This has been hard. I’m only 4 months and 22 days removed from having the back of my head split open from Chiari Decompression surgery.
There were a couple of weeks in May that were easier than others where I felt like I was healing and I was going to be OK. It felt like the symptoms that I suffered with before weren’t going to come back. When people asked me how I was doing I’d say, “I think it worked.” Well, now I just think it is better, but not fixed. But I still don’t really know.
I have intense fatigue that usually sets in with a pain episode. When the fatigue sets in I can barely keep my eyes open. This usually happens at least once a day – usually mid-afternoon. I try to compensate with it by having caffeine, but I feel like that just delays the fatigue and makes my body react in other negative ways.
I lost a bunch of weight after the surgery. That was mainly due to the fact that I just couldn’t eat much. My esophagus was in bad shape from being intubated, and so were all those little muscles in my neck and the back of my head that were cut open so chewing and swallowing weren’t my favorite things to do. All the weight I lost is back (and then some).
This is a reminder, at least for me, that we just don’t know what people are facing in their lives. I go to work. I get stuff done. I still smile. I have successes and failures. I play with my kids. I work in the yard. But occasionally I feel like I’m being tortured in a prison of pain. Nobody can see it. Nobody can feel it. And as the scar has healed on the back of my head, many will never know the journey I’m on.
This surgery, this recovery, and this pain have opened me up to explore my issues in new ways. Ways I didn’t plan on being opened up (quite literally and figuratively). I was active before. There were times where I was in great shape! I worked hard in the gym. I’ve actually been exercising regularly since my youth. I used to train to stay in shape for sports, and then this translated into some great habits that have lasted through the rest of my life.
For the last year, I had to hit pause on exercising. My arms and shoulders have continued to deflate, as the inner tube around my waste continues to inflate. This has been a major ego check for me. I had no idea how much pride I put into being active, strong and in shape. I had no idea how much I loved working hard, burning calories, getting stronger and then seeing the rewards of all that hard work in my body. I was idolatrous, prideful and ungrateful, and Lord I’m repenting of that now. What a gift it is to be able to exercise and pursue good health – and do it pain free.
So now I’m wondering what my new normal looks like. I think there’s a good chance that I continue to improve and maybe the head pain I’m still having is just from healing. But I’m thinking I may live with pain for the rest of my life.
Something mysterious happened during my surgery and I came out of it with nerve damage in my left shoulder. If I were to reach to grab a coffee mug on a high shelf in our kitchen, well, I couldn’t do it with my left hand. My range of motion is only about shoulder-height and I can’t lift my hand above my head. The muscles around my left shoulder don’t engage like their supposed to. My joints are sore, and the muscles are atrophying. Physical therapy seems to help, but the progress is extremely slow. I’ve found myself back in waiting rooms of doctors as we seek to decode the mystery of my sheepshank shoulder. Doctor’s waiting rooms are like the DMV – especially in the middle of the workday. You find yourself looking around and wondering how you could consistently, and without fail, book your appointments on prison field trip day.
Man, I need prayer. If you want to pray for me that’s great, but I actually mean I need to be praying. I realize that nothing has changed my heart and my viewpoint on life quite like prayer. In prayer, I’ve found myself on my knees, crying, but knowing that God would make everything right. Maybe not today, but one day. In prayer, I’ve asked for the same things over and over – sometimes mundanely but sometimes passionately. Then, completely unexpectedly and without warning, I realize God has answered my prayer. It is always in his own way and not in exactly the way I would have orchestrated it. That’s fine though, since he’s God and I’m not.
So here’s my prayer. Lord, I guess I’m fearful about my future. You tell me that fear and your love can’t co-exist (https://www.bible.com/bible/97/1JN.4.17-18). I believe, I know, that you love me.
You also tell me not to worry about tomorrow, but pain today causes me to worry about tomorrow. How can I get past that? I know you’ll provide all I need and more. But how long will pain be a part of my life? I want to play basketball again. I want to ride a bike. I want to swim. I want to have more than one arm to rely on. Would you grant me these? Help me stay motivated to do the hard work. Help me stay focused so that I don’t over-compensate for my pain and depression with food.
I want you to take this from me, but if you don’t, I’ll love you and I’ll change. I’ll evolve into a new me with you leading the way.