Well, it’s been six weeks since I had surgery to make my achalasia manageable. I had my “How are you doing?” appointment with my surgeon this week and got the green light to go out into the world and act like a normal person. I have been cleared to go back to rowing, to lift heavy objects, to give eating salad a try if I feel like it. In short, the rest of my recovery is up to me.
But, I still have achalasia. And I always will. And because it is such a rare condition, I have also been introduced to the world of Rare Diseases. On social media, I’ve read several posts from others who are members of this “I didn’t ask for it” community, and I’ve got mixed emotions.
For the most part, I like being identified by my groups. I’m a Rower. I’m a Professor. I’m an Obsessive Pie Baker. I’m a Christian. I’m an Alto. I’m a Wife. I’m a Mother. Heck, I’m a Grandmother.
And, well, now I’m also a Rare Condition Member (that sounds awkward). How about Achalasia Survivor? (No, that doesn’t quite work since I still have the condition.) Achalasia Sufferer? (No, that sounds too dramatic. Surgery has given me a new lease on life.) I’m an Achalasia Aware Person? Hmm. Awkward, but okay.
To me, my recovery has been nothing short of a miracle. For the first few weeks, I was concerned. I still couldn’t eat. And, then, I started to get better. I stopped throwing up clear, sticky Ghost Busters-like goo. I started successfully eating firmer food. I stopped having horrific esophageal spasms several times a day. I ate some pasta. A cupcake for my birthday. And then a few days ago, I ate thin crust cheese pizza. And it didn’t hurt. (Or not much anyway.) I am on my way.
So what’s all the belly aching about? Can’t I just forget about the Community I Didn’t Ask to Join? They don’t need me. There are plenty of sufferers out there who can moan and groan about the horrors of achalasia. They can be the ones to run the 5Ks to build awareness. They can be the ones to fight for research to better understand the mystery of this rare condition. They can be the ones to post their sad stories on You Tube. They don’t need me. I’m better now.
Except, they do need me. And, surprise, surprise, I think I need them, too. They are the ones who helped me understand what was happening to me. The ones who let me know that I was not alone with this wacky condition. The ones who said they had been helped with surgery. The ones who still had questions. They are the ones who understand what it’s like to have achalasia.
I’ve never come face to face with anyone who has achalasia. I only know them virtually. But when I read their stories or watch their videos, I get it. I understand. When I read posts from people who are afraid of having surgery, I understand. When I read academic articles about achalasia, I want to weigh in with my own opinion. I know you all. And you know me.
Sure, this is a community I didn’t choose to join. But it’s a welcoming community nonetheless. For better or worse, I’m a life-long member now. So to my new-found community friends, take heart. You are not alone. And, get this! Because of surgery, yesterday for the first time in about a year, I ate a salad. And I rowed today for the first time since surgery. Who knows what next week will bring?
March 19, 2017 at 12:07 am
I’m so glad you are recovering so well. Me and my desmoid tumor are also a member of the rare disease community. A lot of what you wrote resonated with me. I have also never met a another person with a desmoid tumor face to face, but have met a few online. It’s amazing to be around in a time where that is possible. I hope you continue to heal well. Best of luck to you.
March 19, 2017 at 9:44 pm
Thanks, Christine! Here’s to health and the future for both of us.
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March 19, 2017 at 2:50 am
Great story ðð¾
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March 19, 2017 at 3:44 am
I’m so glad to hear you are recovering from surgery well. I also have achalasia and whilst I wasn’t looking to be in a special club, I’m incredibly thankful to not be alone. I’m 7 months post HM and wrap – I’m still on a mostly slop diet but I’m OK with that and I am definitely better off since the surgery.
I named my achalasia Ralph – it seemed to have a personality and figured if we were going to be stuck together, a name might help him fit in better. Ralph disgraced himself about an hour ago with an ice cream, sent it hurtling into my handy slop cloth and my hubby, Mum-in-law and I remarked at what a pain in the bum Ralph is being today and then we carried on as normal.
I wish I didn’t have to contend with achalasia but if I’m honest, I feel like a better person for having the disease. Ralph has tested me again and again and with the support of friends and family, I keep on keeping on. Like you, I don’t see it as surviving – I’m just living. I’ve adapted to life with Ralph and I am definitely the same old Vic… maybe just a bit tougher now. Ralph is part of my life but he doesn’t define me. I’m a surveyor, partner to a great man, fun loving plonker who wants to be a tap dancer and a good friend to some amazing people… and most importantly for me, I’m happy.
I hope your recovery continues to go well and you keep on doing the things you love like rowing. I’m glad you took the time to write about your experience and thoughts on achalasia – I certainly find comfort in knowing other people understand what it means to have this disease.
All the best. Vic.
March 19, 2017 at 9:47 pm
Vic, thank you for taking the time to write. It is a crazy condition, isn’t it? I’m sorry you have to deal with “flying food.” I have not had that very often. It’s interesting to me how so much of the condition is consistent–yet there are key differences for different people. Hang in there! Tell Ralph I said he needs to lighten up a bit, okay?