Posts Tagged ‘Grief’

“I am so cold” I remember saying, as I followed my Mom into her bedroom….. My teeth were chattering in the middle of July.  I was chilled to the bone and uncomfortably so, yet I needed to strip the navy blue suit off me.  The gold piping along my pockets seemed too garish for such an occasion.  “Take it off” my Mom said “I will give you something to put on”.  She handed me an old sweatshirt and sweatpants and I put them on and climbed onto my parent’s bed, covering up with a blanket… I didn’t think that icy feeling would ever go away…..

We had just come from my Brother’s funeral.

And I was empty.

My brother was gone.

And so was I, or at least it felt that way.

Dave passed away two weeks after my 25th birthday, and I was ill-prepared for such an all-encompassing sadness.  I remember running on auto-pilot the first few days after his death, but as the funeral came to an end, and life around me just went on… I lost my place in this world.  Life indeed went on without me.  My friends still went to work, and still went for drinks on a Friday night…. My Boss still expected that I come into work each day…. There were still bills to pay, food to cook, toilets to clean…. and I still had a wedding to attend… MY WEDDING… but I couldn’t do any of it.  I couldn’t even form a solid thought in my head… all I felt was EMPTY.

That day turned into 3, and I hadn’t yet taken off those sweatpants….  I cried all night long, and my days were filled with anything that would numb me out – I started watching soap operas… LOTS of soap operas…. and I began to knit LONG swatches of fabric, only to rip them out violently and start all over again.  Food meant nothing to me, having my hair done meant nothing to me…. time meant nothing to me….  I initially crawled into the rabbit’s hole to protect myself, but I kept creeping further into darkness until I couldn’t find my way out.

I pulled myself together long enough to walk down the aisle… I looked very put together that day – smiling, hugging, playing the quintessential hostess, but inside was a different matter entirely.

I pulled myself together long enough to go on my honeymoon, and come home with stories to tell…. and then I promptly fell apart.

I never went back to work.

My thoughts were no longer my own.

The darkness went from old friend to evil foe….

I admitted that I was on a runaway train headed for nowhere…

I admitted that I was powerless to my depression

I spent the next 8 months getting help.

I always looked back on that time as the most life-changing period of my life.  As time went on, and both medication and therapy helped me grieve over the loss of my brother, I began to find myself again.  It was hard for me to accept that the ME I was had been forever changed, but I learned to like the new ‘me’.  I eventually climbed out of that  hole, and into the land of the living again…  but part of me lived in fear that the darkness would eventually come back…

and it did…. 6 years later,

When I became ill.

Once you have been depressed, you never forget the feeling.  But it has a way of slowly sneaking up on you and ever so lightly putting its arm around you like a long-lost friend.  The isolation can be inviting when you are overwhelmed with life – the empty room lures you in, and then LOCKS you in…. It makes you thinks that the choice is yours, that you can come and go as you please…. and then it binds and gags you and renders you helpless. IT decides how long it will stay…

When depression first hit, I let it control my every breath… when it hit the second time I wasn’t that willing to hand over my life… I fought hard….

and it was ugly,

and it was vicious,

and it was all I could do to keep waking up each morning and fighting all over again…. but I did it.

And I keep doing it…just  because chronic pain and depression are friends with one another doesn’t mean they are friends of mine.

My pain would like me to end the fight.  My pain would like me to surrender.  My pain would like me to jump back into the rabbit’s hole…. but I won’t give it that kind of satisfaction.

Although I cannot control those feelings from entering my life, I DO have a say in how long they stay.

Pain has taken away a lot…. but I won’t let it take away my happiness.

You know what they say….

Living well is the best revenge…

and it is the way I choose to attack the darkness.

I am human, and still get depressed from time to time, but I know now that I don’t have to let it control my life.

Depression is a chronic illness, but it doesn’t have to be a terminal illness.

There will always be darkness, but it is up to me to let in the light.

I have been house-bound for the last 10 years, but I no longer watch soap operas… I have more useful things to do with my life…

And just so you know, I have thrown away those sweatpants my Mom gave me years ago…

I don’t need them anymore.

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MANY people in the world of Chronic Illness have seen this meme already.  It is designed to promote National Invisible Illness Week.  Even though I added this Meme to Graceful Agony when I first started this site, I feel compelled to do it again.  As I mature and grow through this journey of Chronic Illness and Chronic Pain I have noticed that some of my ‘answers’ to the following questions have changed…

So here is my updated list!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:
I live with a combination of illnesses actually. You could say I was born with an invisible illness, and have struggled my whole life, so I am no stranger to this journey!   I have congenital heart disease, severe Fibromyalgia, severe Myofascial Pain Syndrome, Insomnia, TMJ Disorder, Ligament Instability, Si Joint Dysfunction, Unclassified Nerve Pain, Chronic Pelvic Pain, and Endometriosis.

2. I was diagnosed with it in the year:

That would be a hard question to answer….. I was born with my heart problem, I was diagnosed in my early teens with ‘fibrositis syndrome’ which was actually fibromyalgia, but lacked the fancy name in the 80′s ;) as well as TMJ Disorder, but the rest of the conditions have been diagnosed in the last 6 years.

3. But I had symptoms since:
I have had symptoms all my life really, but they became worse after the birth of my son, and unbearable just over 4 years ago when I was going through devastation in my marriage….. some people have a nervous breakdown… I guess I had a physical breakdown.

4. The biggest adjustment I’ve had to make is:

The Biggest adjustment(s) I have had to make is changing my lifestyle and knowing my limitations. Before I was seriously effected by my illnesses, I was a very active young woman. If you had asked people in my life back then a bit about who I am, most would have said I was ‘bubbly’ and ‘sociable’ and ‘energetic’. Sadly, because of my pain, I still feel like I am the same person on the inside, but I am not as sociable or energetic anymore because my pain causes me to ‘hibernate’ a lot.

5. Most people assume:

I don’t know what most people ‘assume’ truly, I’d be only guessing…. I think the people in my life that love and support me don’t assume anything, because they have been through this every step of the way with me, and they know that ‘assuming’ anything is not the way to go…. they communicate with me and wait for me to lead the pack so to speak.  In saying that, I also know that I have been misjudged and misunderstood by people in my life, and would go as far as saying that I have been stereotyped and treated unfairly.. those people are no longer in my life.  Life is too short to hang on to those who aren’t worth your time.

I am blessed to have parents who are AMAZINGLY supportive, a partner in life who loves ME, and has never seen anything other than who I am, and is proud of me every single day.  I also have the world’s best son!  My little dude has a really great understanding of this life, and I hope it leads him to have only compassion for people’s differences.

6. The hardest part about mornings are:

The hardest part of the mornings is simply getting up! I am almost ALWAYS in agony when I first wake up in the morning, and not mobile. On really bad days my honey brings me my meds and a coffee in bed, so I can wake up slowly and start moving slowly…. On regular “bad” days, I can get up and get my own meds, and then I try not to move too much until my body warms up a little…. that is ALWAYS followed by some light stretching and a HOT bath, and then I am usually mobile after that.

7. My favorite medical TV show is:

I love ALL medical shows! I wish Dr. House was my long-lost uncle or something ;) …. he would have the “cure” for me in under an hour :) ER was another of my faves (I have the last season on my iPod), and I love Grey’s Anatomy, Private Practice, Mercy… you name it! I cannot be a Doctor in real life, but I’d love to play one on TV!

8. A gadget I couldn’t live without is:

Another hard question! As with a lot of my online chronic friends, gadgets seem to be my bestest friends, and they make my life a LOT easier! My laptop, my blackberry, my iPod Touch…. and my new Sony Reader! I LOVE THEM ALL! Just ask my honey, because they are USUALLY all brought to bed with me every night! (Yikes, that is not very romantic, is it?)… and I have been known to blog in the bathtub from my iPod…. and yes, I have dropped my smartphone in the bath ONCE…. see.. I told you, they go EVERYWHERE with me!

9. The hardest part about nights are:

The hardest part about nights is PAIN, and what comes with the pain…. feeling alone, 4am baths, sitting on the couch in the dark by myself, or not being able to cuddle because I am too sore….. Pain is often isolating, and that isn’t something that I have gotten used to yet. My honey gets mad when I tell him I have been up all night with pain, and usually asks me why I haven’t woken him up, but I don’t think it is fair that BOTH of us are up all night.  I work hard NOT to let depression creep in during those isolating times.

10. Each day I take __ pills & vitamins. (No comments, please)

It varies depending on how much pain I am in, but on a good day I take 5 different medications throughout the day, totaling  15 pills a day…. On bad days the number goes up in relation to how much pain I am in….. I will probably end up on 7 different medications, and god knows how many pills in total that will be.

11. Regarding alternative treatments I:

Regarding alternative treatments, I have pretty much tried everything other than doing the Macarena while standing on my head! I have tried acupuncture, acupressure, craniosacral therapy, massage, chiropractic, holistic, naturopathic…. yep, you name it, I have tried it!

12. If I had to choose between an invisible illness or visible I would choose:

When I first answered this question, this was my answer..  ‘If I had to choose anything, I simply wouldn’t. I would choose a life without illness period. But because that isn’t the case, and we don’t live in Utopia, I will choose exactly what I have… and hopefully the courage to teach others what it is to be like me everyday. Promoting awareness, compassion, and education might hopefully, one day, change the world in which people like me live.’

The gist of my answer still rings true today… I believe there has been a change in the conviction I feel though.  Today if I were to choose between having an Invisible or Visible illness, I would choose Invisible hands down… And this is why… For a very long time I thought that the only option I had to be happy was to not have illness of any kind.  I was wrong.  I have a VERY full and rewarding life… NOT the life I ever thought was possible for me.  I have met so many amazing people through Graceful Agony, and I would NEVER want to say goodbye to any of them.  They have added so much more to my life than I ever thought possible… so if illness is what has brought us together, then I can accept that.  I choose MY life, the way it is..

13. Regarding working and career:

Regarding work and career, my pain, and being the best mom I can be, IS my full-time job. I hope one day that I can make a career our of writing, and being a patient advocate in some capacity.

14. People would be surprised to know:

People would be surprised to know how soft my heart truly is… I have been fearful at times that my illness has made me either less approachable, or more hardened or jaded…. People that have known me for a very long time know that I am a softy….. but people who meet me now… I am not sure how they view me. I cry at the drop of a hat, during commercials, when I listen to music….. I spend a lot of time thinking about OTHER people, and probably not so much time thinking about myself. I always have everyone elses best interests at heart, and that can cause internal battles for me at times.  You can say I am a people ‘pleaser’, but not because I have to, it is because I WANT to.  That is who I am.  Somehow when intense and chronic pain gets involved I think that may get lost in translation somewhere.  I think I sometimes come across as being a lot more impatient and cold than I truly am.

15. The hardest thing to accept about my (not-so-new) new reality has been:

I think that answer might change from day-to-day, depending on where I am at with my pain level, and what I am doing. Life has a way of throwing you new curveballs every day…. And if you were to ask me that question 4 years ago, I am sure the answers would have been vastly different from today.

The thing that I often discuss with the ones I love is that THEY have created normalcy around my illness. They have HAD to… so when I say “I’m having a really bad day today”, they aren’t surprised by that. But for myself EVERY bad day I have is like THE VERY FIRST BAD DAY…. I haven’t gotten used to being in agony…. I mean, I am USED to it from the standpoint that it happens all the time…. but it still feels as intrusive and shocking to me as it used to…

The other thing that I haven’t gotten used to is what an all-encompassing impact my illness has on everyone I love.  Chronic Pain is a family illness…  I don’t ever get used to seeing the helpless look on my Dad’s face, or seeing a tear in my Mom’s eye.  It gets NO easier to deal with my sisters discomfort when my pain is brought up in conversation, or when my honey gets angry with my pain… I am still trying to learn how to separate ME from my pain during those times… I feel really bad that my pain hurts others… I am trying to NOT take responsibility for hurting my family.

16. Something I never thought I could do with my illness that I did was:

Something I never thought I could do with my illness has been to have someone love and accept me completely EXACTLY as I am….. baggage at all. When my marriage was coming to an end, I had completely resigned myself to the fact that nobody would love me the way I am, and that I was totally okay with being single or ‘alone’. Out of the BLUE an old friend came back into my life, and it was LOVE AT FIRST SIGHT (or 100th sight really, since we were friends years ago)… We spent MANY MANY hours on the phone talking before we ever met for coffee… I wanted him to know exactly what my life was like….. He didn’t think it was an issue in the least bit! He kept saying things like “you are my hero”, and “Wow, I cannot believe all the things you go through, I have so much respect for you.”. It was a point of view that I was really not ready for…… 19 months later he has been with me through thick and thin. He is truly my best friend, and we have a love that has risen above everything that has been thrown our way. I want nothing more to spend every day of my life with him….. and I am surprised that I have been so blessed.

17. The commercials about my illness:

What commercial there are about my illness, do not depict ANY of the illness accurately! They drive me crazy! Take a pill, and in 30 neat seconds that look more like a musical montage than real life, POOF! You are happy and jogging down a sandy beach with your golden retriever…… crap, can I have a pill like that?!?!?

18. Something I really miss doing since I was diagnosed is:

I miss the little things….. having the energy to get up and go, watching my son’s Christmas concert without having to worry about how hard the seats are, how long I will be sitting for, what price I will pay the following day……. It isn’t BIG things like ‘Oh I wish I could go skydiving still!” or “I really miss alpine skiing!”…. I really miss just NOT having to be aware….. I am hyper-alert every minute of every day, and it is TIRING! The first thing I think about in the morning when my eyes open is what I have to do just to get through the day…. I always have to be 10 steps ahead of the game….. if I have a coffee date at 5pm, I have to modify everything I do so I know that I will be mobile and functional by the time 5 rolls around….. I miss NOT having to think in those terms…. I miss not having to think of my pain every second of every day whether my pain is bad that day or not…. I always have to be 5-10 steps ahead…… it prevents me from living in the moment at times.

19. It was really hard to have to give up:

In a word, FREEDOM…. Physical, Mental, Emotional etc….. There are a million things I have given up, but they always end up being about one word…… freedom.

20. A new hobby I have taken up since my diagnosis is:

I don’t know if I have taken up any new hobbies….. I have always loved to read, and know I read just as much, but maybe I read about different things…. But other than that, all my hobbies are pretty much the same – making jewelry, knitting, crocheting, reading, spending time with family etc.

21. If I could have one day of feeling normal again I would:

If I could have one day of feeling normal again, I don’t think I would do it. If it was only ONE day, and the following day I would go back to feeling this way, I think the EMOTIONAL price I would pay for that would be more than I am willing to pay.  DOES THAT SOUND CRAZY?  I am now at a place in my life that I have no muscle memory or recollection of what it was like NOT to have pain…. I honestly don’t remember now… and I think if I had one day to feel that way, I would have to deal with all the depression and emotion of accepting a life with pain all over again….. I hope that makes sense.

22. My illness has taught me:

Where to start with that one?!?……. My illness has taught me a million things! Mainly though, it has taught me how strong of a woman I am, how much I am loved, how the human spirit can bend and break, but it becomes stronger at the broken places…. It has taught me what strength, and courage, and perseverance truly mean…..

It has also taught me that there is strength is numbers.  There is a united front in our online community – and the people who you may expect anything from the LEAST might just be angels that have been purposely put in your path… Thank you my earthly angels who are reading this…  I hope you know that my words mean nothing without you on the other end – reading them, loving me, and encouraging me.

23. Want to know a secret? One thing people say that gets under my skin is:

One thing people say that gets under my skin is “It could be worse!”….. um that is very easy to say when you are not the one having to live this life everyday…. That is a huge slap in the face.

24. But I love it when people:

I love it when people take the time to talk to me about what I go through, and really listen. I love it when I connect with people…. I love it when people take the time to give me encouragement, listen to me cry, put up with my rants, and don’t judge me.  Some of the most powerful words to hear are “I am so sorry you are going through this” and “I love you”.

25. My favorite motto, scripture, quote that gets me through tough times is:

My favorite thing that gets me through tough times is just to count my blessings…. it always looks much darker when you don’t stop and reflect on how many wonderful things you have in life, and how much gratitude can come out of a little bit of reflection.

26. When someone is diagnosed I’d like to tell them:

When someone is diagnosed I’d like to tell them that even though our experiences and or symptoms might differ, I am always here for YOU!  I hope to have the opportunity to share my experiences, my friendship, and to encourage you to have hope.  YOU are NOT alone!

27. Something that has surprised me about living with an illness is:

Something that has surprised me about living with an illness is that it has made me tolerant of things that I normally would have not been, and it has proven to me that I am stronger than I EVER thought I could be.  My will, courage and fortitude has ended up being something very different from what it used to be.

28. The nicest thing someone did for me when I wasn’t feeling well was:

I don’t know that I can answer this question with one answer….. There are so many nice things that people do for me when I am not feeling well! My honey is the greatest (okay okay, I am sure that you are probably getting sick of hearing that already ;) ), and he is FULL of wonderful things that he does day-to-day… from bringing me my medication, rubbing my back, reminding me of my strength when I forget… holding me as I sob, and not judging me…… My parents are ALWAYS just a phone call away to talk me off the ledge when I have had enough, they love me unconditionally, and the power their love has brings me to tears.   I have some AMAZING online friends who are ALWAYS there to listen to me…… The thing that makes the most difference when I am not feeling well is to simply just have someone ‘there’ and to know that I am not alone.

29. I’m involved with Invisible Illness Week because:

I am involved because THIS is who I am.  I AM Graceful Agony… and I do this for others who walk this road as well.

30. The fact that you read this list makes me feel:

The fact that you read this makes me feel loved! THANKS EVERYONE!!!

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At Peace….

The chapel in Riffelalp (2220 m), near Zermatt

Image via Wikipedia

Standing up to turn around and follow the rest of the family out of the little chapel, my Nanny touched the casket and said “I’ll be with you soon…” and my heart broke for her…  The 70 year journey that her and my Pappy had been on had come to an end, and my Nanny walked out of the chapel without her love…

My Pappy had cancer and he fought desperately hard but it was time for him to go… after 90+ years on earth, it was time for him to leave his legacy and find peace.  Knowing that made it easier to accept – he lived a good life.  He was a proud man, and he fought long and hard, but it was time for him to let go….

I don’t think my Nanny ever truly recovered from losing her love… Can you imagine spending even 50 years with the love of your life, let alone 70?  That truly is living a ‘lifetime’ with someone…And I should only be so lucky.

A few weeks back my Nanny’s heart got very tired… She had a heart-attack, and never recovered…. She fought as well, but a few days ago she passed away.  I guess you could say that she died of a broken heart… I believe that she did.

What can I say about my Nan….

I remember the weekend visits for tea when I was younger… My Nanny and Pappy always had Jelly tots in hand, and a dollar for me to put in my piggy bank… Isn’t that what grandparents are for?

I remember that my Nan made the best tea in the world.. I don’t know how she did it, but I have never been able to make a cuppa Red Rose the way she did… And she always had some sort of treat to pass around as well.. Peak Frean Cookies, Shortbread, Digestives… all the good English biscuits!

I remember my Nanny’s chair, the way she used to knit before she started losing her sight, the scent of her skin….

I remember how I loved to look at the hundreds of family pictures in their living room….

I remember how she teared up at my Brother’s wedding, and it being the first time I had seen her cry…

I remember how she hugged me the last time I saw her when we said goodbye after my Pappy’s funeral… and the last time I said “I love you Nan”.

My Nanny was a conservative English woman.  She was proud, and growing up I never saw her overly emotional… but it was always known that she loved us – just in the way she knew how. A few years back when she gave up knitting for good because her eyes and her health were failing she wanted to know if I wanted her supplies, and I was really touched.  Of course I said yes, I was honored to have that piece of history passed on to me… The next day my parents showed up with a TRUNK load of yarn, vintage patterns, and a bag full of needles… most are older than I am, I’m sure…. I think I will knit something beautiful to honor that connection we had.

One thing is for sure, my Nanny and my Pappy were inseparable.. there was never ONE without the OTHER… “Nanny-and-Pappy” were always one word… one entity….one breath…

And they are again…

I bet my Nanny is making my Pappy a cuppa tea right now as a matter of fact!

My Nanny and Pappy are together again,




With each other.

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I just wanted to first express my thanks to EVERYONE who participated, and for all the support and encouragement I have received…. IF you have hosted a blog carnival in the past you know that there is a bit of work that goes into it.. but does the ‘work’ ever pay off!  It has been a pleasure and MY honor to get to know all of you better, read your ‘introductions’, and share in your experiences, your perceptions, and most of all the wonderful and raw parts that make up YOUR human spirit… THANK YOU for sharing with me, and now I GET TO SHARE WITH ALL OF YOU…..

So without any further adieu…. I now present to you the first round of our brand new blog carnival!!!!!

– Sheila is a wonderfully strong woman, and the moderator in our Graceful Agony Facebook group.  Her introductory post, Who I am now? Introducing….ME! will give you some insight to her strength.  From single-mom struggling and almost homeless, to her struggles with her health – Sheila keeps putting one foot in front of the other…. I admire her greatly, and thank her for all the support and time she puts in to our group!

– I haven’t known Dana for long, but I must tell you, there is a wonderful energy about her – and you will immediately know what I mean when you read her post,  A tsp of sugar, a tsp of spice, a dash of everything nice…. Dana has Avascular Necrosis, Fibromyalgia, Sjorgren’s… yet she also has a ‘get up and go’ mentality, living a purpose driven life.  Her spirituality and her family motivate her to live the best life she can… that is VERY clear.. but what else is clear is that she is one special gal.  I’m honored to be in her circle.

– Kathy is someone I have been friends with since joining the online community.  She also lives in my city, and I cannot wait to meet her in person and give her a BIG HUG…  She means the world to me.  Her blog post, Introducing Kathy will give you a glimpse as to why she is so important to me.  With Kathy, what you see is what you get – and she lives her truth.  I have GREAT respect for her.  Although she deals with Fibromyalgia every day, she is always there for others, is truly an ARTIST in many ways (look at her photography – you will see what I mean), and is a true friend in every sense of the word.  She wants people to know that they aren’t ‘alone’ in this chronic life… and with her on your side, you won’t be… She has been there for me selflessly, as well as everyone else in our group who needs her.  THANK YOU KATHY!!  We NEED to do coffee soon!!

– Speaking of friends… Tammy is one of the BEST!!  If you have not yet read her blog, I suggest you get yourself a cup of coffee, a box of tissues, and jump in.  Her Introduction barely scratches the surface of who this awe-inspiring gal truly is… Tammy and I hit it off from the first second I met her, and I am proud to call her my friend.  Imagine going into the hospital for a routine surgery as far as today’s standards are concerned, and spending MONTHS upon MONTHS in the hospital fighting for your life… this is only a part of Tammy’s history – and I am constantly in awe of her strength and courage.  I am forever a better person for having her in my life… and you will be too! Love you my soul sista!!

– And speaking of soul… that is pretty much the start of describing Wendy!  I had the pleasure of getting to know Wendy through the world-wide web soon after I started Graceful Agony… and I can only speak for myself, but it was like talking to someone I had known for years.  Wendy speaks her truth, she is a great friend, and she is giving with her time and her energy whenever you need her, no matter what she is going through.  Her post, Introductions Again, YIKES! couldn’t be more candid and real.  What she does, and WHO she is are connected beautifully in her post – and she acknowledges that she is a work in progress… BRAVO!  Aren’t we all!?  It is about the journey, and not the destination in this chronic life… and Wendy relays this brilliantly.

– Selena is someone I really admire, and I know you will too.  She is someone who forges ahead, has a quiet courage that has changed the way I perceive myself, and defines herself – not letting her Illnesses define her.  That is what you will read about in her carnival post, I am not my Chronic Illnesses… She has been through so much with her health, but continues to inspire others to live an authentic life, and to not have those struggles define the heart of who she is.  I know her to be a sweet and genuine person, always helping others, and LIVING… and sometimes that is the hardest thing to do when you deal with pain everyday…  She is someone who doesn’t know exactly the impact she has on others… but I am here to say that she has had a great impact on mine.

– Phylor has a great blog, and she is one of those ‘chronic’ warriors who is ALWAYS motivating and supporting others!  That is how I found her in the first place, and she has been a kind friend and motivation in my life.  Phylor has insight that is so truthful, and I know it will resonate with you as well.  In her Introduction she points out that we don’t generally shake someone’s hand and include our illness in the “hi my name is…” greeting.. Isn’t THAT the truth!  Phylor is many things, and just like all of us, we are a sum of our parts – but isn’t it GREAT that we can include our online community in that?  Each of the people who touch our lives become a piece of us in some way – and we are blessed because of that.

– Rosemary is one of the most beautiful people I have known – inside and out.    She makes me laugh, makes me cry, and makes me want to be a better person.  Her writing is both candid and beautiful, and she gives me courage to be really honest when I have bad days… That is something that at times is still hard for me to do – but after reading her blog, you will know what I mean – you CANNOT be anything BUT real in her presence.  Her post, The Skippy Diaries will leave you nodding your head… you will be able to see yourself in her post.  As she reflects on the things that used to be a part of her world – high heels, a love of reading, and living without restriction – you will be able to relate to that ‘day’ when all things changed…  She might not think she is ‘dealing’ with this so well, but it is quite the opposite… She grieves over the life that once ‘was’ and in doing she gives her readers the courage to do the same.

– I met CJ through Rosemary a short while ago, but already she is someone I hold dear to my heart.  Like Rosemary, CJ is admired for her honesty… And for someone who has been blogging for a short time, she sure fits in to this community, and I’d be lost without her!  The picture CJ paints of puzzle pieces becoming lost in her Introduction really hit me to the core… Having a completed puzzle until chronic illness and pain smashes the puzzle could not be more accurate or profound… It is so VERY true… How do ANY of us start putting those pieces of ourselves back together??  I think maybe if the community around you stop and start helping you find the pieces that have rolled under the table and across the floor – just maybe we can get that puzzle put back together.  CJ might not think ‘graceful’ is a word that describes her life – but I beg to differ… Grace, like beauty, is in the eyes of the beholder.

– Krismom has a wonderful blog that has been mainly about her life as a Mother, and a wonderful Mom she is!  You don’t need to look farther than her main page to know that her family is the center of her universe… That is why I have a TONNE of respect for her that she maintains such a close-knit family in spite of her chronic pain.  She has taken a big step on her site and introduced herself, Underneath it all.  I laughed out loud as I read about others judgments on being a stay-at-home Mom.  ‘You are so lucky’ people say, but if they only knew… I can SO completely relate to this in my life, she could be telling my story, and the story of SO many Chronic Pain Survivors who have small children.  You will be a few sentences in and you will realize that she is SO much more than what she appears on the outside, and I think that is something we ALL can relate to!  I am SO happy she is part of our circle!

– Now if you haven’t gotten up and stretched yet.. please do so now… LOL!  Are you enjoying the blog carnival so far?  Have you found personal experiences that resemble your own?  Have you found inspiration in the these amazing posts?  I am SURE you have… I cannot begin to tell you how in awe I am of all of you….  Take a break, go get yourself an iced tea… grab the heating pad for your tushie…  make sure to stretch a little… and keep reading!!

– Have you been following the Fibromama blog?  If you haven’t then you this is one to definitely include in your blogroll!  Her introduction starts with such honesty, and in a place where I think we all have been… in bed… hair a mess…  in agony…  She is right, you cannot get much more raw.. and how many of us have been there?  She is one awe-inspiring gal, from graduating Summa Cum Laude to raising her children and being a wonderful wife – she is so much more than the Fibromyalgia that she struggles with… She might not think she has the gold star for being the ‘best’ any longer, but I think some of you will very much disagree… This Fibromama balances so much in her life and her words motivate me to keep doing the same… She definitely gets a gold star from me!!

– Michelle is an amazing Mom of a teenaged son who struggles with Chronic Pain.  I have had the pleasure of getting to know her this past little while, and I invited her to take part in this blog carnival.  She doesn’t yet have a blog, but her voice is JUST as important as ours… and this is her introduction:

Hi my name is Michelle, I am 45 years old. I am my son ‘s only parent living. My son, Josh will be 16 years old in a couple of months. Since he was 9 years old, I watched my son slowly grow in to dark spot of his life and every now and then I will see a smile. Since age of 9 he had three spinal surgeries to help with a tethered spinal cord. Nothing helped but all symptoms were worse including pain that is severe causing him to have to be sick to his stomach. Needless to say 6 1/2 years later, one very tired , heart hurting mother found this wonderful group of people who understands. I may never know what and how I found it. I was sad and needed someone to understand and not leave me. Over the last few years I found out who were my true friends the hard way. I do not have many. I hope to have found a few with this group. Who knew that it takes people to have to be in pain to be my friend..That is a very sad truth. Another reason my heart hurts..As you can tell I do have chronic heart pain and it will probably not go away.

* Please feel free to leave comments for Michelle on my blog, or she can be found as part of our Graceful Agony Facebook group.

Infinite Daze is a new blog to me, and I’m excited that we have a new online friend in this community!  I must say the quote on the main page is priceless… “Life is never quite like the brochure” – ain’t THAT the truth!!  As the writer struggles to find a proper diagnosis, and is housebound 80% of the time, maintaining a blog is something to be proud of!  And I think I speak from our whole group when I say that many of us have been where you are, and you are definitely not alone.  We have a facebook group, and so many WONDERFUL friends here… We look forward to getting to know you!

– Laurie’s blog is beautiful!  She has an amazing way with words, and she is also someone I consider to be a dear friend.  Although we lost touch for a little while (life happens), I am so glad that she wanted to be a part of this carnival!  If she only knew how much she means to me… her words have kept me going on a few really rough days.  But enough of that ;).  Her post – Feel Good, Eat Cake made a big change in me… I found it to be really profound in my life, and I think that you may feel the same way.  A life of illness and pain isn’t fun.. we all know that – but with it comes anger, depression, frustration etc. and often a change of perception.  Things that we normally didn’t react to – we do now, and sometimes our reactions can actually hurt us… I think because we can potentially swing from one extreme to another.  How about moderation? Laurie asks… Whether it be taking vitamins, eating cake, or even just MOVING some days… Mental and Physical health stems from internal balance… something this gal has, and I love her for it!!

So with that, If I can steal the last words on Laurie’s blog post… We are all in this together… And I must say that I am SO happy that we are.  I love all of you, and I am so honored to call you my ‘family’.  It has been a JOY to host the first round of the Graceful Agony Blog Carnival, and I am SO excited to see where this journey may take us.

I will let you all know when the next round will be as soon as I can, and I hope you will want to take part in it again!! ALSO PLEASE NOTE THAT WE ARE PREPARING A GRACEFUL AGONY CARNIVAL BADGE THAT WILL BE POSTED SOON! I hope that you will post this badge with pride!!

*If I somehow have forgotten to include your post, or you didn’t get it in to me on time PLEASE let me know and I will include it here… Accept my sincerest apologies in advance… I haven’t been so well as of late, and I am doing the best I can 😉

Oh and I forgot about ME… I was going to write a post to include in this carnival, but as some of you know I have been going through a bit of a rough patch the past few weeks.  My pain has been through the roof and uncontrolled for a few weeks now and my Nanny is in the final stages of her life and will be heaven bound soon… I pray she finds peace, and my Pappy waiting for her with a cuppa tea and his arms wide open.  Losing someone is never easy, but it is a time that we can reflect on our own lives…  The footprint we leave in others lives and on this earth – and how fragile life can be along with how our strength and courage can leave a legacy for others… Instead of my ‘introduction’ today I am asking you all to reflect on YOUR footprint in this life…

My life is an open book, and you are welcome to read through the archives to learn a little more about me.  I have many posts that I could probably include here – but Graceful Agony isn’t only about me… It is about ALL of you, and that is who I choose to honor today.

Thank you for being a part of my life…. I hope this is only the beginning….

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April 11th is a loaded day for me….  It is the anniversary of my ex father-in-laws passing, it is the birthday of my ex-husband, AND  it is my brother’s birthday… He would have been 45 years old today… We lost him on July 14th, 1999.  Whew… isn’t that something?  All of those ‘anniversaries’ on the same day?  As the years have gone by anxiety over today has lessened…. I used to want to remove April from the calendar all together… Now I stop to acknowledge the day  and then move forward… One thing is for sure though, I still miss my brother more than words can begin to express….

There was over 9 years difference between me and my Big brother… I was his “baby sister” through and through… He was my protector, my safe place to fall – and although at times we didn’t see eye to eye because of our age difference, I always knew that my brother loved me…  Looking back, I don’t know how he put up with me at times… I was his shadow, and always wanted to be a part of whatever he was doing… If he went out into the street to play hockey with his friends, I wanted to play hockey too… If he was in his bedroom listening to music, I would sit outside his door trying to listen also….  I am sure when he was 15 and wanting his own independence the last thing he wanted was his 6 year-old sister tagging along… The age difference seemed HUGE then… but as we got we got older, we became a lot closer…. I think he always knew I looked up to him, but it went from being his burden to being his honor as we got older.

One of my favorite “birthday” memories I have of Dave is when I took him to see Phantom of the Opera for his 28th Birthday.  Keep in mind my big bro was a man’s man… he was burly, and gruff on the outside to anyone who didn’t know him – but truly he had one of the softest hearts there could ever be.  My Mom had arranged for us to get tickets when the Phantom production made its way through our city… I couldn’t have been more excited!  I spent the whole afternoon getting ready, making sure my make-up and hair was perfect… wearing my new high-heel patent leather pumps (don’t tease, it was the 90’s! LOL!), making dinner reservations for after the play… It meant so much to me to be going on a ‘date’ with the guy I had looked up to all my life…

The first half of the play was SENSATIONAL… and I remember the absolute feeling of awe as if it were only yesterday…. We sat in the first balcony of the theatre, and if I close my eyes I can still feel the heat from the Chandelier that hung above us.  I remember the scent of the artificial fog that was blown onto the stage…. And I recall the cologne my brother was wearing, and the feeling of his silk shirt against my arm…I think I spent just as much time looking at my brother’s face and searching for a reaction as I did watching the play….

At intermission, my brother bought me a glass of champagne… It is funny the small details that you remember…. I felt SO grown-up… I felt as if for the first time in my life I was actually my brother’s contemporary…. I had gone from being that bratty little sister to being a woman in my brother’s eyes… or at least that is how it felt to me.  As I tried to play it cool, holding my champagne flute just so – and taking small sips as the bubbles tickled my nose, I felt a visceral change… It felt as if the cacoon had finally broken open, and a butterfly emerged… I went from being “sister” to “friend”, from being a little girl who never felt she measured up, to being a woman my brother respected.

The last half of the play was even more amazing than the first… and as the curtain closed my brother was the first one in the whole auditorium on his feet.  If you knew Dave, you’d know that this was out of character for him.  I rose out of my chair to join him in the standing ovation, and then noticed that my brother had tears rolling down his cheeks…. and I started to cry too…. We both wiped away our tears before the house lights came on, as if they never fell.  But I know the truth.

We went for dinner at The Keg afterwards, and he was HUGELY EMBARRASSED when the waiters came over to sing him Happy Birthday!  He faked being REALLY irritated that I had made those arrangements beforehand, but secretly I think he appreciated the effort.  We laughed and talked about many things, and HE didn’t want the night to come to an end.  I thought he would drop me off at my apartment right after dinner, but instead he asked if I wanted to go for a drink… GLADLY I said yes, and we made our way to a pub.  We ended the night with a long personal conversation about where I was at in my life at that point, and the potential he saw in me.  When we finally said goodnight, he gave me a big bear hug and said “I love you Joey”, and drove away…

I didn’t know then that I would only get to see 6 more of his birthdays…  each of them were celebrated, but NONE of them ever compared to that night… It is something that I will never forget.  Dave never stopped being the “big brother”, but after that day we began a beautiful friendship with one another.

We lost Dave just weeks before my wedding…. And so many things have happened in my life since then… He never got to see me walk down the aisle, he never got to meet my son… My Dad’s battle with cancer, the loss of my health, the end of my marriage… all of these things he has missed…. And I have often wondered what he would have thought about all of that… I wonder if he would be proud of the way our family has dealt with the hand life has given us…. I wonder what role he would have played in all of it.

But the one thing that I know for sure is that he loved me… and it was my honor to be loved by him.

Mostly I remember him with a smile in my heart when I look back at all the memories.  There are times still that I cry, but I am not scared of those tears anymore… it is also my honor to shed those tears for him, because he is worth every one of them…

Dave was my protector, my big brother, and also my friend.  Today I stop to remember, and to celebrate the life that ultimately changed my own.

Happy Birthday Dave!  I love you.

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