Saturday 12 September: At 5:55 a.m. one of the black female staff members at James Square Nursing Home starts raging at some unknown person—staff or patient. It starts about coffee, then she yells into the quiet night for about five minutes. Good morning, good morning, good morning.
Around 7:00 a.m., I call the NYS nursing home hotline and report it, then push the call bell and wait to see how long it will be before someone answers it. In seven minutes Lester appears in the doorway. Lester is a dear sweet man, loved by all. He is Cuban and lived with his wife in Argentina for two years. He is slightly built with short dark hair and about an inch of black fur on his arms.
An aside: when you are old, sick and weak, it is a blessing to have a healthy adult male reach out to lift you, re-position you, steady you as you try to stand in the shower. Muscular arms, hairy arms, strong arms that bespeak safety. The lovely 19-year-old girl aides are so willing to help but they are so small, so delicate. What one wants is a big hunk of man who can grab your catheter bag with one hand and wrap his other arm around you and swing you from bed to wheelchair. I learned this first from a nurse who was working nights and building his wife a rock garden by day.
So here is Lester, not big but strong. His wife works in a pediatrician’s office; he used to work five days a week but now he works two double shifts on weekends. Lester answers call bells promptly, never disappears like Chaz does, cheerfully follows directions and generally does a good job and is helpful to have around. This morning he asks how I’m doing. I tell him about going to the neuroimmunologists on Wednesday.
They said “This is it. This is as good as it gets.” Lying in bed, too tired to move, fighting the pain. That’s it. No more, no better. Lester grins cheerfully and says, “This is it? No more? You has to deal with this?” Yeah, Lester, you got it. “This is very bad.” Yup, this sucks. Quality of life. None. Gone. Then I change the subject. I don’t know what to say; I don’t know what comes next. I tell him I need a shower, haven’t had peri-care, clean underwear or brushed my teeth in three days. My last shower was four days ago and took two aides to hold me up. Neither of them had ever done a shower here before. Lester says, “You do not worry. You will sit down and I will do everything. You will be all right.”
It is about then that I realize that I have been in reaction to the doctor’s appointment. Halfway through it I realized that I no longer could sit up. With the help of staff, I laid down on the examination table until the attending physician came in. I had to have the resident repeat to the attending what I had said to him because I was too tired to repeat it. Do you know what it is like to be flat on your back and too tired to talk?
It took two residents, a nurse and an aide to get me from the exam table back into the wheelchair. Do you know what it is like to be too tired to sit up? To fear that you will fall out of the chair? Another ME/SEID sufferer wrote, “I was too tired to sit in my wheelchair.” This is it; this is our life.