I am sitting here watching StepMom with Susan Sarandon and Julia Roberts. It’s the scene where Susan Sarandon’s character’s comes out of the bathroom from throwing up, laundry on the floor from her dropping it to run to the bathroom, having to call someone to pick up her child from a party and then getting angry as she realizes that her entire world is being snatched for her by a disease. Her pride and anger stand in front of her not allowing her to neither tell someone how sick she really is and feeling and from receiving the help she needs. The fear of dying is crippling her and her pride is killing her.
Sometimes when you are ill with something as debilitating as Cancer, Colitis, AIDS, Lupus, etc. it is very easy to fall into this mood of trying to prove to everyone that you are still the same person you were before you got sick. It literally makes you forget how to find humility and ask for help. It seems like all you ever feel is anger, resentment, fear, confusion and embarrassment. 24 hours a day, 7 days a week of pain, fake smiles and fear…mostly fear. Especially when you have children.
I was diagnosed with my disease and sick before I even met my ex and it didn’t scare me. But there were moments when my body was truly working against me, and all I could think about was making the laundry disappear, the house as clean as it could be, putting a smile on Steven’s face and amazing food in Jaxon’s belly…but I couldn’t even walk out of the bathroom. I felt myself fading away. I would wake in the middle of the night and lay and listen to Steven breathe and snore or sit in the rocker next to Jaxon’s bed and watch him sleep. I was living like I was dying. When I was packing up my stuff this fall in Texas I found all my journals of notes to Steven and Jax, just in case my next hospital visit was my last. On my bad days or my good days I would write down the date and the time and the moment. The moment usually included them in my thoughts, so I wrote down my thoughts. Sometimes it was a memory. Sometimes it was song lyrics that reflected my feeling for them. It was like I was recording for the future. Afraid of missing out and afraid of being forgotten. Everything had to be a memory that neither one of them would forget. I went over the top and out of my way to create rituals, and make everything was an event, taking pictures of every little moment. Everything was sacred and special as if it were the last time.
I wanted Jax to know every moment that he was alive I lived for him. I wanted to Steven to know that every moment we shared together was the best moment of my life. Making my mark on the world wasn’t important anymore. It wasn’t that time was running out, it was I didn’t know how much of that time would be standing up and out of a bathroom. I just didn’t know how much time I had, and most of that time I had I didn’t feel very alive. The way my mother looked at me. The way my friends looked at me. The way Steven looked at me. The way the doctor’s looked at me. It scared me. I accepted my disease in the wrong way. I accepted it to be the end and so I spent my time prepping to die and not enjoying the fact that I was living. I didn’t really know what I looked like, but I know what I felt like and I knew that there wasn’t a way that I could live this sick for very long. I was either going to find a way to get better or death would find an escape plan for me.
I was so afraid of being so sick that I wasn’t able to be a mom and that Jax would grow up and not remember having a decent mother like his friend’s had. I was afraid of him having this image of a pale, drawn in, sickly looking, ugly woman for a mother and not the beautiful girl I was when he was first born. I didn’t know how to ask for help and I ran myself even further into the ground trying to be the perfect mother, the perfect daughter, the perfect sister, the perfect friend, the perfect daughter in law and the perfect wife while my entire body hurt from the time I awoke to the time I shut my eyes. But had I been honest about just how much I was hurting. If I took a moment to allow myself healing time instead of trying to pretend I could handle it all. I should have said no more, cared less about what I thought people thought and listened to what they were saying. I should have taken people up on their offers more. I took it more as offense when they told me to take a rest, or when they offered to help or step in for me with Jax or cleaning, etc. The disease didn’t isolate me, I isolated me. Asking for help doesn’t make you weak, it shows you’re smart! Know that you aren’t dead yet, so if the doctor hasn’t given you a date, don’t set one. Just live and enjoy! You’re kids will never forget you, you live inside of them! You can’t begin to heal if you’re stressing about dying!