53 years, 85 pounds and a Deadly Disease.

The first thing I noticed was her weight, 85 pounds, which was dramatically decreased from the first time I saw her. She did not look well. My voice reflected my concern as I entered the room, “85 pounds? What’s going on?” Her reply caught me off guard, “I think I am dying.”

She said it in a matter of fact tone. It was not a statement of fear or anger, it was simply her opinion on her current state. She went on to explain why she thought as she did. “I feel like I am suffocating.”

3 years earlier she had been diagnosed with MAC (Mycobacterium Avium-intracellulare Complex) a cousin of TB that can cause severe chronic pneumonias, usually in patients with a depressed immune system. In her case the disease was particularly aggressive, eating away normal lung tissue and leaving infected cavities in its place. Multiple drug regimens had been attempted without success. The last combination had so suppressed her bone marrow that her white blood cells had almost disappeared from her body, rendering her defenseless against other forms of infection. The specialists had run out of options and had begun to consider experimental therapies and perhaps even a lung transplant. I asked her thoughts about the future.

We talked about some of the proposed therapies and she told me that she had made up her mind that she was not going to bankrupt her family pursuing treatment and that she was pretty sure she did not want a lung transplant. “I am not afraid of dying,” she shared, “I just don’t want to suffocate.” I ordered some breathing treatments to help open up her airways and returned later to check on her. Her breathing had improved some and I sat and talked with her some more, asking about her family and their feelings about her illness.

As we talked I was impressed by how reasonable and rational she is. She does not have a death wish nor is she giving up. She just understands the truth. She is a very sick lady with a very serious disease. Death is a very real possibility. We talked some more and she shared with me her faith, which helped me understand her reasoning. She is a devout Christian who believes that death is not the end, that she has an eternal hope. She is confident that death will not permanently separate her from her family and does not feel that she needs to grasp at straws or pursue futile treatment to prevent it.

Later in the conversation she surprised me with her insights from her recent hospitalization. “The doctors there seemed uncomfortable with me. I felt like I was a disease and not a person.” It seemed that as the doctors ran out of medical options they were uncomfortable talking to her. It made her feel as if no one cared, that she was being defined by her disease.

She then looked me in the eye and thanked me for the time I spent with her, saying that although we had not shared many visits that my office was the one place where she felt listened to, that she felt that she was a person. I was deeply touched.

Before she left I asked for permission to pray for her and to ask others to pray for her via my office Facebook page. “I will take all the prayer I can get,” she replied. “I know God can heal, I have seen Him do it before!” She concluded by saying that even if God did not heal her that she was okay with that as well.

The visit came to an end. I prayed for her and gave her a hug, and we both got a little misty eyed. She has been on my mind ever since, I think mostly because of the quiet strength that she portrayed. She and I are the same age and I wonder how my family and I would respond if I was struck with such a severe disease. It is my prayer that we would also be able to draw strength and confidence from our faith and that we would be able to cling as confidently to the hope of the Savior as she has.

As I reflect on her faith I am reminded of the words of Peter as he wrote to the Christians who were facing terrible persecution at the hands of the sadistic Emperor Nero-

“While you may have had to suffer grief in all kinds of trials. These have come so that your faith — of greater worth than gold, which perishes even though refined by fire — may be proved genuine…” 1 Peter 1:6-7

Difficult times test our faith. Genuine faith endures these trials, is priceless, and demonstrates the reality of our relationship with God. Hers is a genuine faith indeed.


-          Bart