Since I developed serious health problems following a surgery in August, there have been many, many milestones and victories. I shared many of those on social media, but at some point, I noticed that something in me was resisting sharing those victories.
I took some time to reflect on why that was. Why would I be resisting sharing happy news so that a wave of congratulatory comments would undoubtedly follow? As I would watch those digital high-fives roll in when I did post an update, I noticed I was feeling an undercurrent of resentment.
I eventually did come to an understanding of this mysterious feeling. So many people were waiting to hear good news and celebrate with me, but where were they in the difficult moments? They had no idea of the challenges I was going through on a daily basis as I worked to get my strength back.
This wasn’t necessarily their fault. Plenty of people reached out to me asking how they could help and offering a listening ear. For the most part, I leaned on an inner circle of family and close friends, but I did truly appreciate each and every offer of help and comfort. I didn’t necessarily want to reveal the ugly truth to all… It might look like I was complaining, like I wasn’t grateful for the fact that on the whole, I was very lucky and my health was returning. Or sometimes I just didn’t want to dwell on the negative…but at the same time, I wanted people to understand. On paper and in the long run, yes, I’m getting better. But the reality of living it has been complicated and has mostly felt like 2 steps forward, 1 step back.
Over and over again, it felt like the universe was offering me a mirage: a beautiful picture of what things would look like—but when I got there, it looked completely different. It started almost immediately, when I first was allowed to eat after being fed from a bag for two weeks. I’d pictured myself enjoying all manner of juice, ice cream, yogurt, and popsicles after not being allowed even to drink anything for 10 days. Without warning, I was told that I was on a liquid restriction: because my kidneys weren’t working, my body wasn’t taking off excess fluid. To make sure I didn’t gain too much between dialysis sessions, which would make my heart work even harder, I was now barred from drinking more than 750 mL per day. Soft foods such as yogurt also counted toward my liquid total. Here I had thought I’d have free rein to eat and drink all the items I’d been missing, and now I wasn’t even allowed to drink enough liquid to comfortably wash down food at mealtimes!
When I finally got out of the hospital and got to wear something besides a hospital gown, none of my pants fit (my body retained 40 pounds of fluid and lost it gradually; I didn’t get back to my normal size until October). I’d been so looking forward to wearing sundresses, but now I didn’t want to wear them because everyone would be able to see the medical tubing sticking out of my chest, a constant reminder of my dependence on dialysis.
Long before any of this happened, my husband and I had booked a trip to the Bahamas with a group of friends. From the time I was in the hospital, it looked like the timing might just work out perfectly: that I’d be well enough to travel by the trip date, and the trip could mark the end of this awful ordeal. Then my kidneys’ improvement plateaued for a few weeks. Not only did it look like the trip was a no-go for me, but it wasn’t certain that I would ever recover enough to get off of dialysis. It was a devastating few weeks until my blood work once again began showing improvement. In the end, I did get to go on the trip, but I still had the tube in my chest and wasn’t able to partake in the swimming and snorkeling that had been part of my vision for the trip back in August, when it was motivating me to get up out of that hospital bed and go for walks to get my strength back.
I knew that the day I got the dialysis port removed would be a momentous occasion. It would mean being free from the burden of dialysis. In my mind, it symbolized the return from sickness to health. Throughout the fall, I said many times that when it happened, I wanted to celebrate by going out to dinner at the Olive Garden. When I first got home from the hospital and was still so weak, I watched a lot of TV and I would keep seeing Olive Garden commercials. At the time, I was on a restricted diet for kidney disease. I had to drastically limit my intake of sodium, potassium, and phosphorus. Thus, I was not allowed to eat cheese or tomatoes—and no restaurant food at all. So of course, the cheesy and tomatoey pasta dishes in the Olive Garden ads looked like absolute heaven. I had a vision in my head of a celebratory dinner with my parents and my husband’s parents, during which I’d order one of each item on the menu, have a bite of each, and take home all the leftovers.
As it happened, I got the dialysis port removed the day before Thanksgiving. It was a bit of a rush job; the doctors like to remove it as soon as it’s clear a patient won’t need it anymore, because it’s basically a tube going straight up to your heart and it can be disastrous if it gets infected. We did not have advance notice. The following day, we went to my parents’ house for Thanksgiving. It was wonderful to see them and to celebrate, but I’m still waiting on my Olive Garden. And to top it off, I was also diagnosed with a MRSA infection during Thanksgiving week, and prescribed with antibiotics to treat it. Just as I hoped to celebrate an endpoint and leave my illness behind, here was a reminder that I wasn’t out of the woods yet.
I firmly believe that when the universe has a lesson to teach us, it will keep sending us that lesson over and over until we learn the lesson. Based on the experiences I just described, all I can gather is that I need to learn to let go of expectations and relax into the moment enough to appreciate what is, exactly as it is. That’s what I’ll be focusing on this holiday season. My life may not be perfect, but in the absence of perfection…it’s pretty great.