After the Storm

There’s so many recent headlines featuring massive weather events happening around the world. When I began writing this, Hurricane Melissa was working its way across the Caribbean, destroying so much as it went. During these big storms we see photos or videos of the destruction, hear statistics of death and loss, then we, the ones not in the middle of it, move on to the next big headline. But for many of the people who have been hit by hurricanes or typhoons or wild fires or earthquakes, life never quite goes back to how it was before. Even if the physical damage is repaired, there may be lasting fears or anxiety or pain which can take so much longer to resolve.

Michael is totally recovered from his gallbladder surgery. He’s on his way to the worst of the visible skin issues from the Shingles clearing up. From the outside, it certainly appears that all is well. But the electric shooting nerve pain which zips down his arm right to his pointer fingertip causing him to cry out in pain and drop anything he’s holding tells a different story. Reading how the lasting nerve pain can continue for months even though the huge blisters are long gone is horrifying, especially when the prescribed pain medication never fully takes it away. The pain is not like anything I’ve seen before… the lightest accidental brush of anything against his hand or finger causes extreme, excruciating level-10 agony which lasts for minutes before a slight reprieve, only to flare back up again throughout the night and day. Sometimes just shifting his position causes the nerve to fire up. Michael can’t do anything which requires two hands at the moment. This is hard on all of us for a wide range of reasons, one of the biggest being seeing someone you love in near constant pain!

A recent comprehensive blood test was followed by a visit to his transplant doctor. We found out his red blood cell count was below the threshold of safe, so they ordered a blood transfusion. He needs a very particular kind of blood, not just a compatible type, but one from a donor who is CMV negative, meaning they’ve never had the Cytomegalovirus, a very common childhood virus for those raised in Hong Kong, which like Chicken Pox, lives in your nervous system for life. Once found, the CMV negative donated blood needs to be treated with a little bit of radiation to prevent the lymphocytes in the donated blood from reproducing and engrafting in Michael’s bone marrow, which leads to transfusion-associated Graft Vs Host Disease. It can take a long time for them to find compatible blood, which meant returning the next morning.

I had made plans for that next morning which didn’t involve another trip back to the hospital. We’ve learned to hold our schedule very loosely as things large and small constantly get bumped in service of Michael’s health. This doesn’t get any easier as time passes. It’s impossible to get used to. I cry several times a week over having to cancel or miss out on things which fill me up when I’m running on empty. It’s becoming more difficult to talk about, this all-encompassing hungry black hole of need and anguish. The biggest storms of chemotherapy, radiation, and bone marrow transplant have passed… things with difficulty levels so high the average person will at least have heard of them and have some understanding of how life altering they may be. But all this other stuff? Needing a blood transfusion on a random Thursday but having to drop everything to come back on Friday to get it, or having excruciating invisible nerve pain that renders your hand completely unusable? They are far more abstract, far less something which might prompt extended empathy and care.

We’re a little over six weeks away from hitting the one year mark of hearing the worst news of our lives. A little over six weeks from my birthday, from Christmas. I can’t bear to think of it. I can’t bear the decorations which have begun to pop up all over town. Nearly every day this year I’ve thought, I can’t do this, I can’t go on, a refrain which only grows louder as time passes. The aftermath of what we’ve experienced continues to present itself in horrifying new ways, in areas we thought were strong and well supported. Things are falling apart. Cracks we’ve been trying to keep patched are growing wider, and unexpected external pressures are squeezing tender places, creating agony for all of us. While focusing on the most urgent of our never-ending emergencies, precious, breakable, irreplaceable things are slipping away, falling from our grasp.

Like just about everywhere else, our little beach community in Hong Kong was hit hard during the Covid pandemic.

We’re on the same island as the airport, and have a direct bus which used to run around the clock. Lots of pilots and air crew lived here, a small oasis of beauty just a 25 minute ferry ride away from the buzzing metropolis of Hong Kong Island. During Covid, the government frequently closed down restaurants and bars, allowing only takeout. Our beach community was mostly filled with local establishments, not large chain restaurants. When it was clear that the shops and restaurants were struggling, the community came together to make sure we were getting frequent takeaway meals to keep these places from going under, to keep the staff employed.

When Hong Kong’s borders finally reopened and all restrictions were lifted, everyone breathed a deep sigh of relief. It would be slow to rebuild but not impossible, and only a few places permanently closed. The relief was temporary, as very quickly our beach community’s management company steeply raised commercial rents, often by 40%! So many of those places that had carefully held out during the worst of the Covid storm finally went under. Tourism didn’t immediately bounce back after three years of closures. A great number of local residents left Hong Kong for good when their companies relocated elsewhere, or went under completely as was the case with one of Hong Kong’s local airlines which decimated our beach community, taking our neighbors and friends to other corners of the globe. All that effort our community put in to helping each other through the worst of it wasn’t enough to last. The pandemic was the storm, the earthquake, the tsunami. Imagine surviving that and then going under because of black mold when the floodwater recedes, a fierce aftershock, or rip currents as the wave returns to the sea.

That is what our current existence feels like. We’re surrounded by visible damage sustained from this extended medical crisis, sore and battered from the sustained fight. And now we’re finding huge damage in places which previously held firm during the worst of it. Exhausted and depleted from the loudest of emergencies, quiet things had time to fester and spread unnoticed, unchecked. Is anything actually safe? Where does this end?

I am attempting to imagine a time in the future when I go back and read these posts describing the brokenness surrounding us and turn to my family and say, “Wow, we went through a lot. But we made it.” From where I sit, writing this next to my beloved husband whose nerve pain leaves him contorting in agony, I can’t yet see it. I can’t even imagine getting through this afternoon when yet again a real estate agent wants to show our apartment to a potential buyer while I’m still here in my pajamas at 2:30 pm with mascara pooled under my eyes from all the crying. There’s no flowery refrigerator magnet with a cheery Bible verse we can slap on this situation to make it better. There is only gritty, desperate belief in goodness we can’t see or feel or touch right now. The lack of tangible evidence in this moment doesn’t mean it’s not there.

Please keep our whole family close in your hearts and prayers this week. There’s (obviously) a lot going on. Thank you. More soon.