When you've lived with chronic illness long enough you get used to telling people in your life to go have fun without you because of various reasons, ranging from "I'm too exhausted to get out of bed!" to "I'm glued to the toilet today!" or my perennial favourite, "You guys go on without me, you'll have more fun!".
And so people do go out and leave you behind, and after awhile it becomes a norm, and no one knows what to do with you if you were to come along anyway... And after many years you find yourself alone on the sidelines watching people come and go on adventures that don't include you, and people don't stop to think of what you might like, and even you don't know what you want out of life any more.
You just don't want others to suffer because of you. You don't want to slow people down on a holiday or ask them to take your feelings into consideration on a trip. You can't do the adrenaline pumped activities, you feel too fragile. You don't have the athletic body required to climb a mountain, battle a river, cycle cross country. You are exhausted beyond belief but push on with a smile, and when it falters no one understands. How can they when deep down in their hearts they truly believe that they'd have had so much more fun without you? And your pain and your meds and your side effects and your dietary restrictions? You're cramping their style, limiting their fun, a constant reminder of someone more needy than needed... You know deep down in your heart you're an obstruction to happiness no matter how fleeting that happiness may be, so you step aside. And you pretend it doesn't hurt, and that you're fine. Absolutely fine.
You want to meander through museums but no one wants to do that with you, it's just too dull. You want to sail on a cruise but that's for old fogeys, no young person with tonnes of energy would choose to do that. You want to stay on a liveaboard ship and snorkel and scuba for a week or just lie and gaze at stars all night but nobody understands your crazy love for the ocean, they'd rather stay on land.
You stop asking if anyone will do anything with you... Nobody really wants to... The kids grow up, family members move in their own directions, everyone has ideas of what they enjoy, and it's rarely what I enjoy any more. You know you feel lonely yet you tell yourself not to, it's just the way life is in a busy world. I look at my youngest son, on a 2 week liquid diet to boost his protein absorption, and I know that I'll be spending many days with him in the years to come. Just the two of us. The Crohnie Club. I understand what he feels, I know some of what's in store for him, I weep because I am sad for him. But he is as cheerful as ever, and he rarely complains.
I know when he's tired and listless and irritable that he's not doing well, I know because I feel the same. I expect far less from him because I know how hard it is... I hope some day he'll understand that I understand, and even if he'll never climb mountains, go white water rafting or cycle cross country he can walk through a museum with me, he can go on a cruise with me, we can both stay on a liveaboard ship and just lie on deck and do nothing. And that would be fine. Absolutely fine.
But some day he too will find his feet and his own way in the world and manage the best he can to be all that he can. Somehow I suspect he'll do a better job of it all than I have. I really do think he'll be fine. Absolutely fine.
Thanks for reading,
Pav
5 days ago
