Monday, February 24, 2014


Relying on others for everyday tasks is a fact of life for high level quadriplegics like myself. For the past 29 years I've depended on someone to help with eating, drinks, to scratch an itch, dressing, bathing, every sort of physical need. In order to be able to type this entry I need to have someone move the computer, keyboard, and mouse to where I can reach them.

Some people choose to be caregivers as a profession. For me, I rely on nurses of different levels as well as aides or people with no formal medical training that have been taught to do the cares I need. This group allows a rest for other caregivers and enables me to do more outside my home.

The final group are those that suddenly found themselves in the role of caregiver, my close relatives and especially my parents. They are the ones that are here through everything, they know what works and what doesn't. Parents are the ones filling in when the professional caregiver can't, sometimes foregoing their own needs. For them, there is never thanks enough for all they've done for me. Yes, we get annoyed by each other at times, but they are the ones I can count on.

I have had many times when I would so like to reverse the roles and be able to help. Unfortunately, that's not an option in the quad life. There are times that I try to wait as long as I can to ask for help for something, just to let them rest a little longer.

As we are in the process of trying to get new insurance, what the role of care giving will take on is uncertain. Will I be able to stay with my current caregivers and continue life as I know it? Will something different come along that I go to a care facility and my parents change to visitors that can help?

In these three decades minus one, I have had caregivers leave that we wondered who could replace them. God has always provided, through many different people in a multitude of ways. I pray that I can work with whatever situation is given me, and the caregivers alongside will be there as needed.

Monday, February 17, 2014


Since the very first day of creation, time has been steadily progressing. Every turn of the earth marks a new day. The days quickly add to weeks, months, and years. For a young child, a few minutes can be an eternity, but when those minutes have added to a few decades, it's a span that passes too quickly.

When my time was nearly three years and three months, the way I would spend the rest of my given time changed. In a few days, it will have been 29 years since I started the quad life. There was a time when I thought this was an unimaginable span, but it has now come.

From the first few minutes to the present, God has been watching over the time I've been given. He started by providing someone to breathe for me when I could not. In the expanse since then, I have been given over 228 million breathes by mechanical ventilation.

As the years accumulated I went through Christian grade school and high school, then on into college. During this period, I was given a time of three years to live outside my parents' home. Since then, I have been able to accumulate enough time to say I have worked for myself for a full decade. The children I now get to work with at schools were not born when I was given the chance to start speaking.

What time I have left is not known to me. I have been given more years than others I knew, but not as many as some. How the remaining time will be spent will be seen as it comes. When the minutes have reached the sum of another week, I will again see what has come.

Tuesday, February 11, 2014

Sick Leave

It's never fun being ill, and that has unfortunately described me the past six days. With a lot of congestion, suctioning, and little to no sleep, I've been doing things only as needed. I pray that next week shows an improvement an actual post to read.

Monday, February 3, 2014


For most people, myself included, work is a requirement of adult life, but generally not enjoyed. Some are able to do what they love for employment, but it's unfortunately not the norm. As I posted a few weeks ago, working during the quad life is part of a balancing act between priorities.

After I graduated from college, I took the first few months to look for work and had interviews at a number of businesses. During this time, I signed up with a temp agency and shortly after was called in to work at a place in West Des Moines. After bankruptcy, an airline was restructuring how they handled employee benefits. We would take phone calls from employees, pilots in flight, mechanics, stewardesses, and get them signed up for the benefits package of their choice. Phone operation and data entry wasn't what I had in mind with a degree in Information Technology, but it was my first real job. I worked forty hours a week, or more, for a month and a half. It was a great feeling supporting myself and living a regular adult life.

A few months later I had another temp job, but this was one I found on my own. For this one, I did data entry for job counselors at a division of Iowa Workforce Development. I commuted from my apartment to downtown Des Moines and again did a forty-hour work week, generally. The work often ran out before the day did, so I had a few times where I left early. Once again though, the time ran out on the assignment and my position was complete. A few years later, it was found out that the CEO was taking out large sums of money for herself, so it ended up being liquidated and work done by a local university.

It has been over ten years since I worked those positions and I can't see how I did it. Now, if I was working a traditional job somewhere, every 45 minutes, I would have to stop and reposition in my chair for fifteen minutes. In an eight-hour day, that adds up to two hours of tilting. When I'm tilted, I can't run a computer, at least not the way I do it now, I've tried before. At the last temp job I did, job counselors would take fifteen minute smoke breaks every hour, so the time would be similar, but I wouldn't feel right getting paid to do nothing. When I did work full-time, I adjusted when I could, or for longer periods, but not so far that I couldn't work.

Back then (that makes me sound old), my body was more forgiving, so I could get away with it. Now, with chronic pressure sores, there's no way I could. Last month, all of January, I worked a total of about 26 hours. If you divide that into the 22 working days of the month, that's not much more than an hour a day, and that was a busy month. Granted though, I don't record my time as I would in an office, I only record time I'm actually working on a client's site. If I'm emailing clients, on the phone, putting together proposals, working on book work, none of that is recorded. If I did, then I may get up to a few hours per day average.

Worst of all is not doing anything, not having a reason to get up in the morning and do something productive with the life I've been given. Maybe sometime this body will improve, and work increase, to levels more toward real work. Until then, that's this week for the quad life.