Tuesday, January 24, 2012

Behind the Mask

A few nights ago, after a rough day, I asked George to pass me my Nikon N5100. I asked him to look at me for a test shot. He had no time to pose or to think. He was tired.  Here is the shot.

Then I told him to take group of photos of me with the same framing as the test shot. I did not pose for the photo, but looked into the lens just as I was.

Then, I did what every person with chronic illness does. I put on a mask. I re-did my pony tail. I put my glasses on, I stood up straight and I smiled. Here is the shot.


I know I still look don't look 100% with the puffy eyes, but the change is significant from the first shot of me even though they were a minute apart. Out of the several photos, he took, I asked George to pick the photo of me that he felt he sees the majority of the time. He picked the one of me above this one...without the glasses. In the second photo, you see my mask.

Yes, those of us with chronic illnesses put masks on all the time. We are pros. I put one on for my wedding day because I wanted to enjoy my day and not talk about how bad I felt the whole time even though I had cried in the bridal suite just before entering my reception. I think sometimes we don't even realize we have put on a mask because often that mask is for our protection.

I realized that I have unintentionally had a mask for a couple months online with everyone I keep in touch with online including my chronically ill friends (which is rare) as exemplified when I candidly discussed My Journey With OCD . In general, I have a lot of challenges with my illnesses and I share those; I also choose to focus on the joys in my life. I feel my Facebook statuses and blog posts reflect both. But, I don't tell the absolute nasty truth every day to every person.

There are so many reasons why, but the first one is that generally people don't and can't handle the truth. I learned to measure what someone really means whey they say "how are you?" because often times it is a question they don't want the real answer to. There have been times when I've shared my reality nad I've seen people pull away.

I am not sorry you cannot handle to hear about my life. I have no choice.

Second, when I do share how much I am suffering, people think it is an opportunity to share with me what they think I should do about it. I think I speak on behalf of everyone who has chronic illness that in this specific scenario, we hate this and find it incredibly hurtful. When a chronically ill--let me say that again slowly chron-i-cal-ly ill person shares about their suffering, what they need is encouragement/love/support, not an "idea" you heard about somewhere. As Ecclesiastes in the Bible says there is a time for everything; when someone reveals how deeply they are suffering, that point is NOT the time to be the umpteenth person to say "Have you tried/heard about XYZ?" 

Daniel Hurley, MD wrote a phenomenal book called Facing Pain, Finding Hope: A Physician Examines Pain, Faith And the Healing Stories of Jesus. He wrote,

Even as we acknowledge the power of positive thinking and the presence of true grace, our human spirit can endure only so much before it is beaten down from its long-suffering.

This excerpt explains why lately, I have had a mask on to most everyone in my life except for George.  I am beaten down. I am fragile and quite vulnerable: my body's betrayal & abuse, my situation, my jail cell, the nature of my illnesses. I am in survival mode. "Kelly Protection Mode." Lately almost daily, I ask God if today might be the day he would free me from this body and every time He says "No, I have plans for you." With His grace, I respond with "Okay. I trust you. I am listening." (Please note: I am not suicidal. I love my life. I'm just really weary. And I know God understands and can handle my weariness.)

Did you see George? Did you see his face? When I look at his face, it breaks my heart.

Beaten down. Long suffering. Need love. Need encouragement.

Mask back up. For my protection...

8 comments:

  1. HI Kelly,

    Thanks for sharing in such an authentic way. I can relate with so many of your posts and want to let you know you do have another friend. I'm all the way in south GA, but relationally, I am not far.
    George sounds like my wonderful and loving husband. So caring that it makes the pain hurt worse sometimes.
    Anyway, I look forward to your updates and will try to get a video together for Project Hope.
    -Kristen @honeybeekc

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    1. Aw, thanks Kristen. I really appreciate your words. I agree...we may be far apart physically, but the beauty of this space is that we can form relationships that overcome that distance! I look forward to getting to know you better. I'm excited you will try to get a video together for Project Migraine Hope. I'm trying to put one together myself and it is harder than I thought! Take care,
      Kelly

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  2. hi kelly,
    Wow, can i relate to this! I am so guilty of the mask. I'm extra guilty of wearing it now and overdoing it. My Oto is always lecturing me about it. He says stress and exhaustion will ramp up my symptoms big time and of course, he's always right. But what do I do? Keep on doing the same ol' thing. Isn't that the definition of insanity? Anyway, thanks for sharing. The pictures really brought it home.

    I am also coming to grips with the fact that migraines are becoming more and more a part of my life. I was winning that battle for a long time. Now, not so much. I'm trying to fight off my third now in about 8 days. I took some pain medicine but not the big one, Relpax, yet. I'm the only one home with kids and I'm trying to hold off. So far, I'm making it. I'm gonna take a break from the computer but want to spend some more time on your blog.

    `nicki

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    1. Nicki,
      I am really bad about overdoing it too. I'm stubborn!
      I don't think the mask is necessarily a bad thing. I think in some situations is is necessary--to protect ourselves like I mentioned. So I wouldn't feel guilty!

      I'm so sorry to hear that your Migraines are becoming more a part of your life. :( Big gentle hugs to you! THat is terrible. Do you see a neurologist/headache specialist? Since Relpax is a Migraine abortive/triptan, doctors say it is usually best to take that first thing as soon as you get your symptoms because it has a better chance of aborting the Migraine. However, you know what works best for you!

      Oh my, things must be so difficult being home with the kids and having a Migraine! Bless your heart! I hope this weekend gives you a chance to relax.I'm so glad you commented! Sending gentle hugs your way.

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  3. Hi Kelly.... I watched your video the other day, and was moved to tears....weeping, really. I could relate to more than I wish i could, ( I have had migraines since age 4-5, chronic for the past 10 years or so...unable to work the past 7...) it was when you mentioned you " used to be " a speech language pathologist that I wept. Myself, I " used to be " an OT....when I was able to practice, it was my DREAM JOB ( as YOU know... I heard it in your voice! ) It was really powerful to me to see you say this...and to just witness YOU " GETTING " it... I know i don't have to explain the pain/frustration/loss of this! THANK-YOU for your strength and courage to post all that you do....and please know I am willing to connect anytime if I can be of any support/ encouragement to you!!! I loved what you said about " that ME is gone now... " God has a new plan for us now....
    gentle ( unscented ) hug, Tanya lol

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    1. Tanya,
      Oh, wow, that is incredible that our lives have so many things in common--that it has been so long since we worked at a job we loved & that you are an OT! Wow! Thanks for sharing! I'm so sorry to hear you have been chronic and disabled for so long. I'm so glad that my post impacted you! I'd love to have you create a submission for Project Migraine Hope! I'm sure your story is just as powerful and will touch another's life. To me, that is what PMH is about!

      Thanks for being so kind and offering support! The feeling is mutual. As you said, God has a plan....though I believe this was his plan all along (I know that is hard for some ppl to swallow- it was hard for me to swallow a few years back and I'd go off on rages if anyone suggested it to me!) But, regardless, God is with us and I find a lot of comfort in that!

      Look forward to hearing more from you. You can find my email in the "Contact" tab above if you'd like to connect via email.

      (((Hugs!)))

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  4. Hi Kelly,
    I thought I replied to this post before, but it looks like I haven't.

    I understand the weariness, and feeling beaten down. You are amazing, with every thing you deal with you can find a way to encourage others and bring hope in other's lives when they need it most.

    It is hard to recognize you from the first photo to the next.

    In George's picture I see strength. yes, a bit tired. Mostly he looks like he really doesn't want to have his photo taken...like...OK get on with it. : )

    Your photos are eye opening.
    I just posted on my Create to Heal blog a mask that I decorated. The outside of the mask is what I show people...other than those closest to me...mainly Stuart. the inside I decorated how I feel on the inside, behind the mask.
    I think you might find some similarities in there.
    http://createtoheal.blogspot.com/2012/02/my-mask-me-inside-and-out.html

    having a rough time myself right now. I hope things are better...and I sincerely hope that many days in the future your Mask face is the face you really are feeling.

    love and hugs to you my friend.
    wendy

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    1. Hello Wendy!

      I thought it was time to show what I really looked like instead of what I believe everyone thinks of when they think of me in their head.

      Before I posted this, I asked George what he was thinking in the photo, and he said "tired." I don' think he cared much about getting his photo taken. I'm always taking photos of him. :)

      I will take a look at your masks! I'll be interested to see them. It can be quite different what the world sees and what we deal with.

      I'm sorry you are having a rough time right now dear. :( Stuff is rough here too.

      Double hugs and love to you!

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