How caregiving made me a better man

And a better person.

Today marks the one year anniversary that multiple sclerosis took my princess Tracey from me. In the past year, I have gotten on with my life, but there is not a day that goes by when I don't think about her, and what we both went through, especially in the final two weeks. As I reflect upon my time as a caregiver, I realize that she did as much for me as I did for her, and the things she taught me will stay with me forever, and I am a better man, and a better person because of her.

Tracey suffered from secondary progressive MS for twenty three years. She was wheelchair bound when we first met, and had incontinence issues, but other than that we led a fairly normal life for our first five years together. One thing I learned early on was to do some advanced planning if we were to go out. I had to make sure where we were going was wheelchair accessible, so my awareness of my surroundings increased. Until then, I had always been a spur of the moment kind of guy. But now I was doing much more reconnaissance on our destinations. A ramp does not necessarily mean accessibility, especially in a city like New York where businesses need to maximize every square foot, and many places we wanted to go simply did not have room to maneuver a wheelchair.

I have mentioned in some previous posts that I have a disability. I am a hemiplegic, due to a stroke as an infant. As a result, my body is totally asymmetric: On arm shorter than the other, one foot 3 1/2 sizes smaller than the other, and so on. I worked very hard to make this disability have as little effect on my ability to lead a normal life as possible, and I believe I have succeeded in doing so. But I would always have a tendency to get frustrated when I had difficulty doing something that others had no problem with. As Tracey's abilities diminished, I saw her exhibit a superhuman level of patience with herself. Sometimes, a very simple task would take a long time for her to do, and when she would finally accomplish it, she would smile and say "Yay, I did it." After witnessing that a few times, I started to feel pretty silly with my own frustrations. I became much more patient with myself as the caregiving chores became increasingly difficult, and I carry that increased level of patience today.

When the chores extended into treating bedsores and changing blocked catheter, I also a developed a strong "failure is not an option" attitude. Things had to be done correctly and completely, or the consequences could be dangerous. I became better at treating the bedsores than the visiting nurses were. This experience has allowed me, even today, to never say something is "good enough" Any task I undertake today is done to the best of my abilities.

Finally, several years ago, I endured a bout with proximal neuropathy, a condition which, in addition to being extremely painful, led to a great deal of muscle wasting, concentrated in my left leg, which was already the smaller, weaker one. At the worst stage of this condition, there was virtually no muscle left on my leg, which made standing, let alone walking almost impossible. When the neuropathy finally stabilized, I began an extreme workout program to attempt to gain this muscle back, which also let me build up never before used muscles in my left side. I went from being basically unable take care of Tracey to the more difficult chores becoming quite easy. I have maintained this routine to the present, and many things that were difficult in the past have become much easier. Like the bowflex guy, I'm in better shape at 55 than I was at 25.

I'll never forget the things I've learned as a caregiver. Not only will I benefit from these lessons, but everyone I interact with will benefit as well.

I miss you, Tracey, and I will always love you and be grateful to you.