The I could die. For over four years now,

 The Wolf With WingsHannah Neal Written Communications  They say “Life throws you curve balls.” They say, “God only gives you what you can handle.” They say “Life is 10% what happens to us, and 90% how we deal with it.”. People say a lot of things, and perhaps, I decided to stop listening.  Pretending to be perfect is perfectly fine, for all the individuals who are indeed perfectly fine. But for people like me, there’s only so much pretending we can do for the sake of protecting those around us. There is only so much our soul can bear, only so many antidotes my heart can take before it’s jaded. Acknowledgement is painful sometimes. Despite all my indifference and detachment I worked so hard trying to achieve, I still wound up here. A place where there is nothing but truth staring me in the face. The harsh grim and absolute reality that tomorrow, I could die. For over four years now, Lupus has taken control of my life. So, tell me, how should one handle this? How do I avoid cynicism when my this disease has almost killed me?  I remember it like it was yesterday. It was the summer of 2016. Lupus had taken a dive directly into my bloodstream and has yet to come up for air. The average lifespan of a healthy red blood cell is 100-120 days. Mine, however, can destroy themselves within a matter of hours, sometimes even minutes. Every organ in my body was compromised. Everything from my heart to my brain. The CBC came back showing a hemoglobin of 3.2 GM/dL. Now, coming back a 3.2 wasn’t just extremely low, but rather came back marked with a bright red C. The use of the word Critical, especially as it pertains to anything medical, is absolutely terrifying.  In that moment, I didn’t have the energy to panic. Like a blanket of lightning, all I felt was a sense of weight and excruciating pain. I couldn’t lift my arms. I couldn’t speak so I’d try to give one-word answers. My defected heart was working ten times harder due to the lack of oxygen. I could hear my heartbeat and my heart murmur in my right ear. All in all, I had never felt so weak. How I remained conscious is a mystery not only to me but to every physician I have ever asked.  Lying in that emergency room, I remember this overwhelming feeling of complete and total defeat. “Game over”, I thought, “This was not what you worked so hard for.” In a moment where all I wanted was out, I dreamed of being pulled under. Looking up at the ceiling, I was preparing myself for whatever was going to happen next. That’s when I began to realize how calm I was. Almost as if, subconsciously, I had already drifted off somewhere far and away. I’d happily floated down the river, and onto the shores of the next world. Finally taken from a body that has categorically betrayed me. Miles and miles away from all the disappointment of the human experience. Free of the pain, away from suffering, away from a wretched existence. No silver lining, No happy ending, Just peace. I learned, however, that death wasn’t ready for me. Supposedly, I had much more life to live. Somehow, the world thought better of me and this universe had other plans.  Life always seems to pose new questions but often forgets to include the answers. Will this happen again? Will I ever see remission? Does that even matter anymore? Should I be focused more on legacy or living?  Resilient since birth, I was born with a long list of health problems.  Not even 24 hours after my arrival, I was diagnosed with a heart condition called Aortic Stenosis. (1) Aortic stenosis is a narrowing of the aortic valve. The aortic valve allows blood to flow from the heart’s lower left chamber (ventricle) into the aorta and to the body. Stenosis prevents the valve from opening properly, forcing the heart to work harder to pump blood through the valve.”  My 3-pound body was placed in an incubator, I fed by tubes, and was unable to breathe without the help of a ventilator. My family could not hold me. My parents’ could not hold their child. When I was eventually able to be held, it was only for thirty minutes at a time. I’m sure those thirty minutes felt more like 30 seconds, especially to my mother. Thankfully, I come from a long line of women who fight.  Looking back on it now, as a 25-year-old woman,  I thank God I was born early. Had I not been, I would have never met my grandmother. She too was fighting a battle of her own. While I was in the NICU at the children’s hospital, she was in a hospice facility not even 10 minutes away. Her battle was Cancer. My mom didn’t know whether my grandmother, which was her mother, would make it to the original due date. Due to the circumstances, she and my father decided to find out the sex of their baby at the next ultrasound. Something they did not do with their previous two children but knew with this one, time wasn’t on their side. Something inside of me believes my grandmother made a deal with God. A deal to let her stay just a little while longer. She needed to get to me. She needed to look me in my eyes and tell me something. Though I will never truly know the sound of her voice, or how she looks when she walks across the living room, I do know she was able to share something that will live on long after we’re gone. She shared with me how to be a survivor. She passed those instructions down to me, her grand-daughter, who will one day pass them down to her daughter. She created hope with her own two hands. She managed to find healing where it did not live. She made sure that all of us had witnessed a miracle, a little girl defying all the odds, despite all the evidence to the contrary. All of this would serve as tools to remind my mother, who had to grieve the loss of her mother, that she was to never get discouraged. And If she ever found herself unable to get out of bed, or even lift her head off the pillow, all she had to do was look in the eyes of her daughter and take a deep breath. All she had to do was exhale.  Only through adversity can one truly understand victory. And I want more victories like that.  Now I don’t want anyone to misunderstand me. I detest Lupus. I don’t trust it one bit. Even with all that said, Guess who’s attempted to sit down and find some resolution? Guess who has even attempted to come to some sort of understanding with that monster? Me. At some point, I had to try something different. What I was doing clearly wasn’t working.  Eventually, I felt something change. I couldn’t tell you exactly when it happened, but things had shifted. I was able to slowly start seeing all of this from an entirely new perspective. I now can see this as something I never thought I’d be able to, a blessing. I realized that maybe it’s not so binary. It can be this thing, this poison trying to kill me. While at the same time, giving me ways to find an antidote.  With Lupus comes the ability to see things within myself that I couldn’t see before. That is something I’m starting be thankful for. So much so that I’d rather die at 35 years old with this disease, then live a longer, much healthier life without ever having had it. Even though that life would be much easier. The difference in having a disease such as lupus and being healthy is having to make choices. Having to consciously think about things when the rest of the world simply doesn’t have to. If you’re healthy, you have the luxury of a life without those choices. I sometimes envy those of you who have an abundance of choice. Until I remind myself that that would mean a life without the insight, and a world without the wisdom that I have because of Lupus. For example, I no longer take walking for granted. That’s honesty. Every step I take is a tiny victory. Every second of joy is just another battle won in this four-year long internal conflict. Four years is much longer when it’s full of suffering, angst, and solitude. And no one prepares you for that.  Lupus didn’t come with a manual. There’s no designated bracelet. No pin in the shape of a wolf. It’s not like AIDS once was, and cancer now is. Even in a room full of well-educated adults, you will find the majority of them don’t know what Lupus even means. In fact, a recent study showed that people think Lupus is a type of plant. Even those who recognize Lupus as some sort of health problem don’t know it’s an autoimmune disease. I personally have been asked if its something similar to HIV.  I’ll try and break it down for you. My immune system attacks me, it doesn’t protect me. It can’t tell the difference between my healthy cells and my sick cells. Therefore, it just attacks them all to be safe. Simply, my immune system is overactive. Yes, It can be fatal, but I’m doing everything I can so that it won’t be. My doctors have told me that I’m a special case. Having no idea what to do with that, I take it with a grain of salt. I mean, It’s not every day you’re told that you’re special just because you’ve survived. Truthfully, It’s almost comical. Adaptation is a fancy word for the will to survive. I’ve had to adapt to I.V.s, doctors, never-ending flares, long waits followed by even longer stays in lonely hospitals, all to deal with a disease solely because I cannot help but want to stay alive. Those on the shores of that next world will have to wait for me a little longer.  There are times I think about that specific hospital stay last summer, and how close I was to almost never walking out of there. I remember it was there that I realized that you’re the only thing standing in the way of your quality of life.  I’ve not just survived death but I’ve survived hopelessness. None of us can escape death, but we can grasp onto our souls and prevent them from meandering into a puddle of darkness. We can escape the deep trenches of hopelessness. I’m proof of that. Of course, having Lupus was not something I dreamed about as a little girl. This is not at all what I wanted for myself. Of course, I think where I would be had I of never gotten this diagnosis. At the end of the day, no matter how you slice it, I did get it. I have Lupus today, I will have it tomorrow, and I will have it until the day I die.  These days, I refuse to not make my time count for something. I want to do nothing but share it with the good people in my life. You might even find me dance from time to time. It’s not been easy, but then again, nothing good ever is. I’ve accepted what I can not change. While at the same time practicing patience, and trying to become tolerant enough of myself to strive for the best in what I can do. I guess that’s the 90% I could never quite understood. That 90% I didn’t even know I had in me until Lupus came along.  10% of life is what happens to you. Get mad, get angry, and let yourself grieve that 10%. When the time is right,  you’ll start to focus on the 90% you have control of. You will use it to find your light at the end of your tunnel. Look at that, I guess I’m writing my own anecdotes now.