A View from Outside the Box

Do you wish you could make a difference but feel as if doing so isn’t possible or easy? Sometimes the problem is too huge and every effort seems puny by comparison. You can do something and you don’t have to get up, or even pick up a phone. Just re blog this post and you’re helping. Click on the link provided and you can order a kindle or e-book and that will help a lot. Help one woman who is desperately trying to help herself.

That woman is Sonya and she has lupus. ”She’s witty, stylish, Barbie doll beautiful, articulate, kind and so much more than the wolf that stalks her days and long nights. The wolf I speak of is lupus but really, it could be any chronic disease. Between 60-70% of mortalities occur due to this type of disease in the U.S. Sonya Dickerson is very much alive and fighting.” Help her fight the fight, re-blog this or order her book. It’s called “Diary of a Sick Chick, ” $3.99, the same as the cost of a cup of coffee.

Part of a piece titled “Crying Wolf,” to be found on “A View From Outside the Box,” url: adialgue

Link: http://www.amazon.com/Diary-Chick-Chronically-Woman-ebook/dp/B0071FAKUC/ref=cm_rdp_product

For photo credits or more information about Sonya, follow the link to her blog: http://supermodelrevealed.tumblr.com/

“…what the chronically ill cope with. Sonya, despite feeling ‘as if she’s half a person instead of a whole,’ has written a whole book that dispels some of the ignorance with courage and verve. So, this is what you can do; please re-blog this and buy her book. You’ll be helping her to help herself.”

An extract from “Crying Wolf,” to be found on “A View From Outside the Box,” url: a dialogue. Please re-blog this or better yet, follow the link provided to Amazon.com for Sonya Dickerson’s book, “Diary of a Sick Chick, A Year in the Life of a Chronically Ill Woman.” It’s the cost of a cup of coffee, just $3.99 to help Sonya to help herself.

Link: http://www.amazon.com/Diary-Chick-Chronically-Woman-ebook/dp/B0071FAKUC/ref=cm_rdp_product

If you would like more information on Sonya, she also has a blog: http://supermodelrevealed.tumblr.com/

“…Sonya, despite feeling ‘as if she’s half a person instead of a whole,’ has written a whole book that dispels some of the ignorance with courage and verve. So, this is what you can do; please re-blog this and buy her book. You’ll be helping her to help herself.”

An extract taken from ‘Crying Wolf,’ to be found on ‘A View From Outside the Box,’ url: adialogue. Please click on the link provided which will take you to Amazon.com in order to buy the book in e-book or kindle format. For more information about Sonya, she also has a blog: http://supermodelrevealed.tumblr.com/

Link: http://www.amazon.com/Diary-Chick-Chronically-Woman-ebook/dp/B0071FAKUC/ref=cm_rdp_product

Crying Wolf

We’re all taught that crying wolf is a bad thing, the story of the little boy serves as an example. The tale tells us that if we do it too often – no one will listen. What do we do when we cry wolf, but no one sees or hears? We didn’t cry too often, they just don’t want to understand or listen anymore. Every person with lupus or other chronic diseases knows this feeling. They live with the wolf, a disease that would steal their vitality and the hope of an ordinary life.

I have come to this piece by a short road of frustration, concern, and ultimately impotence. I know someone with lupus and her name is Sonya. She’s witty, stylish, Barbie doll beautiful, articulate, kind and so much more than the wolf that stalks her days and long nights. The wolf I speak of is lupus but really, it could be any chronic disease. Between 60-70% of mortalities occur due to this type of disease in the U.S. Sonya Dickerson is very much alive and fighting.

She’s fought shaking hands, crushing fatigue, unendurable pain and more in order to write, “Diary of a Sick Chick – A Year in the Life of a Chronically Ill Woman.” I would ask you to buy this book for two reasons (link below). It’s an insightful, valuable and at times funny story about a chronic condition, one of many that will affect every one of us, or someone we know at some point in our lives. It’s what you can do. The impotence I felt in relation to Sonya came from being able to do so little. I couldn’t take away her disease or ease her pain but I could buy her book and you can too.

Sonya has respect for this disease, so much so that she capitalises it throughout the book. Lupus: A clever disease that “has stumped the brightest minds of science and medicine. A systemic disease. A disease that attacks organs at will. Kidneys in one person, nervous system the next or even multi-organ failure.” In her case part of her symptom picture includes trigeminal neuralgia, otherwise known as the suicide disease. “The pain is unbearable. Excruciating. During an attack I either crawl around on the floor, engulfed in pain, or I pace…as if pacing will make a difference. Many people commit suicide when they run out of options. I can’t allow myself to go there. I have a wonderful child who I love dearly.”

We all have busy lives, raising children, working and supporting the people we care about. Sonya is doing all of this with lupus, writing, working and trying to raise a 14-year-old girl. I have a daughter of this age too and I’m quite impressed if she manages to make a meal for herself without setting fire to the kitchen. Sonya’s daughter not only cooks and cleans when her Mother can’t but recognises when it’s time to call 911, which has previously saved her Mother’s life.

“Diary of a Sick Chick,” details one year of ordinary life that is anything but, from diagnosis through to acceptance. It’s a journey that brings the author to a realisation that the chronically ill frighten people. They “fear that random things can happen to anyone.” People treat you differently and it becomes the litmus test for relationships, the ones that survive are special. “I’ve experienced people giving up on me. It’s like I’m already six feet under. The ignored and unreturned phone calls. The sad and pitiful looks. The downward glances. The yearning for yesterday when you were normal.”

The desire for normality is common ground between you and the people in your life. I believe in part, this may be the reason why some people shut down and avoid the chronically ill. It’s a kind of denial, not just from fear but also the abnormality of the situation. The same behavioural response can be observed in different animal species. They prey on, shun and drive out the ill or weak. If you are ill, you can literally become the disease, a lone wolf driven out of the pack. It’s not easy to feel normal when the landscape of your life is transformed, friends disappearing, choices narrowed and taken over by debilitating symptoms. “When you’re in pain, you can’t see, think or feel anything but IT.”

You would think that in our world of mass information, there would be less painful ignorance. With the overwhelming number of sites, blogs and resources available there should be greater understanding. I don’t think we’ve caught up with all that information though. In the medical sphere, where diagnosis and comprehension of disease is paramount, presenting as anything other than ‘normal’ (even disease has this designation) causes misdiagnosis, frustration, suffering and far worse. Consequently, there are people who remain undiagnosed, sent away with inappropriate medication in the hopes that it will silence the anomaly of their situation. “They don’t get a pink ribbon. They don’t get to walk for a cause. They simply go home and suffer.”

The path to diagnosis is frequently strewn with ignorance and dismissal. You become invalid, literally, and are made to feel as if you are ‘crying wolf.’ With the creativity of disease, so many people suffer unnecessarily simply for being outside the box. “You’re too ————- to have ——————. You’ll be fine. Take 10 mg. of fuckoffadryl for the next three days and that should do the trick. Those doctors don’t realise that you’ve lived in your body all your life and YOU are the expert on what doesn’t seem right or what does.”

This is just a little of what the chronically ill cope with. Sonya, despite feeling “as if she’s half a person instead of a whole,” has written a whole book that dispels some of the ignorance with courage and verve. So, this is what you can do; please re-blog this and buy her book. You’ll be helping her to help herself.

(Extracts taken from “Diary of a Sick Chick,” click on the link for Amazon.com to buy the book. If you would like more information about Sonya, she also has a blog: http://supermodelrevealed.tumblr.com/)

Link: http://www.amazon.com/Diary-Chick-Chronically-Woman-ebook/dp/B0071FAKUC/ref=cm_rdp_product

I love charity stores. I was out with my 83 year old Father and my 14 year old daughter on Saturday. My elderly Dad has been dragged to many a place he would never have set foot in were it not for me, charity stores being one of them. He, like many immigrants I’ve met, take great pride in being able to buy ‘new.’ I don’t know why? From an environmental perspective, it discourages waste and is a form of recycling, keeping our landfill to a minimum. Anything purchased in such a shop will also be helping the charity it represents. My favourite reason by far is exemplified by something I saw on Saturday. Near the counter my attention was drawn by a colourful picture, lightweight metal with four identical panels but for the colours, an Andy Warhol style image of Golda Meir with a clock face on it. (Who you ask: She was one of the founders of the State of Israel and their 4th Prime Minister.) I called my Dad over to look at it, he partly horrified at the everything of it but secretly pleased that I knew who it was. The woman behind the counter listening to us suddenly exclaimed, “That’s who it is!” I had no particular use for a clock but I loved that it was there, sharing space with grandmother’s china, all manner of labour saving kitchen devices that must not have saved much labour, holiday souvenirs to remember fun times but are better forgotten, stacks of books with emphasis on the helping self variety (as helpful as the labour saving devices I suspect), everything from the elegant to the kitsch and the tat inbetween. I love the journey back through the decades, the eccentric variety and it satisfies the hunter / gatherer in me as I search for bargains. I bought this bottom table and the vase from a charity shop some months ago and could not resist. Have a look at your local charity shop, you never know what you’ll find.

“One small action changed some things for her. It did not pay all her bills, magically transport her to ease…She felt her luck had changed and became more hopeful. That hope compelled her to consider her circumstances and to find the courage to change her life….Arthur Conan Doyle wove into his most famous character, the ability to discern the importance of the minute. He said, ‘It has long been an axiom of mine that the little things are infinitely the most important.”

An excerpt taken from “It’s the Small Things,” to be found on “A View From Outside the Box,” url: a dialogue

(Song with lyrics, Blink 182, “All the Small Things.”)

It’s the Small Things

Some years ago my husband and I were house hunting in the Scottish countryside. The market was buoyant and we hadn’t the luxury of an excess of money nor time to play the game properly. I realised if we could cut out the estate agent and the bidding and go straight to the seller, we might have a chance. Then it happened. We saw our dream home, a home we fell in love with on the spot. At well over 200 years old, Rowan Cottage was the oldest building in the hamlet, sandstone of warm hue and the very essence of charm. It had a postage stamp of a garden and was semi detached, sharing one wall with Starling Cottage next door.

Bold is not a complete stranger to me. I also knew without boldness, this house would be lost to us in a bidding war. I thanked the estate agent for showing us the house, quizzed her about the owner to no avail, and when she was gone I went to the neighbour. It’s the small things that make a difference. I introduced myself to Matilda who was in her late 70’s and was invited to join her for a cup of tea. Over tea I learned the name and contact details of the owner. That small thing Mattie did for me not only ensured we acquired our dream cottage but saved us, easily, £40,000. It made a big difference. I also learned that I would be very lucky to have such a wonderful neighbour and friend.

Mattie delighted in the small things, the smallest flower, a bird outside the window, or the exhale of the day - the time when she would savour a book or sip a cup of tea. She had a gorgeous garden, a very British garden with some grass, a large outdoor chess board, things to captivate high and to draw attention low. There was a summer house, something I had previously not seen the purpose of at one end of her garden. The path leading to it was lined with lavender and a variety of roses, the roses climbing to form a scented tunnel.

On fine days Mattie would open the double doors to the summer house and bring a tray of tea, biscuits and lemonade for my daughter. She had a tiny jug for my girl and an even tinier glass tankard, just two and a half inches high. We gazed at the garden and talked of small things, what we liked about a painting, a passage from a book and frequently, recited favourite poetry. She taught me about pointillism, how many small points of pure colour can produce something radiant, brilliant and bigger.

It’s those small points that really stand out for me, tiny luminous moments where truth is revealed. Khalil Gibran said, “In the sweetness of friendship let there be laughter, and sharing of pleasures. For in the dew of little things the heart finds its morning and is refreshed.”

We are all in need of the heart’s morning, a time to renew our overburdened selves. I had the opportunity to do exactly that for a friend some years ago. She was a put upon single Mother, struggling in every way possible. In constant conflict with her ex husband for support, juggling a full time job and raising two children, one with complex needs – she was so desperately in need of help. There was so little I could do for her and it frustrated me. One day she mentioned that she had stopped her son’s favourite swimming lessons due to a lack of funds. Over the next weeks, I contrived a situation that involved a well intentioned deception. I told her I had entered her in a contest at the local pool, first prize being a year’s free swimming lessons. I then contacted the pool, paid for the lessons and drew them into the deception. It was a very small thing but it was something, and I knew what those lessons meant to her son and to her. Later, the pool manager contacted her to tell her she had won the lessons. I swore them to secrecy.

One small action changed some things for her. It did not pay all her bills, magically transport her to ease or remove her son’s complex needs. It did enable her son to re start his lessons and she got a little time for herself, time to chat with a friend or read while he was happily engaged. She felt her luck had changed and became more hopeful. That hope compelled her to consider her circumstances and to find the courage to change her life. Eventually, she applied for funding and went back to school to retrain. She said that bit of good fortune was a turning point for her. Arthur Conan Doyle wove into his most famous character, the ability to discern the importance of the minute. He said, “It has long been an axiom of mine that the little things are infinitely the most important.” For Sherlock Holmes and my friend, this was certainly true.

So often all we can do is very little but very little accumulates into the considerable. Something small is a seed planted in our consciousness. With the right conditions, it has the capacity to grow. Not only that but I don’t believe we’re inclined to focus on the big things; they’re just too overwhelming. Has anyone ever made a grand gesture or done something big for you? How often have you heard the words, I have no idea how to thank you? Perhaps that’s why children are known for playing with the box and wrapping when given a gift – we’re wired to hone in on what is manageable. Those small seeds are more than enough; they’re what we need.

Not everyone would agree, Doris Lessing commented that, “small things amuse small minds.” If this is correct then I readily admit to the inferiority of my mind. I love the smell of the house after I’ve cooked curry the night before, something remembered about me when I thought no one heard, a beautiful phrase that makes me stop and repeat it with reverence, a cup of tea offered when I didn’t ask. All of it small it’s true, none of it will change the world, lessen financial burdens, end conflict or war, or solve problems of any magnitude. Still, “Great things are done by a series of small things brought together,” words from the Master himself, Vincent Van Gogh.