Coming back again…

Have you ever had a cold dictate an entire week of your life? I have. This isn’t the first time either. I have consistently had something as simple as a common cold or little stomach bug take me out for much longer than the average adult. Sometimes not even just days, I’ve been sick for weeks at times. I used to think that I was just wildly unhealthy. I’d think, ohhh if only I ate better food and exercised more regularly, I wouldn’t be sick for twice as long as anyone else… But that simply wasn’t true. Maybe if I did those things I wouldn’t get sick as often. It would help some. But it wouldn’t get rid of the problem completely.

In all honesty, I will never be clear of the problem completely. I have lupus. An autoimmune disease that takes the good and gives the bad. Which sounds rather negative, but it’s the truth of the disease. It’s very difficult. Sometimes I can pretend it isn’t there, that I'm fine. But then someone wants to go on a walk outside. I have to slather on the sunscreen and pray it’s a short walk. I want to open a water bottle and find it nearly impossible from how badly my fingers hurt. It’s tough.

On a brighter note, I will say that having lupus has given me a perspective on life that I am glad to have. I have learned so much about what your mind can do and how you can push yourself in other ways besides physically and have learned so much that I wouldn’t have without the weeks and months spent in a bed. Is it better having this perspective and being sick than being healthy and without the added wisdom… I’m not sure anyone can answer that question. Because I can’t know what it would feel like to be switched. And most people don’t know my position. However, it is much easier not to sit around asking what if scenarios and just move forward. We deal with the cards we are dealt and do what we can to win our game. Am I a winner most days? Absolutely not. I’m just trying to have as much fun as I can while I’m still in the game.

I’m very very very competitive though. You can ask anyone who’s played more than two games with me. I am constantly thinking to try and figure out how to beat the game. It’s not always about beating other people, sorry Carlos, but it is about beating the game. I’ve gotta figure it out. I’m always go go go go. My mind is one that moves at such a lightening speed, I’m thinking about the next plot point of the conversation while the person in front of me is still trying to contemplate their answer to my question. It’s just the way I’ve always been. A chess player mind. Thinking of steps before they are even taken.

So it is truly a shocking moment when I can’t keep up with a conversation. When I’m stuck on one word. When I don’t catch what someone said to me past that word. It happens to me with traumatic memories that pop up out of nowhere, or mention of certain people. But it’s rare to happen in a medical conversation. Yet that’s what happened when I found out about my leukemia. They said the words and I took my time trying to process the word. Cancer. It just echoed around my brain and made my whole life stop in that moment. I stopped breathing. I stopped listening. If it was possible my heart would have stopped too so it would be completely silent in my body. I wasn’t thinking plans or moves. I wasn’t envisioning me kicking cancers ass like I would take someone’s king in a chess match. I wasn’t thinking of being ahead by 100 points in a card game and keeping my champion title of Tragedy 0-Mariah 4. My mind was blank of anything but the faces of my loved ones when I had to have the conversation explaining what was happening. Everything was on pause.

Now this week was a different kind of pause. I didn’t not think for 5 days but I was stuck in this limbo of not being able to get my chemotherapy, not being able to do things for myself and not wanting to do anything at all. My saving graces this week were watching anime with my partner, watching my best friend clean my room because I couldn’t, and writing this newsletter. I got a cold that just ravaged my body with a fever, unbelievable back pain, a stuffy nose, sore throat, and a surprise period. It made me wish for the good days when I was a little kid and a cold was a single day off of school. It was always a horrible day at home but it was held to just one day. I would get all the sick out and I could get back to school slightly sniffy but running around with other kids and learning.

I’ve always thrived being around other people. Having social interaction is to me what applause is to Tinker Bell. It keeps me alive. I feel like I’m consistently wishing for someone to talk to me. It doesn’t have to be about anything. I simply need the interaction. I enjoy being around about three or four people. That’s a good number. Not so many that I get overwhelmed but enough that I feel not so alone. When I grew up, a lot of the time it was me on my own. Anytime I wasn’t, was at school or with adults. I would spend time with my mother, with my uncles and aunts, I’d rather hang out with my piano teacher and her church friends who were all in their mid 60’s to late 80’s than be alone as an 10 year old kid. That’s why I started reading. It was in an effort to not be alone, to escape the loneliness. Later in my teen years it was in order to get out of my own life and be apart of a better story.

So this week, like many I’ve had lately not being able to go to work, or spend time with my family or friends.. I’ve been very alone. I’ve been trying to read as much as possible and get out of my story for a minute but it doesn’t work like it used to. I’ve been on pause. The one thing that I have right now that is moving forward, that I’m trying to get off the ground and started, is The Mariah Effect podcast. This brand I’m constructing based of compassion. I want other people to see what I see in the world and I won’t feel that my experience is lost. That this all was for something.

I’m back at chemotherapy today and will hopefully be able to keep going and have no more stalls from getting high fevers or colds. I may start calling people randomly, meaning I will text them and ask if they’d like to chat for a few and get a confirmation that they would enjoy that first so as not to give anyone I love anxiety, so that people can help me not feel so alone because it’s okay to ask for help. And boy, do I need help.