“Many Suffer in Secret”
©2013 James Dacey, Jr. OFS
Originally I was going to blog about today’s gospel; infact I even already starting writing about Jesus sending out the seventy; but that’s ok, I felt tugged into instead writing about this. My friend Ernie posted a comment I want to share with you: This quote packs a hard punch to truth, in my life and in the lives of so many of you:
I know our Lord knows many are in the same situation we are in. I realize there is a huge audience of readers from around the world who read this blog, but that’s ok, God knows the purpose here; mine is to tell it like it is and share how we (I) deal with all this. But in this quote it seems sad -that many don’t open up and share their pain and suffering, so in turn they can share their strength with others. See by doing so, we have the ability to help others deal with similar challenges in their own lives. In sharing our strengths and ability to cope, I believe our testimonies help others see that it is possible to weather this storm, your storm -of what seems like the end of the world to you, in your world.
|We come a long since this wonderful day. You never know who is truly suffering in secret, till they speak up - or we ask if everything is ok. Allow God to lead your Spirit to people in need, especially families who are suffering.|
Yes in full perspective to all this it would be nice to have an expensive home, new cars every 2 years, vacations whenever and wherever we so pleased and wanted. But seriously think of this, if you are living this way and your prayer life is but a mere fraction of your time, barely giving any of your time to God; what good is the purpose of your life? How could you possibly say that you are living the Christian life? If what you have here is valued to you more than what is to come to all –Eternity!!! ..and judgment for our actions here -I ask you this: What’s the point? At judgment God don’t care about the stature of your place in society is, or how much money you invested and saved; or that you are genius in worldly affairs and investing, your title (our title) is all the same before God. GODS CHILDREN – SINNER. Sorry, but there is no meaning for all those things in Heaven. What will matter to God is how we managed them to serve Him. Selfishness and hoarding of His gifts isn’t wise. Sadly it’s the poorer people in society who really help the most to those in need, they understand the pain and suffering and the tears. The wealthier seem to say they feel bad for you and that they will pray for you, and then they swift away in their BMW’s to the mall, or worse they really don't know you exist... I know that’s over the top with the drama, but sadly it’s so true. Those who can help the suffering the most, tend to be the very ones who don’t and won’t help them. That’s sad, for them. Why do they think they will “live forever” here on earth and they need all that stuff? And why do they put ALL their trust in their riches? Well that’s neither here nor there, we must pray for them, because sad will be the day that they will have to stand before God and have to answer the hard questions about “loving others” and “putting others before themselves”. Don’t misunderstand this blog, families like ours suffer a lot while many close to us who can help relieve some of the pain and suffering -just won't. Instead they watch families like us suffer like a fish out of water.
Chrissy and I have had our lives, our families, our relationship, our dreams and even at times our hopes flipped upside down and smashed onto the ground. (Keep tissues nearby – tears alert!). These past three years have been beyond difficult, beyond anything you could possibly imagine. I ask you this before you begin to say to me, “I understand what you’re going through.” Please don’t misunderstand me, many of you that I know well have been down this exact road in many ways. But I say that as a pre-requisite so that you understand, that in many ways you truly don’t understand. There’s nothing wrong with not understanding, but your awareness of that makes you understand -that it is indeed far worse than you can ever understand. My question to you as I begin is this:
“Have you ever spent day in and day out watching the life of your spouse or child or parent or sibling (the one you love and adore with all your heart) deteriorate little by little; and little by little you see the person you use to know -slip away and in their place is an ill, frail, hurting person, who is struggling with a disease that they can’t control, but they themselves want to stop, and their emotional roller coaster of tears of not wanting to die -become a very alive, very real part of your every breathing moment?”
I say all that to help capture that feeling inside of you who know what I am talking about; and I also ask all this to help put into perspective to those who have never had to deal with all that day in and day out. The tears NEVER END!!! My secret tears are constant, the ones I hide from Chrissy and my kids. The secret tears sometimes that last for hours, sometimes for many days in a row. Consider this –our future together as a couple, one day in the future as grandparents, our time on the rocking chair on the porch, growing old together –GONE - Ripped out of our lives!!! Yes there can still be a miracle. But please understand the mindset of the ragging battle that never ever ends for us every single day, the reality of Chrissy not being able to simple walk naturally and somewhat swiftly up a simple flight of stairs. The struggles when she can’t keep her balance and she almost falls no matter where we are. Her memory little by little is getting worse and worse. She is so much more forgetful in things that have happened moments ago. MY HEARTS RIPS INSIDE ME – I AM BLEEDING INSIDE ME – A SPEAR RIPS MY HEART INTO PIECES!!! I scream and yell at the top of my lungs some nights, even losing my voice -begging God for mercy for Chrissy’s life. The woman I love is battling something that is destroying her from the inside out. I admit to you I am all teary eyed writing and sharing this with you right now. But I need so much of this to be put out there. Entrusted it to so many that pray for us and that we to pray for.
This CROSS we carry alone and as a couple and as a family is EXTREMELY HEAVY beyond simple explanation and even beyond that, it’s very complicated. We have a couple of people in our lives that mean well, but all they do is focus on their magnificent solutions, the answer we had no clue existed, the one thing they say will make all things better and easier; when in fact from our view point these ideas only makes our situation worse and way more stressful. I know they mean well, but they need to first understand that they don’t understand the whole story, and they can’t see the whole picture from their mansion or their state of life or their own world. The reality of what Chrissy and I live and battle isn’t even in the century they are living. They are so detached from what we are dealing with and how we MUST deal with it, how we MUST prioritize it and we MUST balance all these things. Most of these wonderful, well-meant ideas just get handed off to us, without even offering that person’s assistance to even really help us make it happen. I have asked, “We can’t afford to do that, are you willing to pay for that?” the answer is always, “No!” I fail to understand their purpose and reason, except for what I have already said about them really not understanding any of what we are dealing with.
How can families like ours be best helped? Some of you probably just don’t know I guess and I understand, and after all this, you may have come to that very question yourself. What do families like ours need most? Good solid, sincere friendships based on love and caring, good healthy conversation about other things; maybe drop off a tray of food every once in a while (see what the family likes, this is helpful to a family under tremendous health issues) omg that would be so helpful every once in a while; prayer of cause (private and with us); and at times a real chance to allow us to vent out all the issues we are dealing with especially the stress, we need that safe place to just let it out –to cry –to grumble –to show our weaknesses –it’s very healthy to release the stress this way; and please STOP JUDGING US – we are in a life and death battle beyond your understanding, trying to make the best decisions we can make, your harsh words only further hurt our situation. Yes all of the families suffering with a terminal illness member are in desperate need of so much. Through these three years, we have depleted every single cent to take care of Chrissy’s needs, no regrets, no complaints, just facts, literally countless thousands of dollars spent in doctors, medications, her special high protein diet, etc. A harsh reality many families suffering experience.
Our Situation and Issues
(Open and honest / heart to heart)….
For starters Chrissy Health is monumental on so many levels. I admit I am consumed in prayer over this every day. Sometimes I seriously feel like Job. Job from the bible that is. Watching everything in our lives being taken away from me. I have no idea how many hours I have truly been buried in my own tears trying to figure all this all out. Yes I trust fully in Jesus, but come on guys Chrissy is my WIFE, my best friend, we have spent 26 years battling the world together!!! “Till death do us part”???; that’s not supposed to happen till we grow old together!!! Chrissy and I have talked about this countless times, understanding her death that will come as a result of this -things she wants to do for the kids before that -how we can accommodate her now. We as a couple, but more so Chrissy says, “I trust God’s Will in this, if I suffer it’s so someone don’t have to and if I die, it’s because someone don’t have to.” These conversations are heart-breaking. I only emotionally couldn’t hold it back once in front of her back when all this started in 2010. I was so mad and hurt thinking how she won’t be here to see our five kids and their eventual families experience life together and with us together with them, sharing the joys of grand-parenting. I was yelling and screaming how mad and upset with God I was and then I bursted out in tears. She grabbed me and hugged me. My tears were for her suffering, her hug was so incredible. She is so self-giving, a true gem of character she possesses.
My health suffers tremendously from all this. As many of you know I have had heart issues, abdominal pains and endless daily headaches. And the stress, is beyond anything any one person can handle. Somehow God sees me as strong enough to endure all this. My work schedule is a killer on top of all this (I work nights) and take care of Chrissy’s needs during the day. So sleep is …well the problem is that sleep isn’t something I so easily balance in my life. I always say that Sleep Deprivation is going to kill me one of these days, falling asleep at the wheel is my biggest worry. I drive an hour to work, to drive all night: 3 to 500 miles (working 10-14 hours) then I drive an hour home. Yeah Sleep Deprivation is going to kill me one of these days.
And then there are the medical bills -they are endless and countless into the thousands of dollars and basically they come in the mail every single day -ok 3 to 5 times a week. Bon Secour Hospital alone says we owe them on one page $15,000+ while on another page there is also an additional $4,600. Cigna just billed us for $7,400 of past due. There bills accumulate and roll forward through the years. Helping someone deal with these billing issues is helpful, but no priority, obviously they are not going to stop. Out of pocket we spend about a thousand plus a month towards some medical bill from somewhere.
Also (2) SSI (Social Security) Lawsuits against us (Chrissy) but they are going after me because I am the spouse and the only bread-winner of the house; even though we did what they said to do, and we gave them all the originals of our entire life they wanted to make copies of and we waited for them to see if Chrissy qualified and they said she did -and they gave her the benefits.. We now have to prove she is qualified?? NYS is suing us for $7,200.00 and PA is suing us for $5,800.00. Are they insane…? Oh well now we lose our Federal Tax Return every year, NYS absorbs it till we pay off the entire lawsuit. Oh well, not too much stress hey. Hang on -yes, there is more.
My High Cigna Insurance Deductible is $10,500.00 which zeros out every January 1st and we must start all over again. An endless battle indeed. A cycle of debt that you can’t ever get ahead of. Chrissy’s chemo (Avastin) costs $100,000.00 a year. Yes you read that right One Hundred Thousand Dollars a year!!! And my company stopped this treatment in February, seems like February was our month of battle... Well they said pay her portion of the deductible ($4,500.00) or treatments won’t continue. I battled them two times on the phone yelling and screaming at them. See Avastin isn’t a drug that cures and heals. All Avastin does is pro-long life for a couple of months… So this treatment is critical for her very survival… So next year we will once again have this same battle with them, Lord willing she is still here. Thank you everyone who helped in our fundraiser, we greatly appreciate your love and generosity, without your help God only knows where Chrissy's health would be…
Our family vehicle keeps breaking down, constantly costing us with what little money we don’t have. Solutions we have heard are ludacris, and insane. We need another car, a more reliable, updated automobile, a mini-van preferably. I’m sure Chrissy will be back in her wheelchair soon, and the min-van will be more helpful. It has been suggested to us to surrendering our vehicle and resort to public transportation. Are you nuts!!! That doesn’t help even with living in NYC, it only magnifies the stress and pounds us in the face with total reliance on others and the end to our own ability to manage our own challenges on our own. Can you imagine food shopping, Wal-Mart?? Doctor appointments? Me going to work? And it locks us down in the house making it impossible to even take a nice drive out to say get ice cream. We become prisoners to our home. We need another vehicle!! -NOT public transportation. This is beyond monumental. Once the car is DONE, so are we.
The home we rent is in foreclosure. Isn't that so nice. This one is beyond very stressful. In the balance of it, our landlord tells us in the same time the doctors told us Chrissy’s real situation (February), “Oh by the way, the house is in foreclosure, you have to move out.” Heartless knife jammed through the heart of me and my family. How does one balance all these things at once? How is it even humanly possible?
Pondering all these thoughts today: Prayers are needed for us and for you from us. Thank you. I have shared so much from heart to heart. I know it’s a lot to take in. Now image having all this in your head day in and day out. Thank God, we have God in our lives, without Him we’d go insane.. Through all this we are Broke, flat Broke!!! Living week to week, day to day, sometimes meal to meal.
How can you help a family
like ours going through what we are going through? Take your pick. There are
literally so many things you can do, there are endless ways to really help relieve some stress from
somewhere in this mess. Whatever you do for that family, believe me they will
be ever grateful for your love and kindness. God Bless all of you. Thank you
for taking the time to read all this.
In our lives “TIME” is one big blur… no beginning, no end. It just stands still, "LOST" we can’t truly plan a future, we are limited in our mobility and everything stops… Hard to fully explain, let alone understand. One day seems like a million years, while 3 years seems like a huge blur of 10 years with no significant move forward. My good friend Al says, it is like a feeling a prisoner would feel when they have been away for several years: They know where they were, they know what they were doing, but in the end nothing was really accomplished and there was no advancement forward emotionally, intellectually, etc. None of their life's dreams could be focused on, just always thinking of "How do I get out of this?" That makes sense... Very Sad :( But that is truly where we are at.
And His Most Blessed Mother,
Jim (The Rosary Man) Dacey Jr. OFS