falling down the stairs into my garage. I bruised my knee so badly that it bruised not only the bone but the bone marrow and I wear a brace to this day.  I also sprained my wrist and hit my head. I could not get up and had no way to call anyone. This was a big test of being survivor as I had to lay there three and a half hours in the cold until my son got home before help came.

What did I do? After I laid there and wiggled everything to see if anything was broken, I realized I could be in big trouble if I did not figure out things to do to help and to keep my spirits up. I pulled my arms inside my shirt sleeves to keep me warmer. I managed to roll over on my back and laid there with my head on a garbage bag of all things and I let my survivor mind help me through those three and a half hours.

I sang every country song I could think of.  I dared the mouse I could hear in the corner to not come near me cause I would catch him in a trap if he did.  I dreamed of ways to decorate the garage into a den room…all of this done talking out loud hoping a neighbor would hear me talking and come see what was up. And in my attempts to keep my spirits up and keep myself on a positive track, I took a rag I found beside me and tied it around my head Rambo style and then ran my fingers in the dirt on the garage floor and made streaks on my cheeks and yelled out while shaking my fist and said “You will NOT win”. And then I put my arm back inside my shirt.

It was about then my son got home and as he opened the garage door, he heard my shout and when he ran up to me…there I lay in all my Rambo glory on a garbage bag with a rag headband and warrior streaks on my cheeks.  He immediately started asking me what happened and as he knelt down to check me I started singing ♫♫I fought the floor and the floor won♫♫.  He looked at me and we both started laughing.

As he helped me up, tears streaked those dirt stripes on my cheeks from the pain but that was ok. I had made it and I knew in my heart I would be ok. He helped me to the van and then brought me a much-needed bottle of water. I had survived and was on my way to the Emergency room to be checked out. I really did not want to go but when son saw my knee that could have been a watermelon, and my purple looking wrist he decided we better go.

Son asked me before we got there could he wash my face off and remove my headband..and I said “oh, hells no. I earned this Rambo outfit”. He just laughed and said..”well, will you at least promise not to sing that song again in the ER?”  I told him I would think about it and squeezed his hand as I lay reclined in the seat beside him wrapped in a blanket. All my mind could think was thank you Lord..thank you Lord and “I made it! I made it!”

He hugged me after they checked me at the ER  and said he was so glad I was ok and that he never wanted to come home and find me like that again. The people in the ER told him I sure was a lucky lady and I told them “lucky lady my arse. I am a survivor.”  Son smiled and told them that it was the truth. His face beamed with pride at his mom and that made my survivor instinct grow even stronger.

Life is what you make it. You can not control what happens to you always but you can control how you deal with it. I could have laid there and done nothing and probably ended up in the hospital with pneumonia but I did not. The warrior in me would not let me. And that is a choice and you all have the warrior in you too. It is there. All you have to do is choose and use it and move those black clouds out of the way so that you can see the brighter things in life.

Stop Labeling Yourselves

This is a video I saw this morning. It is about a dog with no eyes. Many people would just give up with that kind of disability. Watch Riddle…nothing stops him. There is more to us than just the label of disabled or chronically ill.

 

Created by hullshaven

I remember my roommate of some years back. We were both disabled and yet so different. She worried so what others thought of how she “looked”, refused to ride in her electric chair and wanted to be pushed. She literally wallowed in her disabilities. She used her disabilities as excuses not to do things or why she acted like she did. She lived, breathed, ate being disabled and had no other life other than that of being chronically ill and disabled. She made no effort to see the good, made no effort to look for new ways to do things, made no efforts to be all that she could be. And I found that so sad.

And then there was me. My sons told me they had never seen anyone do like I did with a power chair….that it literally became part of me. They saw me use it as my back hoe. I would hold the snow shovel between my legs and rake with my little rake mulch, etc up on it and back up across the yard and then go forward and dump it. They saw me put my seat belt on and go flying down the road and around in circles….much like Riddle in the video….out of sheer joy at being free and able to move. I do not have the strength to turn the wheels on a manual wheelchair and I have injuries that prohibit that but put me behind the joy stick of a power chair and watch out world.

There is more to me than the label “disabled” and “chronically ill”.  There is more to me than being someone who has trouble walking or who is in chronic pain or chronically ill. Inside is this woman who dances across rooms, who runs in the breeze, who swings my grand baby around.  I am alive…I am smart…I have talents…I have feelings…I laugh…I cry….I play tricks…I work on projects most people would not….I even mud sheet rock laying down when I have to.  I have just learned a different way to do things.

So, what makes us different? Different personalities I guess. Some of us never give up. Some of us do not quit and some of us just do not want to have to depend on someone for everything. I may have to one day and then I will develop another attitude to handle that. Right now I have to depend on son for some things but I still am capable of finding my own joy in my life and of contributing to this world instead of being a victim and taking and taking. I want to fly with the eagles, dance with the wolves and I want to die with a smile on my face knowing I used up all that God has blessed me with. I do not sit and think about how chronically ill and disabled I am every minute of every day. I do not focus on the what if’s or on the next doctor or hospital stay. I focus on living.

People tend to judge others by how they look. Oh look ..a disabled person. Oh look, he or she wobbles when they walk.  Oh look, they are bald. Oh look, they are fat or skinny.  And they never look beyond that. There is so much more to people than that. We never take the time to ask ourselves..”wonder why she is bald?”  and to discover..maybe she is going through chemo. Or why she or he can’t walk or talk right. There is more to us than the label.

I was a teacher and this is why I did not like labels on kids. I taught hyperactive kids, attention deficit kids, really bright kids, slower kids…but I did not want to know all those labels when I got to know that child for then it puts expectations on them. Same with disabled people. If you see us just as disabled…you think we can not do. I hate for someone to take things out of my hands and “do it for me” because I am not as fast as they want. I now look up and go  ”it is my hands that do not work well…not my brain. Now hand it back please.”

I wish all labels were banned. Now, if you want to put a price tag on me…put it for the price I think I am worth…LOL..and not what you think I am worth. I do not let others diminish who I am. What someone else thinks is just an opinion…and you know what they say about opinions.  Opinions are like rectums…everyone has one and some stink and some do not.  I prefer to make my own opinion and as long as I am happy with the person I am…then I am ok. So, no labels for me please.

This is what I love about animals. They do not see you as disabled or ugly or fat or skinny or short or tall or any of those adjectives we humans like to use. They see into your heart and know whether you are good or not. That is more important to me than anything. And so, I shall continue to run and romp (even if it is in a scooter) and laugh and enjoy life and do all I can do and be all I can be..just like Riddle.  And I shall continue to work my dreams until I get as many as possible to come true. And I will nevah *using my best Scarlet voice here*  Nevah as God is my witness, live my life as a victim”…*shaking my fist in the air*.

So Busy Fighting The Battle That I Missed I Am Succeeding

I have said before I started with health issues at the age of 32 and am now 63 and will be 64 in May. I am a fighter and I was determined that this would not take my life from me and have stayed in fight mode so long that I did not notice that I was succeeding.

Each day I get this side of the dirt is winning and I have managed to stay on this side of the dirt living life, enjoying my life and trying to help others during hard times for 32 years. At times I feel like I just started with all the sickness and then other times I feel like all my life I have battled. But, what I have missed is that I am succeeding in a huge way..32 years of succeeding.

I do not believe in holding on to the hard times in the past or the things that made us cry because if we are still crying a year, ten years, twenty years, thirty years later….we never dealt with it and all we are doing is holding our life back..and recreating the pain over and over and over again when we hold on to it like that.

On the days I feel like I am too tired to keep going, I look back and see how far my fighting has brought me and how I am still living life even if I am fighting chronic pain and chronic illness. And to be honest, I never thought I would be here at the age of 63. I figured my health would take me much earlier.

Some have asked me was all the fighting, determination, grit and refusing to give up worth it. Not only is the answer to that yes but “oh hell yes” it has been worth it. I have gotten to enjoy my sons and my grand baby and my loved ones and family all these years. I have gotten to experience things like Italy…even on crutches..and coming to Colorado and fulfilling one dream…to live in the mountains. So, yes, it has been worth it.

When your battle..no matter what it is, starts to wane on you…look back and see how long you have battled it and how far you have come in spite of what you have battled.  And rejoice in the succeeding at keeping going through the hard times. No one said life would be easy but it sure is worth it.

Headed to Surgery Center

We are headed out to the Surgery Center. My cataract surgery is at seven-thirty.  They said I would be there a little over two hours.

Also reminder, please help us by voting. We really need that van. It would make life so much safer and easier for us and make these trips less painful for me. Thanks to all voting.

MOBILITY AWARENESS CONTEST FOR MOBILITY VAN

 You can vote every day until May 3 by going to this link  http://www.mobilityawarenessmonth.com/entrant/deb-oliver-walsenburg-co/

Thank you ….love Deb and son

Me as you know me with MOJO on

Maximize the Positive Not The Negative

This is one of those days that I have to keep reminding myself  “it is not the sixty pound tumor” so that I do not fall into the pit. I have a horrible headache and body aches and just feel yukkie and yet here I am laying here writing a blog. Why?  Because it helps me keep focused.

Many do not understand that concept and it is not to put down people with sixty pound tumors but to show that in comparison to that, my aches and pains are not quite as bad as I might want to think sometimes.

To give an illustration that many will understand:  We do not turn a skinned knee or a sprained ankle or a bumped head on our children into something horrible. We check them, put on a band-aid, put ice on the ankle and let them go on. They learn from us that pain is part of living and we can not focus on every boo boo and make it the most dramatic skin knee there ever was.

Do I feel like crap today?  Oh yeah, I do but you know what. There are so many positive things that have happened in the few hours I have been up that helped overshadow that. My son brought me my juice, coffee and cereal to the table by the bed. Daisy ran in here and snuggled to me and just loved all over me. I got a video message from a dear friend in Canada. So, I can either maximize those positive things in my life or I can maximize my headache and aches and pains and sick stomach.

So, what can the chronically ill or anyone for that matter do on those bad days where we just want to lay here. We do what we can do to best take care of us. We take our meds. We put comforting things around us. We make sure we get some form of nutrition in us even if it is ice cream for breakfast. We rest and we maximize the positive that is in our lives to the point that it helps us make it through this time of feeling worse.

We as adults can sometimes become like the sick child who whines and pulls on our shirt and tells us over and over how bad they feel and want our undivided attention. And sometimes we do that with those around us…our family, our friends and our loved ones and after a while, they get tired of listening to us. But, little do we realize that we can focus on the good and focus on the positive and work to make the aura around us filled with more positive energy than negative and those around us will be there. It is like the baseball field. If you build it, they will come. Well, whatever we create as our platform of life affects those around us and either they will be there or they will not.

This does not mean you have to be happy, happy all the time. It means that sometimes we might just lay there with a bit of a smile..not even a whole one and enjoy what those around us are doing. Let them be the focus of our attention instead of our illness, pain, loss, etc. It is not pretending to feel good. It is changing our focus so that we are not so focused on how we feel and more focused on other things.

Distraction often helps us push our pain and sickness to the back of the burner. There have been times I was so sick that I laid on the daybed on the porch with a puke bucket and lots of pillows, drink and just laid there watching the birds and squirrels and enjoying the sun. I found myself smiling in between putting my head in the bucket to throw up. I know someone who lies on the floor in a sunny place and allows the sun to fill them up and enjoys watching outside.

What if you spend your life looking for the good things, treating yourself with kindness, enjoying those around you, enjoying a tv show or a movie, a good book, the birds outside, etc….how much do you think that might make it easier to bear a sicker than normal day, a loss, money worries, etc? This is what survivors do. They quit focusing on me, me, me and focus on life around me and those I love around me. Excuse my language but hell, everyone knows how it feels to be sick, to lose a loved one, a job, etc and so constantly telling people how bad we feel becomes tiresome to them. They know we feel bad but feel helpless to do anything.

I believe in keeping the positive in front. But, I also believe that if we want people to help us we should make a list of what would help. My sons know that if they want to make me feel better, want to help me and want to show love without hugging on me when I hurt so bad I can not stand to be touched….is to do things I can no longer do. My sons used to think I was crazy when they would ask me what I wanted for my birthday and I would say mulch my flower beds, rake my yard, clean my house, or fix some easy to heat up meals for me, etc..any of those things. Make a list and put it on your fridge for all to see or email it to family and say “you know, when I have those really bad days, these are things that would pick me up and help me the most”.  My sons finally learned that mama loved to see her flower beds all fixed up or her yard raked or to get in the van all detailed and polished. And those are all positive things. Accentuate the positive and you will find your life becomes more positive.

There Will Never Be Another Jack But There Is A Daisy

I was thrilled today to get a response from the woman who helped us get our Jack. She just seemed to have a special connection to Jack and I wanted her to know that he had passed away. I say there thinking about how there will never be another Jack…another Wonder Dog.  BUT, there is a Daisy and will always be room in our hearts for another dog. Daisy and Jack have a lot in common.

They both like to sleep under the covers.

They both love stuffed toys.

And they both love clothes. 

Today has been Daisy day all over. She is so sweet and so puppy and we are enjoying her greatly. She has learned how to jump onto the seat of my power chair and on to my hospital bed. And so, her day is spent running from my bed through the living room and into son’s office and back again. She gets lots of exercise that way. And she plays hard and then plops down exhausted like a puppy and falls dead asleep on my bed beside me here.

And here is Daisy contemplating where to run to next.

She is so proud she learned how to get up on my bed and she does not like to be left alone right now. She has been through so much in her short life and so we hope that we can give her back the comfort of being home that a pet should have. The comfort of knowing that they will not leave again or be taken somewhere else for she is home for good now.

And I will tell you this little story about last night. Son woke me up at about two in the morning and said “Mom, I think something is wrong with Daisy”.  I sat straight up and asked him why and I noticed while he and I were talking and he was telling me how she would not go back to sleep and would not go potty, that Daisy was chasing her tail, running around shaking the dickens out of her blue dog and running up to son’s legs and doing that thing they do where they go down on their front elbows with their hiney up in the air wanting son to play. I looked up at son and smiled and said “Son, she is four months old. She is doing what babies do. Play with her a while, give her a snack and then put the leash on and take her back to bed. The leash will help you keep her in your bed”.  And he did and she went back to sleep. I laughed as this morning he said he woke up once and she was licking his face.

And so, we have had a day filled with Daisy all over the place and all over our hearts. She walked into our house the first time like she had been living here. She ran from room to room, came back in the living room and found her bed there, found her toys, ran and pottied on the piddle papers and jumped in son’s recliner and made herself at home. After we bathed her, son held her wrapped up in a warm blanket to help her dry and they both fell asleep.

And to my special Jack who brought me such joy, devotion and love…how thankful we are to have had you in our lives. You were such a special baby from day one. My prayer was that I made up for the start you had and gave you a happy life and one where you felt secure and loved and I believe we did that. You will forever be carried in our hearts and we find ourselves seeing a lot of Jack’s spunk in our Daisy.

Wonder Dog-may you run the fields of heaven with happy abandon

New Pictures of Miss Daisy

Oh I am so excited and the Rescue friend is trying to get Miss Daisy flown out here by the end of the month. She said Daisy is the sweetest most loving baby. I am so excited I can not stand it and so is son.

the bricks above give an idea of her size. Wonder what she is mixed with …with those long legs of hers LOL.   I am counting the days.

You May Be….

“You May Be [Chronically ill, disabled, blind, deaf, poor, jobless, homeless, etc}..

But It Is Your Choice To Be Useless"

I heard this quote last nite on television and it actually said "you may be blind but it is your choice to be useless" and I was blown away by it. I know, I know...there I go again with the choice word but life is full of choices and sometimes we make bad ones and sometimes we make good ones and thank God, we can still make choices. But, when we choose to label ourselves as useless and quit trying, we are sealing our fate.

image from quotes-lover.com

I have heard disabled, chronically ill, homeless, etc people say that about themselves and it simply does not have to be true. I have met the most honorable people, the most talented people and caring people who were homeless or poor or disabled...whatever. Those are situations or things that happen to us but have nothing to do with what is in our hearts and mind...our souls.

I believe this quote fits  life in general. We may be poor, without a job, homeless, arrested, chronically ill, disabled, blind, deaf and the list could go on...that may be out of our control, but it is our choice in deciding we are useless or pathetic or whatever.  And when we opt to choose to label ourselves useless, pathetic or any other adjective, we are making a choice that not only affects us but those around us.  And choices go both way. We also have the choice to decide that we are here for a reason and have a use in life.

When things happen to us in life, they do not just happen to us but to those that love us and care about us. When someone loves that means they care about what happens to the one they love...they are invested in them.  And when we choose to place a label on ourselves that diminishes our very being such as useless and pathetic, those around us are affected. We teach people how to treat us by how we treat and think of ourselves. If we think we are useless...so will other people.

Those labels are placing new dimensions on our character and our soul and can become self-prophesying. No matter what happens to us, we are here for a reason. We do have a purpose. Life may have changed  but that does not mean it ends.

image from thetrevorproject.tumblr.com

Allow the mantra..."I may be [insert word that fits you] but it is my choice to be useless” to run through your head. As long as we are alive, we can think, we can smile, laugh, cry and communicate with others, we have a use. No matter our situation in life, we do have choices. They may not be the choices we planned for ourselves but they are choices.  Life is a choice and our choices can mold what our life is like.

Loving Our Imperfect Selves

image from lisamhloyi.wordpress.com

I read a blog today 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?  …..your looks, your muscles and being able to jog, your hair, your work ability, etc.  Do you think that is all that makes you worthy?  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 who the person Deb is.

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 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.

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 in a day…if that much…concentrating on what is wrong with me and that includes such things as taking meds, breathing treatments, etc. If I did that, I would be spending every minute of every day tied up in illness. My days are filled with writing, family, talking to friends, reborn dolls, 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…I believe that what makes me Deb is more than my ability to walk..which I lost…my ability to work…which I lost…my ability to keep physically in shape…which I lost…my ability to go out and visit people…which I lost…or 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 all the time 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 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. My dear friend Sherry takes me places by camera as she travels …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 dear friend in Italy and I were talking about this the other day…about how some people let their illnesses consume them and then some are like she and I..and smile and joke and hug and laugh our way through the hard times. 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…in my actions. The diseases do not make us who we are…it is what we do with them that does. 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…..and they tell me that they just sit there in their misery and I ask them “how is that working for you?”.  Evidentally 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.