Developing a Limp

Our church is going through a series called "Developing a Limp" which follows the life of Jacob.  Basically Jacob, known as a conniver, comes to the end of himself and finds himself in an all night wrestling match with God.  During the struggle, Jacob proclaims "I will not let go until you bless me." God blesses him but dislocates his hip as a continual reminder of the unique encounter and changes his name to Israel, which means 'the prevailer'.

So lots of spiritual implication here, but it's also the physical details of the story that hit so close to home for me... My hips partially dislocate many times a day! The pastor asked me and a few others to wrap up the series this week by sharing a quick little testimony on how God is developing our limps, whether physically or spiritually.

So here's what I shared and it is a also brief recap of Ehlers-Danlos syndrome.

I have something called Ehlers-Danlos syndrome. It is a genetic connective tissue disorder that affects the way I produce collagen. Our bodies are made of 30% collagen and it is basically the glue that holds us together. Your ligaments, tendons, cartilage, G.I. Track, blood vessels and skin are all made of collagen. My collagen is faulty, so it is not very strong and is actually somewhat stretchy or weak. So basically the glue that holds me together isn't very strong. It's kind of like being Elastigirl from The Incredibles without any of the fun superhero parts. =)

In fact it is quite painful. People with the type of Ehlers-Danlos syndrome that I have (Type 3) often struggle from chronic joint pain and frequent joint dislocations.  The best way I know how to describe the pain to someone is that it feels like having a sprained ankle that won't heal in every joint in the body all the time. I have a lot of chronic pain every day in my ankles, knees, elbows, wrists, and jaw, however my worst affected area are my hip joints. When I walk my hip joints are partially dislocating with every step and it's very painful. I also deal with a lot of muscle fatigue and weakness as my muscles are working overtime to hold my body together. So I have chronic repetitive strain injuries… Especially in my hands and arms that make fine motor skills like writing, cooking or typing difficult as well.

There isn't a cure for Ehlers-Danlos syndrome except to manage the symptoms with pain medication and aids like braces, wheelchairs and crutches. So I do not walk very well or very fast and am in a wheelchair for long distances outside the home.

So I am frustrated a lot. I have a young family that I'm supposed to be taking care of and I am slowly losing my abilities and I am not yet 40. Ehlers-Danlos syndrome tends to get worse as you get older..... So I struggle on a daily basis with pain, guilt, depression, being overwhelmed with life and I worry about my future as things get worse. Although I have to say God has really blessed and provided for us in a major way. I have an amazing support system – I have a wonderful husband who pretty much takes care of all three of us. God has provided income, occupations where we can work from home and he has surrounded us with very helpful neighbors... So there is a lot to be thankful for.

My goal every day is to find a blessing in the midst of this huge burden. It is not always easy and I often fail miserably sometimes for weeks at a time. And I think a lesson that I am learning from Jacob is to keep wrestling until you get that blessing. Sometimes I feel like I'm stopping a little short and accepting defeat in the way of misery and depression rather than persevering with the Lord.

So I have good days and bad days… physically and spiritually. A lot of ups and downs. But I thought I would share one of my best days lately.

I was driving downtown. I am still able to drive short distances and I love to drive because it's one of the only ways I ever get to go fast! But I was picking my son up at the YMCA and was stopped at a stoplight in front of the building. Some event must have just let out or Signature School may had just dismissed because there were people coming and going, jaunting across the street here and there… teenagers running to catch up with each other. It was just basically a busy scene. And as I watched all the activity in front of me I became very angry. I often get very overwhelmed and realize how disabled I have become when I'm in the midst of "normal people" watching them do all they can do with their healthy strong legs.

I became angry and sarcastically started thinking to myself, "well, isn't that wonderful – that all of these people can walk and do normal things and cross the street and catch up with their friends." I even saw a gentleman maybe in his 60s or 70s walking for exercise with headphones and thought to myself  "well isn't that great.....grandpa's in better shape than me and I'm in my 30s!"

So I'm not in a good place mentally and I know it. Sometimes I will wallow in this kind of self-pity, but that day right there in front of the stoplight I just said a quick prayer, "God, I don't want to be angry about this. I cannot live my life like this in this state of unthankfulness". Honestly it wasn't even that heartfelt of a prayer... But instead of wallowing in the self-pity, I believe God honored me.

Because right there in an instant, God met me and gave me his perspective. Suddenly I was aware of a new insight. Although I didn't hear him audibly, I felt God saying to me "you know, you're looking at all this thinking you are disadvantaged… But I'm here to tell you that it's an advantage. Because if you could walk like all of these people… You would not need me to carry you the way I'm going to carry you throughout your lifetime." So in an instant I had a paradigm shift where God gave me an eternal perspective from his view and it was awesome! Instead of feeling beaten down and low I now felt thoroughly and truly blessed. I knew that he was going to take me through a deeper level of knowing him through all this.

I'm learning that crying out to God right in the moment of suffering and saying, "Lord help me!" Or "Don't leave me until you bless me!" Is that first step in wrestling with God. I've heard it said before that God's love is a perfecting love rather than a pampering love and I feel it.... For he disciplines those he loves. I never want my trials to be in vain. So I try to remind myself to stay over the fire a little longer and find that blessing even though there's this huge burden in my life. It's so worth it because his presence and fellowship when i'm suffering is so incredibly sweet. I cannot even describe it---it's so wonderful. I am blessed indeed and sometimes feel special that God has specifically hand picked me to win his "sick lottery". I would not trade this physical trial for anything because I know that God is walking with me in such a way that I would have never know before.

I don't have all the answers figured out and I still struggle tremendously with my attitude pretty much every single day. Disability is certainly a physical struggle… But the even bigger challenge is the battlefield of the mind to stay positive. But I know that God is good and I don't want to go on without Him.