I’m sorry that I haven’t gotten to the big wedding post… I haven’t gotten to that point. I don’t think I have to capability to process that much joy in such a short period of time. I will say this. I really do feel like I have 2 families now. And I’m lucky to have both of them refer to me as family. Every time I interact with one of my in-laws, it’s like I learn what unconditional love is all over again.
But this is turning into a wedding post and it can’t be that. I have to tell you how I feel. I have to tell you wear I am.
To put it simply: I am struggling. To most of you, I know it seems as though dark skin, curly hair, and weight gain are all I have to deal with. I wish I could declare everything that I’m dealing with. I wish I could write it on my shirt every day so that everyone around me could act accordingly. Whether they hurt the circumstance, help, or just avoid it. At least everyone could start being honest. Most of all me.
I am hurting. Every day. I haven’t felt like anything close to ME since before the transplant and to be honest, much earlier than that. And this procedure. This life saving stem cell transplant that would give me my life back? Well in giving me life back, it seems to be draining at my soul. I can feel it. I can see it. Others can see it. They way they react to me is different. They way people look at me is different and it irks me. It’s confirmation that I’m different. Confirmation that I’m damaged.
I try to bear it. I do. My physical ailments, my mental ailments, I try not to wear their tax on my face. I keep joking, keep smiling, keep working, keep driving, keep trying do things around the house. This keeps controversy to a minimum and that’s what I want. I just want single solitary second where someone thinks, “There goes Paulash again… Working the system” or someone says, “I guess I’ll have to do everything again.”
I wish people would understand I’M trying. Don’t you think I want to be able to do everything I was capable of doing before this whole nonsense went down? Why would I.. Why ANYONE want to feel like this every day? Where getting up is as hard a task as any. When the day is over your legs are so fatigued they ache so hard you can’t touch them without feeling pain shoot up and down my leg. Pain that will give me pause when I get up from the chair I’m sitting in. I have skin so dry, it’s embarrassing. I mean, I’ve heard a lot of ashy jokes, but my scalp is ashy? I have to wear hats to work to protect my face from the lights and sun so that my face doesn’t peel off. I have to put a special cream on my face (with its own set of side effects) all over my face to protect. We’re in the dead of fall and I have to put on sunscreen every day. Do you know how much time that takes when you’re trying to get ready to go to work? I was supposed to visit one of oldest and dearest friend’s house TWICE over the last 3 weeks. She’s just had an adorable baby and I wanted to spend some time with them. I canceled on them. Twice. In consecutive weeks. Because it would’ve been a Friday and I just don’t have it after a full week of work. I don’t have the strength to go to her house and sit on a couch. Maybe if I talk about this stuff more, people will understand.
I know people have tried to be understanding. And I know my condition is taxing on you as well. But, I’m willing to bet that you wouldn’t want to switch places with me. So, when you castigate me because I can’t perform everyday tasks after I worked an entire day is NOT BECAUSE I’M LAZY, it’s because my body doesn’t have it. When you choose to spend your time with someone that’s been a thorn in my side for the past 25 years instead of me, the one who fought for your attention for all time, don’t get mad when I feel scorned. I’m having enough trouble finding people I can REALLY count on than to have to deal with this.
I just know that right now, I’m getting tired and I need somewhere to begin. Because I don’t want this to be the end of me. I want to be a survivor. I don’t want to just be alive. I want to live life. I’m hoping to know what that feels like at some point.
