candleNineteen years ago today, I woke up with a sore throat. I ignored it, as I usually did with pain or illness. I was 26 years old, a “superstar” at my law firm (according to a performance review). I don’t remember if I went to the gym that morning as was my habit, but I got ready for work and walked to the office.

Four hours later, I had a high fever and could barely stand.

My life changed irrevocably that day, although it took me many months to begin to comprehend that. I had to give up my career. Then I gave up walking long distances. Then I gave up my apartment in the city. Then I gave up driving. You get the picture, I’m sure. Usually on this sick-aversary, I would reflect upon the length of time that has passed. In fact, last year, I told the CFS Advisory Committee, “This Saturday is the 18th anniversary of the day I got sick. If I had given birth on October 6, 1994, that child would now be an adult.”

But this year, what weighs upon me is not the passing of nineteen years. It is the burden of this nineteenth year of my illness itself which occupies my thoughts. This year has tested me physically, emotionally, and spiritually. I feel my heart becoming more and more burdened by the suffering of those around me, and by my own suffering too. I have drawn upon reserves of strength that already feel tapped out. My spirit is gasping for breath and longing for just a little bit of rest.

The number nineteen has a positive significance in my religion. The central tenet of the Baha’i Faith is Unity, especially the unity of humanity. The Baha’i Faith draws upon many concepts from Islamic culture (although it is a separate religion). In the Arabic Abjad numeric system, letters correspond to numbers and so each word has a corresponding numeric value. The word vahid means Unity, and the numeric value of vahid is 19. Unity, as a spiritual concept, is not just needed between groups of people, but within families and within oneself. To achieve unity, we need clarity, patience, communication, understanding, and justice. I am struggling to bring those qualities front and center in myself right now because all the trials and difficulties of this nineteenth year have left me in a daze.

I looked a long time for a prayer that I could say today, one that would express my need for strength as well as my belief that there is hope in this life – even after nineteen years of illness, even after a year that has stretched me past my limits. This is deeply personal, but I would like to share that prayer with you today. And if you feel moved to do so, I would be grateful if you could offer up a prayer or good thought for me, too.

O God, my God!  Be Thou not far from me, for tribulation upon tribulation hath gathered about me.  O God, my God!  Leave me not to myself, for the extreme of adversity hath come upon me.  Out of the pure milk, drawn from the breasts of Thy loving-kindness, give me to drink, for my thirst hath utterly consumed me.  Beneath the shadow of the wings of Thy mercy shelter me, for all mine adversaries with one consent have fallen upon me.  Keep me near to the throne of Thy majesty, face to face with the revelation of the signs of Thy glory, for wretchedness hath grievously touched me.  With the fruits of the Tree of Thine Eternity nourish me, for uttermost weakness hath overtaken me.  From the cups of joy, proffered by the hands of Thy tender mercies, feed me, for manifold sorrows have laid mighty hold upon me. With the broidered robe of Thine omnipotent sovereignty attire me, for poverty hath altogether despoiled me.  Lulled by the cooing of the Dove of Thine Eternity, suffer me to sleep, for woes at their blackest have befallen me.  Before the throne of Thy oneness, amid the blaze of the beauty of Thy countenance, cause me to abide, for fear and trembling have violently crushed me. Beneath the ocean of Thy forgiveness, faced with the restlessness of the leviathan of glory, immerse me, for my sins have utterly doomed me.  – Baha’u’llah


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24 Responses to 19

  1. Ess says:

    Jenny, I’d like to give you a giant hug–thanks for being so open and sharing this with us. My dad, in serious debilitating illness like ourselves, had an amazing cartoon picture–that of a stork about to swallow a frog–but the determined, hopeful, never-give up frog stuck its hand out of the stork’s mouth, and reached for the stork’s neck in squeeze-fashion–determined to save itself. Frog was ‘not’ giving up! Never Give Up was the caption of the cartoon. Quite the frog. Never give up! We won’t . . .

  2. Sue says:

    Jennie, You do so much for all of us, you deserve a little rest. Prayers said.

    And thanks for sharing that great prayer with all of us. I don’t think there’s one among us who could not identify with what’s in there.

  3. Ess says:

    Sorry for the misspell, Jennie!! I hope you get some rest too.@Ess

  4. Melissa says:

    sending prayers and a huge hug your way, Jennie!

  5. Trina says:

    It’s hard to believe it has been 19 years. From the outside looking in, I see such grace in the face of something I really can’t comprehend. You have been tested in so many ways. Yet you lead an extraordinary life in so many ways – you play such an important part in the lives of David and your family, your friends and the CFS community. I’m happy and blessed to part of your life and pray that you find the rest, both physical and spiritual, that you need. Love and hugs.

  6. Gabby Klein says:


    I had tears reading your piece here. Unfortunately, we have been dealt a hard task but it’s people like you who show how to graciously and courageously cope and move on. Like you, I too rely on my religion to give me strength. It helps knowing that there is a higher purpose in life. Just think about all the people you have helped along the way. Thank you for everything you do.

    • Jennie Spotila says:

      This is what I live about blogging: I show my heart and receive these comments in reply. Beautiful.

  7. readyforlife says:

    20 years of suffering in Seattle…I feel ya. Prayers for all of us, we sure need them.

  8. Kathryn says:

    28 years here, and I thank you for your service to us all. I thank you for the courage you show in your sharing. I thank you for this beautiful and inspiring prayer. Abide with us. May we live up to your example.

  9. Kathy says:

    25 years for me. Jennie, you have a beautiful mind and a lovely soul. You have given so much to us and this latest issue has disturbed you greatly. When you said you were ‘shaking with rage’, I knew how hard you were taking this IOM contract. And I feared that this intense emotional energy would wipe you out. Please take time to heal yourself. I am praying for you!

    • Jennie Spotila says:

      Thank you so much, Kathy!! The IOM situation has been a terrible stress in an already stressful year. I am trying to take care of myself and manage all this stress a little better.

  10. Mary Miller says:

    Jennie, I was wondering if it would be alright to share this, I will be giving your blog infomation on the website mentioned above that is for folks with Fibromyalgia, fibromyalgia+; My own journey started Late October, Early November, 1986, with a 99.9 degree fever that left me weaker and weaker. By Feb. I could barely walk. My parents ended up shipping me from SF (I went to UCSF Parnasis where many of the ‘ground zero’ folks from Lake Tahoe went in 1986 that year by the way) to Seattle. I too, was 26 years old. The fever only dropped after massive amounts of the RIGHT antibiotics, but the fatigue never went away.

    Now my body is forever on guard, either in a flare or concern for threatening to be in one. Pain levels run from 6-10+ (seems at time 15). Sleep in THE most impossible task ever faced, that brings us back to only remember of sick anniversary, but also the sadness for what our lives could have been if our illness had not robbed us of our memories, our strength, our bowels, our energy, our family, our friends, and sometimes our own faith in ourselves, in the end.

  11. I was infected in early 2003. I went through a blazing acute infection 6-8weeks later, followed by a short dormant, very healthy, period (I even ran a triathlon, April 2003). 05/06/03: I became symptomatically ill. The past 10 years have been a roller-coaster.

    I tested HIV+ multiple times. Yet to this day, I remain HIV- (by antibody, viral load, Western blot, AMP-RT, two blood shipments to the CDC, 1 to the Washington DC pathology labs, and my trip to Paris to meet with Nobel Prize winning scientist Luc Montagnier and his Parisian colleagues to provide my blood samples ~ facilitated by the UN.).

    I had never even heard of “CFS” back in 2003, and I had also never heard of the “AIDS Dissident” movement. I still reject my $ham diagnosis of “CFS.” I am a “HIV-Negative AIDS” patient, and it is statistically impossible that my clinically-undiagnosed, sexually-acquired, microbe is rare.

    It’s 3,807 days later. I spent years learning how to meditate at the local Buddhist center. I say “The Serenity Prayer” a lot. Those first few years I thought I was dying, dying, dying……but, as I reflect back on it all, I realize that I am truly blessed. It’s when my life began, as it has truly been an awesome (bittersweet) adventure.

    A contact at the CDC advised me to “Take it to the Press.” So, I did. I have been published 18+ times on 4 continents. I particularly like the momentum building @ UK PROGRESSIVE MAGAZINE –> http://www.ukprogressive.co.uk/the-aids-like-disease-seldom-mentioned/article20891.html

    Keep up the fight. Let’s start a revolution in 2013. Vive La Revolución‏.


  12. Hi Jenny,

    What a moving post, thanks for sharing! We are all so grateful for the tireless work that you do. However I really want you to put your health first! Try to have faith that what you can do without pushing yourself too hard will be enough. Your contribution ripples out and becomes bigger. Even without all the amazing work you do you are a wonderfully worthy human being.

    Wishing YOU healing and peace! (with a big side serving of love and hugs)

  13. morwen says:

    I was bed bound for thirteen years then discovered that I had lyme disease. The NHS tests are not worth the paper they are printed on, you need to get tests through a lyme doctor, it is expensive, but oral antibiotics can be bought on the internet. When taking them you must start on a miniscule dose and build up slowly because the die off will make you much worse, if you have a severe reaction to taking antibiotics, that you did not have before you were ill, chances are you have lyme. It takes two years or so, similar to TB or Q fever, though the TB protocols are now so good that sometimes it can be treated in six months. Lyme requires long term treatment and the health insurance companies don’t want to pay for this, so lyme is called an acute illness. Here is a link to a film trailer that will give you lots of info, I am not fully recovered but I am much much better and know many people who have got back to about 90% of their normal selves. http://www.youtube.com/watch?v=sxWgS0XLVqw‎

  14. Anne says:

    Jennie, sending you many thoughts. With all you have to go through, you still do so much for us in the ME/CFS community. You are a fighter! And we immensely appreciate all that you do.

    I had my own 12-year “sick-aversary” the other day. A lot of suffering and sometimes despair in my life too, so I know just what you mean when you write that our souls/spirits are gasping for breath.

    Many thoughts from Sweden!

  15. Homa says:

    Love you Jennie. Thank you for sharing your heart amidst tribulations. You inspire me.

  16. Eileen says:


  17. pat fero says:


    The work you do for all of us bleeds energy. It is a gift to be able to do what you can do and be so good at it.

    Within the larger picture of all the issues and rancor and some small joys you have a place that has only your name, and contains the beautiful images that give you peace.

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