The New Normal & the Boring Reason I’ll Never Stop Dancing

Patient is a Bellydancer: Part Two

by Margaret Anne
posted July 31, 2014
Part 1 here

In November 2013, a few weeks after my surgery, my mother and I sat in the surgeon’s office to read the pathologist’s report on my colon which they had removed a few weeks previous.

I hadn’t had my morning coffee yet so the good news didn’t hit me until I was back at my parents’ home with a cup in my hands.

After weeks trying to accept the terror of Crohn’s Disease, the pathologist conclusively found that I had until recently been a sufferer of Ulcerative Colitis (UC). This confused me. What did he mean ‘until recently’? He then informed me that while Crohn’s is a full body, lifetime struggle, UC only manifests in the large colon. Now that mine had been removed, carted away, examined and incinerated (good riddance!) I would no longer exhibit the symptoms.

With the diagnoses of colitis, I was eligible for a "j-pouch," a reservoir of sorts fashioned out of part of my small intestine to mimic the function of my external ostomy appliance, giving me a fist-sized reservoir and the ability to use the bathroom "normally". J-Pouches aren’t as convenient as a functioning colon – I’d have to be aware of bathroom locations for the rest of my life. As a colectomy patient I was given (and at the time of this writing, still have) a loop ileostomy, where my small intestine was drawn through my abdominal muscles allowing for waste to exit my body. My colon was gone but I was left with several inches of stapled-up plumbing in the back end. If I had walked out of the surgeon’s office with Crohn’s, my temporary arrangement would’ve likely been permanent and I would schedule an easier surgery to close the back door for good. But now, I would wait to see the surgeon who would perform my miracle and schedule for a fall 2014 reconstruction.The surgery isn’t without risk even at the best of hands on a healthy patient. As the young lady that I am, the main warning I was given concerned fertility issues. I haven’t spent much time weighing whether it might be selfish to choose my desire to have a "normal" looking stomach again over what seems like a far-away concern.

On a touching note, an older male GI doctor wanted me to know that in terms of partners, that if an ostomy – my lifesaving ostomy – proved to be am issue in a relationship, then I would find that he just isn’t worth my time anyway.

It was nice to hear a "You Go, Girl!" from a voice with experience. Personal relationships of all kinds are so much odder now. Eating a few bites of the wrong thing could put me on my side with cramps for few hours with my intestines making a loud racket. I’m still testing my tolerances to different foods, and I’m constantly testing the edges of my new social comfort zone.

Socially, I’ve kept up with the bellydance community because they’re my friends regardless, even though I’ve stepped away from bellydance lessons. At the end of January 2014, I stage managed Arcana, the Serpentine Studios production featuring live music. It was difficult to see that my spot in the choreography could be patched so seamlessly, but I appreciated that I could still have a role on the sidelines.

After I was released from the hospital I began to tie up the loose ends on my independent lifestyle, including breaking my lease and moving back in with my parents. I didn’t have much energy to leave the house and needed chaperoning around, but I visited the dance studio for hugs and to pick up the pink and leopard-print costumes delivered there. My first few weeks at home were mainly dedicated to putting weight back on to my unhealthy frame with a high fat, high protein diet that will be remembered as the salad days of bacon and cheese.

During that first week home, it was settled after a long discussion that our family pet, the best dog in the world and my best friend for almost 17 years, should be put down. He had been falling apart for years and we couldn’t let him continue on his downward spiral.

I had to let go of a lot. I lost my health, my independence, my pretty tummy, belly dance – but nothing was harder than letting go of my friend.

I’ll always regret that I wasn’t able to take him for one last walk in the park.  I couldn’t dwell on my doggy however, because crying hurt my stapled incision too much. Within a few days of getting home I could walk up the stairs by myself, but he kept falling down them.

So I went about my recovery, including selling off costumes to some local dancers. I kept some veils and props as well as my troupe costuming even though I would be out of active duty for a while. But what about dancing at home? My ileostomy’s stoma protrudes through a layer of muscle putting me at a bit of a hernia risk. Contracting my abdominal muscles felt bizarre. The veils are packed away while I work on my lost flexibility. My surgeon joked later after clearing me for physical activity that I could bend over backwards if I wanted to – I told her that I can! Or, at least I could. We’ll see how long a real back bend takes again. The scar tissue runs deep.

On a visit to my family doctor in December, she reviewed the report sent from the regular surgeon to my J-Pouch specialist surgeon and smiled when she read out loud that "the patient is a bellydancer". I was always so calm and collected when speaking to my herd of specialists.

However when they’d then ask how I was holding up mentally and I’d say that I’m fine except that I used to be a bellydancer. Or that I am a bellydancer, but I can’t do it because of this. Bellydance is normalcy along with beauty and not having the ostomy.

A week later I went in for my usual blood work. The lady recognized me from previous visits (I was a regular) but since my hair was up, she didn’t realize that it was me right away. "You have such beautiful hair, but you’re not wearing it down!" I normally wear my curly shoulder-length burnette mop down, but I had started wearing it up recently. The stress, steroids, surgery and malnutrition caused all of my hair in the growth cycle to telophase and fall out. I used hairspray and eyeshadow on my scalp to fill in the missing parts.

I tried to style it, but chunks came out in my hands. My curls stopped holding. Grimly, the constant sweeping and swiffering wasn’t necessary because we didn’t have the dog anymore, but, now, I was shedding enough to bring the broom back. Overall I would estimate I had lost 90% of my hair. At least it’s growing back.

I hated looking ill and am very conscious of it, especially since my illness is not often understood and I was at an extreme end of the spectrum. "Temporary me" isn’t someone I want to know very well or even acknowledge (she’s the worst kind of unwanted guest), and since I had promised myself that I would spend my time away from dancing growing my tresses to khaleegy lengths I was devastated. Other messy health issues sprang up, but the hair was the missing cherry on the sundae and "appearing healthy" was something I had clung to.

Life gave me lemons but the sugar wasn’t free. I decided to see my hairstylist and go for a bleach blonde. Blondes have more fun, right? I have more fun now that I don’t look like I’m balding because my hair colour now blends in with my scalp. Sweeping up near-invisible blonde hair from the floor is a lot easier on my psyche. I bought clip-in hair extensions, too, and I got really good at unclogging the hair in shower drains.

I mind looking ill. The hair extensions make me feel silly but not because, yuck, whose head is this from, but because I’m ashamed that I couldn’t accept my hair loss. I prefer the lie. My hair is growing back but until it does, I’ll lie to myself. I will not accept that I lost so much of it. I knew I had accepted my big ol’ round-the-navel scar and my stoma when I had them even in my dreams, but I point-blank refuse to not have pretty hair.It wasn’t just hair loss itself that upset me, but it was the last straw in what I could handle.

I lost my pretty, unmarked tummy. I have a rough time sleeping, exercising and especially eating around weird dietary restrictions. I couldn’t dress like I used to because I have This Thing to work around. I will need medical attention for the rest of my life. Personal relationships will forever be complicated and potentially embarrassing. I hate swimming, but I still panic about swim suits. Pressing against counter-tops and seat-belts is nerve-wracking due to my stoma, positioned just to the right of my bellybutton. A big dog jumping up to greet me could ruin my day.

So I found myself falling into a particular trap that effects us when we don’t physically look like a bellydancer. Physical glamour is necessary for marketing, but that’s not what makes a dancer.

I didn’t start dancing because of my hair, or because of unmarked tummies. I heard the music and wanted to do whatever it was that went along with the music. I accepted that that even though I wouldn’t look like a dancer for a long time, I could still dance like a dancer. I had started taking lessons when I was 18 and became ill at 26. I will start dancing again at 27 if my next surgery is successful. Most people don’t start until that age or older. I have some physical demerits but I still have experience. Plus, there are always baladi dresses, or Suheir-style tummy covers, makeup, and fake hair. Also, it wasn’t as if I was the best dancer in town, so I didn’t suffer the loss of top billing. I didn’t teach or dance for pay often, so I didn’t lose an income stream. There were some dreams to cut loose, however. Before the surgery,I had wanted to take the Arabesque Pro Course in Toronto with Yasmina Ramzy, but I’ll never be a real pro now. It’s too late for that.

I’m still getting my hips back under me. I took a workshop with Aubre Hill several years ago in Bridgetown, Nova Scotia where she had us using our back muscles to produce movement in the front.

What was once an exercise in insanity is now how I hip drop and down walk.

Interestingly, my illness solved at least one mystery for me. When I was in the hospital I was subject to more x-rays than a shady package at the airport, and someone mentioned offhand that I had an abnormally high diaphragm. They had no idea why I was excited to hear it – finally, a real answer to why I had such a hard time fluttering!

I don’t consider myself a survivor, or particularly brave. I was hospitalized on a Thursday and three weeks later I was released on a Thursday. My Thursday was just a lot worse than average, but we all pulled through it. I could have died in the process but without any of the sweeping drama I would’ve imagined for myself.  As a Catholic who took philosophy in university, I’ve spent quite a bit of time weighing popular notions of life and death, but faced with the straightforward reality that my bowel could perforate and kill me, I was overwhelmed with a single thought: How boring.

How absolutely boring it would be to die like this in some hospital bed. I had no fear of death or dying, but I didn’t want to miss out on my life. How boring it would be to miss an entire life! How boring it would be to be missed.

How boring it would be to stop dancing.

So now, I’m waiting to see the next surgeon in early April. The patient is a bellydancer and wants her belly back!

Next article: Patient is a bellydancer, Part Three. Coin-flip Prognosis

 

Author volunteering at Hal-con in Halifax, Nova Scotia, last October
about a month post op,
with Garrett Wang. Hal-Con is a Sci-Fi & Gaming convention.

Resources:

• Author’s bio page