Marnie hoped that removal of the tumor from her facial nerve would allow her to regain movement of her facial muscles. Dr. Shelton told us that after removing the tumor, he would take a long, less important nerve from her neck and splice it into the cut-out section of the diseased facial nerve. He said that there was a 50-50 chance that the graft would take. But he warned us that the growth would be very slow - imperceptible - and we would not know for months if it was working.
Marnie was hopeful. She created her own exercises to encourage the nerve to grow, trying to raise an eyebrow, lift the corner of her mouth, do a full-on cheesy smile, but we couldn’t see any effect. The right side of her face remained frozen, mask-like. One day she called me to come look, excited, convinced that she had seen slight movement in the corner of her mouth. I regretfully told her that I couldn’t see it. Frustrated, she told me that I was just being negative. She was certain something had changed. But she couldn’t make it happen again.
It was common during hospitalizations for an attending doctor to request evaluation of her ability to swallow (1). The loss of the facial nerve caused difficulty chewing and swallowing because her tongue and the inside of her mouth and lips as well the salivary glands on the ride side did not work. She was at risk for aspirating food or fluids which could result in pneumonia. When she was very ill, general weakness or a compromised mental state magnified the problem.
The doctors did not want her to develop any additional problems, so she endured repeated swallow testing. Most of the time she was fine and found the procedure annoying and unnecessary, but occasionally, she failed the test and had to endure temporary dietary and fluid restrictions.
During one hospitalization the speech therapist who evaluated her told us of a colleague in Salt Lake who specialized in rehabilitation of facial paralysis. She said that this practitioner (I’ll call her Susan) had helped many people regain tone and function of their facial muscles. We called right away to get an appointment, but it was weeks away. As we impatiently waited, Marnie continued to try to cajole the muscles of her face into moving.
Marnie was nervous but cautiously optimistic on the day of the appointment. We arrived early and filled out the necessary paperwork to explain the origin of the problem and her current functional limitations. Susan asked some questions and explained that she would be attaching electrodes to Marnie’s face and delivering an electric shock. This would amplify whatever nerve activity was present and hopefully cause the muscles in her face to be activated. If the nerve was working, we would see the muscles of her face contract. The electrodes could also detect if there was any activity of the nerve and muscles that couldn’t be detected just by looking at her face. Susan said the procedure would be painful, but it was the only way to tell if the facial nerve graft was working. Marnie consented to the procedure.
Susan delivered the first shock and Marnie winced in pain (2). Nothing. No activity. She tried the next level, which increased the pain. Again, nothing. She proceeded systematically to increase the level of electricity. Tears came to Marnie’s eyes and she trembled with each shock (3). Susan apologized repeatedly but continued the procedure, determined to find some neuronal activity. Finally, she stopped. She looked at compassionately at Marnie and in a soft voice said, “I’m sorry. There’s nothing there. I don’t think the nerve graft worked.” Marnie was in full tears from the pain. Susan hugged her and said, “I’m so sorry, sweetie, there’s nothing I can do. I really wish I could.” Marnie nodded and thanked her.
We gathered our coats and Marnie’s purse and left the office. The appointment had taken all morning, but Marnie didn’t feel like going straight home. We ate lunch at an Indian restaurant and then went to Deseret Industries so she could distract herself by hunting for bargain household items and potential gifts for the children. We didn’t talk about it.
* * * * *
Afterward, I remember tallying this experience as yet another irretrievable loss of a part of her body, another insidious casualty of the cancer. She said later that this was probably the most difficult one. She accepted the loss of her breast, her hair, and even her vision and hearing, but she had really hoped and repeatedly prayed that she would get back some of her facial movement. She wanted to talk normally, to sing, to smile, to whistle, to kiss me, to eat and drink without spilling on herself. Not having the hoped-for healing was deeply discouraging. She didn’t want to stand out any longer; she didn't want to draw attention to herself in that way.
Marnie told me about a wedding shower she attended where she saw a woman who had moved out of our ward years earlier and did not know about her illness. The woman, after staring at her face with uncertainty for a while, finally recognized her and blurted out, “Marnie! Something terrible has happened to you!” She awkwardly explained the story of her cancer diagnosis, recurrence, and ongoing treatment with its inherent complications.
In time, Marnie learned to appreciate her permanent disfigurement as an outward sign of her illness but also the miraculous blessings she had received. She would often say that everyone has something broken, something seriously wrong or painful in their life, and she felt privileged that her trials and imperfections were obvious to others.
The visibility of Marnie’s impairment allowed others to see her need and serve her. Some people would talk to her slowly or become intentionally patient with her in the store. On more than one occasion in the temple, a sister sitting next to her would offer her assistance when Marnie struggled and needed help. Instead of feeling embarrassed or self-conscious, Marnie simply expressed gratitude. And often, the woman would say that she felt blessed by the opportunity to serve Marnie, or that the experience brought needed perspective and gratitude for being in the temple at that specific time.
Whenever a child stared at her or hid from her, she spoke directly to them and said, “I look funny, don’t I?” The child would typically nod their head, and the parent would make an excuse for the child’s behavior, try to correct the child, and tell Marnie that she looked beautiful. Marnie would explain to the child that she had had something bad inside her head that made her face look funny but the doctors had taken it out but it didn’t hurt, and now she was fine. The child would usually nod then smile or laugh as Marnie squinched up the working side of her face to make comical expressions. Sometimes, fear abated, the child would tell her about some sickness or disability they or a family member had (4).
* * * * *
I confess that I sometimes struggled when looking at her crooked face. Too often when talking with her, I focused on the glaring, mask-like expressionless side that sometimes seemed to me to look accusatory or indifferent, which caused me to misread her intentions and feelings. I had to force myself to look at the left side of her face to see the sadness, compassion, serenity, joy, or kindness being expressed. Sometimes even now when looking at photos of her, I deliberately cover the left (her right) side of her face, so I can see the smiling part better and imagine what the full smile would look like.
I think by nature our attention is drawn to seeing what is new or unusual or out of place. It was too easy to look at Marnie and see only disfigurement and loss, a visible reminder of our painful trials, and I too often failed to see the blessing, the grace, the shining beauty in her that was equally present, as she increasingly reflected the countenance of Jesus Christ.
I am reminded of Isaiah’s prophecy about the Messiah: “he hath no form nor comeliness; and when we shall see him, there is no beauty that we should desire him” (Isaiah 53:2). How ironic it is that the creator of all that is beautiful would be overlooked as plain or undesirable. What were people looking for? How did they look at him? Would I have recognized him?
* * * * *
Life often presents us with ambiguity, a combination of good and bad, blessings and hardship. What do we see when we look at others? Do we see their weakness and disfigurement, someone to avoid? Do we see them as a project, something to mark on a “good works” checklist? Do we see our brothers and sisters? Do we see God?
I wonder if the way we see others is a reflection of who we are, where our hearts are in the moment. If so, I hope mine can become like Marnie’s, more like Jesus. I hope my heart can change like hers so I can see others need and gifts more clearly and “be filled with this love, which he hath bestowed upon all who are true followers of his Son, Jesus Christ . . . that when he shall appear we shall be like him, for we shall see him as he is; that we may have this hope; that we may be purified even as he is pure. Amen” (Moroni 7:48).
1 - It was also common for the medical team to attribute her facial paralysis to a stroke, and they incorrectly assumed that she had weakness on the whole right side of her body. We had to repeatedly correct that assumption, explaining that the stroke she had in 2002, two years before her cancer diagnosis, was very small and had only transient effects on her speech.
2 - Many people assume that because she couldn’t move her facial muscles, she had no feeling in her face. The sensory part of the face is controlled by a different nerve that wasn’t affected by the tumor, so she felt everything normally.
3 - Later, Marnie said it was the worst pain she had ever experienced, and she had delivered six of our seven children without an epidural block and two of them without any anesthesia at all.
4 - For an example, see: https://swanmom.blogspot.com/2013/04/and-little-child-shall-lead-them.html)
No comments:
Post a Comment