My Journey with Chronic Illness

This is the story I’ve never written down, much less published, because it’s not really my story. It’s my husband’s. But, it became my story when we met in 1992, and it has continued to be my story in our almost twenty-five years of marriage. Today is the first time I’ve written it all down because…it needs to be heard.

First, there are illnesses that, dare I say, are “fashionable” to talk about. How many ads we have seen for medicines that treat heart disease or multiple kinds of cancers? I would say many. I understand this. There are many people who suffer and who have died from these diseases. But, if we have lived any length of time, we know there are many more diseases than just these two. My husband has dealt with one of these for most of his adult life. Crohn’s Disease. I’m going to define this disease, and its cousin, ulcerative colitis, because they are so similar, and the drugs used to treat them are similar. First, Crohn’s Disease—a chronic, inflammatory bowel disease that affects the lining of the digestive tract. Now, ulcerative colitis—a chronic inflammatory bowel disease that causes inflammation in the digestive tract. As you can see, they are similar, only having a one or two-word difference in their definitions. In fact, we later found out that my husband’s diagnosis was indeterminate between the two.

But, back to the diseases themselves. They are both bowel diseases. Diseases that affect elimination. Who wants to talk about that? There are many people though who suffer—1.6 million with 6 to 15 new cases per 100,000 people diagnosed each year. And there is no cure. Yes, there are drugs that can control it. Yes, there are surgeries that can help. But, all of these have life changing consequences. I know this because I’ve lived it.

Anyway, when I met my husband in 1992, he was recovering from a surgery. I was struck by his kind manner, his twinkling brown eyes, and his sense of humor. The rest only became relevant as we started dating. The times he couldn’t go anywhere because of the pain. The shame he felt when he had an accident. The constant hunger from the steroids he took. And so many more side effects from the medications and effects from the disease itself. We had good times though. Times when he was in remission and we could be normal. He asked me to marry him almost eight months later. I suppose as a 27-year-old, I should have known what I was facing, but I loved him and wanted to marry him. We married almost thirteen months after he proposed.

When I turned thirty the following year, we started to consider having a child. He had managed to come off his medications, and the doctors said it would be the best time to try. He had been on them for so long though, the odds weren’t high we would be able to conceive—one of the side effects of the medications I spoke of earlier. We beat them though. Or maybe I should say God had a hand in it. 😉 I got pregnant and at the end of 1996, we had our first son.

The first days of new parenthood were wonderful, exhausting, exhilarating, and every superlative adjective in-between. But, as we moved several months into our son’s first year, my husband had a flare and came out of remission. I can hardly describe the pain. I know it was excruciating. There was so much he wanted to do, but couldn’t. They tried several combinations of the meds. They did a colonoscopy to see where the lesions were. But, nothing helped. My husband was stoic. He worked as much as he could. He didn’t want it said of him that he complained too much of not feeling well. That was something one of his family members did constantly. Finally, though, he couldn’t work anymore. Something had to be done. The doctor decided on surgery, and we met with a surgeon. They were going to open him up and see how much damage there was. A temporary colostomy might have to be done, but he was optimistic it could be reversed. I particularly remember the surgeon asking what his pain level was. He said it was a four or five on a scale of ten. (This would come into play later.)

The following day he went into surgery. I was anticipating a surgery of no more than two hours so when it passed that time, I got nervous. One of the nurses in the operating room called out to the waiting room. The damage was more extensive than they had thought. (This surgeon later said to my husband he wouldn’t wait to take him back to surgery again. Turns out he has a very high pain tolerance.) They didn’t know how long it would be. The surgeon came out over six hours later. Something bad had happened. The damage to his colon and rectum had been extensive. They had removed both and put in an ileostomy. He had coded on the table, and they had restarted his heart. My heart almost stopped. Here I was an almost 32-year-old woman with an almost 1-year-old son, and I had come this close to being a widow. Of course, I was grateful they had saved him, but at that moment, I didn’t realize how permanent and life-changing this would be for him in the years to come.

He went home from the hospital a week later, and our adjustments began. He had received counsel from an ostomy nurse about what to expect, but a lot of the adjustments were going to involve him seeing what worked and what didn’t. Here is the definition. “An ileostomy is an opening in the belly (abdominal wall) that’s made during surgery. The end of the ileum (The lowest part of the small intestine) is brought through this opening to form a stoma, usually on the lower right side of the abdomen.” (Source, cancer.org) I won’t get any more detailed than that. Just know that it was a permanent change in body image for him and a change that both of us would need to walk through. We went to one support group meeting, but weren’t able to gain a whole lot of insight since we were the only ones there who weren’t retired and who had a young child at home. After that, he got most of his information from the Internet.

Not only were we dealing with physical adjustments, we were also dealing with mental and emotional adjustments. This path was hard, and there was no one in our lives we could really talk with about it. No one who understood when I came to a church function alone. So much depression and shame. Why couldn’t our lives be normal? We could see our abnormal clearly. Did anyone else have an abnormal?

Things gradually evened out though. We had our second son, and our abnormal became normal. Life was good. But, in the first years of the twenty-first century, my husband started having problems with the ostomy. He had to go to the hospital again. What? I thought we were done with the hospital. Turns out we weren’t. In fact, there have been many hospital stays over the past nineteen years. 2001. 2003. 2005. 2010. 2015. 2016. All of these stays didn’t directly involve the ostomy, but I had to wonder if some of them involved his destroyed immune system. Because that was the other life-changing thing the doctor had told us to expect. He had been on the meds for his Crohn’s for so long; he would more than likely catch everything that came down the pike. He did. If there was something going around at his office, he would usually be the first one to catch it.

In the midst of all this, we moved. Several times. Employers have a hard time understanding the reality of a chronic illness and everything that comes with it. He was able to gain valuable experience with each position though which was a plus. But, we still had very few people in our lives we could trust with our “abnormal” normal. We had left the church, and I felt so far away from God.

Finally, we moved to our current state and found our current church. I’ve written about this before. It took us a long time to trust this community, and at times, I still don’t. We’ve been on the recipient end of help instead of the giving end, and it’s made us feel unworthy. How could we not? The shame involved. The low times. The hard times.  We had been shunned by former churches, and I keep feeling the other shoe is about to drop here. We’ve even chosen not to do certain things because we don’t feel capable. Listen, we know in our head that God does love us unconditionally, but the heart is another story. It can be very hard to live into, and it’s even harder to not think we won’t be shunned again. But, I do my best each and every day to live into the grace of God and not in shame and loathing from Satan.

We’re on the other end of raising our children now as I’ve written about before. My husband is in a stable job that is a good fit, and we’re hopeful he’ll be able to stay there until he retires. I’m in a place where I can write, and we’re in a place where we can contribute. It is my hope, by laying my heart bare, that people can have a greater understanding of our story and why we react the way we do as we live our “abnormal” normal.

Have a great day, everyone!

 

The “True” Definition of Success

Before I go into today’s story, let me issue all the usual disclaimers. Yes, I know there is not one true definition of success. What I write today is my opinion and no one else’s. Success can be gained with the world’s values or with religious values. I could literally talk with twenty people and get twenty different definitions of success. But, today I want to share my own thoughts of success and what it took to get me here.

It begins with my pre-adolescence, a TV show, and an actress and ends many years later with a journey to meet said actress and a realization that, for me, the only “true” way to be successful is to invest in other people like Jesus did. Y’all, adolescence was not kind to me. I was chubby, nerdy, and bullied by other people. I was as far away from being in the “in crowd” in middle school as you could possibly get. I wasn’t interested in boys, and I wasn’t interested in make-up either. I think, even back then, I knew my value wasn’t tied up in those artificial things. I was more interested in the things that mattered and in the world around me. In science fiction and action-adventure. In changing the world around me. But, those things at that time were not the things young girls were interested in. So, I longed for the role model I didn’t have at home.  I had not become a Christian yet so the closest thing I had to role models were my teachers at school and the characters in the books I read.

Enter the TV show and the actress. I was ten the year The Bionic Woman premiered. Watching the first episode, I was spell-bound. Here was a woman on television who was doing all of the things I dreamed of doing. Yes, some of it was cheesy. Yes, some of it reflected the time it was shown in. But, all in all, Jaime Sommers (the main character) taught me that what was important was the content of your character and not what you looked like. Those were important lessons for me to learn between the ages of ten and twelve and even later when I faced constant criticism for what I looked like and for not following the crowd. I admired Lindsay Wagner, the actress who played Jaime, so much and even had a poster of her on the wall of my room for a time.

Fast forward to many, many years later. I was an adult and a Christian who was married and had two children who were teenagers. Adults had poured into me as a new Christian, a teenager, and a young adult. I had learned about the best  and worst things the world had to offer, and it seemed like I had experienced all of them. Now, I’m not trying to say I was perfect. I was far from it. I could be as selfish as the most worldly or the most Christian among us. I had lived a good portion of my life. That year I had the opportunity to go to something called Dragon Con. Many actors, writers, and artists make appearances there. Some are well-known, and others are not. I had recently come back to writing, and as a science fiction, fantasy loving wanna-be author, it was the place to be. Finding out Lindsay Wagner was on the guest list sealed the deal.

So, off to Atlanta I went. At this point, as an adult woman in her 40’s, I knew that actors and the characters they portray were different people. I knew there was a chance that Lindsay Wagner wouldn’t be anything like the character she portrayed all those years ago. But, I also knew I had to say thank you for what she had meant to me. I spent the weekend going to writing workshops, seeing other actors I was interested in, and soaking up the whole experience. I noticed that some of the professionals were more approachable than others and some had very inflated egos. (It cost more money to see them.) Finally, it was time to see Lindsay Wagner. I was so nervous as I stood in line because she was my childhood hero. Finally, I got to the front of the line. She was so kind and very aware of the role model she had been. I said what I wanted to say and received my autograph and picture. It was an amazing experience and showed me that some people were aware of how they influenced others and acted accordingly.

It has been over five years since that experience. Tumultuous years. Years where the American public has become deeply divided. Years where we all have become more selfish. Years where I’ve been sure nothing would ever go right again. But, these years  have also been years where I’ve become part of an interracial church family. Years where I’ve made a deliberate focus to talk to people others wouldn’t talk to. Years where I’ve done my best to use words Jesus would want me to use. I haven’t been successful all of the time. There are people who would testify to this. Human nature and life have knocked me down again and again.

Most importantly though, I’ve worked through a lot of the garbage from my own past. My growth and experiences through this work have brought me to the point I stated at the beginning of this post. The “truest” success people can have is the success of investing in and ministering to other people. In other words, truly listening and being happy for the other people in your life. But, it’s the hardest kind of success to achieve. In fact, I know only a handful of people who are like this in my own life. People who are heart friends. People who don’t let prejudice get in the way. People who are not concerned  with cliques or what the “rules” are in their interactions with other people. People who share joy.

I am a work in progress in this area. There are days when I am at my most selfish and wonder why the “trappings” (money, achievement) of success don’t come to my family. Then, there are days when one of the maintenance guys at my apartment complex corners me and wants to talk about his Christmas because I had talked to him before. There are days when I think no one notices my presence and days when I get a comment or two saying how my writing has touched them. I’ve said my word for this year is “believe”, but perhaps I should add two words to it. Authentic and joy. That’s how I want to live. As someone with authentic joy. Not as the world defines it , but as my faith defines it. For those of us who are Christians, I believe this is the way Jesus wants us to live. And for all of us, it can bring us to the place where we know character counts in how we live. Thankful for all the heroes in my life and for the people who have invested in my life!

Have a great day, everyone!