I will start out by saying that this article is from a truly authentic perspective, raw, and may be challenging for some to read. However, despite my dark humor and quirky positive outlook on life there are some aspects of living with a disability that are just challenging. Plain and simple. I wish everything ended with unicorns and rainbows, but at the end of the day no matter what you may be dealing with there are ways to cope with all situations. I promise I do have 2 great pieces of advice I work on every day at the end of this article!
Secondly, this is not article is not about romantic relationships. This is a post about ALL relationships, with parents, loved ones, spouses, caregivers, or anyone who helps assist many of us with disabilities who are completely dependent on others.
I’ve spoken with countless folks who need constant care and I started to notice a pattern. Leaving aside the consistent fear that comes along with being dependent on another human being, which I’ve written on extensively. I’ve come to realize something …
So many of us become chameleons in our daily lives. This can serve us very well in a professional capacity, but not always in a personal one. With respect to personal relationships and people we depend on to help us, I find that there are so many times I morph into a different person with respect to feeling the “vibe” in the room of a certain person helping me. What do I mean by this? Well, whoever may be helping you that day may be in a bad mood, doing with personal issues, a good mood, etc. After so many years of so many people helping you it’s quite easy to feel the energy of another person the moment they walk into your house or bedroom.
Whoever is helping you in your life because you need them, sometimes I find that I’m not always my authentic self because that person may potentially be bringing in their own life challenges into your personal life (a.k.a. your home). This is not always avoidable because you spend so much time with whoever may be helping you, so I have a tendency to go with their flow so to speak.
I’m working very hard on being my authentic self to the best of my ability in my personal life. I find it much easier to be my authentic self my professional life ironically.
It’s really hard. I work at it every day and I still find myself being quiet or not speaking at times depending on that person’s mood for fear of someone not wanting to help me. It’s quite a terrifying feeling knowing that you could literally die if someone doesn’t come into your home to help you whoever that may be especially if it’s unplanned. I’m a work in progress in this department.
With my quirky sense of humor and generally positive outlook I try to bring joy no matter who comes into my home, but it can take a lot of mental energy to keep this façade up at times. I still try though. I try to help in any way I can even if I probably should stay out of certain situations at times. I can’t help but wanting to believe the best in people and offer my help where I can even when it does burn me out.
I also know that I am my own best self-advocate. I always have been. For myself and I try for others. In all relationships, it’s so important to be explicit with those around you that they are also their own best self-advocates. I tell people exactly what I need with respect to my physical care, but definitely not always my emotional care. However, in return I need them to speak up when they have something going on as well. I can’t read minds. However, even if it is your mother, as an example, helping you there still need to be lines drawn respect to each of your emotional capabilities on that particular day or week or month.
I have enough to take care of any 24-hour period with a full-time job and my care, so it’s so important you keep the lines of communication open. It striking to me how quickly communication can be broken with a few miscommunications over a short period of time. It happens to all of us. Why? Well, it’s because we are perfectly imperfect human beings. Human nature.
Sadly, I speak with so many of my friends who are quadriplegics in wheelchairs and often times they feel completely trapped, utterly alone, and get taken advantage of with different people in their lives.
This enrages me. It does happen to me on occasion because I can be too accommodating to others needs and not think of my own. Again, a work in progress, but definitely food for thought.
Here are two personal life lessons and philosophies I’m working on in my everyday life that I have been practicing with my therapist:
1.) Encourage people around you to be their own self advocates and be your own.
2.) Be conscious of how often you become a chameleon to other people’s emotional needs (this really goes for any human in life)