One of the main difficulties with scleroderma is eating. “What is for dinner?” became a dark thought, a sentence I did not want to hear. I frequently choke, even drinking a glass of water. The family has had to use the hammock maneuver multiple times, even after trying to take pills. It is highly uncomfortable, and there is a shame factor. In those moments, I thought, “Here it is, this is the dark tunnel,” During those seconds and minutes, all I saw was a dark tunnel when I closed my eyes and tried to relax and breathe. There was no light at the end, just darkness.
For a while, I refused to eat in the presence of people, even my children, for fear of embarrassing them. As stated earlier, it is common to have difficulty swallowing for people with my illness. It is called dysphagia, caused by a muscle in the back of the throat, right before the esophagus, that stops working. A door closes, and neither food nor liquids can pass through. I imagined the dark tunnel was my esophagus. When the door shut, I must spit out anything remaining in my mouth at that precise moment. One, two, and three, and it must eject. Sometimes, I excuse myself politely and walk to the bathroom to dispose of any remaining food, and the rest of my plate remains untouched. Sometimes, if alone, I just spit into a trashcan. Food is no longer a friend. “Adieu, mon ami,” I frequently thought, “I will never eat this again.” I don’t like seeing the dark tunnel. I don’t like passing through it.
Part of my medical team consists of a nutritionist. We speak on the phone every month, trying to develop creative ideas. My rheumatologist, Dr. K point of view regarding my food was “Whatever you can eat, eat!” she added, “Whatever you can enjoy eating, enjoy!” Dr. K is happy if I can eat, swallow, and retain my food. A balanced diet or a diet designed to optimize my quality of life is a bonus and a choice. Life and quality of life are two different concerns, yet to think about “life” is to think about “quality of life,” I needed one to access the other. In my mind, they are not exclusive but interconnected. There is only a black veil separating the two, just like separating two beings from a wedding kiss, yet one is white, and the other is black. Touching the cloak, going beyond the veil to reach life, a quality of life, not survival or death. I am not ready for death. I am prepared for life.
My first appointment with my nutritionist was just about relaying medical diagnosis and communicating difficulties encountered while trying to eat, including but not only foods I enjoy, foods I struggle swallowing more than others, my daily diet, nutrition choices, and why. It was an investigation session as well as rapport-building. I did expect a miracle diet that day, although it came across my mind, “Just tell me what to eat, I am begging you,” I thought many times. It didn’t happen. I didn’t get my specialized menu. I ate mashed potatoes, chocolate milkshakes, vanilla Greek yogurt, eggs (which I dislike), paté, blended chicken noodle soup, and smoothies. It was very dull, yet I did not choke. I did not see the dark tunnel and walked in the gardens instead of the darkness.
The second time we met, we started to plan. We created manageable meals. Veggies and fruits being hard to swallow as they do not mash cold or disintegrate in the mouth were the most challenging. Tomatoes, cherries, strawberries, and red pepper. Red. No. Lettuce, cucumber, peas, and pears. No. Apples of all colors, No. Corn, No. Bananas, let’s try to mash them. Some yellows worked. Let’s make some apple sauce or warm them up; the same for pears—colors to paint the tunnel. “Let’s add graffiti in my imagined esophagus tunnel,” I thought. “That is more my style.” It seems easy when dealing with illness, radiology appointments, specialists, medicine management, etc. Sometimes meal preparations requiring extra thought are not welcomed. It is just one more thing to do, which is not desirable. “Really? I already care for a family of eight…and now, I must care for an additional special meal? No, no, and no.” The conversation continued, and we added smoked salmon, avocadoes, and Greek yogurt. More colors. When we closed our session, I had a more positive attitude and was willing to try a few new alternatives to my daily diet. According to many sources, no processed food is a must when dealing with scleroderma and anti-inflammatory foods such as cherries. Eating cherries doesn’t work, even though I appreciate they savor. They won’t pass my esophagus’ doorway. As a child, I ate many from a tree my great-grandfather planted in his garden in Aspremont, a village in southern France. I miss cherries. I tried cherry juice, but it tasted like prune juice. “no, thank you.” I thought. My dietician listened, with no judgment, which helped build trust and encouraged me to try and report back to her next time. “what works, we continue” and “What does not work, we change” were some of her words.
The next visit was not good, as I had to reveal my recent liver results. The Methotrexate affected my liver, and my numbers were not good, according to Dr. K. So, my nutritionist and I had to re-direct our focus. We had to account for foods that would not impact my liver too much and help it heal from the pharmaceuticals it had to ingest. Reduce sugar. Reduce the white, even invisible white. “What about smoothies?” I asked my nutritionist. “It’s okay if no juice is added; add water instead. Avoid Jamba Juice. They add juice. Too much sugar for you, even if it seems healthy, it is not.” She replied. And so I breathed and thought, “How in the world am I going to make this work? Too many variables to think about.” One food at a time, one color at a time.
