When first being diagnosed with such a rare and aggressive disorder it's like being in a whirlwind without noise. Everything is spinning... and then panic hits. You start to collect yourself as treatment options and different plans are presented to you, but words that doctors utter still stay vivid in your mind. Words like "rare," "aggressive," and "serious" seem to be heavier than before. For me, there were multiple very "aggressive" treatment options for my very "aggressive" disorder. These biologic treatments were so aggressive that side effects included cancer, but when it's life or death you roll the dice. However, after multiple trials of these aggressive biologic treatments with adverse reactions and ensuing weeks of crippling pain with no end in sight, it was time to make a decision. I cannot stress enough how important it is to realize that YOU are in control of your body and your decisions, not your doctors. The role of your doctor is to provide the best options and care for YOU. So I made a decision that some of my former doctors did not offer and a wake of anger ensued. I decided to stop treatments.
I received a phone call from one of my doctors to scare me into their treatment plan. They forgot that I have options and I could choose what was best for me. Fear didn't work at that point. I was more scared of losing any quality of life that I may have left. With an abrupt ending to the phone call with my doctor, I was left in tears. Debating what I had done, I knew I had to prevail with my decision. To hear that I could develop a hole in my esophagus at any time and have 24 hours to live was and still is mind-blowing. It makes one re-evaluate life. It literally makes you live as if you are dying. There's a sense of freedom in living that way, but it's also hard not to let negativity overcome you. There's also a sense of needing to protect those you love from yourself because you feel like a ticking time bomb. It's almost impossible to reach out because you would never want to hurt the ones you love. Thus, you retreat. Cut yourself off from the world and no one can get hurt that way.
However, that doesn't work. The true friendships in your life become more powerful than the fear. Your real friends have a way of getting in and never deserting you. And the darkness of fear and negativity begin to shrink in the light of these people, these heroic friends and family that say they are here to stay. And that negativity is shattered by the immense blessing of those friends and family that stay. If you are someone who has or did have a severe disorder, then you know how people flee from your life. There are those people who can't handle it, don't know how to handle it, or simply would rather prefer not to handle it. They are gone before you even realize it. This is devastating of course, but soon you learn that knowing who your true friends are in life is another amazing blessing. It's the friends and family who text you all the time to check on you, who motivate you to go out into the world and hang out, the ones who encourage your passions so that you have something to live for, and the ones who never leave your side that are the greatest blessings you will ever receive. I am writing this as a thank you and a tribute to all the friends who have stood by me. I am also writing this post to explain why the greatest blessing is to find your true friends and family, and to never feel discouraged over the friends you lose. I guarantee if you are on this journey, then there are some friends that will flee and when you think that it's your fault, then know you are not alone. Because this journey is a gift to find your true blessings in life and to appreciate them to the fullest. Never let yourself think that you aren't good enough because of your disorder or that you're unable to keep friends. It may surprise you as to the people who show themselves as a true friend and those who abandon you. But do not despair, it is a blessing not everyone gets to have.
So I write this post to thank all those friends and family who weren't scared to stand by me, who didn't let my uncertain fatal prognosis stand in the way, and who worked hard to love me when I didn't think I could be loved. These people helped me to start to heal with their kind words, positive outlooks, and ears that were always ready to listen. I want to thank you from the bottom of my heart because you have no idea what a huge blessing you are to me and how much you have helped me heal. These may be the toughest days of your life, but the blessing of friends and family will overwhelm you. The best advice I can give is to be patient and you will find your true friends and family. One of my best friends recently got me hooked on Golden Girls, thus the title of this post. She is truly a special friend and one of my biggest blessings. The warmth and love of friends and family can make all the difference. They can help begin to heal you if you let them.
A friend loves in all times. -Proverbs 17:17
May you be well :)
~Brooke
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