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.