I wrote a little about my experience with surgery last month and how Joey helped me and charmed the staff. I will share a little more this time. I was hospitalized in Mid-May due to an infected gallbladder, pancreas, and beginning liver failure due to infection in the liver. I had emergency surgery and IV antibiotics for a week before I was released. I have been recovering well, and I am actually discovering a new me. Hospital experiences as a DeafBlind patient is what I want to share with you today.
Hospitals can be a scary place even if the procedure is relatively minor. Sounds of equipment, needles, and masked-covered faces all add to the uncertainty of what can happen. Unlike horses, the lack of sight doesn’t help people to calm their fears. Usually, it increases. We use our imagination to produce images of our own making. Without sound, we imagine even more about what is reaching out from the Dark Silence to grab us and inflict pain. Everyone needs a companion to simply hold a hand or speak reassuring words to help us get through the scary moments.
Last week, a student I teach had to go into the hospital for surgery. SP (as we call him because of his sign name) is nine years old and is deaf and blind. SP was very nervous, but Mommy and Daddy were right by his side as they waited for him to be prepped for surgery. He charmed the nurses with his sweetness despite his fears. He would sign to them, and Mommy would translate his words of encouragement even when they had to poke him with a needle and make him cry a bit. The closer the time came for his surgery, the more nervous SP became. SP knew in his heart what he had to do. He signed PRAY and grabbed his parents’ hands to form the sign, too. SP knows all too well that his friend, Jesus, will take care of Him. He wanted to not only ask Jesus to help, but he also wanted to thank Jesus because SP knew already that Jesus would take care of him. A couple of nurses were in the room as this happened. They were very touched. One actually cried and said, “I haven’t prayed in 25 years. How does a child with no sight and no hearing understand about God?” That is simple. He hears and sees God with his soul. SP may be deaf and blind with his physical eyes and ears, but his soul’s eyes are ears are healthy and wide open. If only more people would look for God with the eyes and ears of their soul, there would be more joy like in this sweet child.
Unfortunately, the story for SP doesn’t end there. Shortly after, it was time for him to go to the operating room. The staff insisted that SP’s parents stay behind. That is when SP’s little fears avalanched into the monsters of his dreams. SP and his family never have an interpreter to help them explain what is going on to SP when he goes to this hospital (which, with SP’s other health issues, is fairly often). The parents are on their own. They are learning ASL, and SP is learning, too, but the parents don’t know how to sign the things that are going on in the hospital well. Interpreters are trained to do that even for children. They muddle through, but SP’s anxieties are strong making it all a traumatic experience for him. Then the hospital adds more trauma by taking his only connection to the world away- his parents. The Dark Silence intensifies. The staff uses “the little red wagon” that is familiar to many who have had sick children, but this isn’t enough to calm SP who isn’t even sure what he is laying in or why. With some strong arms, they eventually get SP to sleep and perform his surgery without further complications, but SP has to awaken in the recovery room with only a nurse who can’t speak his language. SP cries until he is taken back to his room where his parents are waiting for him. All is well once again, but none of this trauma is necessary. If the people who make the hospital policies could experience what SP has to go through, they would make sure he is never alone and always in touch with the world through his language.
I know all too well how SP felt. It has happened to me several times after losing my sight. I shared with you last month my most recent experience in May when I had emergency gallbladder surgery. I am older and have more experience and knowledge than SP, but it was frightening in the Dark Silence nonetheless. We were also very worried about the lack of an interpreter because when I have gone to the emergency room in the past or been in the hospital, I have only gotten one once because they have only one that will do tactual interpreting. That person can’t be available twenty-four hours a day. I was very nervous because this seemed very serious, and I didn’t want people poking and prodding me when I would be unaware of what was going on.
Well, I was in the emergency room for about five hours before an interpreter arrived. My husband and I used the notes app on my iPhone and the braille display when feasible to communicate with the doctors and me. It was difficult at times because my husband couldn’t spell many of the big medical terms the doctors were using, and it was time-consuming. Other times, the display was unusable due to my position during exams and testing. My husband would try to fingerspell, but he is slow and clumsy and the words are difficult. We struggle through deciding that it is more important for me to get test results in quickly and then let an interpreter help me know what the results are and options for treatment to help me make informed decisions. The only reason it works well for me to get treatment without an interpreter at this point is because I have experience and understanding of the general procedures that will happen in this emergency room setting. Without that understanding, I think my fears and anxiety would cause me to freak out.
Later, an interpreter shows up and the test results had come in, so my problems were discussed along with what needed to be done. I was able to ask questions and get immediate answers that I fully understood. Communication based on my needs is the only way a patient like me should have to deal with situations like this. Up to the point where I had an interpreter, doctors and ER nurses were very uncomfortable with me. They didn’t have a clue about how to deal with me. This lack of understanding about my needs left them to assume that I was incompetent mentally despite the fact that I tried to talk with them using my voice which doesn’t sound like a deaf person at all. This attitude increased my anxiety level a lot.
Later, when I was placed in my room on floor, the floor nurses arrived and discovered what kind of patient I was. They placed a sign above my bed saying, “Patient is Deaf and Blind.” The response was totally different. Each nurse came in and asked my husband ways to communicate with me. Together, we all worked on a system where they could tell me what they needed to do when they came into the room. They would pat my upper arm if they needed to take a blood pressure reading. They would touch my lip with a thermometer lightly when I needed to open my mouth for a thermometer. They would lightly touch a finger when they needed to test my blood sugar. For questions and more complicated things, I showed them signs for hurt and how to ask me tactually if I was in pain. I showed them the sign for where, so they could ask me where. I kept to the simple signs or gestures that they could remember, and I would be able to interpret as needed even when groggy after the surgery. All of the floor nurses and other personnel were reassuring, attentive, and willing. Even the one night that my husband couldn’t stay with me, I felt comfortable with my treatment and care. There was little fear and anxiety added by the fact that I am DeafBlind. The caring staff is what made this happen.
The hospital only provided me an interpreter for a couple of hours the first night in the emergency room and while on the observation ICU floor. I had an interpreter the day of surgery for the tests beforehand to prepare for the surgery, pre-op room, and the operating room until I was under anesthesia, and then in recovery. The remaining days they did provide me an interpreter but only for the few minutes that the doctors would come in to make their rounds. The good thing was that for the first time ever this hospital did go out of the area and request an interpreter from Atlanta when the only one here was not available. That was a welcomed improvement over my past experiences with this hospital. The time that an interpreter was provided was approximately twenty minutes when the majority would come in and ask questions and exam me. Two doctors would never come in during that time. They would come in at other times. One would talk to my husband as if I wasn’t there. The other would come in looking nervous and ask “is she doing ok?” My husband would respond, “Yes, but she is sick and vomiting,” or “Yes, she is fine,” as appropriate. The doctor would then back out of the room. I was without a communication means for the rest of the time except for the goodness of the floor nurses willing to try to learn a few simple signs. A couple of staff members knew a little fingerspelling learned as a child, and they were proud to show it off to me. I was grateful for their warm expression and concern for easing my fears.
The provision of an interpreter or other means of communication that is usable is absolutely necessary. I realize that it isn’t feasible to provide a certified interpreter 24/7 during a hospital stay. Important times with a doctor are a must. The times immediately before and after surgery are a must. For a person with no friends or family, the other times alone can be unbearable. A caring staff willing to learn two or three signs can be a light in the dark silence, but the long hours can still be stressful. It would be nice if there was a list of willing volunteers who can communicate in various ways with a DeafBlind person to stay for scheduled periods of time during their hospital stay. Even without that, provision of an interpreter at certain times is absolutely necessary along with training staff to be sensitive to the needs of these patients.
I have spent two other hospital stays each of a week or so in a hospital far from home with no family or friends close by. Neither time was I provided an interpreter at all. The long hours were filled with great fear and anxiety. The nurses were not concerned for me and seemed to act like I was merely a training mannequin for them to practice their skills. No one seemed to care that I was lonely, scared, and confused with no understanding of why I was sick or how I was being treated other than IVs stuck in my arm and oxygen pushed into my lungs. I am so grateful that my husband and sons were there to help this time. I am very grateful for the floor nurses that were so kind and attentive. It made all the difference between a nightmare and a peaceful recovery.
Living in the Dark Silence can be frightening and difficult at best. Many situations can turn out badly if people don’t understand. SP did have his parents for most of the time. For me, there was not only a happy ending (I am better now), but the journey was as pleasant as it could be considering it was a hospital and involved lots of needles. The staff made the difference. I hope I don’t have to experience another hospital stay, but if I do, I pray that this hospital will only have learned and improved from our experience together.