Tuesday, May 19, 2015


For most people, having a surgery is a an unfamiliar, somewhat scary, event to occur. This isn't a bad thing in that it's not needed to correct a problem. For me, that's not the case.

I had a minor surgery done this morning. It was to get rid of a bladder stone and correct other problems in the plumbing. As soon as I rolled up to the counter to check in, the receptionist met me like an old friend and already knew my name. In the family waiting area, the main volunteer that gives updates knows my parents on site and doesn't need to ask for my name.

When I added today's procedure to my list of records, it came to surgery number 23. For some quads, this is a low number, but it's still a good amount. With familiarity, and not being able to feel below my head, I actually have fun with these little outings.

Unless it's an extreme emergency, you have mountains of questions and paperwork to go through for every procedure. That means I often get nurses that have never seen me before and are new to my jokes, needs, and abilities. The diaphragm pacemaker system is a novel to doctor and nurse alike and therefore gets explained about a dozen times. I don't bother with telling my meds anymore and just give them a printout of my current list. Anesthesia is where the real fun comes in play.

Just after getting rolled into the OR the doctor says what mix of drugs he'll be giving. He makes it sound like he's some sort of server in a restaurant, "Today we'll be starting with med A and mix it with a hint of drug b." As they start to get in your system the room seems to slightly warm up and it's interesting to hear how slow your speech becomes. The next instant you're in a recovery room with none of the same people nearby.

For me, my mind is fully awake, even if my body doesn't care to be, so I get to play. After one procedure, a person in the bed next to me was being asked to move their arm, make a fist, etc. So every time the other nurse said, "Can you move...," I would shake my head no. It took a bit for my parents to catch on, but they eventually figured it out.

Another regular part of the quad life is in the books for next time. It's an odd way to have fun, but it's hopefully for the better.

Wednesday, May 13, 2015

Learning Opportunities

The past couple weeks have had a few of the unexpected times occur, but I prefer to look at them as learning opportunities. If we learn from new experiences, then they will hopefully not happen again.

Shiley trachLast week Wednesday, about 2:30 in the morning, my night nurse was doing the normal routine of turning me and cleaning around the trach. First, the plugin for my DPS came out of its holder when she turned me. So, she woke me up while the wires were quickly unplugged, put back in place, and plugged in again. About a minute later, she is cleaning around the trach when the outside supports that hold it in place crack in half (top section in picture, photo sourced from Hopkins medicine). In my 30 years of have a trach, this was a first for me.

With the DPS, I can breathe perfectly fine without having my trach in, but it's good to keep in for clearing out my lungs and backup for using a vent. So, with one hand holding the broken trach in place, my night nurse uses the other to get everything together to change to another one. It was a good bit of acrobatics, but she managed it very well. When I'm due for a trach change next week, I'll be switching to a newer model. Hopefully it won't have the same trouble.

Yesterday I spoke at a local college, one class of EMS students and another of PTA (Physical Therapy Assistant) students. These were both first time events, but I think they went well. For the EMS class I had them identify what they need to do to get me out of my chair and what to take with me. The second class was looking at equipment I use and to make sure to talk to the person. Hopefully these will become annual visits and I can help more future medical professionals.

Just before I started writing, my day nurse for tomorrow called in sick. I'm scheduled for an evaluation for a new chair, so it looks like dad will be taking off work to take me. I'm thankful for parents that are willing to help me, but it's a common part of the quad life. More learning experiences will come, both planned and unexpected.

Tuesday, May 5, 2015

Depresion and Anxiety Week

This week is set aside to educate and help with depression and anxiety. These are major problems in the US with both those with no physical limitations and especially with difficulties.

One of the biggest hurdles for people with new spinal cord injuries (SCI) is going out in public. Not even large crowds, just getting out at all. A person using a wheelchair in public isn't very common, and we attract a lot of looks. It's especially true for higher level injuries requiring a chin controlled chair and ventilator. Some onlookers are just curious, like kids, while others are anywhere from amazed to annoyed.

With this common reaction, it's very hard for new injuries to get used to. For me, it's just a normal part of life and I just say hi or smile back. However, the more I'm out, and become a regular site, I start to blend in with the crowd. Unfortunately, that can take a long time and never completely happens. Other areas for anxiety can be getting use to a ventilator, having someone else help for all activities, and more. Anxiety can also lead to depression.

Depression in people with high, or any, SCI level is common, both at initial injury and throughout life. Losing the ability to care for yourself and relying on others is a big adjustment, especially if the person was active. I have had problems with this as well when I let the problems in the quad life get to me. There was a point once that I worked on getting my mechanical breathing discontinued. Fortunately, after a lot of prayers and searching Scripture, God brought my thinking as it should be for the life I've been given.

Overcoming these struggles is different for everyone. Some may need to seek counseling or just work with others in similar situations. For me, staying active and doing various activities is a great motivation. When I lose a client, it is very tough for me, but I'm working on seeing from the other person's point of view.

No matter what life you've been given, the tempter finds ways to get under our skin and disrupt correct thinking. If needed, don't feel ashamed to ask for help. The quad life is very challenging, but does allow for serving God in many ways.

Monday, April 27, 2015


I was talking with a fellow quad friend on Facebook a few days ago and the topic of living situations came up. That brought up memories of everything that was going on last year at this time.

Looking at nursing homes and not knowing from one month to the next where I would be living was a very challenging time. I'm glad that we are past it, but it's not the case for others in my situation.

The man I was talking with last week has lost his father, has few nursing hours, and his mother is his primary caregiver. Another gets nursing hours during the day, when he sleeps, and is up at night while relatives sleep nearby and he wakes them as needed. Still another friend has been forced to live in a nursing home for the past 14 years and is only in his early 40's.

Part of the funding for my caregivers is through the state and requires a lot of paperwork. My mom does pretty much all of it and spends about 20 hours per week on it alone. She was wanting to get out and take flower pictures the last few days, but end of month paperwork and other needs have kept her from being able to go.

The blessings I'm surrounded by are sometimes easy to forget, which is why I try to stop and think sometimes. I am in no way better or more deserving than anyone else and I wish others were able to have more ability to be active and live normal schedules.

In these past three decades I've been given more blessings than I can count. I would love to be able to help others more, but don't know the best way that can happen. Political channels are possible avenues, but the most recent changes have mainly had negative consequences and positive ones are few and far between.

This quad life I've been given isn't easy, but I have more than I can ask for. In your life, be sure to stop and count your blessings and thank those around you that help to make them happen. Ultimately, thank the giver of life and what He has done for you until next week and every week.

Monday, April 20, 2015

Looking Up

Recently, I have been watching a couple videos taken by NASA. The more I watch, I can't help to think what a tiny insignificant speck we are in God's creation. The first video is of the sun taken over a five-year period. This is followed by a very detailed picture of our nearest galactic neighbor.

Even with all this, God calls us to be His own, made in His image. Looking up and seeing the heavens declare the glory of God. Knowing that God cares for the quad life I've been given along with every person on earth is truly humbling.

Monday, April 13, 2015

While Parents are Away

My parents try to take a vacation or two per year just on their own. It takes some work to arrange someone to help me on the evenings and weekend, but we usually get it arranged with rearranging caregiver schedules and having grandmas come. Mom and dad took off last Thursday and plan to be back Friday. That means I have the house to myself, at least in a manner of speaking.

Saturday afternoon I was part of a radio interview. It was a national internet based radio that the participants, and hosts, just simply call in. We talked about life as a quadriplegic and the advantages if going sans footwear. The conversation then went to places that require shoes even for wheelchair uses. It was a fun half hour that I may need to do again. Today was a little more exciting.

About 9:30 the doorbell rang, so my assistant went to answer it. I could hear her talking with someone, but could only pick up part of the conversation. Pretty soon I could hear her say, "Well, he's back here in bed." A male voice answered, "Is he awake?" I listened to footsteps come down the hall and in walks a policeman.

He did well at not looking too surprised at seeing a man sitting in bed running a computer with a mouth stick. Apparently someone called the local redemption center and left a message of disgust about their hours. The cop said the message was quite colorful in language and the caller ID said my name. I assured him it wasn't me and that our caller ID has my father's name. I also couldn't help with anyone else I knew that shares my name. Our visitor left with that and I managed to stay out of jail. Hopefully that will be it for such visits.

For six of the eight evenings, my grandmothers are helping out. So far, they've been giving my ice cream desserts every night. By next week, I think I'll need to practice self breathing to get some exercise!

If I can manage to stay out of trouble with the law, the rest of the week should go well. However, you never know what to expect in the quad life.

Sunday, April 5, 2015


We have all inherited certain characteristics from our parents that are natural for all people. Some of them are rather odd when you're a quadriplegic.

As we grow older, we generally pick up after ourselves and if something drops, we either catch it or pick it up off the floor. When I see something fall in the corner of my eye, my head twitches in the same direction as if to try and catch it. That sounds logical, but not when you stop and think about it. What am I going to do about it? Will I throw myself on the floor and attempt to catch the object in my mouth? It might be fun to try, but I don't see it happening.

The broken bones that would come as a result of falling out of my bed or chair should be a deterrent enough. Also, no only will the item need picked up, but me as well! Something else we inherited from our original parents is the sin nature, and a conscience, knowing right from wrong.

Today we celebrate Easter, the resurrection of the Lord Jesus from the dead. With God's sacrifice of his Son, we can be forgiven of our sins and have everlasting life with Him. Our conscience tells us it's wrong to lie, steal, and commit adultery or lust after another person. Despite knowing they are wrong, these, and more, are things we as sinful humans consistently do in some form or another.

Whether you're living the quad life or not, every knee will bow and every tongue confess that Jesus is Lord (Romans 14:11). God's punishment for sin is Hell where adulterers, thieves, and those who sin God will have eternal punishment (1 Corinthians 6:9-10). Take the free gift offered on Calvary 2000 years ago and turn from sins.

As descendents of Adam and Eve, we all have certain instincts, not all of which were originally given. I pray that today you celebrated that gift, or will realize before it's too late the need for that forgiveness.