Chronic Illness: The Cross, Trust, and the Corporal Works of Mercy

Our family lives in the shadow of a dangerous chronic illness. Regular readers already know that nearly two years ago my husband started coughing up large amounts of blood early one morning and our lives changed forever. Two months later he was diagnosed with Wegener’s Granulomatosis. A rare auto-immune disease that affects the blood vessels in his lungs, but that can also spread to his kidneys and sinuses at any point. He’s only sustained lung damage to date, but with each new flare up we hold our breath to see if it has entered the kidneys. From what we can tell that’s when things start to get much worse, even though the irrevocable damage to his lungs is a big deal.

His disease has been relatively quiet the last few months after he spent nearly a year in and out of the hospital and underwent major surgery for a lung biopsy, suffered a collapsed lung, and lost 1/4 of his right lung in a matter of 2-3 weeks. That’s how rapid this disease can take off. And it’s a silent disease. He has no idea when new lesions and nodules are forming in his lungs until he starts coughing up blood. A combination of prednisone and immune infusion therapy have kept the symptoms at bay, until midnight Thursday.

My daughter and I awoke to hear him have a terrible coughing attack. It was loud and forceful. We both knew what it meant without seeing the actual blood. After coughing up blood for about 30 minutes off-and-on he silently walked into our bedroom and began to get dressed. I asked him what he was doing. He told me that he needed to go to the ER to get checked out. “How much blood?” was all I asked. “The same amount as when this all started.” We both knew that meant new lesions, just not how many.

He drove himself to the ER while I stayed home with our daughter. We have been at this long enough now that we try to maintain as much normalcy for her as possible until we know how serious the flare up is when it arises. I laid in bed praying the Rosary before dozing off briefly in between wakings to check my phone for updates. At 5:30 am he texted to tell me that he was being admitted. They found one new lesion in the middle lobe of his right lung above where his bottom lung is completely dead. They needed to monitor him for an infection.

I got up and started the practical work of getting our daughter ready for school, emailing her teacher to give her a heads up about what was going on, and contacted our priests so that my husband could be Anointed again and receive the other Sacraments. Once new lung damage begins it’s time for him to receive Anointing of the Sick again.

I’ve gotten better at responding when all of this happens. I don’t fear for the worst anymore even though I know the day could come when we get told my husband is dying. I take each new flare up as it comes and I work hard to keep it together for our daughter. I’m not always perfect at it, but I’m getting better as I adjust to this way of life. She’s already been through the intense period of when we thought his death was imminent. Now we want her to settle into knowing that he will have flare ups and they don’t mean he is dying since new drugs have kept people alive for decades with this disease.

It used to have an automatic 3 year or less death sentence before the advent of prednisone and immuno-therapy drugs. My own father’s life has been prolonged well past what doctors expected with how severe his Rheumatoid Arthritis is, and even though he had to go on disability in his early fifties, he’s still with us.

There is a lot that living in the shadow of a disease like my husband’s has already taught me about the spiritual life and about human nature. A path like the one we have been asked to walk is completely based on trust. Trust in God’s plan. Trust that Phil will get the treatments he needs. Trust that God will give us the strength to endure and persevere. Trust that grace is given to us for each new situation. Trust that God will provide the strength I need should he die. Trust that God will give the strength my daughter needs should he die. Trusting completely in Him. That’s the whole point.

One of the hardest lessons that I’ve learned thus far is an existential one. Even with our friends’ prayers and our priests’ pastoral and sacramental care, this is a path we walk alone, not only as a family, but as individuals. I cannot enter into my husband’s existential experience of this disease. That is impossible. I can only look at his suffering from the outside, even as I unite my own to his. I do not know what it is like to have a disease that could kill me at any moment. I don’t know what it’s like to deal with chest tubes and side effects from his medications. I can’t feel the nerve pain that flares up all over his body or the pain in his hands or the debilitating fatigue that hits him out of nowhere.

On the flip side, he cannot know what it is like to be his wife who watches helplessly as he suffers. He doesn’t see what I deal with to keep our daughter calm and wipe away her fearful, confused tears before taking her to school in the morning while I hold back my own tears. The single hardest part about all of this is watching our daughter suffer at such a young age. I feel helpless. Even as I tell her to trust in Christ, I feel completely helpless.

I know that she has to walk this Cross in her own way while trusting that Christ will break in when she needs Him most. She’s only 7-years-old, so redemptive suffering isn’t an easy concept for her. She’s also suffered a lot for someone so young. I didn’t realize how sick my own father was until I was a lot older. She’s experienced a dangerously sick father and four lost brothers and sisters to miscarriage. Understandably, she gets angry and is confused when she doesn’t see other families carrying burdens like these, but I tell her to focus on Christ and our own family. Comparisons and focusing on the “why” will drive all of us crazy.

We largely walk these Crosses alone, together, but also alone. This hit me as I stood in our bedroom on Friday afternoon before I took our daughter up to the hospital to visit my husband. I felt completely and totally alone. I had countless people praying for us. My phone had been buzzing all day. I’d spoken to my own parents. Our priest had been to the hospital to administer the Sacraments. In that moment, I sensed how truly alone I am in all of this. It is that moment of deep existential awareness and often we shrink back in horror or we do what the Christian is meant to do and we cling to the Cross. As the dread and darkness washed over me, I knew that the Cross is the only answer. Thankfully, I’ve held pieces of the True Cross in my hands many times and so I thought of holding fast to those and Christ. I doubled down on my prayer, but I still ached. It’s not supposed to be this way and we know it at the deepest level of our being.

It is the rare friend who can enter into this type of suffering alongside of someone. This is something I’ve come to accept and it’s made me more patient with others. This is meant to be honest, not in anger: Most people respond to us from a distance. The text messages, Facebook messages, etc. are a wonderful blessing, but very few people come visit my husband when he’s in the hospital. He would never say anything because he doesn’t want to burden others, but there is a reason visiting the sick is a corporal work of mercy. It helps in a small way to lessen the burden on the sick person and their family to have people enter into that Cross with them.

We shy away from the burden. It reminds us of our own mortality. We tell ourselves that we will be an imposition while they are in the hospital but this is a lie we tell ourselves to assuage our own guilt. How many people can sit with another person in their agony? How many people can hold someone close as they sob from a place deep within that has been cut open? How many of us can simply be with someone who is suffering? It’s our own fear of pain. We can’t fix another person’s suffering, but we can sit with them and be a loving presence to them.

People who are seriously ill and their family members do not expect you or I to take that suffering away. We only seek human connection in those moments of profound pain. To be united to others. Being sick isolates us and cuts us off from the community. That is an immense aspect of the Cross for people who suffer in this way. As brothers and sisters in Christ, we have a duty in charity to draw those who have been separated physically due to illness into the fold. To walk with them for a little while and offer some respite. If anything, a visit helps to take their mind off of what is going on and to laugh.

My husband and I survive these periods through prayer, the Sacraments, and laughter. There is no stoic seriousness to the way we approach his illness. We make macabre jokes about him dying and we tease the medical staff about things. There is no way we could make it through these times without simply laughing about it all. We can’t control it and being angry or serious about it only makes us feel worse. We have those moments. Exhaustion hit me pretty hard Friday night and its those times when I need to come home and go to bed, so that I can get back up and go again.

The Mystical Body is one, which means that we are meant to walk together in the joys and the sorrows of this life. Yes, it hurts. Yes, it’s hard, but it’s not about us. It’s about the person who is suffering. It’s not about whether or not we do everything the right way or we might be a burden to them. Those excuses tend to come from our own selfishness. When I walk into hospital rooms to bring Holy Communion, I can’t focus on myself. I have to focus on the other person. I’m there as the priest’s representative to minister to them through giving them the body, blood, soul, and divinity of Christ, but also to draw them into the community. I’m there to check on them and see what they need, to pray for them, and to listen if they simply need to bend someone’s ear. It’s not about me. Visiting the sick is about them.

Serious chronic illness is an immense Cross. My husband, daughter, and I are all sanctified in different ways through this illness. We are taught to trust more fully in God and to know that He provides no matter what may come. He shows us that we all must endure our own Golgotha existentially alone, but that we are still united to others who help ease that burden even though they cannot remove it or experience it. Each of us has a path to walk to sainthood, this is the one He’s given to us. Lord willing, by His grace, we will be victorious.

Featured image taken from Wiki Commons.

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.

Catholic Exchange: Responding to the Painful Reality of Death

It is fitting that my daughter came to me on a dark November night. It is the month the Church remembers the dead and prays ardently for the poor souls in Purgatory. The days are cold while the trees shake off the last remnants of autumnal glory to enter into the silent deep of winter. November here is always gray, almost maddeningly so. It seems strange to go from the mountains set aflame with the burning colors of October to end up gray and stark in November. In this time of year the Church and the natural cycle of the seasons invite us to enter into the quiet, dark, and hidden places. This time of year naturally lends itself to the contemplation of mortality and death.

My daughter came and sat on my lap two nights ago and began to sob. Like every other November evening, it was pitch black at dinner time and I was sitting on the couch when she came to me. She nestled close to my heart as I wrapped my arms around her trying to understand what was wrong. She finally sat up looked at me and through sobs she blurted out: “I don’t want to die.” I think every parent feels a dagger to the heart when their child comes to them about death, even those of us who are Catholic. It is true that we are a Resurrection people, but like anyone else, we must confront the reality of death.

Read the rest over at Catholic Exchange.

Catholic Exchange: Finding Laughter and Joy Amidst Suffering

I will continue my series on the Beatitudes and the work of Servais Pinckaers next week. My husband was in the hospital for 2.5 days with a partially collapsed lung, so I was unable to delve deeper into the Beatitudes. Since I spent more time in the hospital with my husband this week, I thought the topic of laughter in relation to suffering would be a good choice. It is something my husband and I rely on to get through our struggles with his illness.

As many regular readers know, my husband has been diagnosed with the rare auto-immune disease Wegener’s Granulomatosis (GPA). We have been working with a Rheumatologist to get it into remission. We are now in the stage of testing the waters to see if his first round of infusion antibody treatment has put the disease into remission for however long we can keep it there. Things seemed to be going more smoothly until Sunday night when he started coughing up a bit of blood again and developed intense pain when he would lie down on his back. We ended up in the Emergency Room where the ER doctor quickly discovered a pneumothorax (air pocket) and partial collapsed lung. My husband was admitted to the hospital and a chest tube placed in his lung.

Spiritual growth through laughter

Throughout our experiences over the last few months—besides our dependence on Christ through prayer, daily Mass, Adoration, etc.—my husband and I have found that laughter is a critical aspect of our journey with suffering. On this side of eternity, suffering is largely mystery. My husband and I do not get to know why he has this disease. Instead, we have to learn to trust God as we walk this path He has given to us. Suffering is a nasty business. It comes with deep physical, emotional, intellectual, and spiritual pain. It cuts to the very core of our being. It is a great equalizer. This we all know from our experiences of suffering, but if we focus solely on our pain and never add levity to the situation, we run the risk of falling into despair.

My husband repeatedly jokes around with hospital staff and plays jokes on his nurses whenever he is in the hospital. He possesses a great capacity for mirth and merriment even in the most trying of times. Our ER doctor this week had the same dry—and somewhat disturbing and macabre—sense of humor that my husband and I both possess. Through laughing about a situation that we cannot control, my husband and I are able to embrace each new trip to the hospital. We then draw the hospital staff into our acceptance of the Cross we have been given by our willingness to step into joy while suffering. It’s not easy, and we have our moments, but we are much more able to handle each new trip to the hospital the more we can laugh at the circumstances we cannot change or control.

I think it’s clear that my husband and I were put together partly because we both use laughter to respond to stress and pain. It is also a way that we are able to grow spiritually. It is quite a feat to see my husband laughing and joking with the medical staff who are caring for him while he has a chest tube in his right lung. He even joked around with the ER doctor who had to cut a hole in his chest and shove a tube into his lung, and he can laugh with the doctors while they try to figure out how to treat a man who has a disease most of them have never seen (some have never even heard of it), or have only seen once or twice in their entire time practicing medicine.

Read the rest over at Catholic Exchange.

 

Catholic Exchange: When Life Feels Like a Raging Storm

There are periods in our lives that feel like a raging storm. The winds swirl up at high speeds, the clouds darken to a night sky mid-day, and rain pours down. The torrential downpour comes in unrelenting waves and we feel like St. Peter standing in the boat staring in fear and awe at Our Lord walking on the waves.

Then he made the disciples get into the boat and go before him to the other side, while he dismissed the crowds. And after he had dismissed the crowds, he went up into the hills by himself to pray. When evening came, he was there alone, but the boat by this time was many furlongs distant from the land, beaten by the waves; for the wind was against them. And in the fourth watch of the night he came to them, walking on the sea. But when the disciples saw him walking on the sea, they were terrified, saying, “It is a ghost!” And they cried out for fear. But immediately he spoke to them, saying, “Take heart, it is I; have no fear.

And Peter answered him, “Lord, if it is you, bid me come to you on the water.” He said, “Come.” So Peter got out of the boat and walked on water and came to Jesus; but when he saw the wind, he was afraid, and beginning to sink he cried out, “Lord, save me.” Jesus immediately reached out his hand and caught him, saying to him, “O you of little faith, why did you doubt?” And when they got into the boat, the wind ceased. And those in the boat worshipped him, saying, “Truly you are the Son of God.”

Matthew 14:22-36

During periods of trial, it can be easy to stand paralyzed by the storm. We can begin to focus on the crashing waves, the wind blowing so hard we can barely stand, or to shake violently in the freezing rain. In this passage from St. Matthew, the boat was beaten by the waves from the wind, but often the storms in our lives can feel like a hurricane. Suffering, pain, anguish, affliction, and struggles in this life are meant to strengthen us, but most of us battle immense weakness in the face hardships. These are periods that can be marked by doubt, fear, anger, anxiety, mistrust, and a deep desire to flee. So, what are we to do?

Read the rest over at Catholic Exchange.

Catholic Exchange: Learning Balance Alongside St. Martha

A good many of us live busy lives. This busyness can become burdensome as we pack our days with activities, work requirements, family engagements, and especially during periods of illness or suffering. Our service to our families and our neighbors can become a source of resentment, exhaustion, and spiritual malaise. This is precisely why Our Lord lovingly rebukes St. Martha when she allows herself to become so overburdened that she cannot stop in Christ’s presence.

Jesus entered a village where a woman whose name was Martha welcomed him. She had a sister named Mary who sat beside the Lord at his feet listening to him speak. Martha, burdened with much serving, came to him and said, “Lord, do you not care that my sister has left me by myself to do the serving? Tell her to help me.” The Lord said to her in reply, “Martha, Martha, you are anxious and worried about many things. There is need of only one thing. Mary has chosen the better part and it will not be taken from her.”

Luke 10:38-42

Through St. Martha’s example, Our Lord is telling us that we must find balance between service and prayer. If we do not take time to sit quietly with Our Lord in adoration, then resentment, anger, envy, exhaustion, and spiritual dryness can take hold. We can become trapped in sinful cycles that can only be broken through time with Christ and renewal through the Sacrament of Confession.

Read the rest over at Catholic Exchange.