What a Crash Looks Like

On the suggestion of my friend Claudia, I recorded a video of myself on the third day after the FDA Drug Development Workshop on ME and CFS. I had to swallow my pride to do this. Even some members of my family have not seen me in a full-blown crash like this. But Claudia was right: the FDA needs to compare how patients looked at the meeting to how we look and feel afterwards. It’s not pretty. But I also know I am not the only person struggling through a crash right now, so here goes:

Here is what I looked like at the FDA Meeting on April 26th:

photo

And here I am on the third day after the meeting:

 

 

This entry was posted in Commentary, Occupying and tagged , , , , , , , , . Bookmark the permalink.

31 Responses to What a Crash Looks Like

  1. Katrina Berne says:

    Jennie, I appreciate your speaking at the meeting and for sharing the aftermath on video. With the exception of those we live with, others don’t usually see this part of our lives as we pay the price of being out in the real world. The norm, if there is anything normal about crashes, is to hibernate and become invisible. Thank you for being honest, courageous and real. I hope you come out of this crash very soon.

  2. John Gabor says:

    Thank you Jennie for sharing this. I am just coming out of a crash myself that started last Monday evening. I wish that your’s is a short one.

  3. ixchelkali says:

    This was a good idea. Thank you for doing this, Jennie, and for testifying at the meeting even though you knew it would result in a crash. Crashes are scary because you never know how bad they’ll be and how long they’ll last. Thank you for speaking for those of us who weren’t able to testify. Thanks also to your husband for giving the support that made it possible for you to go to the meeting.

  4. Kathy says:

    Jennie, I’m so sorry about your crash, but it’s not surprising. It was a huge sacrifice to your health to attend this meeting and do all the prep work you have done. I really appreciate all the effort you have put forth and I hope you recover quickly. I guess we can all sympathize, because we have been there. Take care of yourself.
    Kathy

  5. Lou Burkett says:

    Yes x I celebrated your glam photo and now feel the same about this exposé. Brave and clear- pay back for being yr fabulous self with ME x Lou

  6. Suzanne D Vernon says:

    Even knowing you for as long as I have, and having seen you crash before at our Cold Spring Harbor meeting, it is still heartbreaking and a powerful reminder of the reality of ME/CFS. Thank you for being at the meeting and being such an articulate and beautiful spokesperson for our ME/CFS community.

  7. Melanie Etemad says:

    I can understand why you wanted to do this video. Its hard to see you this way – but also hard knowing that even not on a crash day you have to struggle continuously with this debilitating illness. You’re one of the strongest people i know — that you’re able to keep a positive attitude and to commit yourself to a cause that impacts others and works to find a cure. You’re loved by so many!!! You’re a modern day Hero!!!! Love you!! Hope you come out of this one soon!

  8. Waiting says:

    Thank you for doing this, Jennie. Not an easy thing to do, exposing the reality of this illness. The aftermath is shocking, and real. All of us patients, and I’m sure caregivers, can relate only too well. And thank you for the tremendous efforts you always make to give a voice to this illness. You are a fantastic, intelligent advocate.

  9. Sally says:

    Well done Jennie for speaking out. You are one in a million for doing so. Sorry about your crash…. sending gentle hugs your way….

    However I think the tide is gradually turning. Little bits of good news are filtering out these days and more funds are being raised and awareness created about the need for more Biomed research.

    My daughters’ school is putting up 4 teams of relay runners for the Belfast Marathon here in N.Ireland on 6th May, and their chosen charity this year is Invest in ME – how proud does that make me? My daughters suggested this charity because of how the illness has affected me – and the school ran with it! (‘cuse the pun!)

    I’ve written a post on my blog about their efforts here:
    http://sallysewssometing.blogspot.co.uk/2013/04/my-daughters-charity-run-for-invest-in.html
    Hope it is okay to include the linky… if not please just take it out.

    Lots of things like this going one all round the globe, and soon we will make a real difference and hopefully soon our illness will be taken seriously by more and more medical professionals and the long overdue answers and understanding will be delivered.

    Look after yourself Jennie! And well done!

  10. floydguy says:

    Thanks for putting yourself out there and communicating what a crash looks like. We might disagree on the CAA but I appreciate your effort to make this video for the world to see.

  11. Sasha says:

    Thanks so much for going to the meeting, Jennie, and articulating our viewpoint so well. It shouldn’t surprise me to see the difference in another PWME after such intense activity but I’ve never seen another PWME in a crash and, ridiculously, it’s a surprise! Nothing I wouldn’t see if I filmed myself but we’re all so isolated and our crashes happen in such privacy… I agree that it’s really informative for other people to see this. Thank you. I hope you feel much better soon.

  12. Mary Dimmock says:

    Jennie

    Claudia was right. The FDA and DHHS do need to see this because it is impossible for healthy people who are not affected by this disease to understand the reality of that patients live with.

    Thank you being such a courageous advocate for ME patients.

    I hope you are feeling better soon

    Mary

  13. Jill says:

    This is what an ME crash/relapse/progression looks like. Not after traveling to Bethesda or writing blogposts. Being unable to use all the rooms of the house, or being unable to leave the bed. Being unable to decide what what to eat or being unable to eat or swallow and needing a feeding tube. There is no excuse for ME to be called or combined with CFS.

  14. Lolly Vann says:

    Great job Jennie! You offer three important gifts. First, you showed up to the meeting and made a presentation. Second, you offered an inside view of a modified crash (you are better than you were after resting for a couple of days). And third, the insights you share of the experience are articulate even though it may not feel that way, and you a clearly demonstrate how difficult it is for an organized articulate, wonderful woman to get it together to start once more to climb up that hill to participate in the world. Here is to you, and hope you bounce back to your better norm soon.Thank you for your efforts… I hope they will be productive.

  15. Jane L. says:

    Thank you, Jennie, for all of your efforts for the conference. It amazes me how much quality advocacy you are able to accomplish. Your video of the aftermath of engaging in the equivalent of a small fraction of a healthy person’s day mirrors what I experience. It conveys how invisible the illness really is to those outside immediate family members (including doctors). Thanks again.

  16. Rich Carson says:

    Jennie,
    Thank you for sharing this with the world. You are such an inspiration to me for all the you do for patients everywhere. Good luck getting through this crash. You deserve vibrant health.
    Rich

  17. Lisa Myers says:

    Jennie,

    You are brave and amazing. Thank you for sharing this–it’s heartbreaking, yet so familiar to me and I’m sure to all of us who have suffered the aftermath of something we were determined to do regardless of the consequences. You are a hero and an inspiration–not just for our community, but for anyone coping with adversity who can look to you as a picture of integrity, resilience, and heart. Thank you.

  18. Josette Lincourt says:

    Thank you, Jennie!

    When someone calls on the phone when I’m in the crash zone, they don’t understand what it means, why my voice is different, why I won’t stay on the phone. People see me walking in my neighbourhood (with either 2 canes or a … rollator thingie) and think and say that I’m doing better, but sometimes I will ask back: “How many weeks, even months, since you have seen me around?”

    Cavern days for you: hoping that you will recover fairly quickly. Wait it out, as you say!

    Being somewhat older than you, recovering from crashes takes longer and longer, and it seems that the level of functionality prior to the crash is never entirely regained. (And I remember the days when some doctors who thought that some of us “wimin” just wanted to stop working said that we would be better after 60: damn them all!)

    Take care, one day at a time!

  19. Mary Silvey, RN says:

    Jennie,
    At least you made it to the meeting, and did a great job speaking. I had run errands the day before, and struggled at 5 a.m. fighting panty hose. Yet, I could watch the webcast laying down, taking better notes, thinking clearly. Thanks for illustrating a crash, and understand that no one has seen you in one. No one has seen me either, and know you possess great bravery to do so!
    Blessings to you this day, and hopefully this crash will be a shorter one than anticipated. Mary

  20. Jennie,

    Thank you so much for presenting at the meeting and for making this very brave, but telling, video. I forward it to my hubby and my health coach so that they could better understand.

    Hope that you continue to recover as quickly as you can.

    It also was wonderful to finally see your beautiful face. 🙂

    Warmly
    Tamara

  21. Billie Moore says:

    Jennie,

    Thank you so for doing this. Now we all have to send it out to all patients we know, all those on panels at the meeting who are not patients, and anyone else we can influence by their having seen this. We can repay you for your courage in doing this video if we can send it along to hundreds of people – then they can send it on till we reach thousands, including many doctors. It is a powerful way to stop the invisibility.

    Billie

  22. Susanna. H. says:

    Thank you sincerely for sharing this.

    Susanna

  23. Thank you for sharing that, Jennie. I’d like to point out that Jennie is well-schooled in coping; she used a wheelchair and spent time resting in bed, and she has a caregiver (as I did), her husband. And yet, with all those accomodations, she still ended up in bed for days.

    The video of Jessica Taylor above is also important NOT because it is an example of a crash – IT IS NOT – but because it is an example of the worst cases of M.E., which tend to get forgotten because nobody sees these patients except close relatives. The woman who posted it has nothing to do with the young woman in the video, so don’t be put off by the message – look at the video and learn.

    Thank you again, Jennie, for showing what it cost you (and your husband) to attend and participate in the FDA workshop. We need urgency in dealing with this disease. Both Jennie and her husband, and Jessica and her family, deserve better.

  24. Nan Talbot says:

    You don’t know me Jennie, but I appreciate all of your hard work and also feel it was very brave to make your crash film. I’m sure people who see me on a good day just don’t GET it, either, when I have to cancel plans at the last minute. Close family have sometimes seen a crash, which for me includes many neurological symptoms, but most people haven’t because like you, I’m home during the worst of them. Some have seen me all but become paralyzed when a crash is very sudden (one man offered to my husband to do CPR – yikes) Seeing it still isn’t enough for many to believe how bad it is, though, and I’m sure I’m perceived as being That Crazy Woman who doesn’t like people. After all, they’ve SEEN me walk around fairly normally, so why does that crazy woman suddenly need a scooter, for instance. Won’t write a book! Again, thank you! I also appreciate seeing the film featuring a young woman severely ill with M.E. Its heartbreaking, and people should be aware of the entire spectrum of M.E.

  25. Jennie,

    Somehow I missed this post but I saw your follow-up. You’re so courageous to have recorded this, not just because you look (to us who know a crash) as if you’re in a crash, but because I know the incredible effort it took for you to even talk for five minutes. But you did—as a way to help the FDA and others understand what life is like for us.

    With the greatest respect and thanks,
    Toni

  26. Thank you so much for sharing the toll we pay for putting ourselves out there. How many times have people said to me, ‘but you LOOK so good’, not knowing the price I pay to look good for that short visit, not seeing the hours, the days after. Thank you again.

  27. Marnia He Sapa says:

    And in my experience, this is a low-level crash, not a smash-crash. Glad you’ve got help. Crash solo is bad.

  28. Donna Pearson says:

    Jennie, you are so intelligent and articulate that even in crash-recovery mode, you STILL come across as intelligent and articulate.
    You are an amazing woman and I have nothing but respect and admiration for you.
    Donna

    • Jennie Spotila says:

      Donna, that is one of the nicest things anyone has ever said to me. I feel the exact same way about you.

  29. Rivka says:

    i did not attend the fda meeting, but i did do some prep with other advocates for the meeting. i did it all from home. and even tho i did not attend the meeting, i’m deeeeeeep in a crash. simply due to the energy output of the minimal advocacy work i did in prep for the meeting. and it is over a week since the meeting now. in short: i can’t think at all. can’t move much. feel like hell. no idea when it will end. there is always the fear the it won’t end. that the crash will become the new norm. i know so many who this has happened to. — rivka

    • Jennie Spotila says:

      Rivka, you did a LOT of work prepping for the meeting and helped others prep as well. And I completely understand your fear of never coming out of the crash.

Comments are closed.