It’s terrible when I don’t have my voice. Every night the respiratory therapist takes out the little plastic valve that goes in my larynx; the valve that allows me to speak even though I have a tracheotomy and am on the ventilator. I can’t walk, I can’t sit up on my own, and without the valve, I can’t even talk. It seems that everything has been taken away from me.
At first I felt especially helpless. I didn’t really realize what was going when I woke up from my coma. My husband explained that my hiatal hernia had twisted and cut off the blood supply to my stomach. My stomach died and dissolved a bit. My daughter told me the surgeon had found bits of mushrooms from my last dinner loose in my abdominal cavity. That gave me sepsis. She had to tie off what was left of my stomach and my intestines and hope I would make it.
I didn’t quite understand all this information at first. I woke up from that coma six weeks after the surgery confused and full of hallucinations. I was terrified; panic and paranoia were almost constant companions. And with the ventilator interrupting my speech, I couldn’t talk about it.
I was afraid my voice was gone for good. What if I had an emergency? I couldn’t call out.
I couldn’t always remember how the call button worked. The first month after I woke up from my coma, I couldn’t figure out how to call the nurses. I planned little lessons in my head about how they should teach a person about the call button and how things work. I was even going to write up a little instruction book to give to patients. What I didn’t realize at that point was that they probably already told me about the call button many times. I just didn’t remember. I probably couldn’t have read an instruction book if I had one. Even now when I want to call the nurses, I sometimes can’t find the button. All I can do is wave desperately as they walk by if I want something and my speaking valve is out.
They say that speaking makes breathing harder on me. My voice sounds and feels like a tin shovel being dragged across a flagstone path. It’s raspy and fades by the end of every sentence, but it seems I should have a choice about whether to wear the device or not. They take out it out in the evening, then some respiratory therapist comes around in the morning and puts it back in.
Some days, they wait until later in the day to put it in and it seems my whole body waits for the respiratory therapist to come through that door. My imagination roams through the halls trying to picture where he could be. Other days they don’t put in the device at all. On those days, I feel like I’m being punished for something. I look back at the day before for reasons. Did I complain too much? Was I too demanding?
I’m trying to find ways around this voicelessness. I create a fake sign language to convey to the nurses what I want. I point at my neck and mime a choking sound when I want my trach vacuumed. I sort of rock my body when I want them to pull me up in the bed. I point at my feet when they hurt or if I want one of my boots on or off.
Finally, I had my daughter, MaiLynn, bring me a spiral notebook. It’s heavy and hard to hold, but I write in it whenever I want something. The nurses are just learning to read my shaky writing. My fingers and hands still don’t work as well as I think they should, but I suppose the writing is good therapy as well as a way to communicate.
At first my writings were usually just one or two words: Suction, boot off, move me, reposition. Then I started adding please to my requests.
The nurses or aides would puzzle over my scribbling, but now most of them can make out what I want. Now my sentences are longer and I use them to communicate plans or questions and so forth.
Here are some examples:
Every time I fall asleep I wake up coughing within 15 minutes. What can I do? (to the Nurse)
Little nap-when is Kathy coming and are you leaving? (to MaiLynn, asking about my sister. The two of them took shifts, staying with me all day, every day for the first couple of months.)
I use my writing to compliment people too. I’ve learned how dependent I am on everyone on the staff and want them to know how much I appreciate them.
Here is a note to a new nurse on my case.
Pretty hair! (She did have beautiful hair.)
I’m starting to take some notes about what is happening to me. They’re written down between the commands and the requests.
Did some good exercise this morning with PT and OT?
Another chest X-ray today. They are worried about the new infection.
Walked to the nurse’s station. Needed help with the walker and someone to pull the vent behind me.
Got a brace for the drop foot. They don’t know if those muscles will come back.
It’s quite a journal, with its reflections interspersed with commode please and other random requests.
There’s one entry that says, If I die, burn the body and spread it in the river. That must have been written in the middle of the night when I’m alone and the fear of death usually strikes.
I’ve been here for almost four months now. Most of the infections are gone and I’m getting stronger. They have scheduled the surgery to rebuild something like a stomach and reconnect my digestive system. They tell me I’ll be able to go off the ventilator after that. Finally, I’ll have my voice and my life back.