I Am Among the #MillionsMissing

IMG_5469I miss hiking. Getting into the woods, to the enveloping strength of nature, was my favorite thing to do. I wanted to through-hike the Appalachian Trail.

I miss more weddings, graduations, and funerals than I can count.

I miss having children.

I miss being a lawyer. I miss having a career, and working to support myself. I miss the money I could have made, and the lifestyle it would have supported.

I miss my independence. I can’t walk more than a couple minutes and I can’t drive at all. I miss being able to just go to the store when I need something.

I miss having the capacity for normal life.

I miss having multiple projects and priorities, and excelling at all of them.

I miss feeling like I am in command of my body.Thumbnail.-MillionsMissing-US-205x300

I miss believing that every doctor will understand my disease and try to help me.

I miss waking up in the morning feeling rested and ready to start the day.

I miss being spontaneous, instead of meticulously planning every outing for the right timing, right distances, right escape plan.

I miss traveling. I miss believing that it is possible to see what I want to see in the world.

I miss the friends who have fallen away.

I miss throwing dinner parties.

I miss going to concerts.

I miss all the things I am too sick to learn: how to ride a horse, how to shoot a target, how to weave rugs, how to camp backwoods, how to grow food.

Poster-2-300x225I miss having the ability to help others. When my friends and family go through difficult times, I miss being able to bring meals, visit hospitals, clean houses, babysit kids.

I miss having a full, rich, healthy life.

The lack of medical progress, which has sentenced me and millions of others to a life that is less than,  is a direct result of our government’s failure to invest in ME/CFS research. The research dollars must flow. That is our only hope of escape from the life sentence that is this disease.

I am one of the Millions Missing. Don’t let me disappear.





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13 Responses to I Am Among the #MillionsMissing

  1. Tillie CLAPP says:

    Thank you for the work that you are doing on behalf of everyone else. I am so sorry that you had to experience this. But your skills and education and drive are being put to excellent use in your advocacy.

  2. Rivka says:

    Made me cry reading this.

  3. It is funny how different our posts are! Such different people we are all – and I do miss most of the things you miss, though I already had the children when CFS happened, and had one more. But they have not known me, except the boys when they were too little to remember.

    God, I miss being able to walk around the block, to say nothing of a nice mountain hike.

    I hope 2016 doesn’t go by like all the other years.

  4. Cheryl says:

    I’ve been missing for 30 yrs. I’m propped up in bed trying to distract myself from pain looking on the internet. I am glad for #millionsmissing. I sent shoes–I wish I could do more. But I must confess it has brought me down too. Everyday I just spend getting through and I don’t look at the forest as I am too busy dodging trees. But the big picture has been put in my face. And I now reflect on all I am missing. I am grieving the friends I have lost to this plague. Those special fellow travelers on this strange and painful ME journey that are no longer here to help make it less lonely. I am grieving many of the same things Jennie wrote. I wanted a family. I didn’t want to spend my life in a small room in my parents home. My mother now deceased. My father deteriorating fast. What will happen to me? Other family don’t get it, don’t want to.
    This should be a day of feeling happy that we are coming together to be heard. But instead I just feel so full of grief.

  5. Sarika says:

    Jennie, you are so good at conveying your reality and ours. I feel the same as Cheryl. This should be the day of strength, and all I can feel is sadness. Sadness for myself and fellow suffers. I can not imagine the strength to put up with this as long as you have. You still keep going. You are a hero! I know I sound like a ball of mush today and I refuse to hold back: my emotions, my anger and my disappointment with the people and government who have all the ability and tools to fix this and make a difference and have chosen not to do so.

  6. Carolyn Lubker says:

    Thank you for expressing yourself (and so many of us!) in a way that makes our condition real and understandable. The sad irony is that with this illness, my ability to explain my experience to others is very impaired.

  7. Amy Divine says:

    Jennie, you are such a gem. Thanks for using your talents to represent us all.

  8. Chris Williams says:

    You are a champion for so many of us. I’m better off than many patients but have gotten worse over time. I am so sorry for all that you and others have lost, and grieve for my own losses as well. I can’t be out in person today – I haven’t gotten over two days on the Hill in early March. I feel like my knowledge and skills are wasted and I would like to be more of a resource to the cause than I am able. Thank you so much for all you do.
    Chris Williams

  9. Nancy Sadja says:

    Jennie, you speak for so many of us. Thank you! You are remarkable.

  10. Cathy says:

    With your usual succinct eloquence, you capture in words what so many of us feel. I am grateful for your writing.

  11. kathy d. says:

    Thank you for everything you do for the ME/CFS community. We appreciate
    it a lot and you are making a big difference for all of us. Whatever happens
    with the government funding and research, whenever it happens, will have
    been spurred on by your hard work.
    There is so much loss with this disease. I don’t expect too much any more.
    My horizons are narrow. Can I read a good mystery, read blogs, try to
    read my newspaper? Read emails? Try to eat a decent diet — don’t
    always succeed here, a lot of work.
    You are making a difference for us.

  12. sofia gurovich says:

    Jennie, ” Thank you ” I can’t express enough gratitude from me for tremendous work you are doing. You are our voice and everything you said in you beautifully written post made me feel like if I was speaking. except I wasn’t , I was crying. Thank you ! Thank you ! Thank you !

  13. Marc Simon says:

    I can really relate to missing hiking and the outdoors. If I got well I’d probably go car camping and hiking in the first week – there is so much to explore and do. Then I would move someplace nicer because I’d be afraid the improvement in my health would not last.

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