Tuesday, November 14, 2006

A Diamond in the Rocks

Whew...Monday was a really rough day. It has been 3 straight months of mostly bad days and when I go that long without a decent break, I begin to notice patterns in my life. Mondays have become blue for me and emotionally difficult. I assume I must have decided this as my 'marker' day, adding up yet another week ill. Another pattern, is my analysis at the beginning and ending of seasons. What have the last 4 months been like? What did I accomplish? Well, boo...they haven't been very easy. I've gone to the hospital 3 times (in an ambulance) which is really scary because that means I'm having a bad seizure and the neighborhood gets to see me in my bra and I'm extremely modest (;#). I haven't been able to go see my daughter, or go anywhere that requires significant driving and I've just been staying at high levels of pain for weeks...it's exhausting and not very fun. And... after 165 posts, I got my first hurtful comment. My first reaction was 'ouch' and then I went to anger, then contemplation. I really wanted to be honest with myself, thus contemplating the comment made in the context of what I choose to say on my blog verses what I choose to keep private. That is something that all of you lovelies get to do also...choose, and why we have that cute little trash can in our control. We get to decide what goes out and what comes in, if your fast enough and on your bloggie toes. I have no idea how many of you lovelies got to read the anonymous comment and see my reaction that I ended up completely deleting. :) Are you curious yet? [Basically, anon (which cracks me up and that's an entirely different subject) has experienced the death of her mother and told me that I dwell too much on death and therefore put my family through premature grief. According to her, Lupus is not a life threatening disease, so I need to appreciate life more.] Wow! Geez! Dang! &%#$! There are 2 kinds of Lupus: one that is external and causes severe rashes and Systemic lupus, which is internal and life threatening. I have systemic and unfortunately it is also a 'sister disease' that sometimes accompany other diseases. (meaning...some people that have syst. lupus also have another disease with it...bummer :( ~I have had many emails from people wanting to know exactly what kind of symptoms I have and I choose to keep most of that information in my email correspondences, but I will tell you that, I battle more than just lupus and have faced death on occations (plural). And when I'm in the middle of a seizure, the look on my family's faces surely reflect, that my life is being threatened.

On the other hand, I feel that I have opened myself up enough to give most people an idea of where I'm coming from and that process has produced connections with other people who suffer. We comfort, support, listen with first hand experience and give love, a very healing and magical process. ~I pondered anon and wondered...Do I focus on death? Am I that negative? Do I make myself sound like I am dying, therefore causing people to grieve my oncoming death? Do I not inspire hope and perseverance, because that was my intent on making this decision to blog.

I was bummed!

And something I've known all along became a rock of reality. {HOLD YOURSELF ACCOUNTABLE IN YOUR COMMENTING} We are forming opinions about other peoples lives that we don't even really know. You and I....we only know a tiny piece of most of each others stories. We don't know their history, their baggage, we don't know the whole picture. We don't know how volatile they are or their situations, so even if we say, "I don't mean this to sound unkind, but....." I'm sorry, it simply is unkind, if you have to begin your sentence with those words. It just so happened that on that very day, I was having an incredible migraine, throwing up, and waiting for my husbands 2nd CAT scan results, had posted a honest to goodness brutal picture of myself (Nov. 10)...and wham! Anon graced me with her pearls of wisdom. None of you knew any of this, but all of you said the most wonderful things to me that day. It gave me peace and on this particular day...I really needed it. Angels, all of you!
Here's some advice for any anon's out there...just a thought...if you feel you really have to 'share' like that, please email me and give me the opportunity to know who you are, listen to your story and willingly give you more of mine. I would gladly exchange our experiences :) That is one of the ways we learn and I love learning :-)

We will never know what our lovely blog friends have to wake up to. We won't know what crisis may be looming around them, all the more reason to use the comment sections as avenues of peace, words, like kind gifts.
Sometimes, what you say to someone, may be just like a diamond sitting on top of what feels like a pile of rocks.


Blogger Shaz said...

I know chronic ilness.
You have only ever been an inspiration.
I must of missed that comment and I pop in and out through the day as a matter of course, as you know I dont get out much either.
Do as you do sweet Dar I am uplifted and find hope and solace in your words as do a lot of your regulars. Anonymous is convenient and something to hide behind.
Dont stop your honesty your faith or any part of what you do.
LOve Shaz xoxox

10:52 PM  
Anonymous amy said...

i am a regular reader of your writing but have never been brave enough to post a comment before.. i want to say thank you for your words and images and for the generous spirit with which you share them. i have found much food for thought and inspiration in your posts.

take care,


3:59 AM  
Blogger Left-handed Trees... said...

Stay open, Darlene...that's all I can say. DON'T let one person ruin your posting--I come here because you share your process, this includes the days where you aren't feeling well...but are finding the light in it anyway. This inspires me. I don't understand the anonymous commenter syndrome...I really don't. No one forces anyone to read any of these blogs we all write--if someone doesn't like what another is creating/sharing/posting, just stop visiting. Why the lashing out? I don't always resonate with every blog I visit and check out--but, I don't feel compelled to write a giant "You Suck" either as a parting gift. Sorry for rambling, but I've seen this on other blogs too and I just don't understand...

4:12 AM  
Anonymous Anonymous said...

Just as I thought...well said.

May your comments be filled with glittering jewels to lift you up as you do for us each day.

:D Star

6:58 AM  
Blogger Deb R said...

I did, as it happens, read the comment and your reply before you deleted them and thought you were quite generous to her in your reply. I have NO patience for anonymous comments. None. If it's worth saying, it's worth attaching your name to. If someone is ashamed or embarrassed to sign a comment then they have no business writing it in the first place.

I've even considered doing the option of disabling anon. comments on my blog, but have not (so far!!) just so I can give the option for people to comment without signing up for a Blogger identity, but if people use that option, then by gawd I expect them to *sign* the comment. Or, as you say, to email me privately. My contact information is not in any way hidden - and neither is yours.

I hope you didn't take that comment too much to heart, dear one. It was obvious to me that it came out of issues of that anonymous commenter instead of any attempt at understanding you. You are brave and creative, warm and loving and authentic. You shine.

Sending good thoughts your way~~~

7:04 AM  
Blogger brittany said...

I saw that comment and had my own negative reaction. I have learned that if you have to submit "anonymous" most likely, you shouln't be commenting at all.

And for the record, I am in wonder about your upbeat attitude and hopefulness about life in general, especially considering what you battle on a daily basis. No, you don't focus on death. No, you aren't negative in any way.

Peace, girlfriend. Love to you today. ((((((Dar))))))xxx


7:11 AM  
Blogger Georgia said...

I am sorry a nasty anon posted a comment to you. You are the true diamond dearheart :) Ignore the hateres and kleep sharing of your lovely self. Every post of yours that i read fills me with hope and inspiration. You are a phenominal human being and sometimes people are tooo caught up in their troubles to see your wisdom, they just want to spread their own pain. BOOOOO HISSSS Down with the trolls!!!!!!


Talk to Thea, she uses a tracking software so she can find out who is visiting her blog... That way you can know if your Anon is a regular "friend" or not... anyho... love to YOU sweets, I hope your week is as beautiful as you are.

(this keeps getting longer) i love the new profile pic!

7:47 AM  
Anonymous Anonymous said...

i missed that particular flurry of correspondence, but i agree with deb. if you must put it out there, have the courage to sign your name, otherwise keep it to yourself. being judgemental in disguise is so cowardly and counterproductive. you, my love, exude so much life!

8:02 AM  
Blogger Trish Ryan said...

It seems odd to me that someone accused you of focusing too much on death - I've been stopping by your blog for a few weeks now and didn't pick up on that at all. You seem to be pretty into LIFE from what I can see.

There are blogs out there that are pretty grim, as people get so lost in exploring the outer reaches of their bad feelings that they forget to go out and DO some stuff to fill the days. And for those blogs, we all have the option of not coming back. But your blog brings me back. Keep doing what you're doing. ..it's great :)

You are in my prayers...Jesus was pretty good about healing people who asked him.

8:31 AM  
Blogger dd said...

I really admire you and so enjoy reading your blog. I have been lurking a lot and reading but this post made me want to drop you a message. I hope you have a wonderful day.

I enjoyed your photography also. I HAVE to go out everyday and photograph my everyday life. I really enjoy yours.


8:33 AM  
Anonymous Anonymous said...

I will tell you I have a huge lump in my throat...and admittedly some anger that someone took the time to comment with that.
I don't even remember now how I came upon your blog, I believe it was through anothers, as you do...just seeing who else is out there. From the very first moment I read anything here I knew I HAD to email you. I feel inspiration, courage, determination, generosity of spirit, honesty and so much more when I come here. It is never occured to me you were doing anything but trying to get through each day with grace and tenacity. I loathe that anyone would say any different and upset you in any way! Please do not allow that energy to seep in for a solitary moment...and never change how or what you write here. Thank you for you!

9:08 AM  
Anonymous your little one said...


That is so funny that someone would ever say that. Your bravery and optimism inspire me everyday. I have had countless friends in awe about how positive our whole family is while going down this rough path. I am proud of all of our strength, especially yours. I love you...and it is sad that sometimes people hurt others to feel better about themselves. We can do nothing but feel sorry for them.

9:24 AM  
Blogger deirdre said...

I've been reading your blog for just a few days - found my way here from Boho's blog - and have found your writing to be wise and honest. During my own times difficulty and grief I've been amazed at people who think they have the right to judge pain. It's always disconcerting to be scolded for your own feelings. I wonder if this anon just likes to stir things up.

9:36 AM  
Anonymous Anonymous said...

I am in shock that someone could even consider you negative for even half a second. I look so forward to reading your blog because you are so positive and lovely and brave and smart and creative. Your spirit is uplifting to so many (including me) and you are so fabulous. Don't let anyone tell you differently.

I hope and pray that you are feeling OK today...love and a big ol' hug to you.

And neighbor, if you ever want some company...just let me know :)

9:36 AM  
Anonymous Anonymous said...

gRRRrrrRRR my protective hackles just went up a bit. i didn't get a chance to read either comments but darlene i am astonished and hurt on your behalf that anyone would think you reflect too much on the negative aspects of your illness.

i have always come to your blog, loved what i read and left feeling more inspired and open to receive the blessings of the universe. *that* is all your doing, my love. i LIKE when you feel comfortable enough to share parts of your journey with lupus with us because it is a part of WHO YOU ARE and what you're experiencing...which is hard sometimes, and challenging, but also, it gives us the opportunity to learn from each other's struggles and support each other.

please don't let this change anything about who you are or what you do - both are phenomenal. (that picture of your eyes made me cry...)
i'm in complete agreement with deb by the way. people who are going to say anything (especially negative) to anyone in the comment section should have the courage to sign their name.


10:03 AM  
Blogger Deb said...

I did read the comment from anon and I have just read the comment today from your daughter who sounds like a gem! It's the one's who love us that matter most!

"Be true to yourself because those who matter don't mind and those who mind don't matter" -Dr.Seuss

Have a blessed day!!

10:22 AM  
Anonymous ceanandjen said...

Sweet Dar, I did indeed read both miss anon's comment, as well as your reply. Your reply was extremely generous considering what I can only imagine your feelings were.

Having done plenty of reading on the subject of this disease (for obvious reasons), I know for a fact that there is plenty of information out there. Beyond the fact that this comment was just plain cruel, it was misinformed. Systemic Lupus can run it's course in many different ways...that is why is is called "systemic;" it attacts different systems in your body. You, sweet lady are experiencing it at it's worst, and NO ONE, let me repeat, NO ONE has any right to question that. This is the part where I get quite angry, because I know about being questioned, and the emotions that you go through as a result are unnecessary. There is enough pain involved in this without having more added. Okay, shaking a bit now.... and rambling, my apologies.

The bottem line, is that despite all that you go through, your perspective and insight IS indeed uplifting, to say the least. You create stunning photographic and verbal images for us. You are a gift, plain and simple. I am positive that I do not speak for myself when I say that we all feel blessed that you share your journey with us, and we are all here to support you, NEVER to make you feel badly.

Please don't censor yourself...

Love, health and light to you....
xoxoxoxoxo- Jen

10:29 AM  
Blogger ~Michelle~ said...

I love your blogs. Your photographs are amazing and your words poetic. You have every right to share and express and be honest.

Please know, you ARE an inspiration. I am deeply moved knowing how much you are going through, yet create such beautiful blogs full of hope and love.

You are an amazing woman and I feel honored to know you through your blog.

11:13 AM  
Blogger Vesper said...

wow, thanks for sharing that. i think the longer one blogs, the greater their chance of receiving "hate comments."

i think anon's "advice" suggests that she is angry at death and uncomfortable with it, which is unfortunate, but it surely reflects her state of mind and has nothing to do with your life. she simply let one detail of your life instigate her own insecurities and fears, and she lashed out.

11:58 AM  
Anonymous Anonymous said...

you rock my kashbash girly...

and it's something i ponder too...

i got a wonderful "anonymous" comment months ago from someone asking me when i was going to stop the ploy and break up with my partner, as i was sharing at the time the challenges of relationships.

that's the thing in this online world... we hear each other's stories, but we don't know each other in real life, as full women. if they knew us, they would know just what an amazing man and soul my lover is {not to mention fuc*ing hot ;) ), and they would know of your whole spirit and the message you share with this world.

i deeply respect and honour what you share with this world honey...

you are a light

in love,

2:12 PM  
Anonymous Anonymous said...

My paternal nanny used to say they don't make diamonds big, always with a twinkle in her eye because she barely scraped five feet tall.
You're one of those larger diamonds, Darlene, and despite all the cuts and scrapes you've been through, it makes you sparkle more.

I just want to re-iterate all the
beautiful messages of personal support above and the right to your freedom of expression.

your ROCK!

love bb x x x x x

2:14 PM  
Blogger rising to the challenge said...

Darlene darling,
Just as Trish Ryan said in her comment above, you do NOT give the impression of focusing on death! You do, however, give great insights into life, love and relationships, working through experiences as they come to you and smiling almost all the way. Even at the hardest times, you exude optimism and I, for one, have no intention of turning the beautiful enjoyment I get from our connection into premature grief. No. In fact, what I would really love to be able to do is to protect you from comments like this -so hurtful, so ignorant and so cowardly -I wish I could be your 'firewall' and make sure only the truly positive thoughts can get through.
Love and goodness,

3:51 PM  
Anonymous Anonymous said...

I have always admired your honesty Dar. Its one of the things I love the most about you.

You MUST tell your story truthfully.

It helps others.
There is no benefit in glossing over your experience... except to spare others pain.

Mmmm... is that really what we are about? No, I dont think so.

I am so fortunate to have emails with you... which provide a much deeper understanding of *you*, your life, your experiences.

That which you show here is nothing short of inspiring.

Your faith and reflection at times astounds me... it is real, raw and true, just as you are.

You are beautiful angel.

5:12 PM  
Anonymous Anonymous said...

I think your little one is one very old soul.

5:15 PM  
Blogger Jenny Rough said...

I just found your blog two days ago and I love it! I'm so sorry to hear about your lupus. And I'm so glad you are sharing about it because words reach out and comfort others on such a deep level and it's so important to share your triumphs and struggles and grief.

Isn't it funny that mean comments are always anonymous? I went through the same thing awhile back and it still hurts when I think of what the person said. I agree with Trish Ryan - you seem very into LIFE.

BTW, thanks for your sweet/funny comment on my blog.

6:08 PM  
Anonymous poet said...

been so wrapped up here i never even saw that comment. pfffft to anon. even if you click anon, you can still sign your name if you are going to take the time to post a comment. sheesh.
i love your page, your wisdom and the way you keep smilin' through everything. this post really tells it like it is for me. keep writing, and never mind the mindless in blogland. you know who is here for you, and we all have our reasons for reading you. i find great comfort in learning about you and how you cope. how you try and find the best in each day. i enjoy the poetry, the pictures, and yes, i enjoy when you come to my page to let me know you are thinking of me with my own battles here in my life. a kinship seems to be born amongst we bloggers. take care and i hope you are having a better day today.

6:14 PM  
Anonymous Anonymous said...

Oh Darlene, I am so sorry you had to be confronted with such ugliness when you have always been nothing but light and positivity.

No doubt anon thinks she's doing you a favor by telling you how to live your life. Brush it off - as best you can - and keep telling your truth the best way you know how.

We all think you rock!

6:54 PM  
Blogger Jane Poe (aka Deborah) said...

Oh Dear Dar,
What a precious post ... precious because it is filled with your loving heart & spirit - especially in times of strife. I will write more privately to you, but know that this reader, this friend, loves you and treasures your gift of connection.
much love, friendship & peace, Deborah

9:06 PM  
Blogger Romina Bacci said...

You wise woman... I don't have much more to add to all these comments...

just a big, warm, safe but BIG BIG hug.

Love you.

9:06 PM  
Blogger gerry rosser said...

I have been making a concerted effort in recent years to avoid reacting with anger/irritation when other people do or say hurtful things. I don't know them, I don't know their lives, and I do know that I have, at times in my life, said abrupt, snippy, and downright hurtful things (all of which weigh on me). I have found much peace and calm in this effort.

Having said that, I admire your response (as you relate it, I didn't see the Anon. post or your reply). You have a wonderful outlook. You warm up my life.

4:13 AM  
Blogger Turquoise CRO said...

((((((Darlene)))))) Love and prayers are headed your way! Keep Blogging! I LOVE your little birdie pics! Soooo SWEET, just like YOU! xooxoxo

8:33 AM  

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