Writing about myself is scary. Vulnerable. There are days when I wonder why I do it. But, I started doing so here on this blog eight years ago with the hope that it would help others. I like to think it does. When I get letters that tell me that it has, ...
Choice (Photo credit: elycefeliz ) I am at an age where I often find myself reevaluating the course my life is taken. A time when you compare your life to that of those around you and sometimes feel it’s come up lacking. When I look at the trajectory others...
This is a very personal post. I have struggled with the thought of making it public for several months now. Perhaps I ought just to share it with close friends; but on reflection, I'll share it publicly.
As some of you know, I am severely ill. When I meet someone new, I inevitably get asked the question, "what do you do for a living?" because we often define ourselves by what we do in life, and not who we are, or what we enjoy. And I usually have no answer to this question: though I do things like write and paint when I am not in pain, my real "job" is different. Essentially, my main job is staying alive. I am fully and legally disabled. Keeping track of my medical records, medicine, and going to the doctor/hospital takes all my time.
I received news yesterday that I will need to start IV transfusions of Immunoglobulin, because my levels are so low that when I receive a flu shot or vaccine, it no longer works. My body is unable to generate the antibodies that would fight the disease I am being vaccinated for. With a suppressed immune system, this severely decreases my long term chances of survival. I will need to do these IV infusions for the rest of my life. If you want more detailed information about my particular condition, you should read this post: https://plus.google.com/u/0/117665613028757061169/posts/UzBE87uoeWX
When I write about my disability, sometimes I feel vulnerable. This is because I want you to understand something first and foremost: I love my life. The pain is difficult to soldier through, but life is worth it: I also love interacting with you.
A friend I've made on Google Plus asked me in hangout the other day, "What can we do to help you?" and I thought about it. The best answer I can give is: "You are helping right now. You are making me feel happy; you are giving me a window do the outside world."
I have survived many hospitalizations that technically should have killed me, like hemolytic anemia, severe staph infections, lupus flares, pulmonary embolism, and eventually medical bankruptcy, but I want the most important thing you understand about me is that I have survived.
I care immensely about the people I interact with, and I do not want to hurt you or upset you by telling you about my experiences. I don't want you to feel this is something you have to fix. At this point in my life, I am lucky to have each day that is given to me. With my immune system being so severely impaired due to the drugs I am on for lupus, I am dodging bullets; I face life-threatening episodes and will have to do so the rest of my life. It's the nature of the game I am playing, and I accept that.
I share this post with you simply because there are many people like me out there who do not have a voice, who cannot tell about their experiences, and I want to make sure that when you come into contact with them, you are not afraid. Connect with them. Reach out to them. Talk to them. Many people with a disability are immensely lonely. The best thing you can do is listen, and help them become courageous in their own fight. Understanding someone with a disability of no matter what type, can only increase awareness, and, I hope, kindness.
Though I don't hope for a miracle, I do expect that each day will be the best day it can be. There comes a point when you are in so much pain constantly that you learn to adjust to pain; and then it's like each moment without pain is a gift. That's the upside. I live for those moments. And every person here distracts me from the pain, which is why I say thank you to those of you who participate on my page.
I have been motivated to post something like this for the past few months, because in the last year I lost a close friend I knew through the internet to breast cancer. Her passing was difficult to deal with and it made me realize people here should know if it happens to me.
These are not easy subjects to talk about. It is easy to tiptoe around in daily life, ignoring our motivations, fears, disguising them so we don't confront them. I think this is because they are scary. I decided to openly talk about these deep things in a public format because this is what life is about. This is the core of the human experience.
I know it's not easy to read about this sort of thing; I have been through many experiences which cause fear in other people when they hear about them. I do not wish to inspire fear in anyone. I believe we are empowered in this life: we face obstacles and we decide how we fight them based on our mentality we use to fight. Each day that I survive is a victory to me because this is how I tell myself I have won.
The picture I am putting with this post is a snapshot I took on a day in 2009 when I was severely ill and bed-bound. It is of the Flatirons, in Boulder, Colorado, from the window of the apartment where I used to live. This window used to be my "television." I would lay there for hours and watch the clouds change over the mountains; the light would play with the shadows and it would shift, unendingly, beautifully.
This is one of the most personal pictures I have ever taken. It is of a view that meant the world to me. It still inspires me to keep fighting.
We live in dark times. But the overarching truth is that even in the darkness, there are rays of light; and perhaps those rays of light are even brighter due to the contrast of the setting. Do not lose your hope and I promise I will not either. I will fight for what I believe is right and just for the rest of my life- as long of a time is given to me.
If I do pass away, I've given my password to someone who can notify people of that fact on Google Plus, so that you are aware of what happened. It may take years; it may take months. I don't know how much time is given to me, and I don't want to know. But please understand this: even when it does come to pass, my disease will not win. I will have won, because it never conquered me mentally. It never will.
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