Thursday, October 28, 2010

I wish this for you, without the pain, without the tears.

I have discovered what it's like to have my "normal" create sadness within others, and I don't like it. Good Midwestern Irish/Germans do their right best to make other people feel comfortable, not make them cry.

My precious mamma sobbed this weekend. People I've never met at Mom's church teared up meeting me, and said that they are praying for me; I made my friends Aimee and Cathy tear up yesterday; and all of these tears just break my heart.

How does one adequately lie and tell others that everything will be okay - that things are good? I dread this upcoming surgery, as I have no idea how I will bolt it on through what promises to be exquisite discomfort. I simply can't bear to see more people sad about this.

Several people have asked about how one keeps a positive attitude when their body is literally falling apart before their eyes, and the answer is simple. The alternative sucks.

If the desire to curl up in a fetal ball in a dark room under a mountain of covers feeling sorry for myself ever takes over, I do it. Alone. Yes, that really happens, but who wants to be around that person? I sure as hell don't.

The sunny disposition is not an act, however. It's a newfound appreciation for the things in life I took for granted for 40 years. Don't become the person that makes others cry before you discover truly being present in your life to enjoy these simple things:

The color of the sky in the morning
Shapes that clouds make
The intricate veining of every individual leaf
The amazing softness of your pets
The warmth of a doggie belly
The sound of a bumblebee
Cultivating a garden
Basil and Ginger
The feel of a breeze
Moving a joint without pain
Yoga's Savasana
The breath of a sleeping loved one on your skin
The smells during cooking
8,000,000 other things

It's not focusing on the things I can no longer do that I loved, but discovering the joy in the things I've always had and never realized. I wish this for you, without the pain, without the tears.


  1. You are such an inspiration my friend! You are such a pillar because you've made "life" and "living" the central part of your being and your social interactions, rather than the disease that is robbing you of the things you've once taken for granted.

    So for that reason, I tear up because you are an example of what all of us should become - someone who enjoys and savors every moment, every sunrise, every flower, every friendship, every rainbow. And lately, I haven't taken the time or the moments to always focus on those things. And you've reminded me that I should!

    So my dear, those tears mean you are impacting hearts and making a difference one person at a time. So take them as a compliment. :-)

  2. Thank you, Aimee! I have been trying to find meaning and purpose in this big ol' mess, and you may have just found it for me.

    If even one person truly sees their life for what it is - a marvelous collection of people and pets, the simplicity and majesty of a single flower in a garden, the awesome power of connecting with a higher being - whomever one chooses that to be, each moment of pain will be worth it.

    We are not put on this earth to stand alone, and in this disease, I have found so many people willing to stand with me. That's an amazing feeling. You all give me strength. Pillars standing alone do nothing, but when set together, can create something really timeless and beautiful. Thank you from the bottom of my heart.

  3. Erin-i'm dedicating this picture to you-in honor of #3 on your list above.

    Keep fighting the good fight! We're all pulling for you on your journey.


I welcome you to add comments, suggestions and resources you think may be helpful for those with EDS, and always appreciate your thoughts and prayers.