I have discussed in other posts about how, due to the fact that I always need a caregiver with me, I am never totally alone or have complete privacy. This is something that took me a long time to adjust to and accept as a part of living with my disability, but by focusing on the positives of never being on my own, I have been able to come to terms with this part of my life. Things like always having someone to listen when I need to vent, always having a designated driver, and always having someone to have dinner or go to a movie with are all perks of living with a nurse constantly by your side. You would also think that never being alone would mean that I never have to worry about feeling isolated or lonely either, but unfortunately this is not the case. There are definitely days when I feel as if I am on a deserted island, thousands of miles from any other person, despite the fact that my nurse is sitting a mere five feet away. There are even times when I am surrounded by family, friends, and loved ones, yet I still feel like I am completely alone. These feelings of seclusion have taught me that there is a big difference between being physically isolated and feeling lonely.
Being born with a severe, physical disability has given me a very different perspective on the world than that of an able-bodied person. Simple, everyday tasks like getting dressed, eating lunch, or going to the bathroom are things that most people do without even thinking, but for me they are activities that require quite a bit of planning and forethought. Even though I see things through another point of view though, most of the time I can bridge this mental gap between my perspective and that of able-bodied individuals by respectfully discussing how we see things. Thanks to my ability to communicate well with others, over the years I have been able to help the people close to me understand the way I see things and how my physical limitations affect my life. Being able to explain my perspective on the world to my loved ones has definitely made it much easier to cope and learn to live with my disability, but as gifted as I am at talking with people, there are certain aspects of my life that no amount of conversation could adequately explain. Certain parts of life just have to be experienced in order to be fully understood, and just like I will never be able to truly know what it is like to drive a jet ski or jump on a trampoline, there are aspects of my life that must be experienced firsthand to fully comprehend. It is this inability to accurately portray my thoughts and feelings on certain parts of my life that can make me feel completely and utterly alone, even with a crowd of people around me.
By far the most difficult aspect of my life to effectively communicate to others, even my family, is my chronic pain. I have been experiencing some level of chronic pain since I was 13 years old, and over the last 15 years I have suffered from pangs of numerous different types, over various parts of my body, and of all different magnitudes. I have learned countless methods to manage my discomfort, as I have used everything from opiate medications to physical therapy to meditation techniques to alleviate my pain. In addition, I have also developed ways to deal with the psychological and emotional sides of living in constant agony. While I have gained lots of tools to personally cope with my chronic pain, and these techniques have been critical in my being able build an active, fulfilling life for myself, I am yet to find anything to help me explain what it is like to live in unending anguish to others. There is no way to fully convey what it is like to wake up every morning for more than 10 years and hurt all over before you even open your eyes. There are no words to communicate how exhausting it is to rarely sleep more than two hours at a time because your discomfort is so bad that you have to wake up to take painkillers. There is nothing to accurately depict what it feels like to live every, single day suffering from pain that would destroy most people, knowing that it will never go away and will most likely only get worse. While I have the tools to cope with the pain itself, having to go through this on my own since no one else can relate to my situation can make me feel very isolated and alone.
While I do want to accurately portray how isolating my inability to explain this part of my world to those close to me can be at times, I do not want to give the impression that I go about my day with a brave face, but I am actually this depressed, lonely cripple with no will to live. That is not what I am trying to say, nor is it the reality I live in. The vast majority of the time actually, the coping strategies I have developed to deal with my aches, soreness, and spasms are more than enough relief to get me happily through my day. Just like everyone else however, there are also those days every now and then where my pain gets the best of me. Those days where I am so physically and mentally exhausted from constantly hurting that I just want to take a day off and let someone else shoulder my pain for a while. That is when my inability to share this part of my life with my loved ones can make me feel so alone that I might as well be on another planet.
These difficult days that arise occasionally would probably feel much more isolating, be much harder to deal with, and quite possibly even become life altering, if not for the unconditional support of those closest to me and the recent social media boom. Even though my family and closest friends realize that they will never be able to truly understand what my chronic pain is like, they are still unyieldingly and unquestioningly supportive on my worst pain days. They know that they do not need to fully grasp what I am going through to take care of me. They just sit beside me, hold my hand, and do anything else they can to make me feel more comfortable. This unconditional love not only helps me to overcome my pain, but it also reminds me that, despite my unique perspective on the world, I am still connected to it and will never be completely alone. In addition to the support of my loved ones, the recent rise of social media sites has also helped alleviate my feelings of loneliness. Now that websites like Facebook, Twitter, and Pinterest have become household names, it is now extremely easy to connect with people of any age, race, or ability. By joining a few chronic pain themed Facebook groups and such, I have been able to interact with other people who are able to understand what I am going through and feeling. Through sharing my story and reading those of others in similar situations, I have actually been able to eliminate some of my feelings of isolation altogether.
It is important to remember that just because you are always around people that does not mean that you are never lonely. Often times, people do not even realize how isolated they actually feel, because they think that since they are always surrounded by people they could not possibly be lonely. In order to lead a happy, fulfilling life, it is important to recognize this fallacy, take a step back, and examine your social world and how you feel about it. If you do find yourself feeling secluded in certain areas of your life, turn to those closest to you for their unconditional support. Also remember that we live in the information age, and that you are never totally disconnected from the world. Find someone to share your story and what you are going through with, so you do not have to carry your burden alone. No one, not even yours truly, can be strong all the time, and there is nothing wrong with tagging in someone else every now and then. This will not only help relieve you of whatever burden you are carrying, but it will also remind you of how connected you really are to the world and the number of people you have who love you.