There are several times during the year when holidays serve as alerts of how much my life has changed over the years. There’s Hallowe’en - when I think of being 12 and newly diagnosed and so excited I didn’t have an NG tube so I could eat candy. There’s my birthday - when I remember being in the hospital three times and unable to eat cake, and the list goes on and on. But for right now, there’s Passover. On the way to the first Passover sedar with my cousin, she asked me where I had gone last year for the sedars. I was thinking and thinking and thinking, unable to extract a memory, until I smiled and said, “Oh yes, I was in the hospital”.
This year I was not/am not in the hospital and have been fortunate to attend the sedars and be in the world and all of the wonderful things that come with not being attached to an IV pole. My diagnosis never seems to be very far from my mind, and I was thinking about it at the two sedars. On the first night, I was seated at the unofficial children’s table (12 - 21), though I had tried to finagle my way to the adult side of the table. I managed to sit right on the border, but groaned slightly at the idea of sitting with young people. Written down this sounds completely ridiculous, but here is what I’m getting at: with the average young non-IBDer, I have so little in common that it’s hard to hold a conversation past the subject of Facebook. For the most part, I’ve had such different life experiences that I do not feel connected to my peer group. Give me a three year old or an eighty year old and I’m good - but another 20 year old and I lose my words.
It’s not that young non-IBDers aren’t nice or good people or any of that. When I was 12 and diagnosed with IBD, I went from being that age to 86 in an instant and I no longer understand the metaphorical language my peers speak. Enter college: I still physically look like I’m 12 (and swear puberty hasn’t happened yet, thanks medications and sick guts) but would rather have a conversation with my professors than the kid sitting beside me in lecture. I think there is something so admirable about being your age and enjoying youth and all of that, it’s refreshing and very ‘in the moment’. So I try to grow backwards, or grow up, or whatever the correct phrase may be so I can enjoy being young too.
With my Crohn’s history, I spent more time looking forward than looking around. Clarification: I was sick so often and was too miserable in my own body if I focused on the present which led me to think about the many tomorrows that I hoped I would be feeling well. Maybe it’s that, I’m so trained to think ahead that it’s tough to just be 20 and in college.
There’s no great resolution to this post, because life is messy and I haven’t found a road-map to it yet. There’s not always answers, but that doesn’t mean that there won’t be, doesn’t mean that there’s no hope. I’m super, super, super, super lucky for the wonderful friends I do have and if any, it just makes me realize that.
Jennie
I can relate somewhat, although I didn't develop Crohn's until my mid-20s. I do remember feeling that I'd become much older virtually overnight. Being seriously ill, having life plans interrupted by long hospitalizations, and learning to live with the knowledge that, even when I was in remission, another debilitating flareup could always be just around the corner--all those experiences gave me a perspective that my healthy peers (and even elders who'd never coped with anything worse than a week-long flu) just didn't share.
ReplyDeleteNo longer could I sustain the illusion--so common among adolescents and young adults--that I was more or less invulnerable and immortal. For the first time, I'd run into a problem I couldn't either solve or escape from. Pretty humbling. Looking back, of course, I see the gifts of compassion and wisdom that I gained. But had anyone pointed that out to me in the middle of it, I would have wailed, "I do not want to *have* to be this wise."
It's so heartening to see what a difference 30 years has made in helping people of all ages who are struggling with the myriad effects of chronic illness to communicate what they're going through, learn from each other, and feel less alone.
So glad that you were able to enjoy holiday feasts this year. I guess that's the other major lesson I gleaned from having Crohn's: live as fully and joyfully as possible whenever it *is* possible, since none of us knows when that chance might be snatched from us.