Home for a Holiday

SHARED BY STEPHANIE NGUYEN

The Diagnosis

The pancreas—it doesn’t get all the attention like the heart, liver, or lungs. I didn’t even know I had a pancreas until I was fifteen years old. My entire life as I knew it changed that year; I went from being a perfectly healthy, normally obnoxious teenager—wearing rolled jeans and scüncis—to suddenly being very sick, in unimaginable amounts of abdominal and lower back pain, being thrown into a world filled with doctors, hospitals, big fancy medical terms, and ugly hospital gowns.

After surgery to remove my gallbladder and then lots of test when I didn’t get any better, I was finally diagnosed: pancreas divisum with chronic pancreatitis. Basically, I was born with a birth defect that caused my pancreas to be split into two pieces. Only a small part of my pancreas was functional, and it was doing all the work for my entire body. This is a very rare condition with no cure and very little treatment available, except long stays in the hospital during the pancreatic attacks and a lifetime of extreme pain and pain medications.

A Chronic Trench

For me, there is no getting out of the trench. I just have to make my trench as comfortable as possible with fluffy pillows, a nice down comforter, and good lighting. There is no first holiday after I got out of the trench because I’m never not going to be sick. Over the past twenty-four years, I’ve literally spent every single national holiday in the hospital at one point in time. I’m not even talking just the popular holidays like Christmas, Thanksgiving, and Easter. I’m talking Arbor Day, George Washington’s Birthday, and National Hug a Tree Day, too!

The first holiday I spent in the hospital was Halloween. I was sixteen years old and in the midst of another pancreatic attack. I was at Riley Hospital in Indianapolis. Doctors always did their rounds in large groups early in the morning, and they would usually wake me up. Even though I was sick, I was still a typical teenager who needed lots of sleep and who didn’t appreciate being greeted by a swarm of doctors at 5 a.m. All the doctors and nurses were dressed up for a Halloween costume contest, so I woke up that morning surrounded by ghost and zombies. I literally thought I had died in my sleep, and I started crying. I was very relieved when they assured me that I was still alive!

Another holiday I spent in the hospital during my teen years was Valentine’s Day. I remember being so mad because I was missing out on getting and giving valentines with my friends. But that morning, I received more balloons and flowers than usual. There was one beautiful vase of flowers, and the nurse had put it on the dresser on the wall opposite my bed. I was too sick to get out of bed to see who it was from, so I spent hours hoping it was from a cute boy at school. I didn’t care which boy—any boy would do! Finally a nurse came in to check on me, and I asked her to hand me the card. Of course, the gift was from my mom, and my dreams of having a secret valentine were dashed. But I still greatly appreciated my mom trying to make the day special, despite me being in the hospital on another holiday.

Independence Day is probably the most annoying holiday to be in the hospital. For one thing, it’s in the middle of summer, and I feel like I'm supposed to be out enjoying my summer with friends and family, not spending weeks in the hospital. One year on July 4, I remember there were fireworks going off in the neighborhood all night long, and I couldn’t sleep in my hospital bed. It’s hard enough to sleep when you’re being woken up every two hours by nurses checking to make sure you’re still alive, but having to listen to annoying fireworks on top of that was too much for me to handle. I'm sure I asked for extra pain medications that night!

Missing Memories

After I had my son ten years ago, being in the hospital or just home recovering from a major surgery or in the middle of a bad pancreatic attack was much more difficult. Once you have a child, the holidays are all about making it special for him or her. Just because I’m home for a holiday doesn’t mean everything is fine and dandy. The holidays are generally very difficult for me because I have a very hard time getting out, going shopping, cooking big meals, cleaning, and decorating. I try really hard to make the holidays as special as possible for my son, but some holidays, I’m just so sick and miserable—I can barely do the minimum. I am very lucky that my son has a grandmother who will quickly take over and ensure he has a magical holiday.

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The most difficult holiday I ever spent in the hospital was four years ago. I was admitted to the emergency room the day before Christmas Eve. My son was six years old, and he had to stay with me. He saw how sick I was and how much pain I was in. I try very hard to shield him from the seriousness of my illness as much as possible, but sometimes there’s just very little I can do to cover up the pain. I remember crying and being devastated when I was told that I was being admitted. I would have to have surgery on Christmas Eve, and I was in the hospital for seven days.

Thankfully, my mom and ex-husband were able to take care of my son. I remember waking up Christmas morning and feeling so lonely and for good reason: I was there all alone. I was angry I had to be at the hospital and not home with my son and family. I felt guilty; I felt like I had destroyed my son’s Christmas because I wasn’t home with him. I also felt very sad because I was missing out on watching my son wake up, seeing his excitement as he discovered what Santa brought him, watching him open his presents, and sharing all our annual traditions.

Finding Balance

When you are living with or caring for someone with a serious illness, celebrating the holidays has a whole new meaning. You become much more thankful for the holidays you get to spend with your family and loved ones out of the hospital. You also learn to prioritize and make traditions a very important part of the holidays. I try to do certain things the same way every year so that my son has traditions he can look forward to, traditions I hope he will remember as an adult.

I love making things and being creative, and I always l love decorating my home for holidays. Over the years, as I’ve become sicker and less able to do things, I’ve learned that it doesn’t really matter if my home is perfectly decorated at all times. It doesn’t matter if every food item on the table is homemade. I have no shame in letting Target do some of the work for me. I also let other people help me every once in a while, which can be very difficult at times but has become more and more of a necessity.

If you know someone with a serious chronic illness or someone who is taking care of a child or an adult with a serious chronic illness, remember that just because they tell you they are fine and they don’t need anything, they may not be telling you the truth. I have mastered the art of masking my pain. I can be in agony and look you straight in the eyes and tell you I’m perfectly fine. I do this because I don’t ever want to be a burden to someone else. I know that everyone has their own problems, and I never want to add to those problems. In my heart, I know that most people who ask me if I need help with anything would honestly be more than happy to follow through, but still, I would much rather pretend I'm okay than graciously accept their help.

If you are offering help, it is often better to just do something for the person in need instead of asking. Unless you are standing on my doorstep with dinner in your hands, I will never tell you that I’m too sick to cook or tell you that bringing me dinner will make all the difference in my life—that it will keep me from worrying about how on earth I’m going to get out of bed and feed my child.

A quick text message every once in a while to check in is also greatly appreciated. One of the issues people with chronic illnesses deal with, especially during the holidays, is loneliness. You already feel so alone because you are home sick all the time, but it’s even worse during holidays because you are missing out on all the holiday parties, events, etc. Just knowing that someone is thinking about you and is taking time out of their busy day to check on you can really make someone’s day. Sometimes, the simplest things can make the biggest difference.

This post was originally shared on December 21, 2016.

 
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