Last month, I had surgery on my right eye to treat complications related to my artificial cornea. I traveled to Detroit for surgery with Dr. Michael Trese, who has treated me for additional problems with my retina in the past. The surgery is one that I will need repeatedly as long as I am able to tolerate it–I have a membrane behind the cornea that contains blood vessels and calcium deposits, and over time it becomes so dense that I cannot see out of it at all. At this point Dr. Trese does surgery to remove as much of the calcium deposit as possible and treat the blood vessels so they will stop growing into the rest of the membrane. It is a hard thing for me to understand, but it does result in the return of my vision. My vision is not normal–the damage to my retina limits the vision that I have normally, and so the improvement I gain from surgery is very limited. But it is good to return to my own normal.
At the time of my surgery, my husband, Kevin was ill with a severe respiratory infection. The internist prescribed him antibiotics and steroids, saying that she understood that I needed him with me on the trip but that she was not certain the treatment would be effective. Still, we hoped.
In this case, we did not receive what we hoped for. At the end of my surgery week, Kevin was admitted to the hospital with pneumonia. I did not rest after surgery as I should have been doing. On the day after surgery, I was visiting one doctor’s office to explain why a doctor could not examine my eyes every so many months for retina damage that might be caused by a medication I am taking. At the end of the week, I was assisting Kevin at the hospital with advocating for what he needed. It was not until the third day that we felt comfortable enough with his staffing arrangement that I could stay home and get some extra sleep.
When Kevin was discharged, our lives began to change again. The internist prescribed him oxygen at night, starting that very night. He has been using CPAP for many years, but this was a new thing for him. Since he was being discharged at 10:00 PM, this meant that we arrived home and found the respiratory therapist sitting in the driveway. We took the bags inside, and Kevin got settled in his recliner, still unsteady on his feet after a week in the hospital. I ran around and set up his breathing machine in the bedroom. Suddenly, I heard the most awful noise I’ve ever imagined. The best way I can describe it is like a wall caving in. The cats came tearing through the house, and I went to the kitchen to find out what was going on. There was a huge machine on wheels sitting in the middle of my kitchen, and my dad said, “Where is he supposed to put it?”
I had never, ever seen an oxygen machine before. All I had seen were the portable units people had when they were out on the go. There’s no time for shock in our lives! It’s all about thinking fast and asking smart questions. I asked if I could look at the machine, and the therapist said yes without having a meltdown about the blind person. Fortunately, he had been to our house before to deliver CPAP supplies, and I think he had gotten over his own issues about blindness by that point.
After I got over the sense of hearing the wall falling down and realizing that it was only the therapist rolling the insanely huge machine across my floor, I set about thinking about where on earth to put the thing. We had not been prepared for the fact that we would need oxygen in the house until that day, let alone the size of the machine! The machine was the size of a whole piece of furniture! I would have liked to have a chance to rearrange appropriately. But I needed him to show me how to hook it up, maintain it, etc.
Into the bedroom I flew, hastily moved a couple of things around, and decided it didn’t have to look good. The room was crowded, but what did it matter? We only sleep there anyway. The most important thing was to not have hose all over the floor. It went safely behind the dresser. Hook-up was not so bad–we have already done CPAP machines and nebulizers. This is more of the same. I learned that the machine draws its oxygen from the air, and that made me more comfortable.
With the papers signed, the therapist left; and we had an evening snack and did a lengthy nighttime routine of nebulizers and medications. And then reality set in.
The new bedtime routine commenced. Kevin would have to turn the oxygen machine on, then walk over and get into the bed, put on his mask and turn on his CPAP machine.I was already in bed when this started. In fact, I was half asleep. I had forgotten about the therapist’s explanation that the machine would test the alarm when it was first turned on.
Kevin flipped the switch to turn it on. The machine’s alarm shrieked like the worst annoying sound ever designed! I jumped … and bit back a scream that would have shown off the heights of the human range. Over the course of the next week, we came to the decision that when he got up in the night for a couple of minutes, we might both sleep better if he just left the machine running.
I am still getting used to the sounds the machine makes. Sometimes I am more comfortable with it than others. As I lay there listening to it during one of those early nights, I remembered visiting a friend many years ago who had premature babies. One of them had a tracheotomy, and tubing ran all over the house. The baby played normally, and my friend made great effort to demonstrate to family and others that it was safe to treat her normally. I don’t imagine that it was easy emotionally for her to cope with all the medical equipment and issues and then turn around and treat them normally. It is a hard thing to live: needing so much difference and trying to live so much normal at the same time. I have much greater respect for families with little babies on oxygen, feeding tubes, etc. after going through this. What an insane invasion into life! And you cannot just roll the machine out to the curb and decide not to deal with it today.
I have done a lot of posting on Facebook to friends and family since this all began. Amid the prayers, love, and other general encouragements, people hava also expressed, “How do you do it?” That was how I once felt about my friends with the babies.. Being here now, with the oxygen and the eye surgery and the things that followed after, I realize more than ever that we do what we need to do if we choose to do it. I could have sagged into a dining room chair and bawled in front of the therapist. But we needed the machiine. So I did what needed to be done–and found that yes, I really did have strength for it.
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