If you checked your snail mail right now and got a postcard from me, it would say: “Greetings from Sunny California!”
And that bright, beautiful phrase would be written over a picture of a hospital building — where I’ve been residing for over a week now.
Now, I didn’t say anything on the blog but I am back in California to support my mom’s recovery from cancer. I was here back in September but I came back again about two weeks ago, this time, even more quietly.
The plan was that I would come out for a couple of weeks and provide moral support to my mom for her upcoming procedures and this huge, stressful, scary defining moment.
What ended up happening is something we both didn’t see coming:
I ended up in the hospital for health complications of my own.
Now, I really do not like to talk or write about my health, though I’ve done it before. But I’ve kept it semi-secret and vague because I didn’t want to be judged on different standards than other people, or pitied, or limited. I didn’t want to be negative. I didn’t want to complain.
But the truth of that matter is that I live with what can be considered an invisible illness everyday: lupus.
It’s a disease that’s easy enough to cover up as long as it cooperates with you. And so, I’ve tried to keep it under wraps, even from some of my closest friends. I’ve told them that I have it, but I try not to discuss it further and only do as a passing joke or to explain why I am hobbling around like an old lady. Sometimes it’s funny but most days lately, it hasn’t been.
I have been living in excruciating pain and have been unwilling to see it for the past few months. Instead of saying anything, I’ve been internalizing it, telling myself to be strong even as I struggle with the most basic tasks. I’m talking about walking, standing up, breathing. It didn’t start off that way — first it was just this one thing or just that other thing.
But as my abilities decreased, I kept just adjusting to the illness… I couldn’t see through the fog of stubbornness and denial that I had cultivated and built around me. I just figured I would slow down even more — and it came to a point where it was almost all the way. I ended up spending days not moving, hoping to find some motivation to do something more. I didn’t see it as a problem with my body — I saw it as a problem with me not doing enough, not being good enough or trying hard enough.
I figured I must be lazy because it took me 20-60 minutes to decide if I wanted to stand up. Just stand. Because was what I wanted — food, water, changing my clothes — really worth the blinding pain that would shoot up my entire body but especially my heart and chest if I got up?
Instead, I did less but thought more. I tried to hold onto some memory of who I used to be… This optimistic girl who had been bright and energetic who just needed to push herself to be better and stronger. But inside, I was wondering where that girl had gone, where she had disappeared to, and why she was defined moment to moment by pain and trying to keep it together.
I wish I could say I had this big brave epiphany about my health, but it was more of a reaction to a situation that I couldn’t ignore anymore.
It happened Sunday night after a back massage that I hoped would alleviate the intense pain I had been having. I knew it was bad but especially when the massage therapist kept repeating: “Oh my gosh! Oh my gosh! You are too young for this!” I think he was shocked by the state of my back, given that he OMG’d the whole 60 minutes. He also said: “You poor baby!” It really was sweet rather than patronizing.
Anyway, I came home but I didn’t want to go in the house. I just had a feeling things would change and I felt so peaceful and finally not in pain. I wanted it to last as long as possible. But after a couple of hours in the car — trying to talk to friends and delay it — it was time to go inside.
I wanted to go to bed right away but decided I needed food — especially because my appetite had gone way down over two weeks. I finished dinner but felt a little weird and though I didn’t like asking my mom for help, that night, I asked her to assist me up the stairs.
I took them at a snail’s pace, struggling to breathe and stopping for seconds on each one. I made it up eventually but I’m glad I wasn’t alone because all of a sudden, I felt like I never had before.
Everything felt weird, strange, wrong.
I couldn’t focus my eyes because there were black dots and blurry blobs everywhere, so I had to close them and grip the bed to stand.
I felt nauseous and weak and I knew something was horribly wrong. I rushed to the bathroom with the help of my mom, clutching a trash can as I sat on the toilet. Would I be okay? What was about to happen?
I was very scared and worried but somehow I recovered a little. But it was clear that what happened in the bathroom meant that something was going on internally that was not good at all.
I got grounded enough to be helped to the bed, thinking I needed to lay down. But as soon as I tried, my chest ripped with pain and I knew I had to sit up and sit still. I knew if I moved an inch, I wouldn’t be okay. I knew it was time to get help, but I still hesitated.
I didn’t want to worry my mom. I wasn’t the one who was supposed to be having health issues.
But I also knew that this was my moment to get the help I desperately needed.
I finally felt ready and I had this unreal calm like I had never felt before wash over me. It was like spiritual glue — enough to keep me together and I needed it. I clung to it. It was a beyond-me moment, somewhat transcendent.
But I was still scared to tell my mom I needed to go to a hospital and probably that night because I was supposed to be there for HER. I stayed motionless and thought, “Maybe if I don’t move an inch, I’ll make it to tomorrow.”
But luckily, I didn’t have to make that decision. My mom was somewhat distraught, not knowing what to do but her long-time boyfriend asked me what I needed. He was able to articulate and ask what my mom couldn’t — and I knew it was my moment to say: “I need help, I need it now, and I can’t do it on my own.”
It wasn’t a convenient time — it was getting late at night — but we put some clown-looking slippers on my swollen feet (the only things that would fit) and the car was readied. I sat in the backseat, buckled in like a little kid with a blanket over me. As we rode down the freeway, I focused on not moving, on holding on, on looking at the lights and hoping we would get there soon.
It’s good I went when I did because as we slowly shuffled into the emergency room, they found that my heart was RACING. I was doing nothing but my body responded like I was doing non-stop high impact exercise. I was surprised in a way because I felt like I was calmer than usual; I felt like I was doing well compared to how my heart normally acted. But not according to the EKG readings that said my heart was working overtime.
That’s when it hit me that my normal was way, way off-base. But then again: was it really a surprise?
I had an idea things weren’t right since every time I moved, I experienced sharp pain and pressure in my chest. I described it at one point to my boyfriend as akin to having “mini heart attacks” every time I stood up.
Anyway, I thought this would be a story I told after I came home from the hospital but I’m still here, after a week. And I’m realizing that this is not the kind of story that wraps up in a neat little bow after one chapter.
Instead, I see it as the beginning of what could be a very long road — but I am encouraged that I am getting back on the right track.
As for my actual health, I’m glad I came in when I did and not later, but multiple organs are affected at this point. Hopefully a lot of the damage is reversible but we will have to see.
But isn’t that life? As adults, we are called to deal with uncertainty and manage it ourselves. We have to face it and figure out how to survive it. We can have our plans and expectations but they can all change when we least expect it.
There are no definite answers right now for me. I don’t know what tomorrow holds. I don’t know what this means for how things will go with my mom, with living in Michigan (and when I will even return), and I have no idea what will happen with the last semester of grad school right now. But if I think about all the questions I have to answer in the future, it’s too overwhelming. So I’m learning to live one day at a time, to live in these days filled with tests and consults and doctors and nurses and room changes and blood being drawn and medicines and frustrations.
But there are definite silver linings!
Not only am I trying to be intentional about gratitude even though it’s difficult, but I am also finding comfort in opening up.
I finally spoke out about it to people — reached out and said what was going on and opened myself to receiving help and support. And the kindness — the unexpected kindness — I’ve been shown has been the most beautiful thing! To have people care, to have people take time out of their lives to visit or help or say a kind word. To know that I matter… To feel loved… To not feel alone… Those have been some of the greatest gifts.
And another gift I am giving myself is being compassionate and loving and accepting. I’m through with criticizing myself about what I could do better or what I’m not doing. Instead, I’m finally learning to say: “Erika, you’re doing what you can and that’s amazing!”
Through this, I’m learning yet again how disease can be a mirror.
It can tell us what we can’t see on our own or we are unwilling to see. It can guide us and tell us how to honor ourselves. I feel like for the first time in a long time, I’m seeing myself. I’m seeing that I’m strong and I’m worthy and I don’t need to be ashamed and I don’t need to hide and it’s okay to love myself — in action, not just in theory.
What about you? Have you ever had a health scare or supported a loved one with health issues?
The post Greetings from Sunny California (or: My Week in the Hospital) appeared first on Erika from America.