Having lived with a disease like spinal muscular atrophy (SMA) for almost 30 years, I have gotten pretty good at dealing with whatever crazy situations life can throw at me. I have had to figure out how to suction my lungs with a “dead” suction machine, do a two-person lift with one person, and find a unisex, wheelchair accessible bathroom at an outdoor music festival. If I can get through all of that, I can get through anything. That being said, I go about my life quite confident that there is nothing that can pop up to surprise me and throw me off of my game. I am as cool as polar bear toe jam. It takes quite a sticky situation to get my blood going and my heart pounding like a conga drum in Jamaica. At least, that is what I thought until about a week ago. Last week I encountered a set of circumstances that I would have never expected in a million years, and it not only surprised me, it completely threw my mind off kilter. By rattling me like this, I was forced to experience what it is like to feel out of control and navigate an unexpected situation, which reminded me about an important aspect of life.
In order for me to get into and out of my wheelchair, there has to be two other people around to transfer me. It is not that I am heavy (in fact I am sure that all of my nurses could easily lift me without much effort), but since my body has to remain in a certain position during the transfer to avoid injury, it is extremely difficult for one person to do on their own. Since it is just my nurse and I here most of the time, and it takes two, able-bodied people to lift me, I schedule nurses and nursing assistants to come out to my apartment a couple of times a day to assist my on-duty nurse with doing a transfer. The lifting itself is extremely easy and is something that anyone with even an average amount of coordination can learn to do in a matter of minutes, so these individuals just have to come by, help with the lift, and leave (they are only in my home about five minutes). Due to the fact that this is a simple, quick task that nearly any warm-bodied person can do, my nursing agency can send pretty much any of their caregivers to come assist with it. While I do have a few “regulars” that do the majority of my transfers, every month there are a few lifts that none of my usual people can fit into their schedules, so I have gotten pretty used to having new individuals come by to give us a hand. Since it is such a fast, easy gig and having new people assist with lifts has become a normal part of my weekly routine, I was caught even more off guard when a completely unexpected situation occurred during one of my transfers several days ago.
Most days, I have a pair of transfers scheduled for late afternoon and early evening so that I can get out of my wheelchair and let my body rest for a few hours, and then get back up to have dinner and get work done. Roughly a week ago, I got up knowing that I had a new person coming by to help get me out of my wheelchair in the afternoon. If I am being honest, I will admit that training new caregivers to assist with a lift is not my favorite thing in the world. This has nothing to do with the people or even the actual process of explaining how to safely transfer me, but more with the “unknown” aspect of the whole event. It is a little stressful to meet some stranger, in five minutes verbally describe how you want them to literally hold your life in their hands, and then count “1, 2, 3, go,” hoping they understood your directions. They are nervous, you are nervous, and while everything pretty much always goes well, the entire event is riddled with stress and anxiety. Despite my jitters from knowing that I was going to have a new lifter that day, I was still in a good mood and having a decently productive day as it got to be about the time for my scheduled transfer. About that time, as my on-duty nurse and I expected from past experience, we got a phone call from my nursing agency saying that the scheduled lifter was having trouble finding my apartment (my apartment complex is a bit tricky to track down with GPS for some reason). The agency gave us his phone number, and my nurse called him to give him directions. It was at this point that I started sensing that something was not right.
I do not know how, but as soon as my nurse called and started giving this guy directions, I started to get this really bad feeling. The hair on my neck was tingling, my heart rate went up, and my stomach was going like an Amish butter churn after milking time. Call it ESP, divine intervention, or whatever else you want, but somehow my body knew that something was off, and that I needed to be careful. After a few minutes of listening to my nurse saying things like, “turn right at the next light….no, right….at the light…yes, the stoplight…,” the new lifter finally got to my apartment complex and was only a few moments from being in my home. During this little three minute window as he was getting from his car to my front door, I explained to my nurse how I was stressing out, that I had a really bad feeling about this transfer, and how I was thinking about not letting him do the lift. She heard me out and politely comforted me by reminding me that it was probably just nerves from having a new person doing the transfer and the frustration from trying to get him here over the phone, and she also added that I had not even seen him yet, so how could I know that it was a bad idea to have him lift. Despite the fact that everything she said was reasonable and true, her words did little to alleviate my fear, and my feelings of anxiety continued to grow. I just kept saying to myself, “I have a really bad feeling about this.” Then, as she was waiting by the window so she could see him coming up the sidewalk, I heard my nurse say, “No…Way…,” as her jaw dropped open in shock. It was as I looked over in her direction to decipher what her words meant, that I saw my new lifter, and finally knew what my body was trying to tell me.
When I looked through that window, I saw something that I would have been so sure would never happen, that I would have bet my life savings on it. As my nurse just stared at me with this “How the hell did you know?” look on her face, I saw my new lifter slowly walking up the sidewalk. He was a white guy of about 50 with an average build and nice clothes, and he would have been exactly like a lot of my other nurses, except for one little detail. He was physically disabled. Yes. You read that right. My new caregiver, whose sole purpose for visiting me was to lift me in the air and hold my life in the balance, was physically disabled. I cannot be certain, but it looked like he had some form of cerebral palsy or other similar disorder. It mostly seemed to effect only the right side of his body, but his hand looked to have a severe contracture, his right foot was turned inwards, and he walked with a jerky, uneven limp (think of “Kaiser Soze” from the movie, “The Usual Suspects”). As big of an advocate as I am for the physically disabled community, and as much as I believe in not placing limits on other’s abilities, there was no way that I was going to let someone in his condition attempt to transfer me. It just would not have been a safe situation for anyone involved. Since I am extremely sensitive to the feelings of inadequacy that can arise when your disability makes you unable to do your job, this left me in the unexpected, and incredibly awkward, situation of having to come up with a way to account for why I would not need assistance with a transfer without embarrassing him or making him feel bad. And, as if that was not enough to deal with, I only had about 15 seconds before he would be at my door to do so.
My heart was going a hundred miles a minute and my mind was racing as I attempted to digest what I was seeing, while also trying to come up with a polite and tactful way out of this impossible situation. My brain had been hijacked by my emotions, and I was in full on “fight or flight” mode. I do not know where it came from, because when he knocked on my door and hobbled into my apartment I had no idea what I was going to say, but when I opened my mouth words started coming out (and believe it or not they actually made sense). I made up a story about how one of my clients had made a last minute request on their project, and I needed to stay up in my wheelchair to work on it and make the deadline, so I would not be needing a lift. I also explained that since it was not his fault that I no longer needed his assistance, and he had driven all the way out to my home, that he would still be paid for his trouble (my nursing agency sorts this out when these types of things occur for “real”). He seemed to buy my little ruse, as he said he understood that things come up sometimes that we cannot control (so fitting for the situation I was in), after which he promptly limped away from my door and back to his car. Once he was a safe distance away, my nurse turned at me with a look of both shock and utter disbelief, as if to say “Did that just happen?” and “How did you know?” at the same time. Without her having to say a word, I replied, “Yes, and I have no idea.”
Before I continue and discuss what I learned from this unlikeliest of scenarios, I thought that I would briefly explain how this whole debacle occurred. I am sure you are thinking, “How could a home nursing agency send a physically disabled caregiver to do a transfer?” (much like my nurse and I were after it happened). I want to first make it clear that even though this man was obviously disabled, it was not so severe that he would be unable to do most tasks that are required of nursing assistants. Just from meeting him I could tell that he was a kind, caring person, and I am sure he would be great in a lot of home care settings, but he just was not physically equipped to safely transfer me (my “disabled employment” soapbox speech is over now). My nursing agency was aware of his disability, and he was scheduled to do my lift by mistake. Since anyone, or as we now know almost anyone, on their payroll would be able to assist with my transfers, when they get a shift that my “regulars” cannot do, they just call any of their employees who are available to see if they can come fill in. Even though they were aware of this man’s disability and had marked it on his file, they never put it together that he would be unable to transfer me, because it is a very simple job that “anyone” can do. It was just a matter of human oversight, or as I like to call it, “the downside of running on autopilot,” that led to this unexpected set of events. And despite how much stress it caused and the awkward moments it produced, everything turned out alright, and it reminded me about an important aspect of life.
If nothing else, this entertaining anecdote from my life is a wonderful example of how you can never know what life is going to bring. No matter how long you live or how many things you experience, there will always be scenarios that come out of nowhere and surprise you. While we all try to avoid these types of situations like the plague by having calendars on our phones, automating repeated activities, and keeping the same routine every, single day, this does not mean that there is nothing to be valued and appreciated in these stressful moments. These unexpected, awkward events have the ability to give you a new perspective from which to look at your life. They give your mind the shock it needs to come out of “autopilot,” so you can really think about what you are doing. This mental “wake-up call” allows you to examine your day-to-day life and routine from a more objective place, which helps you improve your life. These unlikely situations give you perspective on your world in another, more important, way as well. It is in circumstances like this that you get to see who you truly are deep down inside. When you are caught off-guard and placed in a difficult and unfamiliar situation, you get to test yourself and see what you are made of. Have you developed the mental tools to assess, adapt, and overcome this unforeseen, trying turn of events, or will you let your emotions overwhelm you and fall apart? While obviously we all hope we have the ability to adjust and persevere through anything, regardless of whether you successfully navigate through situations like this or not, you still gain valuable insight into your life. These moments act as a barometer to show us who we are and tell us what skills we need to work on to live happier, more fulfilling lives.
As they say, life is full of surprises, and I would not have it any other way. While a lot of these surprises in life, like my adventure with a physically disabled lifter, are so awkward and stressful that we try to avoid these situations at all costs, that does not mean we should not appreciate them. These scenarios, where the rubber meets the road, are the moments that test your mettle and show you what you are made of. By forcing you to look at yourself with open eyes, you gain valuable information that you can use to better yourself and improve your life. While I will always try to be prepared and religiously stick to my daily routine, my recent unexpected experience has reminded me that you need to appreciate these shocking situations when they occur and use the information they give you. They will help you become a better person and enjoy a more fulfilling life. So the next time you get caught in a surprising situation, before you dismiss this stressful event as pure annoyance and go right back on “autopilot,” take the time to appreciate this part of life. Look at the world, both around and inside you, and examine what you see. You will be amazed at what you find out, and this information will give you the priceless power to bring happiness to your world.
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