A few things your friend with a chronic/terminal illness might want you to know but may not know how to tell you.
I am seven months in to dealing with a chronic/terminal illness and I would like to say that it gets easier but if I did, I’d be lying. Learning to live with the ambiguity of a chronic illness is something that nobody can really prepare you for. Some days you wake up, take your meds, and
So what is it like? Imagine every day when you get up you were given a random number coins that represented all of the personal, emotional, and physical resources you would be able to expend that day. The problem is you never really know until about two hours into your day whether you were going to get ten coins that day, or just seven. Occasionally you only get five, but some days, those very special days, you get twelve. The problem is, that you don’t get to know how many you have until you have already spent two or three of them. Tricky, huh? By the time you’ve gotten up, showered, got dressed and eaten breakfast, those simple activities have usually used up at least one (on a bad day two) of those coins. It is about then that you are able to take a self-inventory and see what you have left. Then you have to look at the coins you have left and the items on your calendar and “to do list” and see where you will spend your remaining coins.
What you come to realize is that sometimes things, even good things, have to be cut from the list because you are going to run out of coins before you get to them. You also realize that if you have something going on in the evening (having friends over for dinner or going ballroom dancing) you are going to have to save up a couple of those coins during the day so you won’t be a zombie by 8 pm. The difficulty comes when life does what life does and throws you a curve ball in the middle of the day. When that happens you have to decide in a split second how to reallocate the coins. Don’t worry, I usually have a coin or two stashed away just in case but when I spend those reserve coins it pretty much guarantees the next day is going to be a “five coin day” and that not much will get done. That is life with a chronic/terminal illness, it is about finding the delicate balance between the myriad of things you want to or feel like you must do and what you have the ability and energy to do. The game keeps changing and nobody tells you when the rules will change. Sound’s fun, huh?
Now a word for those of you who have family and friends who are dealing with chronic/terminal illness, we love you! It is your support that keeps us going. During the past six months I have discovered a few lessons for you that we want you to know but sometimes don’t know how to tell you. If you don’t mind, here are some of those lessons:
I often struggle with the fact that it is never going away. I appreciate your words of encouragement but we both know, unless divinely healed, this is not going away. I struggle with that almost daily. My struggling, and sometimes doubts, do not diminish my faith in God in any way. It is a reality that I have to deal with the fact that I’m probably not ever going to feel much better than I do today. When I look back at the past six months I can see my diminished capacity from a year ago and it is discouraging.
It is okay that you don’t know what to say. Actually, I don’t really need you to say anything; I just need you to keep hanging around. I was not really prepared for the “friends” who felt so uncomfortable by my illness that they almost completely withdrew. All things considered I think I’ve handled this pretty well. My attitude is mostly been very positive. I’ve shared my condition in a “matter of fact” way. We both know I am sick. There will be days when we don’t need to talk about it and when there is nothing left to say. That is okay. You being with me on the journey means far more than any words can ever express.
You don’t need to remind me of my limitations. Now on the other hand, I know my limitations, probably far better than you do. On the days when I need you to drive, I will ask. I see you looking at me out of the side of your eyes, checking to see if I’m overdoing it or pushing too hard. There will be some days when I do push too hard, but that is okay if I deem the occasion worth the effort. I know my limitations and I’ll ask for help when I need it.
Every day is different and it is damn frustrating. Just like I know my limitations, I also what you to know that every day is different. I cannot always predict how I will feel tomorrow or next week, and it is incredibly frustrating. I make plans assuming the best but then when I get up a day I needed to be a “ten-coin day” is actually a “five-coin day” and all bets are off. When that happens I am not angry with you, I’m angry at the illness.
I often feel like I am disappointing you. This lesson is the toughest to admit. Because of my limitations I often feel like I am letting you down when I cannot do everything I previously could. I know that this is irrational and that you understand completely but I still feel this way when I have to cancel an appointment, skip a meeting, or order pizza rather than cook dinner for my family. It is just another way that the illness reminds me of my limitations.
Let me do the things that I really want to do. This is the last one for now but one I want you to hear loud and clear. There are some things that are worth it to me to blow all my coins on. For me it is preaching on Sunday morning. Sharing the message in my local church is one of the things in my life that brings me the most satisfaction. I know that I’m going to have to take it easy on Saturday to save up the energy, and then I’m going to have to rest Sunday afternoon, and maybe Monday afterwards, but to me it is worth it. I have had to cut so much from my life because of this illness that the things that I enjoy doing I cling to like lifelines. So whether it is rebuilding my deck, going to a conference, or preaching on Sunday morning, if I think it is important enough to do it, please let me. I am well aware that tomorrow, or next month, or next year I might not be able to do it so I'm going to give it my all today.
I am living with, not suffering from, my illness. I am choosing to learn life lessons and let God speak to me during this time. Thank you for joining me on the journey. I remain:
Consumed by the Call,
PS. If you have a lesson you’d like to share please add it to the comments below. I’d love to learn from your lessons.