The Constant Powerlessness of Serious Chronic Illness

My husband quietly pulled me aside this morning and asked me to walk with him to our van. He needed to tell me that he had been coughing up blood again, but that he didn’t want our daughter to know about it at this point in time. He was about to leave for the ER. It’s been a familiar scene for our family for 1.5 years and it will continue to be one for the rest of my husband’s life.

It was greatly disappointing nonetheless since we got a break from his symptoms for a few months and the medications he is on were doing their work to prevent further damage to his lungs. It was time to test for remission, so he’s been off of his medications for a couple of months. Unfortunately, the doctors have yet to be able to get him into remission for more than a month or two at a time. It’s one of those situations where we have great hope. We know others have gone years without symptoms and they have gone into remission. We always hope against hope that will happen for Phil, but instead of happening, we end up where we did this morning. I must confess that I was profoundly disappointed.

This morning hit me a lot harder because I had spent a couple of hours last night trying to help our daughter deal with some of the grief, pain, frustrations, and jealousy that she carries. She’s been down ever since her best friend moved on her birthday last month. It’s been a big adjustment for her and the pain of losing her four siblings (all miscarriages) and having a chronically ill father have been eating at her. I can see it in her eyes and it guts me every time I look at her. I can see it, but so far I’ve been unable to successfully help her fix it.

I frequently talk to her about how God’s plan differs for each one of us and that each family is different. Some people are asked to carry more than others. Some families have one child and some have fifteen or twenty children. Some families have parents with a chronic illness. My own father has been sick my entire life and now my husband is chronically ill. I keep telling her to offer it all back to Christ. To give everything over to Him in trust and love. He will heal those wounds. He is the One she can always turn to.

After talking to her, I know that her anger about the situation, her loneliness, and the fact that she spends far too much time comparing our family to everyone else’s are all making it difficult for her to turn to God. She’s far too much like me. She wants to know why? And most of the time we don’t get to know why. I breathed that same word out through tears this morning as I waited to hear news from my husband. I screamed it in agony during my miscarriages. I have yelled it in frustration so many times. The only answer that ever comes is the Cross, which is finally enough for me, but it is a difficult answer for a 7-year-old to fully comprehend.

I told her to befriend St. Therese. A woman who knows quite a bit about suffering and whom I know would be a loving and devoted friend to my daughter. Michaela has asked me to help her learn how to offer her struggles up to Christ and how to befriend a saint, so I will continue to try to help her each day. Even though I understand the immense value of redemptive suffering, I still wish that I could take all of her sorrow away. I know I can’t and that’s a part of how God sanctifies me. In loving her, I learn to embrace her Cross with my own. That’s a part of loving people. The part we are all terrible at. The part we flee from, but the part where God truly shows us the immense transforming power of grace and charity.

My husband is home, and as is so typical of his disease, he is doing well this afternoon. He coughed up patches of bright red blood for a few hours. The ER did what it always does; takes our money and offers no answers or solutions. My husband will call his Pulmonologist on Monday to ask for a CT scan so we can see how badly damaged his lungs are right now and then he will go back on the terrible, but life-saving drugs that keep his lungs from dying and the rest of him with it.

Chronic illness is to live powerlessness. It is a constant reminder that we are not in control. It is to enter into the great mystery of suffering, a mystery we largely experience alone. I can’t fully understand my husband’s suffering, just as he cannot ever fully understand mine. His suffering is largely mysterious to me. I can walk with him. I can love him and take care of him, but I can never fully understand. Only Christ can enter into those depths of my husband’s soul.

That reality is a part of the powerlessness we face and that’s one of the reasons why we flee. We fear what we cannot fully comprehend. We fear intense pain. We also fear vulnerability and opening ourselves up fully to that pain. We don’t want to suffer, so we avoid walking beside others or we refuse to allow others to walk beside of us. We don’t open up ourselves. We often realize too late that is a huge mistake to make because God places people in our lives for that very reason.

The only answer that makes any sense in the face of suffering is love, but we must be willing to walk into that suffering in love and stand fast. We must be willing to accept love from others. The ultimate answer to why is the Cross, which is Love. May we all find the fortitude and charity to stand together at the foot of the Cross and embrace the powerlessness we all face in this life.

7 Replies to “The Constant Powerlessness of Serious Chronic Illness”

  1. I have no words to express what I think as I read this and how you must be feeling. I promise to pray for you and your family even more. May God bless you.

  2. I find great comfort in meditating upon the image of St. John and our Blessed Mother at the foot of the cross. Silent but standing

  3. I am praying for you and your family. Thanks for sharing these very intimate thoughts and feelings. They help encourage the rest of us. God Bless!

  4. I love your writing and, seeing your piece on pride today in Catholic Exchange, thought i would see over on this blog how your family is doing. I am so sorry for your many crosses, especially with your girl being so young. My heart breaks for her.

    We also carry many crosses and have lately felt our life to be a perfect storm, as crosses compound other crosses and we’re going through what one friend of mine named “Suffering Servant Disneyland.” So, i just want to share some things that help my husband and me as we walk through the vale of tears.

    Something that may help your daughter is this image: a person distressed by his cross is offered the chance to exchange his cross for a new one. He goes into a room full of crosses. Looking at one after another and fearing their size or roughness, finally sees one not so scary and chooses it. He is told, “that’s the one you came in with”. What this means to me is that our crosses often seem overwhelming, but they’re suited to us, and we could not carry someone else’s, nor could they carry ours.

    Another recognition that may help her is this: we do not always know what cross another is carrying or will carry at some point, or has carried. How often has someone shared with you some hidden pain they have, or told you of past things they’ve survived that surprised you to learn? Or, things are going well for someone and then disaster strikes. As Fr. Stan Fortuna raps, “everybody got a thing they gotta suffer”. And often, the people with the most painful situations put on a happy face and pretend everything is fine because their pain is too much to lay on others, too much to speak of. So, when your daughter sees others who seem to be doing so much better, it might help to consider that every single person will walk through the valley of the shadow at some point, usually many points, in life, and for sure some of the people she may feel jealous of are suffering in ways she can’t imagine.

    One more thing i do is tell my boys about the horrors kids in poverty and danger face so that they know that whatever they’ve got going on, they haven’t seen their parents shot, nor do they spend their days digging through the dump for scraps to sell to buy food. “There’s always someone worse off than us” is the sobering flip side to “look how much easier that person’s life is than mine.”

    Another thing that might help is seeing that we love people and accept the crosses. Your daughter is amazingly blessed to have you and your husband as parents, no matter what the accompanying suffering is. Maybe another mother could have given her ten siblings, but that mother wouldn’t be you, and I bet she wouldn’t trade you for that. Another father might be healthy and peppy all the time, but he wouldn’t be the daddy she knows and loves, and I bet she wouldn’t trade her dad for that either. This helps a lot in marriage too ;).

    I hope i haven’t come across as minimizing your daughter’s suffering, because it is huge. You are a great mom, helping her understand it rather than just telling her to be tough, and letting her know you care so very much about her thoughts and struggles, in the midst of your own. The second joyful mystery, the Visitation, helps me illustrate this very thing to my kids: Mary was going through a trial herself when she went to help Elizabeth. You are showing your daughter that example every time you comfort her. That can help her cope also: when we hurt, especially with helpless suffering, the best thing to do is reach out to help someone else. Maybe we can’t relieve our suffering, but we can help alleviate some of theirs. This also goes for offering our suffering for others, in this life or in Purgatory. Suffering can then be seen as a treasury, and that is what helps me with my chronic illnesses and conditions. I’ve pretty much always got something to offer up. Once i was at Mass and saw a teen who looked a disgruntled mess and i was about to offer up my suffering for his soul when i realized that i was in a rare moment without discomfort. I was actually disappointed, and felt like, “what? I got nothin’!” Suffering really can become valuable in a weird way (though i confess that my whiny moments far outweigh my selfless ones, and this moment of grace was for sure because i was at Mass).

    Perhaps as she grows you can share with her that with suffering, we have a choice of what to do: will it make us bitter, or better? My husband had an awful childhood, but when i say i wish i could go back in time and save his little self from it all, he says it is what made him who he is. My father, a supreme cynic, says there are few good people in the world and my husband is one of them, so it isn’t pride in my husband to know he turned out kind, compassionate, and thoughtful. My husband knows it is because, not in spite of, what he suffered as a child. A famous rabbi once said, “the person who has never suffered, what does he know anyway?”

    May God hold your family in the palm of His hand and comfort you. Thank you very much for your writing, as it is certainly a help to me.

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