Another 20-Year Anniversary

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The year 1996 was a big year for me. It was the year Jaime and I started dating. It was the year I graduated from high school. After graduation, I turned 18. In the fall I headed off to college. There were lots of milestones!

There was another big event for me in August of that year. The first weekend, I went to meet the girl who was to be my roommate for my Freshman and Sophomore years of college.  I remember having a stomach ache on Sunday that weekend. Thursday of that week that I wrote in my journal about abdominal pain and fevers. Friday morning I had an allergy appointment and my mom took me even though I was ill, feeling that perhaps the allergist could shed some light on my condition given her medical background and expertise. Once we got there she began examining me and when she touched my abdomen, pain surged through me. I shot up off the table, surprising all three of us. She knew right then it was probably my appendix and rushed me across the hall to where my physician had his offices. Within a few hours I was in surgery.

These days, appendectomies are often done laproscopically, but 20 years ago, we weren’t even presented with that option. We were hopeful, however, that the procedure would be routine and I would be out of the hospital after a few days. That was not meant to be. Once I was in surgery, they found that my appendix was hugely swollen and had perforated. Infection had spilled out into my abdomen and infection and scar tissue were clinging to my large and small intestine. They had to remove portions of both intestines as well as the appendix.

At the time, it was also determined I had a mild case of bronchitis. Out of concern for my lungs, the doctors decided it was best not to put me fully under for the surgery. The exact details are fuzzy in my mind, so I turned to my journal to fill in the details. There I reported that they gave me a spinal injection but I was partially aware during the surgery. Apparently I was lashing out and hitting at the doctors and nurses. They gave me a shot after the surgery to help me to forget. I did forget the surgery itself but had nightmares for months after the procedure as my subconscious tried to wrestle with the horror I had been through. (Side note: if you hit medical personnel during surgery, however justifiably, they will label you “combative” and that term will follow you around for the rest of your life!)

The first memory I have post-surgery is being wheeled from the elevator into my room. I thought I was screaming and writhing in pain, but was told later that I was in fact deathly still and softly moaning. I wanted to die. I had never, ever felt such a degree of pain and misery and it seemed unbearable. My second memory is of my parents and two of my sisters arriving at my room with a big bunch of balloons. I remember the shocked looks on their faces when they saw me. I remember my mom rushing to my side, and the others leaving immediately. The next two weeks were the most difficult of my life up to that point. I was discharged from the hospital after several days only to be readmitted due to uncontrolled pain and swelling. The infection took a long time to get under control. I became undernourished and unable to eat. Weight melted from my frame. The surgeon, skilled but callous, implied that I was anorexic because I wouldn’t (couldn’t!) eat. He also blamed me for the seriousness of my condition, deciding I must have withheld information from my parents about how I was feeling. He didn’t take into consideration that CFers have stomach pain routinely which makes it seem normal and also builds a pain tolerance that is perhaps higher than average. The staff seemed annoyed and threatening when I pulled my NG tube out in my sleep on the second night. Nothing was going right. It was an awful experience.

There were good things that happened too–Jaime came to visit me and brought me a cheerful stuffed Tigger. My sisters and dad came to visit regularly. My aunt and grandfather came. People sent flowers and little gifts to cheer me up. And my long-suffering mother stayed by my side most of the time, fielded phone calls from me in the middle of the night when I was despairing, and read to me to help pass the time. One day she read these verses from 2 Corinthians 1:

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. (v. 3-5)

Those verses meant a lot to me during those weeks and the time of recovery that followed. It was the first time in my life that I was in real trouble. I was dealing with an infection serious enough to cost me my life. I was being cared for by a surgeon who was unkind and unfair. I was due to leave for college and didn’t know if I’d be strong enough to go. The future felt uncertain. And yet I felt God’s comfort deeply, perhaps for the first time. I found joy in knowing that this comfort I had received could be used to help someone else. It was the first time I personally grappled with the notion of redemption–that God could take a painful and ugly experience in my life and bring good from it. And He did bring forth many good things. I felt forever marked by God’s love and care for me during those days. I learned that life is indeed uncertain and disaster can strike at any time, but that God is a sure and steady anchor and can see us through any storm. I had a new understanding of what real pain was which made me appreciate all the more Christ’s sacrifice for me on the cross. My faith was deepened. I understood a little more about how much my sister Sheri had suffered with her CF and I felt compassion and respect for her.

I also had new eyes through which to see the pain and suffering around me, and once I got to college just weeks later, I found that hurt was rampant in people’s lives. I had friends who were scarred by abusive pasts, friends who were struggling with depression, and those simply looking for acceptance and love from a cold, hard world. I found I could relate to them a little better, and I felt deep sadness for the wounds that were ongoing, unable to be fully healed by the passage of time.

Although I thought my wounds were fully healed, years later, we discovered that this surgery was a big player in the infertility I was experiencing. In an exploratory procedure, our reproductive specialist discovered that my abdomen was full of scar tissue from the appendectomy and was it creating a mess of things. And unbeknownst to us, one of my fallopian tubes had been removed and tied off, a detail the surgeon failed to mention back in 1996. While the infertility was painful and difficult, it was another formative time in my life where I learned to trust God and accept His plan for me. In a spectacular show of redemption, Lucas was born on August 9, 2011–the 15th anniversary of that dreadful surgery. His birth on that day reminded me that our hurts do not go unnoticed by God. He sees, He knows, and if we allow Him to, He works all things together for our good, no exceptions. What a miracle.

That experience 20 years ago marked my transition from childhood into adulthood. It was a time of major growth for me. It was also the first of several times where I was in real danger and God preserved and protected my life. After that I knew without a doubt that He had a plan and a purpose for me. I knew that my life wouldn’t be perfect–couldn’t be perfect in a world so marked by pain and suffering. But I also knew that He would be my faithful guide and companion, and that He would provide whatever I needed. And He has. Great is His faithfulness.

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Do I Hate CF?

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Wonderfully Made

I have seen many people comment about hating cystic fibrosis. CF is personified as the enemy and the accusing finger is pointed. We are angry with it and we hate it. We wish to stamp it out forever. I think it’s natural to look for something to blame in the face of adversity. We need somewhere to go with our anger and frustration. Maybe a part of us feels that if blame can be assigned, and someone is responsible, than bad things are preventable.

Certainly these feelings of rage towards cystic fibrosis are not unfounded.  Cystic fibrosis is an awful disease.  It causes bodies to have great difficulty functioning.  It causes pain and suffering.  It threatens survival.  It steals years of life, health, and the very breath we breathe.  It separates families. It took my sister’s life at 35. I now struggle with the effects of this disease every single day of my life and they are not pleasant. I have felt that anger. I have felt bound by CF.  There are plenty of times that I. Want. Out. I assume my life would be so much better without it.

But when I hear people say they hate CF, or when the thought crosses my mind, there is a part of me that feels uneasy.  These comments have almost felt personal at times. It may be partially because I don’t like aggressive, angry words.  But there is more to it. Although cystic fibrosis does not define me, it is just as much a part of me as my blond(ish) hair, or my blue eyes, or my blood type. It is written in my very DNA. There is no version of me that could exist without it.

Psalm 139 verses 13-16 say this:

“For you created my inmost being; you knit me together in my mother’s womb.  I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.  My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.”

God created me and made my body wonderful, cystic fibrosis and all. I believe that the presence of diseases like cystic fibrosis are a deviation from God’s perfect creation: that they are a result of the powerful presence of evil in the world.  They are certainly not what God intended.  So I don’t mean to suggest that God glories in the ugliness and devastation of this disease.  But He does glory in bringing love, life, strength and renewal out of pain and struggle. God brings beauty out of ashes.

And so from the time I was born, God began the wonderful work of redeeming this cystic fibrosis, yes, this disease, this hardship in my life, to be not a despised part of who I am, but an instrument of good in my life.  I have learned many lessons from this disease–lessons that have increased my faith, deepened my character, strengthened my relationships, given me perspective on what’s important, and put me in a place to be able to reach out to others.  CF has been a great burden, but also a great blessing.

So do I hate CF?  No. Yes. I don’t know…maybe. I sure feel that way sometimes. I hate the destruction and suffering that it brings. But I am eternally grateful that in the hands of my Savior, this horrible disease can be transformed into a pathway for blessing.  I’m not certain my life would be better without it.

I am fearfully and wonderfully made.