In the first part of this series, I discussed the negative emotions I experience when I feel like I am being bombarded with medical advice by my nursing staff and loved ones when I am sick. While these individuals are only trying to help me, it can feel like they are trying to make decisions for me, and this loss of autonomy is a big deal to me. Having the perception that I have to decide between my control over my life and my health has actually caused me to make choices that were not in the best interest of my physical well-being in the past. Thankfully however, in addition to these negative feelings that erupt within me, there are also copious amounts of positive, powerful emotions to shift my perspective to a happier, more centered place. These positive feelings are the topic of this second part of my Roll Models Series, “A Caring Conundrum,” and this will be followed by the third, and final, part that ties everything together.
Having had nurses since I was 15 years old, and having lived on my own with 24 hour nursing care for the last decade, I have pretty much seen it all when it comes to homecare. I have had caretakers that were good, like the one that gave an exam to a class I was teaching because I was too sick to, that were bad, like the one who stole from me, and that were just downright weird, like the one who called his parents his roommates. That being said, I know how extremely fortunate I am to have the nurses I do and to have a homecare agency like CareStaf. I truly believe that all of my nurses, as well as the office staff who do my scheduling and such, see me as more than a paycheck or business opportunity. They see me as a person trying to live his life, and they want to help make my life as great as it can be. These incredible individuals, all the way from the owner of CareStaf, Dennis, to the staffing coordinators to my nurses, don’t merely care for my health, but they care about me as a person. Especially in our current age where the almighty dollar reigns supreme, this is not an easy thing to find, so I am eternally grateful to have the nursing team I do.
When I get sick, it is this fact that my nurses care so much about me that makes them want to give me the best possible medical advice they can. They know how quickly my health can deteriorate, and they worry that something will happen to me. Although this can result in my feeling like they are trying to run my life, the way they care about me is something that I would not trade for the world. It is exactly that my nurses care about me as much as they do that makes it possible for me to live an independent life 600 miles away from my family knowing full well that at times I am going to end up sick and in the hospital. I can live this incredible, independent life because I know that when I get really sick and scared, they will be there for me. They will sit up in an uncomfortable folding chair beside my bed all night to watch over me. They will stay with me in my hospital room on their own time until my parents can get to me, just so I won’t be alone. They will stop hospital staff from hurting me trying to get chest X-rays and such by being my voice when I am too ill to speak for myself. They will not let anything happen to me, and knowing that fact is what helps give me the courage to live on my own.
If not for this feeling that no matter what my nurses will keep me safe, there is no way I could lead the happy, fulfilling life I do. The way that my nurses care about me acts as a mental security blanket that brings me comfort in the face of my disease. While I have every confidence in my ability to make the best possible health decisions, if and when my body is just too sick to allow me to make these choices, it is nice to know that I have a whole team of nurses that will keep me safe. This safety net keeps me from living in fear of what my disability will throw at me next, because I know that even if I fail, my nurses will be there. The way they care about me and the trust we share is one of the most precious things in my life, and I am reminded of this fact every time I am sick by the concern and worry on my nurses faces as they work to give me the best medical care they can. Even though I may feel like I am losing my autonomy at times, this negative feeling is no where near as powerful as the love and compassion I feel as my nurses care for me.
Fortunately, as is almost always the case, when I am sick the emotions of love and caring that I feel are much more powerful than negative emotions like irritation and resentment. This is what allows for me to maintain perspective and appreciate the way my nurses care about me, but it is not as easy as merely recognizing the two sets of emotions. You have to be able to work through all of these complex, dynamic feelings in the moment in order to properly value how much they care. This ability to sort through both the good and the bad emotions that arise will be discussed in the conclusion of this series.