One of the many things that every adolescent must go through at one point in their lives is the transition from childhood to adulthood. For most, this entails saying goodbye to their parents and cautiously entering the “real world” that our parents have consistently warned us about throughout our lives. For someone with a disability like SMA, however, things can get a bit more challenging.
This transition tends to focus on the shift from relying on family to relying on nursing care, and the truth of the matter is, it can be daunting to imagine a life where your family no longer has full control of your care and needs. That is why I came to the realization that the first step in this transition process isn’t the transition itself, but rather opening yourself up to the concept first. Not surprisingly, my experiences taught me that even though I was ready, my parents still needed to think things over. Sometimes you need to work with your parents and remain patient in order to avoid overwhelming them.
My mother would always remind me that the problem wasn’t that she wants me to stay, but that she naturally worries about my own health and how I’ll safely look after myself with the help of someone that she hasn’t known for more than a few months. In this situation, I found that by slowly introducing my nurse and increasing her hours over time, I was able to become more comfortable with this concept, and my parents both began to trust the person that would eventually become one of my primary caretakers.
Choosing the right nurse is one of the most important things to remember during the transition process. For those living with SMA, the person who becomes their caretaker is going to have to build onto the patient’s sense of freedom. I have been in multiple situations with caretakers in my life, and in a few instances, I’ve noticed that some nurses just aren’t meant to work with certain patients. It is absolutely crucial to value your own comfort over everything else. The last thing you want is to feel like your freedom is more limited than it has to be.
Freedom to live independently can be a life-changing thing, and since every person is a unique individual, they may all require a unique plan of care. The process of transitioning should be entirely centered around the goals and limits of the individual person, and with the right approach, there isn’t much that can stop you from getting the most out of life.
One interesting thing that most people don’t realize is that gaining independence doesn’t have to solely rely on nurses and agencies. A large part of the process actually involves getting help from friends and acquaintances that you see on a regular basis. Living with Type II SMA and planning on attending a 4-year university, I began to involve my peers in some of the easier aspects of my care, such as cutting up my food. Just this task alone has given me the opportunity to explore places without a designated caregiver while simultaneously broadening my horizons. Even now, simply grabbing a coffee with some friends would have been much more difficult if it wasn’t for the change in mentality that comes with the process of increasing independence.
For those who may feel uneasy about the road to adulthood with SMA, remember that nothing is impossible if you set your mind to it. Independence doesn’t come as a wave like most expect, but rather in small increments that slowly lead you to adulthood. The opportunity to make your own choices about your health and care is especially satisfying. But even so, the choices you make about your health have to coincide with what you believe is best for you in the long run. For some, things may not change very drastically at all. The road to independence isn’t standard; you have to pave your own path that you believe will lead you to the life you desire most.
Sometimes we tend to limit ourselves in life out of fear. This can be especially true with the spinal muscular atrophy (SMA) community, where we often depend on others for menial tasks throughout the day. There’s a familiar feeling that we face, the feeling of dependency on others that we can’t seem to possibly ignore, and as a result, there are times that opportunities that once seemed so wonderful ended up becoming “unrealistic.”
