Paying the price . . . life with EDS and how you can SEE suffering

I had such lofty intentions of posting several days last week about Ehlers Danlos Syndrome and what life is really like with this disorder. The absence of posts is a perfect example of no matter how much I want to I really can't promise or plan anything. I never know how much energy I will have. I never know how much strength it will take to do one simple task or run an errand. By afternoon when my job as a wife and mother gears up I can barely function and have been needing pain medication just to move through the rest of the hours in the day. I have to lie down to rest a lot. Every single decision to take a shower, dry my hair, make the beds or do a load of laundry can leave me in so much more pain and unable to keep other commitments I might have made. If I push through something with adrenaline I pay a huge price the next day. Every single step must be calculated and the balance is nearly impossible to find in a body that literally changes and moves minute by minute, hour by hour.

Yesterday I attended a very special shower for my friend who is finally expecting a baby girl. I don't know if I have ever prayed so hard for someone to conceive. I had to be there to celebrate this new life. Last evening we had a party here for my niece Andie's sixth birthday. These were two social events in one day that were very important to me. On top of the heightened activity which increases my fatigue and pain level I also was reacting to something I ate. My tongue was swollen and had little sores. My brother came to the party here with cologne on. Literally as soon as he came in the door I could feel the heat rising up my neck and face. I began to fuss at him. I hate being that person who everyone has to adapt around. I know they roll their eyes and snicker no matter how much they love me. If you haven't experienced it you can't imagine it. The world around me is attacking me and making me sick. Church is perhaps one of the worst places. For some reason people like to smell really "good" for God. Just the decision to sit behind the wrong person can leave me tight chested and with a migraine for the rest of the day. The damage is already done once you realize it's there. You can't go back. You have to suffer the consequences.

Unwisely perhaps I had taken Danica to the movies the day before. For five years before Danica was born I had spent so much "alone" time with Delaney doing simple and fun things. Going to the movies at Washingtonian Center, feeding the ducks, browsing Barnes and Noble and having lunch at Corner Bakery was one of our favorite Saturdays. I have a little treasure box where we have kept all the tickets. I have never taken Danica to the movies just me and her, so my promise to take her, JUST her, to the first showing of "The Lorax" had to be kept. Because I have a car to use for the next week since my dad is gone in India I have made a bunch of appointments and plans including my preop appointment with my doctor over the next week. Driving my dad's little car is much easier than our big Pacifica. Friday, I made a critical error of not moving the handicap hang tag over from our car before Dan left for work. I resisted getting one, but I can tell you every step I can save is worth gold. My limited range of motion in my neck makes driving painful, exhausting and yes, even a little unsafe. Backing up in a parking lot is truly dangerous. Sitting in the theater I realized the loud sound was making that reverb in my head. Holding my neck to look up and forward was causing spasms. Half way through the movie Danica needed to sit in my lap because it's so hard for her to sit in the movie seat without it folding her up. Holding her brought tears to my eyes. How in the world did going to the movies become something hard?

Here I am today in bed. Every single joint in my body hurts. My muscles are twitching. For some reason my ankles and toes are screaming. My shoulders sublux no matter how I lay. My right wrist pops as I type this. This is the heavy toll due when I decide to participate in real life.

There are many links I could share that explain Ehlers Danlos Syndrome in medical jargon. None of them are really as effective at explaining it as listening to someone who lives with the genetic disorder. A dear EDS sister bravely shared her story and has given permission for me to post it here.



It is long. It is hard to imagine, but it mirrors my struggle in so many ways. She had the same surgery with Dr. Henderson that I had in November and also had the surgery I am facing later this month for tethered spinal cord. I cannot really put into words how this community of people who share in a unique kind of suffering have helped me to accept my diagnosis and also have given the hope of finding ways to improve my day to day living. Kristin is one of these amazing spirits who shows me how to move forward and yes, even embrace this gauntlet with a secret gift inside.

Simone Weil wrote, "The capacity to give one's attention to a sufferer is a very rare and difficult thing; it is almost a miracle; it is a miracle." Please, if you don't have the time now then bookmark this and listen to it when you can. I will post some of the medical discussions about EDS as I continue to share over the next week, but today I just want to impress upon you the deeply personal way my family and I are affected by EDS. This is where we are living now. Most of the time I love when people tell me how great I look or how well they think I am doing. It means I continue to be able to "fake it" for certain occasions. What means the most though is when someone sees me smiling but knows I am gritting my teeth. They offer me a chair when we begin talking because standing up my legs feel like jello, and I often feel like I might pass out. They offer to carry something that for most people isn't heavy but can literally pull my shoulder out of joint. They understand when they ask, "How are you?" that my answer will probably be something like, "Hanging in there . . ." and then I will quickly move on to the next topic. Truly, looking at another's pain and not turning away is a rare gift. Sitting still with someone who hurts ALL the time and not making it about their suffering but about all the other things they still are in spite of it is a miracle. I am so blessed to have these kinds of people in my life.  I have been thinking about the Bible story found in Mark 2:1-12.

"And again He entered Capernaum after some days, and it was heard that He was in the house. Immediately many gathered together, so that there was no longer room to receive them, not even near the door. And He preached the word to them. Then they came to Him, bringing a paralytic who was carried by four men. And when they could not come near Him because of the crowd, they uncovered the roof where He was. So when they had broken through, they let down the bed on which the paralytic was lying. When Jesus saw their faith, He said to the paralytic, “Son, your sins are forgiven you.” And some of the scribes were sitting there and reasoning in their hearts, “Why does this Man speak blasphemies like this? Who can forgive sins but God alone?” But immediately, when Jesus perceived in His spirit that they reasoned thus within themselves, He said to them, “Why do you reason about these things in your hearts? Which is easier, to say to the paralytic, ‘Your sins are forgiven you,’ or to say, ‘Arise, take up your bed and walk’? But that you may know that the Son of Man has power on earth to forgive sins”—He said to the paralytic, “I say to you, arise, take up your bed, and go to your house.” Immediately he arose, took up the bed, and went out in the presence of them all, so that all were amazed and glorified God, saying, “We never saw anything like this!”

The man could not walk, but his friends believed so much in the miracles Jesus could perform they carried him and went to great lengths to find him healing. The passage specifically says "When Jesus saw THEIR faith." If you know and love someone who is sick and hurting there is no greater gift than picking up their mat and taking them to Jesus. I know there are hundreds of you who are praying for us. You take the time to read this blog, sit for a few moments in our world, and you lift us up. Your attention to our suffering is not in vain. I humbly thank you for caring for my family and I for so long. I am amazed, and I will continue to give Him the glory for this story, the simple narrative He writes in my brokeness, a small price to pay for what He prepares for eternity.