***Disclaimer: This blog will contain the lyrics to the song "Broken Hallelujah" by The Afters centered, quoted, and italicized throughout this post. These are not my words, but they are the words of brilliant people who know exactly my heart at this time. I take no credit in what they have written and I encourage you to go to their website, listen to their music and perhaps download a song or two, this one for sure is highly recommended.****
In the past four months my life has completely been turned up, down, sideways, forwards, backwards, and everywhere in between. I have literally been sick with a sinus infection for four straight months. I have been on antibiotics for two months. Because I have an infection and I'm on antibiotics I can't get my Remicade infusion that helps with my Ulcerative Colitis so in addition mito the already bad effects of antibiotics on a typical body, add in a flaring UC body, a failing GI tract on a feeding tube, and just general persistent nausea and a miserable person you have. And I can't get the Remicade again until my infection is gone and I've been off antibiotics for two weeks. We know now that the infection isn't going away without surgery and it could still be another 2 months before we can do that and have the 2 week recovery period be over. I am miserable. I am SO sick and am getting so depressed because I just cannot get better. And I am SO upset that all of this progression of my disease is happening because of a sinus infection, which would usually barely phase a typical person but for a week or two and it's literally got my entire body shutting down for months on end. I literally cannot find the strength to stand or get out of bed every day, but I have to. Because I have so many responsibilities in life for someone who is on disability and isn't necessarily supposed to have a large amount of responsibility to begin with. but responsibilities don't disappear just because energy and health do.
In the past four months my life has completely been turned up, down, sideways, forwards, backwards, and everywhere in between. I have literally been sick with a sinus infection for four straight months. I have been on antibiotics for two months. Because I have an infection and I'm on antibiotics I can't get my Remicade infusion that helps with my Ulcerative Colitis so in addition mito the already bad effects of antibiotics on a typical body, add in a flaring UC body, a failing GI tract on a feeding tube, and just general persistent nausea and a miserable person you have. And I can't get the Remicade again until my infection is gone and I've been off antibiotics for two weeks. We know now that the infection isn't going away without surgery and it could still be another 2 months before we can do that and have the 2 week recovery period be over. I am miserable. I am SO sick and am getting so depressed because I just cannot get better. And I am SO upset that all of this progression of my disease is happening because of a sinus infection, which would usually barely phase a typical person but for a week or two and it's literally got my entire body shutting down for months on end. I literally cannot find the strength to stand or get out of bed every day, but I have to. Because I have so many responsibilities in life for someone who is on disability and isn't necessarily supposed to have a large amount of responsibility to begin with. but responsibilities don't disappear just because energy and health do.
"I can barely stand right now.
Everything is crashing down,
And I wonder where you are."
I have friends that are going through impossible circumstances right now. Friends that I love dearly and deeply. Friends that live all over the country so I can't run to them, hug them, and hold them and let them cry with me, to me because that's what happens when you're chronically ill. You don't have any friends in your "real" life. In your everyday life. No one wants to be around you because you are sick, so they dump you and run away. So my friends are in my Facebook support groups and they are seriously some of the best friends I could ever ask for. Such good friends that I can almost thank God for giving me illness because otherwise I would have never met these truly genuine friends. But dear goodness it's hard to be there for them. To sit there on the phone with them. To listen to them cry and scream and shout 'Why me again?' when they are dealing with these impossible situations. And then there is silence...because I have no idea what to say.
"I try to find the words to pray
I don't always know what to say,
But You're the one that can hear my heart."
Would you know what to say when you are on the phone talking to a friend who is dealing with the possibility of losing their child to Child Protective Services because they have been accused of medical child abuse and Munchhausen's by proxy...again. Or that they may lose their child because they have so many bruises the doctor thinks they are being abused when, in fact, it's because they have a child with a condition that causes easy bruising but the doctor has never heard of it so it must be child abuse instead. Or that they are going to lose their child because they are too unwell due to their chronic illness to take care of their child and their ex tries to take their child from their custody because of that. Or their current relationship is in a constant state of flux due to the fact that one of the members in the relationship is sober on and off and on then off again. And when they're not sober they are extremely emotionally abusive and get very close to becoming physically abusive, but when they are sober they love them so much and just can't leave the relationship. Or they have a child that is having their 3rd brain surgery in 3 months. Or on and on and on....What would you say? What would you do? My only answer is to pray and wait and listen and see what God wants me to say and pray some more and then find out from God that I should probably not be saying anything at all...and then I just listen to them...and cry with them.
"You know the things that have brought me here.
You know the story of every tear.
'Cause You've been here from the very start."
I've also started having more of the all to unfortunate realization that I live in a terminal world. A world with a deadline. I won't say an expiration date because we all know that I believe that death is not the end, but the beginning of a much better totally healed life. But a deadline. I'm meeting more and more friends that have the word terminal on their name tag like me. But with the meeting of these people, is the obvious saying goodbye to them far, far, far too soon. A 16 year old girl, an 8 year old boy, a 42 year old mother, a 35 year old father, etc, etc, etc. Just this week I personally know of a middle aged father, a 5 year old boy, and an 18 year old girl all succumbing to their illnesses. Wonderful, amazing people all of them. All gone far too soon. For I realize the longer I live in the terminal world the truer the statement is that 'only the good die young.' And I wonder why. I try to figure out God's plan. Then I wonder when.
"Even though I don't know what your plan is,
I know you're making beauty from these ashes."
Don't get me wrong. Living in the chronic/terminal illness world has been some of the best living I have ever done. In fact, I almost wanna say I wouldn't have not known how to live had I not been told I was going to die. I live with hope, passion, gratefulness, joy, thanksgiving, love, and an ability to see beauty in things others cannot see. I have learned to live for the day and not for tomorrow. I have learned to find extreme awe in weensy things. I have found my passion in life and have had the courage to go after my passions and achieve them no matter what is standing in my way. But as seen above I have also seen an insurmountable amount of pain, and this post doesn't even cover the half of it. But with God's help, I still am able to maintain that He is there. He is holding me in the palm of his hand and is wrapping me up tight. And He has this journey that I'm on. And I will continue to call his name.
"I've seen joy and I've seen pain.
On my knees, I call Your name.
Here's my broken hallelujah."
At the present moment however. I feel like I'm drowning. I feel like I'm in a room that is just a square room with no windows, no doors, no grooves on the walls or anything and it's shrinking faster and faster and I can't get out. Nothing to hold myself up. Nothing to tell me what to do. Nothing is left. I am tired. My body is tired. I have been fighting for so long. I did have school and my passion to become a dietitian and help others with chronic illnesses to hold onto but right now even that is slipping away from me, and I can't make it stop. I'm trying to make it stop, but the ultimate decision isn't mine. I'm empty. I'm weary. All I can do is literally give my empty self to God. And keep believing He is holding me, wrapped up tight, in the palm of His hand.
"With nothing left to hold onto,
I raise these empty hands to You.
Here's my broken hallelujah."
I'm not there yet, but I am progressing quickly. I am losing my ability to do things that I really enjoy. I can no longer drive longer than about 20 minutes without falling asleep at the wheel. I can't do any type of physical activity/exercise which used to be my life. I can no longer even focus on my schoolwork very well anymore. This will get to a place where I will literally lose everything. And it will be a painful-physically and emotionally-journey. I will deal with more issues daily like all those listed above. I will deal with injustices of insurance companies and not getting the treatment I deserve. I will be scared. I will be tempted to lose my hope, my joy, my gratefulness, thanksgiving, my passion, my love, and my ability to see beauty.
"When all is taken away, don't let my heart be changed.
Let me always sing Hallelujah.
When I feel afraid, don't let my hope be erased.
Let me always sing Hallelujah."
If I could have just ask for 3 things in my chronic/terminal illness life at this point, it would be the knowledge of knowing that I am strong enough to not lose my hope, passion, joy, love, gratefulness, thanksgiving, and ability to see beauty. That I will continue to believe with all my might in the quote: "I'm realistic, I expect miracles." And that I will never stop singing my broken Hallelujah.
"I will always sing.
Here's my Broken hallelujah."
