When Most People Ran Away...
I keep being told that I'm not alone. Sure, in many ways I'm not alone. But as anyone who's batteling a disease, they'll know what I'm talking about. I am alone in this. No one can win this for me. No one can do chemo for me. No one can take my cortisone meds for me. No one can fall asleep for me. No one can feel my pain for me. No one can or will cry for me. No one will know the feeling of living with this, but me.
Everyday I do everything I can to keep strong. I laugh, I smile, I talk on the phone with friends to ensure them of my wellbeing. When I lose chunks of my hair I laugh it off. When I'm sitting in the chemo room I smile to the nurses, I smile to the other patients. I smile that smile that says, I'm OK, I can do this, and so can you. We'll do this, no matter how hard it gets. A smile can say a lot you know, it can do a lot.
Maybe I make it look easy. Maybe I make the impossible possible. It's the attitude I have, and will always have. But I don't think anyone really knows the whole story, and I don't know if they ever will really. So often, I think people (I say people to not point out who I'm talking about, it could be friends or family), think I do this and it's easy. I think often, people think what I'm going through, is not "that" bad. Sure, in comparison to a million other cases, it's not that bad. But you know what, I am that one in a million. I am that statistic. LCH is a one in a million chance hit.
I do everything I can, everyday to have a "normal" life. You see, the battle I face is not just my disease, it's everything around it too. It's dealing with family, with friends. It's batteling the concept of being sick. It's coming to terms with so many fears. It's being alone day in and day out with no company but myself. It's having to deal with absolutely everything on my OWN. I do chemo on my own. I deal with the doctors on my own. I deal with insurances, problems, doctor appointments, tears, cheering myself up, making my food, fears, all on my own.
Of course, there are times when I tell friends what's going on. But how much can they really help? This is not to say that those who have stayed haven't been amazing. But I can say right now that no, I haven't had my family's support. Not the kind of support I need. To this day, no one has comforted me when I cry myself to sleep at night. To this day, no one has ever held my hand when I've sat there doing chemo. To this day, no one, and I mean NO ONE knows the entire story. No one knows how bad it REALLY is. Blame it on me, whatever. I don't tell the whole story and that's because I recognize emotional cues. People don't seem to have the energy. They don't seem to want to see me in too much pain (whether it be emotionally or physically.) I can tell when someone has shut off when I'm talking about what I'm going through. I can tell when someone is feeling uncomfortable. I can tell when someone is listening but not hearing what I'm saying. I can sense people's fears towards me. I can tell by people's actions what they're trying to say. In very few cases have I been wrong. Usually I'm right about these things. I don't know why I can sense all of this. I guess it's a talent. Maybe it's to do with my personality. Either way, it's made it all the more difficult for me to let go and just talk to someone, with no inhibitions.
When I talk about how people have chosen not to support me or chosen to distance themselves from me, I always get the question, who are you talking about? I always chose not to point out names out of respect to them, and I still won't point out names. But to me, it's obvious who's walked out, and who stayed with me. Some walked out dramatically, some walked out silently. My support network just got smaller and smaller with every month that passed.
But I have to ask, what is everyone so bothered about? I get how everyone is scared, I do get that. But to walk away? From WHAT? You're not the one going through this. You're not the one who has to suffer. You're not the one who has to go through the experience. You're not the one facing all these fears. I am. Everyday, I'm the one facing EVERYTHING!!!
What I'm trying to say is that, if anyone thinks it's been hard facing me, facing my reality, dealing with all the shit around what I've been going through...imagine...just imagine for one minute, sixty seconds...what I have been going through. Walk one minute, not an hour, not a day..ONE MINUTE in my shoes and come back and tell me it's too hard for YOU to deal with. Look me in the eyes and tell me YOU think it's too hard, or too much, or too negative or too what not. Whether you be family or friend, I can bet my life on the fact that you don't know.
To everyone who has stayed so far...thank you! You have meant the world to me and given me a reason to keep standing.
Good Night! xxx
I cried all the way through this text. you're right, we don't know what you're going through really, even if you talk about it. and the people you say who are not supportive, not there for you, don't deserve to have you in their life. I love you hebbah, and you will always have my support and love no matter what.
I cried all the way through this text. you're right, we don't really know or understand what you're going through, and we can't actually help you deal with this disease, except give you support and love. and those people, whoever they are, who aren't giving you the love and support that you need, do not deserve to have you in their life. love you heboba!!
Sweetest and dearest, F. I love you too and my life is enriched because I have you in it. Thank you for everything, you're so amazing my dearest ;) xxx