Wednesday, March 9, 2011

The Perfectly Abnormal Condo

By Candice, SpiroChicks Contributer

This past weekend, I paid a visit to my Grandparents’ house. When you’re chronically sick with a rather complex disease, packing for even a short trip can be quite the feat. Though it took a terribly long time to accomplish packing myself up, I was proud of the fact that I made it through the process in once piece, and that I had condensed my belongings to what seemed to me like a measly one suitcase, six cloth shopping bags, a garbage bag and a small laundry basket. Yet to my surprise, upon arriving to pick me up, my Grandparents marveled at the amount of things that were coming along with me.

“How could such a little girl need so many things?” My Grandma said with a smile, as she gazed wide-eyed at my pile of loot. 

“After we’re done loading your bags into the car, I hope there’s still room left to bring you too!”

I followed her stare back to my belongings and scratched my head. It didn’t seem so bad, considering that when I’m preparing to take a day trip to visit my doctor every week, I pack as though I plan to move into his office. This was the first sign that while I’ve been living with another lyme patient, I’ve gotten a little too used to being perfectly abnormal.

Fellow SpiroChick and lyme patient, Ashley, and I have been roommates for over one month now. It’s been a pretty fantastic experience. We’ve of course hit many of the trials and tribulations of both life and of being a Late Stage Lyme patient, but we’ve taken on those obstacles together. Living with someone who’s had to adapt to the same lifestyle that you have, and who has battled the same battle that you fight on a daily basis, provides an invaluable sense of understanding and comfort. It’s also quite possible that it provides a false sense of normalcy. To us, our daily routine now feels “average”, because both of us live it out together under the same roof. When in reality, we might as well be living on Mars.

We often joke that we’re never going to be able to find men that are going to want to date us, considering our odd acquired habits and rituals. After all, how many guys would be thrilled to come home to a girlfriend doing yoga on the living room floor while she’s got a pot of millet steaming on the kitchen stove?  A magic eight ball would probably tell me “outlook not so good”.  

Yet, I love it. I love our perfectly abnormal life. A year or so ago though, I used to resent it a little. My daily life would feel as though the world was spinning on around me while I was stuck stagnantly in place, trapped in some alternate reality. Now I realize though that your world is what you make it. My world may be small, full of monumental obstacles, and entirely stripped of what it used to be, but it was never going to grow if I didn’t accept it. Once I did, I found that though my world is quite difficult and far from normal, it’s unique, and there are still plenty of opportunities to enjoy it. That is, if you’re looking in the right places.

It’s far easier to fair when you’re living with someone whose reality resembles your own. While I stood in my Grandmother’s kitchen this weekend, she looked on apologetically with a crinkled nose, as I prepared a glass of liquid medication and counted out the smelly drops as they fell from the dropper.  

It must be wonderful to have a roommate who has to do these kinds of things too.” she said. I nodded in complete agreement. 

“Nana, off of the top of my head, I could probably think of 15 reasons why living with another late stage lyme patient has been nothing short of fabulous.”

15 Reasons Why Two Late Stage Lyme Patients Make Fabulously Strange Roommates

1. Most average roommates have designated cupboards for alcohol, or for easy-to-prepare foods like hamburger helper or macaroni and cheese.  Instead, you and your roommate each have entire shelves sectioned off for pills, potions, and medication. Your easy to prepare “go-to food” cabinet consists of cans of organic white beans and jars of raw sesame seed butter. 
2. Lyme patients often have to set alarms in order to wake up on time, remember to take pills, or to assure they eat enough throughout the day. When two patients live together though, you can double as both roommates and walking, talking alarm clocks. You typically know when it’s getting to be late and your roommate hasn’t taken her adrenal medication yet, and she also knows that it’s time to eat again when she starts to smell your brussel sprouts steaming from two rooms away. 
3. With all of the cabbage, cauliflower, broccoli and brussel sprouts that you both typically steam, the average person might walk into your house and think it smells like the dog has some pretty gnarly gas. But when your roommate comes home from the grocery store and gets a whiff of a cruciferous veggie steaming, she drops everything and starts cooking too, because beef and cabbage sounds like its going to hit the spot. 
4. You and your roommate both know “the face”. You know, that face that you get when your brain starts to feel like it’s full of hot wax and cotton balls. When you have company over and one of you starts to glaze over and zone out, the other picks up on it pronto and takes over the conversation. Typically, “the face” goes unnoticed by guests and “normal” folks. They just think you’re just quite an intent listener.
5. Your roommate doesn’t think it’s weird that you constantly feel motivated to go lay flat on the front lawn. In fact, she encourages it, and will lay out there with you despite the status of the weather reports. There’s even a name for it: Earthing. Your neighbors probably half expect you both to start hugging trees, but it’s all good. 
6. You both sort of instinctively know what might be helpful to one another. When your roommate throws out her back, you know how long her hot rice pack takes to heat in the microwave. When you're packing to head out to the doctor, you know what to throw in your snack bag for her in case she gets hungry too. When she's got somewhere to be and she's running short on time, you know how to cook the lunch she was hoping to pack. Whereas asking just anyone to do such things might be a little overwhelming if they aren't fluent in "lyme patient".  
 7.  Your roommate knows that when she catches you lathering up your arms and legs with the same coconut oil you just cooked your veggies in, you’re not planning to roast yourself too. To the both of you, cooking oil doubles as a perfectly acceptable organic body lotion. 
8. When you open up the gnarly bottle of pills that makes your kitchen smell like stinky feet, your roommate doesn’t cringe and check to see if something curled up and died in your garbage disposal. Instead, she hurries to the cupboard because the pungent smell reminds her that it’s time to take her afternoon dose of pills too. 
9. When you send out a friend or a family member to pick up some groceries for you at Whole Foods, you typically have to set aside 15 minutes to explain things like what swiss chard looks like, how to pronounce “quinoa”, and which aisle you might find gluten free oats. But when you hand your roommate your grocery list, she glances at it, then merely asks, “Rainbow chard or red? I like rainbow, myself.”
10. Instead of rolling her eyes every time some off-the-wall thing makes you sick, your roommate can often warn you before it even happens. If you’re on a walk and she breathes a whiff of gasoline before you do, she responds with a “quick, cover your nose!”. If she’d been two seconds later, she’d probably would have had to peel you off of the sidewalk. But if that had indeed happened, she wouldn’t have griped about that either.
 11. While most of the population believes that a scoop of vanilla ice cream is the ingredient that completes a fruit smoothie, you and your roommate think that a beverage isn’t perfectly blended until you’ve added an avocado. Most might scoff at adding anything green to their milkshake (unless it were mint chip ice cream), but you both don’t consider it to be complete if you haven’t.
12. While alternative healing therapies and the notion of “detox” seem outlandish to others, you both fully embrace them. At this rate, between her unconventional use of organic coffee and your use of a neti pot, you two are bound to make Roto Rooter jealous.
13. When the guy who's installing your new furnace comes in to test it out, he ends up sticking around for a while and chatting with you both, because he thinks you're intriguing. He then proceeds to ask what the lime green awareness bracelets that are sitting on your dining room table are for, and when you tell him, he asks if he can buy a few. He informs you that you both have a "righteous positive energy". 
14.  You and your roommate are oddly able to laugh during occurrences that most of the general public would find quite unnerving. When your heart starts going into strings of irregular heartbeats and your blood pressure cuff starts flashing all sorts of different abnormal codes and symbols, she doesn't get frustrated or anxious as she drives you to the doctor. Instead, you find things to laugh about on the way there, and you both even manage a giggle when you're forced to inch out of the car as though you're 112 years old.
15.  When you wake up and tell you're having a bad morning, you roommate can actually fathom what that might mean.  She doesn't think that "bad" might equate to feeling tired, achey, or sick to your stomach. She knows what this kind of sick feels like, because she understands what it's like to have every organ in your body affected by an infectious disease. And when she nods and tells you that she's sorry, she really, truly means it.

My life is challenging, unique, odd, timultuous, fascinating, and completely out of the ordinary. Yet I've come to discover that though I don't have a choice in what my life may look like right now, I can choose whether or not I'm going to accept it, and it's up to me to decide if I'm going to love it or hate it. Despite the hardship and lack of normalcy, I've chosen to love it. Living with another patient who has made the same commitment makes that choice a whole lot easier. Ashley and I live in a perfectly abnormal condo, and I've loved (almost) every minute of it.

Is your household perfectly abnormal too? Well then, rock on. 


Lyme is real said...

I loved this! My Lyme roomies (otherwise known as my daughters) and I have taken over the shelf where the glasses are stored for our meds, but as we're so frequently drinking, it works out just fine. Thanks for a great post and for a few new food suggestions to try!!

Anonymous said...

Thank you for your comment! I'm glad you liked it, and it's oddly comforting that someone can relate to being "perfectly abnormal". If you need any more yummy (but unfortunately smelly to cook) allergy friendly meal ideas, you know where to find me!


SD Lymer said...

This post made my day! I forwarded it on to my group of "Lyme buddies" and they loved it! They could ALL RELATE to it! ha ha! Thanks for such a great site that always lifts my spirits.

I've started creating my own blog about Lyme and have shamelessly gotten lots of ideas from your wonderful site!

I haven't gone "public" just yet - i wanted to make sure that I could make it interesting before I start inviting people to it!

Thanks again for everything that you do! Candice is a GREAT writer!

Keith (themadchemist) said...

Hello Candice

I'm sitting here at 4:30 AM with GI symptoms, not sleeping again. So I decide to check Spirochicks.

You are so right. As Badly as I hate to say it. I too have a lyme roommate. You see spirocetes are sexually transmitted and my room mate is my wife Tammy of 25 years. She now is starting to present symptoms of its advancement. Its good to be among the understanding. Pity in not the same, and who needs or wants it.

Oh and always Rainbow Chard.
Try this:
Chard chopped semi fine, one bunch
couple of green, red or orange peppers chopped like chard
hulled hemp seeds, as many as you can afford
Walnuts. I crush in a bag with a glass bottom. left still kinda chunky but to release the oil.
Dress in with a vinegrete. I like Hemp oil and plum wine.

Its cruchy and the walnuts, hemp and peppers all accent each other.
it also keeps well in the fridge.

One last thing - eliminating plastic. goodbye tupperware. Hello widemouth mason jars for food storage.

Ditch all Plastic, the phthalates are not helping, for those unaware.


Heather said...

I agree, Rainbow Chard rules! Keith's recipe sounds great and I am definitely going to try it.
My Lyme roomie is also my daughter...and it really does help to have someone who KNOWS around you. There is strength in being together!

Keith (themadchemist) said...

I stole the chard salad recipe from the local coop, they have an awesome deli/food bar. Its like a mini whole foods, which we are lucky to have and be members of, as we live in a rural area. Our Coop supports local growers and if your not involved with such a program in your area, look around.
Its definitely a better way of sustainable life.

the best part of the chard salad is that it keeps for 3 days and gets better every day without losing its crunch and the smashed walnuts give it a buttery texture. That is if it lasts 3 days without being eaten.

Eat local food!

keith - tmc

Alix said...

This was so great to read, especially this week as I am training a caretaker to take care of me after my surgery! After hearing me explain to use: glass straws not plastic, filtered water, no teflon, no microwave, no wheat/dairy/corn, that I wanted her to help me put an Earthing strap on my foot... she said, "wow, everything special for you." I've accumulated all these needs for the past 20 years so they all seem so normal! My normal abnormal! Thanks for reminding me and everyone that we are all in this abnormal life together!!

Anonymous said...

Loved it. :)

Anonymous said...

Great article! Maybe there could be a database for spirochicks and dudes who want to pool resources or live together as they heal. That would be great!

Sonya said...

Thanks for the chuckle! Must be nice to have someone around who understands. Glad you two have each other.

Anonymous said...

I LOVED this article. I laughed hard and out loud several times. Thanks for sharing your humor about this crazy journey we're on.

Monica said...

This is very amazing. I think now is the time to find myself a spirochick roommate too! I love your article.

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India Trips said...

I am very sure that closet is bigger than our house. It is hard to imagine how I can fill that up.

central park west condos said...

I think that whats make it perfect, you should definitely give it your touch.

luxury apartments manila said...

Thank you very much for sharing this article, I definitely learned a lot.

office space for rent makati said...

I feel the same thing, I love smelling my pillow every time I sleep.