Discovering the Joyful Side of Suffering
By
Mary Boucher
In March 1996, my doctors in Tucson, Arizona gave me only three to six months to live. After 45 years of living with the effects of cystic fibrosis, a congenital disease, it appeared that my lungs were finally going to give out. My doctors said that in the history of the "CF clinic" in Tucson no one had had as low a pulmonary function test result as mine. When I heard this bad news, in a little way it was a proud moment for me. I don't mean to make light of it, but I do like to find humor in everything. I think that the test result showed only a 20% lung capacity. Anyway, my husband Paul and I knew there was nothing more they could do for me, so we bid them a tearful good-bye -- we had become very close. It was painful for all of us. Paul and I returned to our home in Silver City, New Mexico, where I prepared to live out what I thought would be the last few months of my life. But God had a surprise in store for all of us.
Cystic fibrosis is an incurable disease and statistics indicate that the average life expectancy of a person with CF is 29 years. Throughout my life, I suffered the usual symptoms associated with the disease: coughing spells, regular chest congestion similar to a cold, and the possibility of more serious relapses when I contracted colds and infections. As a young adult I also contracted diabetes as a complication from the CF condition. Nonetheless, I always considered myself blessed. My parents helped shape my attitude when I was a young girl. They never treated me as a sickly person. And they were very optimistic. They didn't sit around and worry about what might happen. They also instilled in me a deep faith in Jesus Christ and God the Father.
I met my husband in 1973 and after a short courtship we were married. Usually people with cystic fibrosis are not able to have children, but God blessed me twice with two beautiful daughters, Jennifer and Christina. During my second pregnancy with Christina I contracted a severe viral infection and came very close to dying. I was so sick that the doctors told me that the child in my womb was supplying the insulin that kept both of us alive. Although I was confined to bed most of the pregnancy the Lord protected both of us and I gave birth to a healthy little girl.
In September 1995, I unexpectedly contracted a bacterial infection that immediately became life threatening. However, the doctors succeeded in treating the infection and I was able to return home to Silver City. I was home barely a week when I began to vomit continuously. I returned to the hospital and discovered that I had a bowel obstruction from a hardened mass of glandular fluids caused by years of CF glandular malfunction. I underwent emergency surgery to remove the obstruction, but at that point my health deteriorated quickly. My lung capacity began to decline week by week. Soon they were functioning at only 20% capacity. Because of my inability to hold down food, I was being fed through a tube in my stomach. The medical staff told me that if I didn't receive a lung transplant I would live only about six months. After much soul searching and prayer with my husband Paul, I decided not to undergo the lung transplant procedure and was prepared to die if that was God's will. In early March 1996, I informed my doctors of my decision to decline the lung transplant. Since my lungs had further declined since their initial warning, they now agreed with my decision, stating that I probably would not live long enough to complete the process of testing, counseling and waiting for an organ.
When Paul and I returned home in March, we set up home health care, so I wouldn't have to go to the hospital. I was being "pounded on" (to clear lung congestion) three times a day, twice by nurses and once by volunteers from church. People were coming and going all the time. For the first time in my life, I was totally dependent on oxygen -- 3.5 liters. I couldn't even go without it for a few minutes. I would panic if it came unplugged. As noted above, I was also unable to eat, so I was being fed at night through a tube in my stomach. Paul was doing all the housework and waiting on me hand and foot. I made a promise to my family at this time that whatever I could do for myself, I would. I just wouldn't sit on my duff and expect to be waited on. But Paul would hardly let me do anything. He took such good care of me. It was really hard on the girls to see me this way. Jennifer said she hated coming over, because she was so used to me making her happy and now she felt sad every time she saw me, and she felt guilty for feeling this way. This was happening while Jenny was in the midst of her first pregnancy, which should be a time for rejoicing, not hurting. My other daughter Tina wanted more than anything for me to live long enough to see her graduate from high school. I thought my heart would break when I realized that I wouldn't be there to see her graduate, get married, or have her first child. I could hardly even look at Paul's face -- his pain was so evident. I hated thinking that I was the cause of it and there was nothing I could do about it! We began to accept that I wasn't going to be around much longer, and we would just "enjoy" whatever time we had left.
By this time, my extended family was also bracing for my imminent death. My mom and dad had come out for a visit in January, when my condition had worsened. Three brothers and a sister also visited me in the hospital. When mom and dad returned home, they had accepted that I would soon die and were praying for a holy death. A month later, however, my dad felt challenged by the Holy Spirit to pray for a healing. This blessing gave him deeper trust in God. He encouraged other members of my family to pray for my healing.
Then I got the great news that my sister Sue had been given a plane ticket, enabling her to come for a visit from Ohio. I couldn't believe it. I had resigned myself into accepting that I would never see her again in this life. Jenny picked her up at the airport and brought her to our house. Time was precious. We only had five last days together. It was just like old times (almost). Sue stayed in the same room with me. She endured the constant noise at night of my "pig mask" -- the machine that helped me breathe -- and the early morning sessions of vomiting. We had more fun that two human beings should be allowed to have! At this time I was so weak, I practically had to have everything done for me. Sue went above and beyond the call of duty, much like my sister Connie did for me when I was in the hospital. She bathed me, washed my hair, trimmed my toenails and fingernails and cut off my long hair. I was so hot all the time with my hair long -- I figured, what the heck, I'm dying, why not be comfortable?
We had a wonderful visit, and it was also a time when Sue and my husband Paul got to know each other much better. He and Tina really appreciated her presence. Sue made a wonderful impression on everyone who met her. She prayed over me and anointed my forehead with holy oil -- following instructions from mom and dad. That was very special. Sue also gave me a miraculous medal and a brown scapular to wear.
And then -- just when we were bracing ourselves for the big good-bye, something amazing began to occur. My voice began to get a little stronger, and I began feeling a little better. I was confused. I thought, "If I'm dying, why am I starting to feel better?" I had already made an appointment to meet with the hospice people. I went from needing 3 ½ liters of oxygen to just three. My lungs began to clear up, and my home health nurses were stunned. They were witnessing a miracle right before their eyes. All these things happened just before Sue was to go home. God's mercy is remarkable. It really took the sting out of our good-bye the next morning. After Sue left, I continued to improve gradually every day. Soon I was down to only 1.5 liters of oxygen. I could laugh again and even sing! I had a lot to sing about. Eventually, I cleared another hurdle, when I was able to begin eating again. I ate like I hadn't been able to eat in years, and gained much needed weight.
On May 16, 1996, Jenny gave birth to my first grandchild, Alexander. I was in the room with Jenny after the birth, and asked if I could hold him. When she handed him over to me, he started crying. So I patted his butt and he quit and started to fall asleep. I stood there gazing at this precious little baby, to whom my own "miracle" baby had just given birth. Our lives are surrounded by miracles. Some are quite obvious, the smaller ones can go unnoticed if we're not careful. I don't believe in coincidence or in luck. I am a firm believer that everything happens for a reason. I love to see how God allows good things to come from "bad" experiences.
Many people prayed for me during my illness. I believe that the prayers changed God's will. He was ready for me and I was ready for Him. I'll never understand why so many people who don't even know me, prayed so earnestly for my healing. I'm not the same person as I was before -- physically, but also spiritually. I learned so, so much. Many relationships in my family were healed during my illness. I also learned how important suffering is in our lives. We avoid it, shun it at all costs, but the Bible tells us just the opposite. We should be joyful to suffer. I came to a brand new understanding of suffering that amazes me. When I was so sick people would comment "isn't it sad." My thought was "not at all; you should envy me. I feel sorry for anyone who isn't me tonight." It was a glorious experience. The pain part wasn't nice. But I had many amazing experiences of God's mercy, especially in my relationships with the nurses at the hospital. One night in ICU as a nurse was taking care of me, I said, "I just want you to know that nothing you do is being taken for granted. I'm sure you hear that all the time." She said, "no, no one has ever said it." Why are human beings so afraid to tell one another what we mean to one another? Why do we fall so often into anger and judgment? My close brush with death taught me how precious each person is. God can't physically reach out and care for another person. But we are all here for one another. My sufferings turned out to be a great blessing because I experienced God's love for me and for others in a much deeper way.
Mary Boucher lives in Silver City, New Mexico with her husband Paul. They are members of St. Francis Newman Center Parish.