Home Sweet Home (Back from the Hospital)

So, after 11 days in the hospital, I’m back home.

It’s really weird.

It almost feels like it didn’t happen, like the whole thing was a weird dream or a distant memory. I’m having a hard time processing what actually occurred, even though I just lived through it. I feel so distant from it already and yet, it affected and will continue to affect my whole life.

I’ve never been in the hospital like that before — especially not for anything life-threatening and never longer than a few hours. It’s so strange to me that I was the person receiving blood transfusions and X-rays and scans and blood tests and monitors and a whole gamut of other things. Me. I was the one on oxygen, I was the one getting constantly checked on by doctors and nurses around the clock, I was the puzzle who perplexed the team of doctors who had to figure out what was going on with my body and how to stop it from hurting itself.

It’s so surreal.

And being back home makes it even more so. Home in California is a familiar place — some place I understand and yet, it’s different. I know I’m different even as these walls look the same. I know I’m different even though it’s the same staircase I climb, the same sinks I use, the same couch I sit on. Everything looks the same, but it doesn’t feel the same.

Home is a frame of reference I sort of understand, but for 11 days, I’ve been living each day in a state of huge ambiguity and uncertainty.

I didn’t know when I would leave the hospital. I didn’t even know if I would really be okay or what that even meant. I just really had to take it moment by moment.

But it’s funny how life works because the day before yesterday, there came a very clear moment when I realized that the time for me to leave was approaching. And I knew it was up to me to decide. At first I was scared and worried if I was really ready, but some situations at the hospital made it very clear that it was time for me to begin to navigate my recovery more independently. I had hit a threshold with the chaos around me and being sucked into everyone else’s energy and their own struggles with their health (I guess that happens when you’re sharing rooms with other people trying to recover).

It was at that moment that I realized that the hospital is a place to make you stable, but not a place to really heal.

So, even after a couple of hiccups in the morning and a little backtracking in my health (that eventually got resolved after consulting with doctors), I went forward with the discharge process. And I was excited. Somehow, I found this energy inside of me to get myself ready to go — I miraculously found a way to hobble slowly around my hospital bed and change my own clothes for the first time, to gather my belongings at a snail’s pace, and to imagine what it would be like to finally be in a space with real peace and quiet.

And then I was in the peace and quiet.

I spent my first few hours at home alone. Because my mom had her own chemotherapy appointments to go to, her long-time boyfriend was the one who picked me up from the hospital and made sure I was okay at home. He set me up with everything I needed for a few hours and some food, but he had to return to work. And I was fine with that and actually very touched by his kindness and his willingness to change his schedule for me, but it was still strange to finally be out of that environment and back into this one and to think: “Now what?”

But now is the time when I feel like everything really begins. It’s the start of a new chapter of my life. And it’s one I’ve been quite desperate for, if I look back in retrospect.

I have really wanted to put my health first for years — and I’ll admit that sometimes I was successful at it, but mostly I would put it off or make something else more important. But this situation taught me that there’s nothing more important than taking care of ourselves. 

And that’s what I have to do now. Even though I am out of the hospital, things are not normal or “back to usual.” I’m not “all better now.” I may be at home, but I still have to take it very slowly. I still am not very mobile (the stairs are a huge challenge and take me a very long time with breaks), I am not approved to drive anywhere yet and probably won’t be for weeks, I am not supposed to travel for quite a while, and I am really not supposed to be out or around a bunch of people. I have to protect my immune system, I desperately need to rest (I was averaging about 2 hours of sleep in the chaotic atmosphere of the hospital), and I also have tons of medications to keep up with, not to mention all the follow-up appointments and procedures for the foreseeable future.

But I am not discouraged. Because I see this as an opportunity! I’m so fortunate that I went in when I did and that the damage is not more extensive than it could have been! I still have my organs! I still can function somewhat independently — though I do need help and I’m so touched by people willing to donate their time to us and have been so kind. And especially my mom, who dedicated herself to making sure I had a comfortable room to return to after coming home from the hospital. That woman is going through chemotherapy and her own scary health issues and she is still looking out for me. A mother’s love is really unparalleled. It’s insane. I’m so blessed and grateful.

So, honestly, I am embracing this time as an opportunity  to really begin to honor myself, my body, my boundaries.

And after all of this, I have decided that I want to share more openly about my experiences with lupus and having living with an autoimmune disease.

When I decided to open up and share my story some days ago, I did it out of a need to express myself. What I did not anticipate is how powerful and healing it would be to share my story, to connect with others, to receive their love and support, and to hear other people’s stories of struggle and triumph, too. I had been living in such shame about my health conditions and my abilities and it isolated me, restricted me, and put me in the most dangerous fog.

But being able to tell people my truth, my experience, and have it resonate and be heard is a feeling I will never ever forget. It was truly a paradigm shift for me and I’m still so taken aback by the kindness and beauty of people. It honestly brings me to overwhelming tears whenever I think about it.

So, when I think about what I can do to help pay the kindness I received forward, I think: I need to share more about my experiences. Maybe just speaking about it can help someone else to be brave about making necessary changes in their lives, provide guidance about how to navigate ambiguous situations, or just let them know they are not alone.

So, I plan on writing much more about health issues in this space — though I still want this blog to be about other things in my life, too — like travel (I’m still so excited to continue writing about my Scandinavian Tour of Awesomeness) and of course, just life in general. But after those 11 days in the hospital, I have so much to say about my experiences that I think can really help other people.

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