Seems like for years and years, there have been labels attached to people. The census records state our sex, our race, etc. Newer census records tried to label us with things such as “gun owner” and other labels. As a former teacher, I can tell you that the children that came to my classroom, as with all other teacher’s classrooms, came with labels such as gifted, mentally challenged, hyperactive, behavior disorder, speech impaired, disabled, etc. And many will go through life holding on to those labels as if it makes them who they are.
It is not just census records, school records, employment records, etc that use labels on us. We do it to others and to ourselves. Some people take the labels or tags and use them like patches on the sash like a scout wears and wear them as if to tell the whole world that they are this or that…whether good or bad.
I often wonder when will people start introducing themselves by labels or tags.
Hello, I am chronically ill Hello, I am blind
Hello, I am disabled Hello, I am tall
Hello, I am short Hello, I am gifted
Hello, I am speech impaired Hello, I am a slow learner
Hello, I am beautiful Hello, I am ugly
Hello, I am nauseated Hello, I am chronic pain
Hello, I am auto immune disorder Hello, I am exhausted
Hello, I am a Christian Hello, I am an Athiest
Hello, I am a Native American Hello, I am Chinese
And I could go on and on and on. All of these are descriptions of things that are what is wrong or right with us. They are not who we are and yet I see people daily use these things over and over and over in their daily posts, daily conversations and comments as if it were another merit badge on the sash and that gives them more status.
I have always believed that people should not have to tell others what they are, their actions should do it for them. I should not have to tell people I am chronically ill for those that matter know it already. I should not have to tell people that I am exhausted or in pain, for those things show without me even trying to show them. In fact, they show with me trying to hide it.
Who and what we are is what we are inside, not all the things out side of us. There is no badge for that except the honor of knowing we are being a person of truth, honor and integrity. And we do not have to tell people that we are honorable, honest or a person of integrity for it will show in our actions and words. The shawls of descriptions listed up above in the Hello, my name is section that so many like to wrap around them really mean nothing if they are wrapped around hollow bodies.
I sometimes wonder, is the self image and ego of people so low that they think that using these things to describe who and what they are gives value to their lives? It might bring attention but what kind of attention? I have a friend that is Native American. She does not have to remind me every hour that she is Native American. I see it in her words of wisdom, in her actions of burning sage and her moccasins and in her honesty, integrity and morals that show me the values she was raised with. She does not need labels.
So, what is it with all the labels. I remember when it was thought bad to label children and yet so many as adults are doing it today…labeling themselves as this or that and then wondering why people do not really know who they are. There seems to be an attraction to having a label and I see it more and more in the chronic illness community as people try to collect labels of this or that disease or syndrome and wear it as if that is all they are…some disease or syndrome.
I have said repeatedly…I am not my diseases..I am not my chronic illness. I am Deb, who is eclectic, loves to do photography, to draw, to color, to write, to read, loves being a mother and grandmother, loves the country and being outside, loves plants and gardening even second hand with my son, has a wicked sense of humor, loves to laugh, loves being a friend, loves good movies, loves cooking and smelling son’s cooking now, loves simplicity, honesty, and integrity in a person, is generous in heart and spirit and with what I have, loves my little church family, loves the mountains, and just loves life in general.
Now, notice, I did not mention all the things wrong, did not use terms like “Loves to do photography as I painfully hold the camera with all the weak strength I have even in my exhaustion”. I said simply “loves photography”. I did not need all the other “labels” of painfully, weak, exhaustion because those are not who I am but what is wrong with me.
I see so many ill people who spend their lives worrying about what strangers or people who barely know them think of them. They worry about what people in a store or out in public might think. My question is and always has been “why?”. Why do you care what someone you do not know thinks about whether you are sick or not? They have nothing to do with your life other than a casual encounter.I find that if I quit wrapping myself in the shawl of what is wrong with me trying to prove to the world that I am all these things and wrap myself in who and what I really am …then people will see the real me and the other things such as what is wrong, what I look like, my race, my beliefs, my spirituality, my faith, my honor, integrity, values… they will know without me telling them.
The Eye doctor said my eyes are doing well and we ordered my new glasses now that the cataracts have had time to heal. He also found a hair growing on the inside of my eyelid causing me pain and removed it and talked about using laser to stop this one hair that keeps growing back and causing me eye problems. It has done this for about four years now. I will have to think on that one.
My pain specialist has moved my Radio Frequency Ablation up to tomorrow from the first week in June for the lower spine and I am so glad. The horrific nerve pain that my spine gives on the inside of my thighs down to my knees is back and I will say it is worse than the pain I had from the Partial nephrectomy, from the fall tearing my rotator cuff, etc. This kind of nerve pain is the horrific.
Yes, I have to recuperate…but it is worth it! worth it! worth it! Anything that moves us forward is worth it. It is so important to move forward in life instead of remaining stagnant where we are. It is so important to keep focused on the positive.
And so I leave you all with these words…if you want happiness ..quit expecting others, things or places to do it for you. And if you are chronically ill and/or disabled like me…then “get up off that thing” and find your joy each day. It is up to you to do it and it is a choice. Complaining is a choice. Whining is a choice. Laughing in spite of is a choice. Finding joy in your day is a choice. So, “get up offa that thing” and make your day be the best it can be.
I was reading a page called “one room world” or something to that effect and it was about a chronically ill woman who had lived in her room for several years due to her health. As I read, I could see the similarities in our lives and thought that most people really have no concept of what having a one room world is like. This young lady is inspirational and a survivor and she motivates even me to keep fighting to live life as full as I can.
I told someone the other day that I fight so hard to get up on my feet for a few steps because there is a HUGE difference in being able to stand briefly and put yourself in a wheelchair and not being able to move your legs at all and having to be pulled and dragged into a power chair or wheelchair.I have been at both points in my life and each time that I found myself sinking into the “can not help myself get into a chair” category, I fought even harder to regain those few steps.
There is a HUGE difference in being home most of the time and going out occasionally to do something other than doctors. The difference is that one can still get out of the house even if someone is taking them for a short while and visit friends or go to some place and eat, etc and they pay dearly for those trips but are willing to make them occasionally in spite of the pay out that comes with it. And the other one that does not leave their house or their room except for doctors because the pain is too severe, they are too weak and leaving their rooms is not worth the payout and those that are room bound are usually bed bound. There is a difference in that too in that staying in bed all day is not the same thing as not being able to leave the bed all day.
But, living in a one room world does not mean we are unhappy or that we never have anything good come our way. Most of us rely on the computer as our window to the world and we have learned to use our minds in a greater capacity than most and can visualize what most can not. I not only can visualize dancing, which I love and used to do weekly, to the point that I feel the motion and feel the air move around me as I mentally dance.
So many of you have been with my blog and followed my journey as I fight to keep going and to keep the joy in my one world room and am fighting to at least expand my room to the kitchen and even patio in my power chair. You have encouraged me, inspired me and walked with me and have made my journey easier just by your presence.
Down on the right side of this blog page are pictures of my one room world and you will see it is a room filled with treasures, colors, things I love and things that distract me like the chines on my stained glass ceiling light. Son picked that out when we moved in here because he said it would give me something to enjoy looking at when I was hurting so badly. And it has been.
Yes, my one room world has medical stuff all over like the hospital bed, oxygen tanks and oxygen concentrator with green hoses running from them, forearm crutches, braces, power chair, rolling shower chair and roll in shower, needles and medicine bottles..but if you look at the pictures…hopefully you will see what I see..which is an eclectic room filled with treasures of which many are gifts given to me to make life easier, encourage me, inspire me…like the Native American fleece blankets I have on my hospital bed that brighten my room and are so soft they help my pain, or the cloud book that I love looking at or the cards sent, or the reborn dolls, or the dream pet that shines my stars on my ceiling for me..things of love and reminders that I am a real person…not a “chronically ill” person…but a real person with real dreams and wants and desires who has learned to live in her one room world. A real person who chooses to not focus on being chronically ill but rather focus on being a survivor, a warrior that puts on her wonder woman headband and starts the fight over each day and sometimes starts over several times a day.
image from www.comicvine.com
Expectations are what we place on others or people and are this idea we have in our minds as to what we expect in return. When we are disappointed, then we can easily become hurt or upset. For example, someone fixes me a vegetarian hamburger and my expectation is that it will taste like a beef burger and when it does not, I am disappointed and do not want it anymore.
I was talking with a friend tonight as I was up with pain about expectations and how we can have expectations of those around us and when they do not perform to our expectations, we can become very disappointed, upset and disillusioned. And yet, what we do not realize is that it is our expectations and not theirs. We have to accept people where they are and not try to mold them into what we want. If we can not live with them how they are, then we need to move on.
I can remember when I was young wanting a man who was strong, protective and loved me as much as I loved him. And I was disappointed on some point every time. It took me years to realize that I had to accept people where they were and not try to make them be the illusion I had in my head.
The same thing is true about life. If we expect life to be this fairy tale, storybook video, we are going to be disappointed. No one has the perfect life and there will be ups and downs. But if we have this high and unrealistic expectation that there will never be problems, we will be disappointed every time.
I remember thinking why could so and so not love me the way I loved them. And that was an expectation I was placing on the other person. And I learned that even though they did not do all the things I thought were romantic or supportive, they did do other things that were loving and supportive. And I learned to see that I was trying to mold them to be like what I wanted but that they loved the only way they knew how. To them, love was providing for us and not all the romantic things that the movies lead us to believe is the perfect romance. And so I learned to change my expectation so that I found myself happier.
They say if you want to love someone like they want to be loved, watch them and see how they love others. For we love others the way we want to be loved. Some people are very sentimental and give cards and flowers and do all those things and other people are not but show their love in other ways. So, learning to watch and see how someone loves others helps us to show them the kind of love they want and helps us to see that they are showing us love, just not our expectation of love.
Everything in life, we tend to have expectations on…food, jobs, people, homes, children, friends…and sometimes we have to re-evaluate our expectations and make sure that they are possible and even realistic. It is good to have expectations but when things do not go as planned, we have to ask ourselves are we disappointed because of the expectation we placed on this or that.
My health is something I have expectations on and as I grew with being disabled and chronically ill, I realized that if I set myself up to this expectation that all of life will be nothing but “being chronically ill”, then I was setting myself up for failure and pain. Life is how we see it and I choose to see mine as happy and normal for me and so I do not find myself trapped by my expectations.
I may be chronically ill and disabled, but I do not wear those things like a cloak or badge of honor to flash at everyone and expect my whole life to be one of misery. That would be an expectation that could affect my whole outlook on life. It is all in how you view it. Chronic means ongoing it does not mean that every minute of every day is going to be one of misery. There is still joy in life and still talents I have that I can use to entertain myself and fulfill myself.
So, when you face disappointments, ask yourself was your expectation holding you down. You know..that vegetarian burger might actually taste pretty good if I quit expecting it to be a beef burger. Being chronically ill might not be as bad as expected if I change my expectations and start looking at the good still in my life. And above all, my happiness is up to me and I will be as happy as I expect I will.
Took this today. If you look there are several faces and profiles but the biggest thing in this picture is the eye looking down…about halfway down the middle of the page to the right. I have not altered or photo shopped anything on this pic.
I walked ten steps with my fore arm crutches. First time in months and shaking like a leaf and pain to the moon. But I did it. Whooooo hooooo. Oh yes I did. Now crashed on bed but cheering in my heart. Whooooo hooooo
- Comfort foods
- Dreams for the future
- Eating Out
- Etta James
- Female Impersonators
- heart center
- helping others
- Native American
- New Year's Resolution
- Protection from fraud
- Rocky Mountains
- US Military