Last week we started working on a communication system that Melissa and Marcia put together as a way for me to still communicate my needs and be in awareness of what is going on (somewhat) for if and when the day I lose completely all my vision. I learned about ten of the objects and a few of the hand symbols and practiced them in my mind over the weekend, thinking I would never get this down. Melissa came back down on Tuesday in a severe thunderstorm just to be here for the next few days so that she and Marcia could finish teaching me everything. They also would teach the nurses and aides, my PT and OT, and others who help around when they would come in the room in order that they would know the system, too. There are many nurses and aides here who rotate days and shifts, both days and nights; I was afraid that there would be a lot in the two days that would not get to know the system. However, working both days, all day long, Melissa and Marcia taught more and more staff, and this also gave me a chance to practice with them, as well.
Melissa and I worked hard on Wednesday but didn’t accomplish as much as we wanted until Marcia came that evening. Thursday was a really fun day because a cousin visited and we worked really hard and I finished learning everything in the system. I got in a lot of practice with more staff, but I also got to spend a lot of time just talking to my sisters and cousin about family. We also got to spend a lot of time outside, because it was a beautiful evening. We took a lot of pictures and they pushed me in the grass. I don’t think I’ve ever held onto my wheelchair so tight in my life! As the sun was starting to go down, Mom and Dad met us and we went back inside. After a horrible night’s sleep, Friday I was pretty miserable, but I was thankful that Melissa and Marcia and a friend were here. After another full day, I got in bed for some reason started crying because I didn’t want to lose people’s faces in my vision. I think it was because I was seeing Melissa fine, but was having a harder time seeing Marcia. Marcia pulled out my prayer journal and we flipped to some pictures of us together and I looked at them in my magnifying glass. We all talked for a bit then she left. Melissa and my little nephew, Landon, spent the night in my room so that then Melissa could teach the night staff and early morning staff the system for when I rang in the nurse’s button.
I slept fairly well that night and then called the nurses too many times. Usually, I can tell the morning by the sunlight that comes in the window even with the shade down. My body’s natural bathroom run alarm clock woke me up what I considered morning but couldn’t tell because it was so, so dark. I asked for the time and got it in the hand signals. I fell back asleep but about a half an hour later, I asked to get out of bed. Usually, the first thing I ask for is my sunglasses because I am blinded by the lights, but this morning I was put on the chair and it was still completely dark to me. After I was ready they asked me by the objects if I was ready for breakfast. I said yes but also I asked if we could turn on the lights so I could see what I was eating. After a confusing message board, I got another one I could read with the blueish lights through the window, “on on on,” meaning all the lights were on or the curtains were open. I said, “Oh no!” and started crying. I am very glad that Melissa was there because it was a great comfort at the moment. She took me through the hallways, which once blinded me, but were now dark. She also took me outside, but to me, it looked like eight o’clock in the evening. Coming back inside, an aide fed me my Cheerio breakfast. Then I just sat, thinking and praying and talking for awhile with Melissa until she had to go home to my parents’ place to refreshen.
Before lunch, I can tell that the sun brightened more and actually put on my dark sunglasses, but the dining hall at lunchtime and afterwards until about three o’clock everything went dark again, but not as bad as the morning where I seriously thought the power was out. Since then, everything now, again, is hazy white. Where even my small part of vision left I am only able to see the blue and dark colors like brown or black. I thought maybe the brightness was from the natural sunlight but I am not sure. I really can’t explain why this morning was so dark and now it is so light and why yesterday it was fine and today I woke up different. That’s just the way this disease works. Whereas before there would be slow progression, now I am seeing that things just happen and it is unexpected.
The thing is, in some ways when I think back, even on just this past week, God’s timing always fits perfect. Even though when I quote Psalms 23 to myself I feel like I am literally walking (more like sitting) in the valley of the shadow of death. But I cannot even describe to you, like I cannot describe to anyone, what is going on in my body for them to understand how much I see how blessed I really am. Even just last night as I was falling asleep I couldn’t stop thanking God for everyone who has helped out in some sort of way, even if it’s just stopping to say hello, or like my family working to communicate. Even just now, the realization that we had just ended learning and teaching the communication system is another example of God’s perfect timing, even in the trials. I am not sure what comes next, as I still can see a tiny bit. But when something does happen I know I will be able to think back and see God’s hand in it all. Thank you again for all your prayers and encouragement. I have to honestly say that if anyone asked what they could specifically pray for, I would just stare at them and say, “I don’t know.” But if you can continue to pray at least for peace in all these changes, not just for me but my family as well.
Love you all,
Mel with her cousin (also named Melissa!) who drove from Chicago for a special quick visit.
Developing and practicing the new object-based communication system with sisters Marcia and Melissa in preparation for impending total blindness.
Laughing with Melinda through new hand gestures on her knees.
Practicing and practicing the new communication system with sisters and cousin, with and without a blindfold.
Special moments with sisters on Friday night. Melinda was afraid she was forgetting what Marcia looked like, so she studied a picture of her face in her prayer journal with her magnifying glass before bed.
The morning of Melinda’s blindness. Melissa and Landon were already with Melinda at the nursing home since they spent the night with the aides (having been alerted by a teary-eyed aide just the morning before to the intense communication struggles the staff was having with Melinda at night). This perfect timing could only have been God’s grace and provision. Holding Landon that morning greatly calmed Melinda in her moments of blind panic and despair.
Melinda later on that same evening with her friend, Stephanie, who listened to her dictation and helped her type this post.