Sick (4 page)

If more people become actively involved in these and other processes, disabled/ill folks can begin to feel more comfortable and safe. With more people in our circles being offered a voice, there's no telling what we can accomplish.

He and I sat on his dorm room bed gazing into each other's eyes. Contentment swelled within my chest; maybe I could let my guard down. I let him lean close to me, his hand wandering underneath my t-shirt. He began lifting my shirt. I gasped, hesitant to let him see what I had only casually mentioned: scars scoring my abdomen, reminders of the surgeries which had saved my life.

A shocked “hmm!” escaped his lips as he examined my body. He let my shirt fall back down into place and we began kissing. “Maybe he'd forget about my stomach if we went further,” I thought. Yet, I knew that I deserved a proper boyfriend, not just fooling around. He would have to get to know me better, even love me, before I'd let him do anything else. We just kissed.

We cuddled and watched television for another couple hours and then he drove me home. “We should do this again sometime,” I said.

“Sure, definitely,” he replied. We kissed briefly before he left.

The next time we talked he was aloof. He wasn't as talkative as usual, which worried me. (I liked him. Did he like me?) “So, when would you like to meet up again?” I asked cautiously.

“I don't know…” he began. “I'm kinda busy this week.”

“Oh. Whenever you're free is fine,” I replied, instantly knowing he could sense my desperation.

“No offense, but I just don't see this going anywhere,” he said bluntly. “I'm definitely attracted to your mind… just, uh, not… to your body. I'm sorry.”

“It's my scars, right?” I retorted.

“Yeah… they're just too weird,” he replied. “I really am sorry.”

“I guess they wouldn't look so bad if I weren't chubby, huh?” I asked spitefully.

“Uh, I guess… they just freak me out… I'm sorry,” he said. “We can still talk if you want.”

I knew that he didn't mean to hurt me, but I cried for hours after that, wanting to rip off my fat rolls and burn away my scars. The pain of open heart surgery and a kidney transplant combined didn't even touch the emotional pain of rejection. Not only that, but his attitude reminded me of every other guy I had been
interested in. They simply insisted that I cover myself, that I be ashamed because they couldn't be bothered to see the other things that make me beautiful.

A week later I decided to browse a dating website on which I had a profile. I noticed that someone had taken my compatibility test and scored rather low. They were still online, so I took a chance and decided to instant message them.

He quickly issued me a warning: “I'm disgusting,” he typed.

“Why?” I asked.

“I cough up phlegm all day, and shit fat,” he replied. “I have cystic fibrosis.”

“Oh, yeah?” I typed, intrigued by his honesty. “I can piss out of my navel… with a catheter.”

We chatted all night. I told him about my premature birth, my eye surgeries, and my open heart surgery to fix a defect which would have killed me. I told him about how I couldn't drain my bladder completely when I was a child, so my doctor had used my appendix as a conduit from my navel to my bladder, allowing me to drain the excess urine. I told him how despite catheterizing myself daily, my kidneys had failed from the reflux by age 11, prompting me to have a kidney transplant.

He explained how his disease had mucked up his lungs with mucus, making them havens for bacteria. He told me how he had to use a nebulizer twice daily in order to deliver antibiotics and saline to his lungs. In addition, he had a hard time absorbing fat from food, so he stayed underweight. Enzymes helped him digest his meals. Also, he was diabetic from mucus building up in his pancreas. His abdomen bore scars from a feeding tube and other surgeries.

Surprisingly, we had much more in common than our respective illnesses. Soon we met in person, quickly falling in love. The first time he saw my scars, he kissed each one, then looked into my eyes. “They're beautiful,” he said. A year and a half later, we are still together. He makes me appreciate my second chance at life, and I help him cope with the daily realities of CF. Most of all, we remind each other that we are not our illnesses. We are people. We are fighters. We can make a life together.

This black cloud over my head. I fight it everyday and every moment of my life until I die. It's an incurable disease, and it nearly ruined me. My curse. My nemesis. My lifelong companion.

It's called End Stage Renal Disease, but most know it as kidney disease. This came to me out of the blue when I was 28 years old and just beginning to be comfortable in my own skin.

My life up until the sickness seemed filled with trouble and chaos, and it took me almost three decades to stop low-self-esteem-fueled behaviors and start liking myself. With the help of my husband, Chad, I was happy and looking forward to our future in Portland, Oregon. We just opened a small vegan grocery store and were excited about so many new possibilities. So with all that positive eagerness in our lives, my sudden illness seemed even more vicious and tragic. The biggest joke ever played.

It seemed like one day I was healthy, the next day not, and my symptoms were swift and severe. It started with migraines. Never even having slight headaches my whole life, teeth chattering migraines out of the blue was scary.

Being new to town, I went to a naturopath my friend had seen before, and she made the situation even more desperate. Misdiagnosing me as having a “virus,” she said my blood pressure seemed “a little high” and claimed my vegan diet might be in need of some changing. She prescribed a ton of supplements I can't even remember and told me to keep drinking chamomile tea. Ironically, when you have kidney failure, drinking a lot of fluids is one of the last things you should do. I just got worse and worse.

Blindness was next. Unknowingly my blood pressure had shot up so fast that it hemorrhaged my retinas, and blind spots started growing in my eyes until I could hardly see anything but a dark mist. Looking these symptoms up online didn't help either because it named every illness but kidney failure.

Nausea, puking, trapped fluid in my lungs and body, and muscle atrophy quickly followed. Little did I know this was the domino effect from my kidneys kicking the bucket to the poisoning and breakdown of my body. What was worse, the physical crippling or the not knowing why this was happening?

These were bad, bad times. Chad was going insane with stress and worry, taking care of me and working our new store by himself. I was choking on the fluid in my
lungs when I tried to sleep, threw up what little I ate, and I could hardly even walk anymore. We didn't have any close friends yet, no support system except each other, so I eventually had to reach out further for help and called my mom. She flew from Texas the next day.

I saw an eye doctor a couple weeks prior who referred me to a retinal specialist. My mom escorted me to my appointment, and I was practically crawling and semi-conscious by that point. The doctor could tell right away something was wrong, and right away he checked my blood pressure. Before I knew it I was in the intensive care unit being hooked to blood pressure lowering IVs. I had kidney failure. What a surprise. Never crossed my mind that was the cause of my months of misery.

I woke up in ICU the next day stabilized and tired. My pain was suddenly wiped clean. This complete relief from the agony of dying and unknowing somehow made everything the doctors and nurses told me less grave. I had End Stage Renal Disease. That is a complete failure of my kidneys, the organs that help you pee and excrete toxins from your blood. Essential to staying alive. Kidney disease doesn't run in my family; I didn't have any other health issues before. To this day we still don't know why my kidneys died.

The first week in the hospital I was bombarded with so much bad news, yet I seemed happy and upbeat. Everyone saw it as me being a strong woman, but it wasn't that. It's because my symptoms prior were so, so horrible, I thought to myself, as long as I never had to go through that level of suffering again, I could take whatever they had to give me. Dialysis for the rest of my life? Fine. Kidney transplant? Fine. Lots of medicines with side effects? Fine.

There is no cure for this disease. We ESRDers have a few options: dialysis, transplant, or death. Now that I've done the first two and almost the last, I can say that having a transplant has been the best way for me to keep anything near the same lifestyle I had before. I did both forms of dialysis. Hemodialysis, the most familiar one, I did for a month. I went to a clinic 3 times a week for 4 hours and got hooked up to a machine that cleaned the toxins from my blood. I was the youngest at the clinic, and trying to drown out the constant complaining and sexism from my sick neighbors, I'd put on my headphones and try to ignore them. I always left there sad and hopeless.

Peritoneal dialysis was a relief because I did this myself in the privacy of my home. It's not as common of a therapy because, having a disease that normally plagues older folks, they usually don't have the dexterity to fulfill the rather rigorous regimen. I filled and drained saline into and out of my peritoneal cavity 3 times a day through a tube that was implanted into my stomach. Sounds grody, but this gave me more freedom, and I performed this on myself for nearly a year until my transplant. I could even take my supplies with me and do it anywhere I wanted (within clean-reason), which meant I could travel again and adjust my dialysis according
to my own schedule.

In general with dialysis, you're usually tired and nauseous, you have more restrictions with what you eat (salt salt salt), but food doesn't taste good anyway. Most looming is your life expectancy. Not so optimistic. This makes that black cloud bigger and darker…with thunder and lightning.

At first I was content on the thought of dialysis for the rest of my life. My doctors were pushing transplant right away, but after what I went through, I wasn't up for the trials and tribulations of having major surgery. Also, not having a true idea of what dialysis puts one through, I thought I could live a long, full life that way. When I found out life expectancy with diaysis is 10–30 years, I freaked. My expectations of growing old with Chad were suddenly compromised, and I realized why my doctors wanted me to go under the knife so bad. A younger person with a good matching kidney could live out a relatively normal and lengthy life. There was no question my brothers would get tested first because my family is so supportive, and any one of us would be willing to risk our lives to save each other. So, after a pretty quick pre-screening process, a year to the day of being diagnosed, I received my brother, Brian's kidney, and it's been a great match.

Now, with my transplant, all I do is take my medicine, go to my doctor appointments, and keep an eye on myself. I can eat whatever I want, go wherever I want, do whatever activity I want (except probably anything that might get me punched in the stomach). It's like I've been reborn, and I forget a little more everyday what dialysis was like…generally. Of course, there's way more to it than that.

Sickness isn't a subject people enjoy discussing or hearing about. It's a mortal reminder for both sides, but it's there, and sometimes it's happening to the most unlikely people. When you're young and given a short life expectancy, sometimes it's hard not to want to give up. Life almost left me, and my initial joy of overcoming death was quickly taken over by fragility and confusion. Why, why, why? Unanswerable questions were taking over. Sometimes there's only so much loved ones can do for you until you need professional help. I can honestly say my therapist saved my life in that first crucial year.

It's been better since my transplant. The memory of dialysis is slowly fading day by day, good or bad. But when you're dealing with something negative that is never going to leave your side, how can you not let it get you down from time to time?

I'm pretty sure I can speak for my fellow sickies and say having an illness is more than a bummer. If I stop too long to think about my disease and mortality, I can cry no sweat. Being sick isn't something I will ever get used to. No one would guess from seeing me how rotted I am inside. My health is that of a 80 year old, but on the outside I seem to be a happy-go-lucky 33. And that's the way I want it. I want to be like my peers or whomever I would've been if I never got sick. When I meet someone
new there's always that tension in my head of when or if I should tell this new person what lurks inside me. It's something so important to me, yet you always have to wait for the right time to tell your new friend, “oh by the way…” The last thing I want is pity and attention, but I always know sooner or later I'll have to talk about it, and I feel like the image one might have had of me will be stained. It's not that I'm ashamed, but it's complex. I don't feel like everyone else, but I try to. I want to educate people about living with an illness, but I don't want to be treated differently. Yet I'm not like everyone else and I have to be treated differently sometimes.

From talking with other younger sick people, we are almost secretive about our illnesses mainly because we don't want to be a burden, and we don't want charity. I find myself hiding my medicines down below the table when I'm eating a meal with friends, and I have to take them. We still want to seem strong and bulletproof, and this makes us keep our heartaches on the inside. Torturing ourselves with our self-prejudice and pain. For me, the funny and hypocritical part about it all is, since I do keep it to myself so much, sometimes when I'm not feeling my best and do want comfort or sympathy, most people don't remember right away that I'm sick, and I'm left to keep dealing alone. But that's actually okay for me. I would rather have people forget I'm sick than worry. This probably hasn't been the most therapeutically positive way for me to take my sickness, but it's my own natural survival instinct I can't control.