It’s difficult for me to admit that I’m not being honest with people. I really don’t like talking about my ailments. Indeed, my primary reason is that rather give glory to God for his many blessings. Sometimes I’ll drop hints about how I feel but try to close the subject off. “God is good even when I don’t feel good.” My other reasons include: I don’t think most people are interested in the details even though they do care about me; I think it would be boring to most people; some of my ailments are difficult to explain; I don’t think people would understand; some are too difficult to even believe. (I have trouble understanding and believing them.) I’ll give you a taste, just one example.

Sometimes things will abruptly change for me, usually for the worse. Two months ago I started a whole new set of symptoms. This list includes fever, petechial rash, strange headaches, sensitivity to light and noise, muscle pain and weakness. Additionally my appetite has decreased further still and my fatigue has increased further still. All these symptoms persist in addition to the numerous problems which left me disable and feeling very much like a freak over six years ago. The entire list of symptoms is much longer.

I wonder if people are being honest with me. Do they really have time, are they really interested in hearing the details about how I feel? I have some friends and acquaintances who have their own list of ailments. Perhaps I’m better prepared because of my illness and in a better position to patiently listen to them. And, although I will listen to them and show them compassion, I can only take so much before I’m worn out.

There are a few people with whom I do share how I feel. I talked to God about my ailments although not as much as I should. I don’t want God to think I’m complaining about His will or that I don’t trust Him. Of course I talked to my doctors but sometimes I think this doesn’t do any good. Not that my doctors aren’t good, but there are no cures for some of my diseases such as my nerve damage. Then there is my family who are my personal caregivers. My wife has been with me during procedures where I screamed with pain, my face in a pillow, tears rolling down my face. My children have seen me at times when I was so fatigued due to dehydration or low RBCs that I couldn’t even lift my head off my pillow. I have many more and much worse examples of things that my wife and children have dealt with because of my illnesses.

My wife and children are heroes. My wife is so gentle, tender, compassionate, and patient. She listens as I complain, discusses courses of action to alleviate my pain, serves me great food throughout the day, manages double duty of activities where I can no longer help, puts up with my bouts of irritability, and much, much more. My children, too, are immensely helpful. They help with mundane tasks of my daily care without complaint. Although it may seem like a small thing to them when they bring me lemonade and a bowl of corn curls, it is an immense help to me. They are somehow not embarrassed to have a dad who looks like a freak (always dressing like it’s wintertime) and sometimes acts like one. I am so proud of my two teenaged boys who would no doubt rather be with their friends but who choose the responsible thing, staying with their dad, pushing his wheelchair, getting him a cup of coffee, and ready to serve me in anything that I would ask them. It brings tears to my eyes. I feel like I don’t deserve them, my wife or my children, but they love me, and this they do very well.

Forgive me for abruptly ending this journal entry. I’m not exactly sure how to continue it or where to end it. Part of the reason is due to a new pain medication which I started today. It is spacing me out a little. I’d like to discuss the theology of all this, how God calls us to show compassion, to serve without complaining, and to find their courage and strength in God. I don’t know how things will end whether it be this article, my life, or the world. But I know that God who is the author and finisher of my faith has a perfect plan for everything.

“The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge. He is my shield and the horn of my salvation, my stronghold.” (Psalm 18:2)

A related article would be Man in the Mirror.