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A tribute to Sharon O'Day, April 2010, from her friend Jodi Bassett
I met Sharon in 2004 in a chat group for people with severe M.E. Right from her first few posts I knew this was someone special and someone I really wanted to know.
In one of these very early posts, Sharon wrote some very witty and funny comments that just made me laugh out loud. She wrote about how she'd been so ill that she'd acquired a burial shroud (from a family member), and how now that she was doing a little better and wasn't quite at death's door anymore, she didn't see why she should let a quality garment go to waste and so she had started wearing it as a nightie. She joked that she ended up 'out-living' it in the end and that she 'wore it to death rather than TO her own death!'
You can laugh or you can cry (and cry and cry) when you have severe M.E. and for the most part, as much as anyone could, Sharon faced it all with a wry grin and some very black humour - as well as a lot of wisdom, dignity, intelligence, strength and an enormous amount of compassion and kindness for others in the same situation.
For many years Sharon had to cope with a severely disabling neurological, cardiac and metabolic disease as well as a system set up to discriminate against those with this particular disease and to ignore, ridicule and abuse them. She did an amazing job at coping with so much, a medal worthy job. (Helped especially by Brendan, as well as her late father). But at the same time I would hate to minimise the extreme amount of suffering both of these problems caused for Sharon, and how hard was her constant fight just to keep her head above water and just to get through each day.
With early appropriate care M.E. does not become so extremely severe, yet almost nobody with M.E. receives this type of early basic care. Sharon needed carers to do many basic tasks, yet was made ill by the presence and talkativeness and noise of carers. She suffered with extreme pain and muscle problems and many other symptoms. Also, she wasn't able to afford (or have prescribed) some of the medications and supplements that gave her a bit of relief. Plus she was very limited with even basic communication so could not often get support or advice from her fellow patients (or give it). It's hard to describe in words what all of this means in terms of daily living, a 'living hell' is all that comes to mind.
That such a wonderful person had to put up with so much, and that such a huge amount of the suffering was needless, is appalling. That doctors in Australia are taught nothing about M.E. and all the extensive M.E. research done prior to 1988 is ignored (and hidden) by government is appalling. That no research at all is being done into M.E. in Australia right now, despite the fact that M.E. is at least as common and at least as disabling as MS, is appalling.
In the last few years Sharon's emails came less often than they had when I had first met her (although she was less ill by far than when she was in the acute stages of M.E., she was still very severely affected the last few years). She was too ill to write more than a few sentences every couple of months. Sometimes Sharon was able to make short phone calls, while I had the opposite problem of being fairly good with email but completely unable to use the phone. Sharon was someone I counted as a real friend, she was someone I thought of often and admired a lot. Out of sight was never out of mind. Yet never even once did we get to have a single phone conversation together, due to illness. This was something that I had always looked forward to happening and I just can't believe that now it's too late. Such a simple thing to wish for but just as impossible for all that. M.E. just takes so much. I'll always be sad I never got to talk to Sharon.
There is a lot of Sharon's life I have little idea about. I know little about her life before I met her and I have likely forgotten parts of what I did know, due to severe illness. Communication for us both was always difficult and too brief. But while I don't know all the facts about Sharon on paper, I know her. I know who she was, how strong and funny she was and how amazing she was.
Sharon will be greatly missed by her much loved partner Brendan, and her fellow severe M.E. patient Stef most of all, for whom Sharon became a combination of close friend, advocate and substitute-whole-family for the last several years. Sharon was Stef's 'angel' as Stef has put it. Sharon will also be greatly missed by me and the other M.E. patients who knew her and loved her.
I believe Sharon would most likely still be here with us (and would have lived past 54), and would undoubtedly have had to endure far less physical and emotional suffering if M.E. were treated appropriately for the type of devastating neurological disease it is. If M.E. patients were treated no differently to those with MS (a very similar disease to M.E.) for example. Political and financial concerns should not be allowed to completely dictate what should be purely medical and scientific concerns. Enough wonderful people have died and have had to endure so much needless suffering in the last 20 years. Ethics, science and reality have to prevail finally. This is affecting real people, many hundreds of thousands of them, in incredibly cruel ways, for many years at a time.
Almost nobody sees severe M.E., as it means being housebound and bedbound and being very limited in basic communication. People with M.E. are just too ill to fight for their rights themselves unfortunately, and many aren't even well enough to read about what is really happening. But people with M.E. need MORE help from the community because of this severity of illness, not LESS! If this doesn't happen, the abuse will never end.
I would ask that anyone reading this take the time to really SEE people with severe M.E. and to see and think about Sharon, and how much more she deserved from life.
Sharon touched my life in a way I will never forget. I hope everyone who knew her knew how amazing she was, and how special. I'd like to finish by sending all my love to Brendan and Stef who are both in so much pain right now, and also, to dear Sharon. I love you and I miss you so much already my friend.
Ps. I didn't plan to make this tribute to Sharon at all political, I wanted to only barely mention those issues but they just crept in. Having severe M.E. is a political act, and the fact that we have M.E. and not MS or Lupus and the political lies and nonsense that go with having M.E. post-1988 is such a big part of why M.E. makes life so hellish, along with its brutal physical severity, and so are an inescapable part of describing a life with M.E.
A tribute to Sharon, April 2010, from her friend Jo
Dear Sharon, you are missed so much already. All Severies always in my heart even when not writing, we are a community. I remember your caring and strength for others and your humour.
So sorry that you are gone - with your beautiful Soul I know it is to a more beautiful dimension of being. Even so, wish you could have gotten better and stayed with Brendan longer. Wish you were with us here.
Stef, I'm so sorry for your loss of a dear friend and support. If you need an ear, email me anytime. I can at least listen.
Fly free, Sharon.
Do not stand at my grave and weep , a poem written by Mary Elizabeth Frye and posted online in tribute to Sharon from her friend Els, April 2010
Do not stand at my grave and weep;
I am not there, I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn rain.
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there, I did not die.
Death is nothing at all
"I have only slipped away into the next room."
I am I, and you are you.
Whatever we were to each other
That we still are.
Call me by my old familiar name
Speak to me in the easy way which you always used
Wear no forced air of solemnity or sorrow.
Laugh as we always laughed at the little jokes
We enjoyed together.
Play, smile, think of me, pray for me,
Let my name be ever the household word that
It always was.
Let it be spoken without effort,
Without the trace of a shadow on it.
Life means all that it ever meant
It is the same as it ever was
There is complete unbroken continuity.
Why should I be out of mind because I am
Out of sight? I am waiting for you
For a short while
Somewhere very near
Just around the corner .
All is well.
A tribute to Sharon O'Day, April 2010, from her friend Stef
Sharon O'Day. 2nd July 1955 - 27 April 2010
DEAR GOD PLEASE GIVE REST TO THE SOUL OF SHARON O'DAY WHO HAS FALLEN ASLEEP IN YOUR KINGDOM, WHERE THERE IS NO PAIN, SORROW OR SUFFERING. AMEN
Firstly, I would like for everyone to give Brendan a smile and let him know he is not alone. I know for a fact that Brendan was Sharon's world. I know that she never wanted to face the possibility of living without Brendan because he is her family, her life partner, and dear friend. Brendan you were Sharon's "person," you were her rock. You were there for her and I know she wanted to be there for you. Don't ever forget that Sharon loved you Brendan and was so very grateful to have you in her life. Sharon has a special sister named Heather who is also here today. I know she loved and cared about you too Heather.
I must also mention Sharon's late father Kevin. Sharon loved, cherished and adored her wonderful father more than life itself. She often spoke highly about her terrific dad and had fond memories of their loving time together. She was in awe of his gentle & kind nature. Sharon was also so thankful to her father for nursing her through a difficult period of severe illness. His passing left her heart broken but Sharon carried HIS heart in HER heart and so he was always with her. He was her protector, her guardian angel. Perhaps it would bring us some comfort to TRUST that Sharon is now at peace and in heaven with her precious father. He was dearly loved, dearly remembered and dearly missed by Sharon.
I struggled to bring myself to continue to speak of Sharon in past tense so I thought I would just speak to Sharon. I hope this is okay.
Sharon, I want to be here today, I'm sorry I cant and I know if anyone would understand it would be you. I'm here in spirit as always. I miss you so much. Trying to accept that you are not here with us anymore hurts deeply. You always say "Stef, there is no sense in wishing" but I WISH I could just talk to you again. I would love nothing more than to hear your voice, to hear your boisterous, contagious laugh and to tell you that I love you one more time. I wish that I had said that to you on the phone on Tuesday the 27th April at 1.30 pm - but how were we to know that those brief moments would be the end of our conversations in the physical world for ever?
I still think I will dial your number and you will just pick up as always and say"hello Sharon speaking ..hi Stef, what goes?" .. I'm so lost without you.
I've told you many times that I believe you were sent to me by god - by the "universe". I'm forever grateful to Jodi, who introduced us to each other a few years ago through her online M.E. support group. It's so wonderful that we live in the same city and that we are both able to call each other.
Over time we spoke more often and slowly began to develop a strong bond, a beautiful friendship. We have shared together many stories, dreams and thoughts. We have laughed many laughs and cried many tears. We give each other the gift of genuine understanding. I know it brings enormous comfort to both of us to have someone to talk to, someone to confide in, to trust and to vent to about M.E., the wretched illness we both sadly have in common.
Even though we have not been there for each other in a physical sense - we are indeed connected and will be for eternity.
Sharon you are my best buddy, my sister, my guru. You are MY "person". You are always there and have stuck by me when no one else would.
When I think about being so alone and about how nobody understands, - it's OK because I know I have you. You have never abandoned me. You listen to the woes of my predicament endlessly when no one else can or will. You support me, counsel me and have given me a plethora of tools to carry with me - but NOTHING compares to you my friend. I have never, ever met anybody with so much unconditional patience. God bless your beautiful soul. I will always respect and admire you. Thank You Sharon. I can only hope that I have been half as good a friend to you - as you are to me. In a way, just writing this has given me all the reassurance I need.
I will never forget your immeasurable courage, strength and resilience. You are so powerfully inspiring. I will carry your marvelous words of wisdom with me forever. Sharon you are a fiercely compassionate, empathetic individual. You are so nurturing, thoughtful and giving. You have a heart of gold. I always tell you that you are super-human, simply because you are blessed with a rare analytical mind and supernatural coping skills. You are gifted with the ability to see that not all things in life are black or white; you are always able to effortlessly make sense of every point of view. You are headstrong and gallant. You are colourful. You are sunshine. You are love. Sharon you crack me up lady, and you make me laugh hard and smile until it hurts. I can hear that loud laugh of yours right now. I can hear you saying - "Hang on Stef, I just have to go and find my halo and put it on" (maybe no one else will understand that but I know you get it.)
You told me many stories about your life before you were sick. I know you were gorgeous, elegant, adventurous, fearless and indestructible. I know that you treasured the breathtaking beauty and serenity of nature. I know you were born with a hunger to experience and travel the world and a thirst for excitement. You told me stories of how you traveled, of how you jumped out of planes, went rock climbing, hiking and caving. Sharon, you told me often and again just last week that you were very lucky ..that you lived a full life before you were sick. You frequently told me how fortunate you were to have had the opportunity to do and see so much . I feel immense peace now in remembering you speaking those words to me.
In saying all this we must also acknowledge that illness has regretfully been a major part of your existence. You have lived with severe M.E. for over 20 years, housebound and mostly hidden away from the world. You tell me everyday how sick you feel. I know first hand the agonizing, relentless, painful suffering you valiantly endure 24/7. To really go into those details here today would be pointless because it is so very challenging for others to understand. Just know that all of your fellow M.E. friends DO get it. They are all so very sad Sharon, as are all the ladies at Amparo. There has been an outpouring of bereavement. I know that for the last few years you were doing much better compared to the early acute phase. I also know that over the last few months - you were not doing so well & you were finding it hard to bounce back. But I truly believe you were as shocked & as horrified as all of us, on that heartbreaking afternoon.
I find it astounding that after so many years of adversity you found inner peace and contentment. You told me that one of the ways you slowly achieved this was by listening to and meditating to Gregorian Chants & Bach. I know this music brings you much pleasure. This is something that you wrote to me one time that I would like to share - QUOTE "I have found that the chants take my mind to a place of stillness, clarity and peace. It is like my brain has been washed clean and clear by a cool mountain stream. It takes me to a place above what is going on in my body."
You told me many times that you don't strictly follow any one particular religion but I am very aware of how gloriously spiritual you are and that you are definitely a woman of FAITH. You believe that QUOTE - "All major religious traditions carry basically the same message that is love, compassion and forgiveness ... the important thing is they should be part of our daily lives." Dalai Lama
Sharon - you are simply gone too soon and too suddenly. Your caring heart would be very worried about the people here today. But don't worry Sharon - it's ok. We need you to rest in peace my friend. We will all continue to shout and make a big fuss about you. Your memory will live on forever.. You will be a soothing breeze that passes over me and at some stage, when I can look up at the stars in the night sky, I know you will be there.
I will never stop thinking about you or talking to you. My darling Sharon you no longer have to push so hard to JUST SURVIVE. I find comfort in knowing that your spirit has finally been released from decades of pain. Your sweet soul is free to slip away to wherever your body in this life could not take you. You can once more be as elegant and as graceful as your heart desires. Enjoy the tranquility my dear Sharon. May God bless you and keep you safe.
I'LL KEEP YOU LOCKED IN MY HEART UNTIL WE MEET AGAIN, I WONT FORGET YOU MY FRIEND.
THANK YOU. I love you always, Stef
I found this poem and I just know that this is something Sharon would say because she was so solution orientated.
She is Gone
You can shed tears that she is gone
or you can smile because she has lived.
You can close your eyes and pray that she'll come back
or you can open your eyes and see all she's left.
Your heart can be empty because you can't see her
or you can be full of the love you shared.
You can turn your back on tomorrow and live yesterday
or you can be happy for tomorrow because of yesterday.
You can remember her and only that she's gone
or you can cherish her memory and let it live on.
You can cry and close your mind, be empty and turn your back
or you can do what she'd want: smile, open your eyes, love and go on.
A light from the family is gone
A voice we loved is stilled
A place is vacant in the home
Which never can be filled
We have to mourn the loss of one
We would've loved to keep
But God who surely loved her best
Has finally made her sleep
A lending team in Sharon's name has been set up at www.kiva.org
It is called: 'Sharon O'Day's Memorial M.E. fund'
The best part about the Kiva donation would be that once the micro-loan is paid back, it can then be sent to sent someone else, so we could help lots of people in Sharon's name over the years. There is no pressure for anyone to contribute (or to do so with more than a few dollars), but this is something some of us feel that we would very much like to do, is all. We also invite anyone who knew or loved Sharon to contribute...as well as anyone who supports the plight of M.E. patients generally.
The minimum donation to Kiva is $25.
So to make a loan at Kiva.org in Sharon's name, you'd go to the Kiva.org website and follow these steps:
In honour of Sharon's links with genuine M.E. advocacy, donations can also be made to 'The Nightingale Research Foundation' in her name. To make a donation, please visit the NRF website.
There is no minimum donation required at NRF.