My Greatest Fear Is that My Parents Will Have to Lay Me to Rest

My amazing daughter was stricken w this disease and I want you all to know her story in her own words she wrote for her collage essay. Her illness created a dream of helping children as a nurse. I will carry on her dream in my own way, Creating Awareness so that no other child or parent has to live through what we did. Brooke Passed away 10/15/2017 she was 18.
Nov. 8th 2016

The English language contains 1,025,109 words. Words contain significance to beholder, and can make or break you. They define people, situations, and attitudes. strength, purposefulness, and convalescent happen to be my favorite words that to define who I am, my struggles and overcomes i have achieved.

Strength; the quality or state of being strong. Googles definition doesn't give it the correct attributes to what strength means to me; the will to overcome and to take a situation they may brake you, and make it make you. For the past 7 years, I’ve been diagnosed with a blood condition labeled Antiphosfulipid-Syndrome. What started out as a mere stroke caused by a microscopic deep vein thrombosis has turned into an epileptic nightmare (or so you would think). As a 12 year old, you don’t fully understand the impact being in the ICU can have on your parents. Behind closed doors, down the hall in a bathroom stall, in the car, anywhere but where i could see them, they couldn't bare to comprehend the fact that their little girl almost died, at 12. Strength, was initiated at this point in time. We got past this time span and moved on with life while putting, this behind us as a foggy memory (at least for me). Not even a year later, I find myself in the hospital once more. A 9 inch clot has decided to take over my femoral Artery which has made me inferior to its snowballing actions and unstoppable determination. 4 weeks hospitalized this year, 2 weeks the next year, 3 weeks my sophomore year, it wouldn't stop. There was nothing in my power, my doctors abilities, or my parents protection, from the realism death could be an option. Their were times were I couldn't bare it anymore. Always being hospitalized and watching my friends live their lives while I missed so much school, that by the time I caught back up I would fall right behind once more, laying in my lumpy butt-numbing bed, on the pediatric floor. Strength doesn't define your physique. Foremost meat-heads, sure. It is the reason i'm still here today and my will to strive towards greatness.

Convalescent; recovering from an illness. I wouldn't necessarily use this as a verb, but more like an adjective. I use this word to describe my mental mindset rather than a physical overcome. At a certain point, I never thought this would end, a repetitive downward spiral of unfortunate events. Like an average mood swingin' teenage girl, I found myself in a dark hole in the ground. Unable to crawl back up. No one could throw me a ladder to help, I refused to climb it. I spent a while in that hole, thinking over and over again why has this happened to me and why does no one understand. After a time span filled with lonely thoughts and silent suffering I decided i didn't want to live like this. I wanted a better life for myself and the only way I could do that was for me to get over the fact that these were the cards i was dealt, and to grab that ladder, and climb all the way up to the top. The top was beautiful. Being convalescent wouldn't make me a victim, but to make me victorious.

Purposefulness; having or showing determination, having a useful purpose. I've always gone by the cliché saying "everything happens for a reason". Why did all of this happen to me, so young and had the whole world of opportunities ahead of me? But after a while of lying in a hospital bed you start to wonder what your purpose is. What is the reason all of the has happened to you. Day in and day out you get handed different nurses, some more wanting to connect to you than others whom may think you're just a doll they can poke and stick and not have to emotionally care about. But those who sat down with me and taught me how to shuffle a deck of cards, or cried with me, they were my purpose. They opened my heart and implanted this love that craves to be the pediatric nurse I plan to be. My purpose is to make a child happy, and forget about their pain for a little while. My purpose is to make an impact on someone else besides myself.

I'm sure there are hundreds of other words out there i could've used. But these words stand out more than others. They have defined me. They have made me a strong women I have become today. These words have taught me not to just except my illness and think its an enviable situation, but to pull through to the other-side. The bright side, full of endless possibilities. Having a purpose and knowing what I may be in this world is the biggest blessing of all. It is at the peak of this triangle, wrapping it all together. Knowing what I was meant to do in this world, despite all of the setbacks I may have come across. There is something else out there for me to do, and make an impact on other lives. And the best part, this is all just the beginning.
Brooke Brown

Dear Fellow-Lupus Sufferer,
We are lucky to have a diagnosis, so we know that we are not hypochondriacs!!!! My siblings refuse to believe there is anything wrong with me despite the fact that i have a definitive diagnosis.
I am indeed different now, from how I used to be: I know what I am fighting against, and I intend to beat this. I have clinically died three times, though not from SLE, so I know what death is, and it is beautiful, although dying is not.

My life has changed drastically: I was a psychologist for 28 years, a PhD candidate, a wildlife rescuer (including rehabilitation and release), was married with two children. All of that has gone, except for my children, whom I cannot visit as they live too far away and I am unable to travel. I cannot visit my father, whom I adore, as I was unable to look after him, and ended up terrifying him when I had a "seizure" which lasted over an hour. He is now in a nursing home and I can't afford a taxi to go and visit him. (I used to waive fees for most of my clients in accordance with my spiritual beliefs.)So life now consists of staying at home, where I live in bed and share my life with my dog and my goldfish.
It may not sound like much of a life, but as you know, Lupus can take over your life. I have made peace with the Lupus, although I have every symptom ever attributed to SLE. It is my constant companion, although sometimes I see people from my bedroom window, whilst reading books, in large print, as it is affecting my eyes, my brain, my heart, my hands, my oesophagus, my colon, my thyroid, my adrenal glands. Surprisingly I look as healthy as a horse although the weight loss is rapid.
I wish I could help you to get through this somehow. if you are allowed to write to me, there is no cost involved as my work here is to help souls have a happier life.
I can pick up that you are delightful soul, who cares deeply for others, but you also have so much fear within you, and understandably so. Take your time to come to terms with your diagnosis and please do not be ashamed or embarrassed by the heavy duty drugs prescribed. Talk to your parents about your fears, as this is the way we treasure and honour those who care for us- by sharing our deepest darkest fears.

I wish you may find peace and pleasure in some of the little things you can still do, and keep in mind, as I do that our anxiety can bring on terrible flares. I look at things around me falling apart as I can no longer fix them, but I now have a little laugh at them and think to myself, "I wonder what will happen next?" However, instead of panicking about the chaos I look at it and accept it as I cannot change it, and my concern will only make me more ill.
Hang on to life, and try to live a moment at a time.

Many Blessings,
Linda