Friday, September 14, 2012

Boozing and Whoring. . . and Planting Trees.

What really matters?
Do Something That Matters Today

Alrighty, readers. It's time for a heart to heart. I try to have a few blog posts a week and I'm sure you've noticed I haven't been doing that the past two weeks. This is because I have been at various doctor's taking care of some health concerns that have to do with my Ehlers-Danlos Syndrome. I apologize if some of this seems a little disconnected. I have been writing this for three days and have had to keep stopping because I became overwhelmed with bad feelings. It was extremely difficult for me to write this. I hope you will stick around till the end of the post. I believe I have an important message. I know it's long, but I hope you will read till the end and feel inspired to do something that matters today.

You know you have EDS
when. . . .
I had some X-Rays done last week and got to view them with the doctor on Tuesday. I was a little scared about what I would see. When he turned on the background light it was immediately evident that there was significant curving and damage in my spine and neck. He had a stencil type thing that he put on the x-ray and drew in red marker where my neck and spine should be curving and then told me at what degree those curves should be. When we go to my lower spine he said, "This should be curved. . ." and I felt relief at first because I was looking at a curve. But then he finished, ". . . in the opposite direction.

You know you have
EDS when. . . .
A bunch of times he said things like that I should be between 32 and 38 degree curves in certain places where I was measuring at 11. There is supposed to be a curve at the base of the spine for the tail bone, but mine is straight, therefore making sitting extremely uncomfortable. My neck is supposed to make a curve like a crescent shape. It does at the base but then goes completely straight toward the top. This cause severe headaches and migraines.

He found that I have arthritis in the base of my neck and top of my spine. This makes it very difficult to do every day tasks like driving. But the worst is sleeping. It hurts to lay my head on a pillow and I wake up every time I turn in bed because my neck hurts.

You know you have
EDS when. . . .
The straight parts in my neck and lower spine have also contributed to significant nerve damage that will continue to happen. It may cause me to lose feeling in my legs, etc.

I am not writing this to complain. I have already designated some time this weekend for my pity party. The reason I write is because I feel that I have something very important to say. I have been very disappointed lately in some family, friends and media as I have been watching myself deteriorate. I was listening to the radio and a catchy tune came on called "One Lyfe" or something with equally bad grammar in the title. I can't remember exactly what the name was or the exact lyrics. But they said something like, "you only have life so I'm going to enjoy the party and drink what's in my cup." This song in addition to watching some friends and family make bad choices has me feeling very unsettled about the message being conveyed about "living your life to the fullest." Life is not measured by the amount you put in yourself or let in yourself. It is measured by what you put out.

When the doctor turned on the x-ray light it was immediately evident that things weren't right. He may as well have put up signs that said, "Wheel chair," "Surgery," "Paralysis in legs," "No more bike rides with your children," "No more walking your children to school," "No more!" "NOTHING!" I should mention that I knew this was coming. But it's one thing to feel yourself deteriorate, and it's quite another to see the evidence and have someone else tell you. See, when you feel yourself experiencing the deterioration you can trick your mind into thinking, "maybe I just hurt that exercising today." Or, "Maybe I just did too much today and need to slow down." And that helps me to not believe that it is the deterioration of my body. But when I looked at the x-rays there was nothing I could do or say to my mind to trick it into thinking that it wasn't my time yet to begin deteriorating. I thought about my philosophy on life and how I believe the quality of life is not based on what I let in my body, but what I put out. So I chose not to let that fear in.

When I got home from that appointment I could have sat and cried about my future and about how I won't get to do certain things with my children. But instead I sat down at my computer and I downloaded the ringtone "The Final Countdown," which is Gob's magic show music from Arrested Development ;) This action helped me ease into my work day much better than crying.

I have to be realistic. I will never climb Mount Everest. I can't ride rollercoasters anymore. My husband will have to ride Space Mountain by himself from now on ;) I will never run that marathon that I tried to train for for three months. I will not have more children. But in accepting this and being realistic I've realized that life is not measured by Mount Everest climbs, or the amount of marathons run. It is not measured by the amount of drinks your have or the amount of drugs you do. Those are things you let into your body or subject your body to. My life is measured by what I put out. I won't climb mountains, but I can plant a tree on one :)

My mountains and marathons can be organizing charity efforts, volunteering at the food bank, visiting those in need of friends and companionship. Each of those things and many more is what will fill my life to the fullest. I want to fill my deeds and things that matter. Not alcohol and bad choices.

Please, do something that matters. Don't allow yourself to be brainwashed by the idea that living your life to the fullest means taking from the world whatever you can. It means giving to the world whatever you can. Stop taking and give a little more. I hope to live up to this no matter what physical condition I am in. That is why I started our sponsor program. I can't always help physically, but I can help monetarily.

Make your life significant no matter what your condition. Whether you have mental or physical conditions or no conditions at all! Make it count. You matter and you are significant. You can make a difference. Live your life to the fullest. Fill it by putting out, not taking in. Make it count. Do something that matters.


  1. Melissa, what a profound post. I absolutely LOVED it. I felt something similar when Seth was in the hospital and when he died. There were so many negative "whiny" posts on my facebook wall, and they seemed so insignificant to me. I have tried to come to the realization that they are not in the same place as me, and I should not judge them for it. But I decided I wouldn't post negative, insignificant things myself. I don't need to whine about my AMAZING, WONDERFUL LIFE! And I will try to put out more, because that really is what matters. Thanks, Melissa.

  2. Thank you, Jamie. I posted today hoping to let suffering people know they aren't alone. Don't get me wrong, I do plan to throw myself a little pity party at some point this weekend, but I don't have time for that just now. :)

  3. Oh Melissa, I am so sorry to hear that your quiet assumptions were confirmed by a doctor and that you received such heavy news but so awed at how gracefully you are accepting this new challenge.

    I know that I don't have any words that will change the situation but I do know that the Lord knows what you are feeling and will always be ready with an outstretched arm.

    Thanks for being willing to share your sacred feelings on the matter as a tool for helping all of us live better lives by remembering what is important. It is easy to get distracted, swayed and forget why we are all here.

  4. Wow, what a beautiful post. I am so sorry to hear about your ETS. I can - somewhat - understand. I have a rare heart condition, and when I was 14 got my first pacemaker/defibrillator implant put in my chest. It affects my everyday life somewhat, but not to the same extent as yours affects you. I remember telling people I wasn't afraid of dying. I knew I'd lived in a way that counted and the "out" was better than what I'd put "in". Again, you wrote such a beautiful post!

  5. My heart aches for you and your news. Thanks so much for sharing this with us and the reminder to live life to the fullest with the good and important things in life like our families.

    You have great vision and outlook! Hugs!

  6. What a sweet post. I am glad to have you around. :)

  7. Well said! You obviously are making a difference and putting a ton of good out into this world!!