Melody reports this morning that she feels more "normally" congested and that her throat feels more "normally" sore. She still has a nasty cough and a historical propensity for lung infection so I am concerned about that. We are now working on the back at home plan. We will need to make changes to allow her to progress. The ketamine coma has put Melody's mind in a state that now requires retraining. The ketamine stopped the synthesis of glutamate, thereby cutting the physiological problem at the root (sorry for the uninitiated). However, A new foundation of thinking needs to be laid, and like any foundation it must be solid. If this foundation is laid poorly, then all this could be for naught. I am looking at the next year as the opportunity to lay a new foundation. This foundation must be filled with wholeness, right thinking and love. I made a vow to the Lord that if he returned Melody to me, then I would take the very best care of her for the rest of my life. Right now this means understanding the importance of what she needs now.
People are already beginning to ask how to help. We are grateful for this, and I can share more specifics in the future. Proper communication is foundational. The following steps/guidelines are typical and not unique to her. I've learned a lot just from watching Dr. Cantu and Ruth Garza for extended periods of time interact with Melody--Dr. Cantu because he is highly trained and gifted in working with pain patients and Ruth because she is Ruth. Knowing how to care for anyone battling with/recovering from chronic illness takes knowledge and skill as well as good intentions. Here are some guidelines to enable warm communication with Melody while not causing her difficulty:
(1) Let Melody know that you love her w/o conditions. In other words, don't say, "Hi Melody, can't wait until you are completely better so that you can be more involved in x, y, or z at church." Such statements tend to be the "default," but they can be spirit crushing. With four children of her own (and one with a chronic illness) she has loads of things (personal, family, ministry, etc.) that she already wishes she could do and cannot. Theologically, such statements can reveal wrong theology: God does not work through those who cannot do x, y, or z like the rest of us. I am always careful when speaking to the sick or disabled not to speak in ways that convey that God cannot be glorified powerfully in their powerlessness--the Bible says just the opposite.
(2) Don't ask her how she is feeling. RSD patients have been trained over time to focus on pain. The pain was real and the problem was physiological and not psychological. But now that the root problem has been addressed the thought patterns must catch up. Asking her about pain is directing her in the wrong direction. For example: You don't ask a sober alcoholic, "Did you want a drink today?" Or, you don't ask a person who you know struggles with pornography, "Lusted after any beautiful women today?" Likewise, with RSD people it's not helpful to set their minds on the pain that has dominated them for so long. Just talk about something else.
(3) Don't touch her. She will touch you if she can. If she is not touching it is because she cannot. For people close to Melody, it will be helpful to train yourself to know that not touching her communicates love, while touching her communicates not thinking about her. Honestly, this is my greatest fear after seeing some positive results from the ketamine coma: Someone running up to Melody in the Narthex at church and saying, "So glad you are better! Let me give you a big hug!" Melody tenses up in fear, receives this big hug, all the while with Susanna pulling at her leg. She walks away hurting (but trying not to make a scene as the pastor's wife). She walks away not sure whether she hurts because of the hug, the tensing up in fear, or the emotional shock of somebody just running up to her like that. To take it a step further: if you see someone about to do this please intervene and receive the touch in Melody's place, or "take the hug" as it were.
(4) Do continue to express her your love and prayers. "So good to see you today!" "We prayed for you often." "We are so glad you are back." "We loved hearing about your progress." "We continue to pray for you." And of course, "You look beautiful!" These are all good things to say. It is also encouraging to her to share your joys, struggles, etc. It does not need to be all about her all the time. Like with the touch, if she has time and it is appropriate she may bring up how she is doing.
We got our tickets to arrive late this Saturday night (11:30PM). The time is a bit awkward, but was actually the best overall given all the factors we have to consider (shortest flight time and most convenient departure time physically for Melody and Jacob). Please pray that Melody continue the current course of recovery so that she is well to travel. Also, please pray for wisdom for me to plan well for the next year. There are many things that need to be done, and many things that need to not be done, to follow Dr. Cantu's and Dr. Kirkpatrick's counsel. God has been at work in so many ways throughout this ordeal, and I am eager to see how he will work in this next year. I was nervous about it; now I have more of a sense of anticipation than nervousness.
