Wednesday, May 27, 2015


Last week I had the opportunity to celebrate a birthday with a friend. He is a fellow vent dependent quadriplegic and has had to live in a nursing home for the past 14 years. Some friends from a local
church came as well and we had a nice little group.

Being well into my adult years, birthdays aren't anything to momentous. However, it is nice to get cards and birthday wishes from friends and family. I can't imagine having nobody around me to recognize the day. Unfortunately, it seems to come with living in a nursing home.

Earlier this week we celebrated Memorial Day. It is great to recognize those that have served and died to protect us. We enjoy many more freedoms than other countries and are very fortunate to have them. It sometimes seems, to me, though that we are quick to help other countries,
but not necessarily defend those that need help in the US.

We have made great strides in the last 25 years for rights of those with disabilities. However, if someone has the crime of no private insurance or family assistance, you are forced to live in a facility. That somewhat sounds like a jail sentence with no possibility of parole or getting out early for good behavior.

Fortunately, places do exist that will take us and we aren't completely shunned from society as some places. Living the quad life has a lot of challenges, and it's great to be able to celebrate milestones. One day, I look forward to celebrating in a new body in fully restored paradise.

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.