C.D. Journals – September 13, 2021

Three years ago this summer I was diagnosed with Cervical Dystonia. I have learned a lot since then; about the disorder, about myself, about others who are going through the same thing. The disorder has progressed since the initial diagnosis and I can now no longer hold my head straight without the assistance of the back of a seat and/or my hands. It is a huge blessing when I can sit somewhere and have the back of the seat to support my head, even though it’s usually just for a few minutes at a time. I almost feel normal for those few minutes.

I am part of a Cervical Dystonia Facebook group where I have found answers, support, and encouragement. I have learned that C.D. has many different faces, and each person’s manifestation of the disorder can be different. There are others, like me, whose heads rotate and they can’t hold them straight. Some rotate left, some rotate right. Others have issues with tremors, some with tilting. Some have a lot of pain, some have a little pain. Some use Botox injections for relief and some are not helped by it at all. We have ALL, however, had to deal with the loss of our former lives.

We all have issues and challenges. Some require more adjusting than others and some have a more devastating affect on quality of life. When a challenge causes us to hide from the world, I’d say that’s a big quality of life affect. When we can no longer do things that we love, or even things that we’re just used to doing like brushing our teeth or doing dishes. THAT is a big quality of life affect. C.D. affects EVERYTHING! Especially when you need to use one hand to hold your head, otherwise you’re doing the thing with your head twisted hard to one side and using your peripheral vision. That hurts after a few minutes!

There are actually lots of ways to adjust things so that you’re just doing them differently, and other things not so much. For example, I’ve learned to tear the stems off of spinach leaves and crack eggs with one hand. But, folding and hanging laundry, and doing knife work in the kitchen are still very difficult. When I really need both hands, I rotate my body so I’m working on the left side of it (the way my head rotates) instead of in front. I cant maintain that for very long though. I have also learned to give myself grace, do things in stages, and rest when I need to. Sometimes I just want to stop because I’m uncomfortable – not in pain – just uncomfortable. Those are the times when I push through a little. I go a little longer with what I’m doing if I’m not done.

I have to say that I am incredibly blessed! I have an amazing, supportive husband who has a good job. I don’t have to work outside of home, and he helps me with everything! I have heard too many terrible stories of spouses who have left because they couldn’t or didn’t want to deal with a disabled partner. C.D.ers who are single moms or mothers of young children. My heart goes out to these fellow sojourners SO much! I know that circumstances can change in the blink of an eye, obviously. I’m sure that I will find myself in a different situation at some time. Different how, I have no idea, but the one constant in life is change.

I am so thankful that I have Jesus no matter what. I believe that He will always see me through, one way or another. I honestly don’t know how I would handle all of this at this point in my life without Him. Before becoming a Christian, when life got overwhelming I would just party more; drink more, stay out longer, do other things I shouldn’t have been doing – all to escape the overwhelm. Now I have a much healthier form of escape. I lean into Jesus and he anchors me, centers me, calms me. He gives me hope and joy despite circumstances.

I may have C.D., but C.D. does not have me. Jesus has me – secure in the palm of His hand and I have every faith that He is working this all for good. I have my own proof of what I believe and no one can take that from me. Life cannot take that from me. I have tasted and seen that the Lord is good and my evidence is irrefutable to me. I have (and still do at times) mourned the loss of my former capabilities and I’m doing my best to discover different ways of doing the things I enjoy. With the Lord’s and my husband’s help, I overcome the anxiety of being in public and go out anyway; to the grocery store, for a hike, to visit family, even out to dinner once in awhile.

Life is always a challenge whether you’re disabled in some way or not. Realistically, I think we are all disabled in some sense whether it’s emotionally, mentally, or physically, and whether it’s visible to others or not. We all have issues and challenges to deal with. The question is, “How much are we going to let it affect our attitude and thereby our quality of life?” You see, I believe that attitude IS everything. When I have a bad attitude I FEEL bad. When I have a good attitude I FEEL good. I may be having a painful, frustrating day and I get to choose how I respond to and deal with that. There are always choices, sometimes they just require a little thinking outside the box AND thinking beyond those voices in your head that tell you to do things a certain way.

I’ve learned a lot in the past three years and I have a lot still to learn. I still hope for healing, or at the very least remission long enough to go kayaking (I’ve always wanted to do that). In the meantime, it’s one day at a time and by the grace of God I’ll get through each day until the day I’m healed forever!

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