2nd candle lighter award: picnic with ants

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Epiphyllum 'Wendy'

Image via Wikipedia

{Disclaimer: I had to use Live Writer to general this blog due to the amount of graphics/pictures I incorporated. Which means it’s pretty blah, the font not too exciting an the layout not quite what I wanted, especially for a blog that points folks toward a very creative blog!}

As I said in my first bestowing of the award, there are SO many deserving bloggers out there (I have a list of who I’d like to give the award to.)

This time, I’m going to try and cut paste a bit differently, so that the recipient, Wendy of Picnic with Ants blog, origin of the award, and the only criteria for acceptance are easier to read (not in several different fonts in several different colo(u)rs.) So here goes – I hope to get this finished before the internet goes on strike on 18/01/2012, so I can get Wendy’s hon(u)or out there.

clip_image001Kate Kresse, of Belive Away, originated the Candle Lighter Award to: . . . “light a candle in the darkness that envelopes us all at times. I want to lighten loads and light the way. I gravitate towards positive people and positive blogs. I want to start a blog award that reflects my love for the positive in the blogosphere.”

Kate asks little of the winner – to link back to her comments when the blog been posted, and to, of course, if you choose, to pass the award along to anyone you feel deserves it. You can award it as many times as you like, all that Kate asks is that you link your post back to her site.

Now, on to the person and blog I’m nominating for the award, someone who shines a light in her particular chronic illness community, the chronic illness community in general, and in my life particularly: Wendy of Picnic with Ants. Wendy has to deal daily with headaches, vertigo, disequilibrium and the other effects of Meniere’s disease. She blogs honestly and openly about her illness; how it has affected her life; shattered some dreams; and changed her future. The things she has to face like further hearing loss, endless operations, tinnitus, and the list goes on. She also advocates for those folks dealing with chronic illnesses such as Meniere’s and other chronic illnesses as evidenced by her recent posting: Help End Federal Neglect of Headache Disorders.

And, if her current blog wasn’t enough, Wendy, as an artist, has created another blog: Create to Heal. As she writes of this project:

Why Create To Heal?: Art can be therapeutic. “I am not an Art Therapist, I am simply someone who uses art to help deal with the day to day trials of living with a chronic illness. My goal is to create something every day! Draw, Paint, Make a Collage, Take a Picture, Create a Recipe…anything. I may not be able to post every day. However, I will try to post every thing I’ve created. (so some days you may get one day’s worth of creation, other days you may get many.) When one lives with a chronic illness some days it can be hard to accomplish anything. Having this goal to create something every day, gives me something to strive for. It also gives me an outlet to share how living with a chronic illness affects me. I’d love to hear your story. To see your creations. You will see that things do not have to be perfect. Just doing something will help.”

Here are just some examples of what she is able to create despite the pain and disequilibrium she lives with daily:

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The Last Dance.
Leaves blowing in the wind

copywrite, of course, on all images belong to Wendy (just so you know)

As part of her artistic side, she participated in clip_image004Art Every Day Month during during November 2011.

Wendy is a multifaceted individual, blogger, writer, creative person. And, without going into personal details, Wendy has been my candle in the darkness as I’ve tried to navigate my mental illness issues and problems finding treatment. She has helped light the paths at the tao of the crossroads; she truly has been my candle lighter.

I think her drawing, Hope, best symbolizes all that Wendy stands for, and I am very pleased to nominate her as my second candle lighter award winner.

http://dogear6.wordpress.com/2012/01/01/adding-a-widget-to-your-sidebar/ will help you, Wendy, attach the candle lighter award to your side bar (thanks again to Kate both for initiating this award, and for the badge instructions, which I also want to thank dogear6 and Becca Givens  for helping me place my badge on my side bar. Thanks for someone who is less than techsavy.)

* (One word of caution, only, Wendy writes about ALL aspects of her dealing with the disease and her relationship with her wonderful husband, Stuart. There may be some posts that are too personal for some folks to read comfortably, depending on who they are and how they react to the good, the bad, and the ugly (and the amazing) of being a couple dealing with chronic illness.)

And, I already have my 3rd nominee in mind – if all goes well, I could be posting about that tomorrow. (Or Thursday – time will tell.)

Thanks for listening.

And the winners are: thanks to those who wrote a letter to their bodies and minds

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Disclaimer: This is a very long blog, but rather than break it into two halves, thought I’d warn you so you could pace yourself during reading. And, don’t forgot to click through to the links to the blogs and letters. I’ve only given you a taste of the powerful, emotional, open, honest, and inspiring writing these women have done.

On March 16, 2011, I wrote a letter to my myself asking my body and mind why they were ganging up on me. I concluded my missive with:

The act of sitting here writing you a letter has started a new pain cascade. The tingling numbness will explode. Back in bed; in the fetal position; I will slow down my breath, and try and decode the messages you keep sending. Is it morse code – the dots and dashes of my pounding heart; binary language of 1s and 0s combined in pain; a mythical language from our ancient past following the neuropathways? Where do I get my “secret decoder ring?” When will you speak to me in words; sentences; paragraphs that I can understand?

I’m still waiting for my mind and body to reply. No  email, text message, phone call, or tweet.

Not an original idea; I’ve seen it used in other blogs, including Dear Thyroid. As the authors of the site/blog say:

When we’re silent, our diseases win.

Additionally, speaking up and out about our diseases creates awareness, makes us feel less isolated and breeds solidarity.

By expressing ourselves as we see fit, using language that we define as appropriate for our individual selves, Dear Thyroid is and remains the community’s literary sanctuary, to express: rage, sorrow, irreverence, humor and happiness about the community’s experience of their  thyroid disease, thyroid cancer or whatever thyroid issues each community member is facing or faced.

I challenged my readers to write their own letter; to start a dialogue with their minds and bodies; to open the lines of communication. I am very pleased with the results of my suggestion. Folks with a variety of health issues wrote powerful, moving, emotional, evocative, personal letters. Links shared with me via the comments section or by email.

I’d like to take a minute or two more of your time to highlight these letters/writers (with links). I think when we share, we learn. We learn about ourselves and we learn about/from others. The dynamic of encouragement, empathy, and understanding is the hallmark of the various health issue online communities to which I belong and participate. The willingness of folks to be open and honest is inspiring. I feel privileged to have “met” some amazing and incredible women as I journey through the cyberverse. And these are a few of their stories.

All of these women suffer from a range of chronic health conditions from Addison’s Disease or Hashimoto’s Thyroiditis; Fibromyalgia or Endometriosis; Avascular Necrosis or Arthritis; or a combination of the above and more. Most chronics have more than one condition/disease they are trying to deal with.

In the comments section of my blog entry, Hibernationnow asks her body why subject her to the pain, the tiredness, the anxiousness that can come with the stress of dealing with life, chronic pain, and chronic illnesses:

I’ll do anything to get rid of those pests inside my brain and my body that are hammering on my insides until they get through to my skin and I want to attack them like I would swatting at flies. . . .I am getting scared and angry at this stupid disease . . .

And, like so many of us, some days the battle scars show more than others; the tears closer to the surface, and when optimism is in short supply:

So, there it is, my ups and downs, my sad to bad feelings, my utter feeling of helplessness in a world that is scary enough without any control whatsoever.

The Addison Girl writes in Stupid Body isn’t pleased with her body’s performance and treatment of her:

Sometimes I wake up and think I am fine…but you creep up on me when I’m not looking and pull the rug from under my feet.

In her case, it’s like her chronic health conditions are mocking her:

You love to see me exhausted, weak and crying in my pillow.

Handful of pills and potions don’t affect you at all. . . .

You love to see me suffer…and you laugh.

Addison Girl also points out how chronic illness can impact on all aspects of our lives. And, the need, as much as we hate to do it, to ask for help:

My back hurts, my muscles ache, my hands throb.

I get nauseas, I get diarrhea, I get horrific stomach cramps.

I can’t eat this, I can’t eat that, then you change your preferences.

You used to like this, you used to like that…what happened?

Back to cream of wheat, applesauce and bananas I guess.

Dizziness, foggy brain, falling, I can’t even think sometimes

Can’t drive, I’m too afraid and can’t go to the store alone.

Wendy, at her blog Transform Your Chronic Life, starts her moving letter with an apology to her body and then an explanation:

I have to work, or I can’t feed you, or provide a home for you. Without a job, there would be no herbs to ease your pain, no vitamins and minerals to support your attempts to keep going, no heat to soothe your muscles, no soft bed for you lay down in when you’re worn out and hurting.

Like many of the correspondents, she sometimes feels betrayed by her body and the never-ending cycle of pain and fatigue:

I used to feel like you had betrayed me, and I resented your inability to keep up with the things I wanted (and needed) to do. I’ve now come to understand that what I saw as betrayal was simply your attempt to cope with the stresses and strains my life has placed on you.

But she has reached an understanding with it, and ends with a promise to treat her body more gently and kindly when possible: “it’s time to start appreciating your strength and endurance.”

She concludes by saying:

There are days I hate my life; but there are many more when I feel this overwhelming gratitude for what I have, what I’ve learned, and the amazing people I’ve met because of my illness.

Fear and frustration are understandable emotions given the nature of chronic pain and chronic illness. We can feel alone in our suffering and challenges. Reaching out for answers can prompt others to open up and share their fears, hopes, disappointments, and dreams. Wendy’s open and honest approach prompted many folks to write of their own health issues and concerns.

Kathy, in the comments section, succinctly sums up her conversation with her body:

You’ve let me down, brought me to my knees on more than one occasion, challenged me and taught me. .You “take a lickin’ and keep on tickin’.” Several times a day I grow tired of you. Yet there are also times when I am amazed at what you can do. My reach exceeds my grasp and I am continually re-evaluating my goals, dreams and desires.

This constant reevaluation and reinvention of ourselves as chronics is a challenging experience.

In her post, “You Are The Only One: A Letter to My Body, Sunshine and Chaos, wants to know why her body is keeping the answers to her health concern questions hidden:

And why are you keeping it such a secret? You know I want to know. It’s torturous not knowing, not being proactive. I just want to get better. But, you are the only one who is holding me back.

She asks her body:

You are the only one who is with me 24/7. When I’m having good moments and not  so good moments. When I’m scared, frustrated, happy, silly, sad. . . . .

I did those head exercises the doctor gave me. They just made us sick. I certainly wasn’t expecting that from you. I was doing them to try and make things better for us, not worse. Certainly not to make us nauseous. Couldn’t you work with me on that one? I was doing my part to make things better, why weren’t you?

But, she is not about to let her body set the entire agenda:

Just so that you know, I still have hope! I still have faith! . . . just so that we’re perfectly clear on this, I’m not going to be the one who loses!

Jamie, writing as chronic migraine warrior,  appeals to her body and mind to help her understand the processes she is going through:

Have you lost the ability to do the things I’m struggling with…or is it the illness…or the medications?

Despite the daily struggles and challenges, Jamie closes her letter with words of acceptance:

I admire you for all that you’ve been through! The past 2.5 years have been horribly challenging, and you’ve endured so much. I’m doing my best to take care of you. I’m continually learning more about migraines and possible treatments . . . . I promise to keep trying to improve, and to be more appreciative of how much you constantly endure.

Emily Ruth of Chronically Creative focused on her immune system for her dialogue. Like so many of us, she has a love/hate relationship with her system. As she states:

really hate having to take a truck load of pills. I hate living life within the limitations of pain and fatigue, and I hate having to live life within the restriction of four walls some days. I miss the old me. The me that had a bucket load of energy and more.

I often preface comments with “in my former life” And, like Emily Ruth, we often blame/question ourselves and our role in becoming chronic:

Where did I go wrong? What did I do wrong? Was my healthy diet somehow not good enough for you? Or did I stress too much? Did I not pay you enough attention? Maybe this determined driven girl overwhelmed you. Should I have taken more care to slow down instead of running myself into the ground? Tell me what because I am at the end of my rope. Tell me what I need to do to fix this mess. I will do anything.

I know I bargain with my body/mind, offering up what I hope will appease them. Or wonder what I could have done differently; if I’ve had my abscessed tooth root canaled sooner; if I could just follow the right diet for the right amount of time.

We all lament the lose of our old self; the pre-chronic version:

You’ve seemed to take everything I love and shatter it into a million pieces that seem impossible to ever put back into place. My life will never be the same. Because of you I’ve lost my career, friendships and so much more. I struggle on a daily basis dealing with this grief and somehow accepting this new way of life.

Emily speaks to our new hopes and reinvented selves and reimagined dreams caused by our health issues:

I’m discovering new talents I never knew I had and I’m learning to hope when there seems nothing left to hope for. For that I am grateful. From now on I promise to continue to listen to my body and slow down. I promise to work as hard as I can both physically and emotionally to overcome fibromyalgia, endometriosis, chronic fatigue and arthritis. I can beat this. I will beat this. I will win.

Dana Morningstar, blogging at I Already Gave My Right Arm to Be Ambidextrous! wrote Note to Us: Body, Mind, and Soul. She picks up on many of the themes: new challenges; misunderstandings and miscommunication; dealing with multiple illnesses and symptoms; adapting, readapting, then rereadapting.

Dana comments on how the body, mind, and soul can reach a disconnect; or cycle round with each other in some sort of dance:

The Mind gets these symptoms from the Body and automatically thinks it’s something hormonal! Is it something totally new?  Is it menopause or my thyroid? Have we put on weight? Oh my, we have gained 25 pounds in 6 months!!! OK, why has the body put on so much weight? The Mind is obsessed over the weight gain! It is becoming too much for the Soul, for our spirit! It’s upsetting us and making us depressed! 25 pounds isn’t good for our joints, ya know. We are trying to conserve what we have here!

In Dana’s case, her deterioration in health was the result of side effects from a medication. While she is dealing with withdrawal right now; she hopes to be back where she was 6 months ago:

We are a team. Remember what it was like just 6 months ago when the team was working so well together. We were the right weight. Our joints did not ache every time we bent over and picked up Mick. Our fingers did not stiffen every time we tried to put his diaper on.

She closes with some last instructions to her body, mind and soul:

Dear Body, please tell the Mind when you need more help with your symptom checks. Dear Mind, please look toward the Soul to give you strength when you begin to feel depressed and confused by the Body’s symptoms. Dear Soul, please do not give up on the Body and the Mind because we need your Spirit to keep us in check! We need all of you to keep Dana all together as a whole person. Thank you so much! Hope to hear from each of you soon (Body, Mind and Soul)

 I hope the conversations started with our minds, bodies, and souls continue. I’d love to read your body, mind, soul’s response to your questions, promises, demands.

If I missed anyone who had a conversation based on my challenge, please let me know. My memory has been very faulty of late; I could have even read and commented on, lol. Thanks to everyone for participating!

Now, for the fun part: for everyone who participated, I have some little, funny, funky {sur}prises. So, if you email me your mailing address to phylorsblog@ymail.com I’ll send you off a little parcel. 

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