Someone like me

As the years have progressed and God has given me various medical obstacles to overcome, I often must resort to using medical devices to get through my day. In 2010 when my intestines stopped working, I needed to use a feeding tube. First I had a nasojejunal feeding tube—a tube which went up my nose, down my throat, through my stomach and ended in my small intestine. After ten days, the tube was replaced with a J-tube, a tube which went directly from my small intestine to the outside of my abdominal wall.

Shortly after getting my feeding tube, I was overjoyed as I saw a boy in a wheelchair also with a feeding tube. Here was someone else going through the same challenges of using a feeding tube. For a few short moments, I did not feel so alone in the world.

As time has progressed, using a wheelchair is my normal mode of transport. I know using a wheelchair is not that uncommon, but being  a “young” person (i.e., someone under the age of 80) in a wheelchair often triggered people to ask when I was going to recover from my injury or surgery. It seemed unimaginable to folks that I had a chronic medical condition which will make it necessary for me to use a wheelchair for the rest of my life.

Two years ago when I received my tracheostomy and started using invasive ventilation, people would stare at me wherever I went. As uncommon as it is to have a feeding tube or use a wheelchair, using a ventilator to breathe is even less common. I did not realize this, but the only time I have ever seen another person on a ventilator is in the hospital...and most of the time the person is in a drug induced coma as his body heals from some severe trauma or bad infection. I have never met another person who uses a ventilator as part of his everyday life.

This winter as I was exiting the grocery store, I caught a glimpse of a man around 65-70 years of age with a tracheostomy. He did not require a ventilator to breathe, but he did have a trach tube in his throat. I was overjoyed to see this man! I tried getting his attention, but unfortunately, he was walking  in the opposite direction from where I was. In that moment, I suddenly realized how isolated I often feel. No one else has to carry around 17 pounds of medical equipment just to breathe. No one else has to deal with trach tubes, tubing, tubing connectors, distilled/sterile water for my humidifier, constantly checking my ventilator for air leaks and battery levels, etc., etc. Very few people I know have to intentionally isolate himself from others because he has a weakened immune system. Someone sitting next to me sneezing could mean a lengthy stay in a hospital and severe damage to my airways. Besides being mentally isolated from the rest of the world, I am also often physically isolated to protect myself from illness.

This life can be a lonely path to travel, but I am thankful for God’s abundant mercies and kindnesses. God often reminds me that wherever I am, He is right beside me, leading me in the way I should go.