“You’re so strong!”
“You’re incredibly brave!”
“What an amazingly strong and independent woman you are.”
“You’ve got this, you can beat it.”
“She’s the strongest person I know.”
“Look how brave and fearless she is.”
“I wish I were as confident and
optimistic as you.”
“You make me feel like a better person.”
Pretty nice compliments, huh? Anyone would feel honored and thankful to hear such nice things said about their character. But you know what I feel when I hear these comments and others like them?
Shame. Because it’s all a lie. I’m not confident. I’m not strong. I’m not optimistic. The persona you see me display is a facade, a shell on top of what’s truly inside. And what’s inside is deep seeded fear.
When I first got sick I was pretty cocky and nonchalant about the whole thing. I was naive, figuring I’d get over it soon enough with the right medicinal cocktail. And as I slowly got worse, taking more sick days, spending more time in the hospital, I still didn’t quite grasp what was happening. In fact even after I had to leave my job and apply for Social Security almost two years ago, I still hadn’t really accepted reality.
It wasn’t until about a year ago, after another trip to the ER in the middle of the night, and another series of imaging scans, blood tests, and being poked and prodded by cold fingers, did I start to let the fear seep in. I remember the exact moment that reality hit me actually. It was a week after this fateful ER visit and my Rheumatologist at the time (whom had terrible bedside manner and has since been replaced) had just casually mentioned that they found Lymphoma in one of my tests. My head snapped up, and I looked at him bewildered, sure that I had misheard him.
“Lymphoma..what? What are you talking about?”
He didn’t even look up from his laptop at me, just continued to tap tap tap away on it, and very casually mentioned, “Yeah the ER found enlarged lymphnodes and it looks like cancer.”
I mean was this guy for real? That’s how you tell your patient of two years that they might have cancer?? By not even looking up from your laptop while writing notes, and just throwing it out there like you’re not even talking about the scariest thing a patient could hear but more like you’re discussing what kind of cheese you want on your crackers?!
I sat there staring at him, not even able to turn my head and look my mother in the eye, though I could tell by the palpable energy change in the room that she was in just as much shock as I. I sat there staring, willing him to meet my eye. Finally he did and actually looked confused that I was so upset. I eventually regained my composure and asked all the important questions that were in my head at the time. He answered, mostly helpfully, and gave me the name of an oncologist to book an appointment with. And we left.
Mom went to use the bathroom, and I walked down to my PCP’s office, which was conveniently located at the other end of the hall, and made an appointment to see her ASAP. With every step that I took, every movement, the fear started to bubble. Over the course of the next five minutes my entire medical history flashed before my eyes. Every single doctors visit, every lab test and needle jab, every overnight ER trip, and hospital visit, and time spent in waiting rooms wondering what was happening now. Everything that had happened to me medically in the last two years, it all pumped through my veins, warming my body like the iodine they so often gave me during cat scans.
I made the appointment with the receptionist at my PCP’s office and walked back out into the hall where mom was waiting. And I came undone. I started shaking uncontrollably, sobbing, hyperventilating, barely able to remain standing. Mom stood there and held me, as I leaned against her, using her body as I’ve done many times since then, like a pillar of support. My pillar of support.
It was on that fateful day that I acknowledged the all consuming fear of dying too young.
Its been almost a year since that day, and I’ve had many hard days, weeks, and months, since then. We’ve done biopsies, MRI’s, CAT scans, X-rays, and blood tests. We found a tumor on my esophagus, but it was benign. Then we found chest pain, and fluid in my lungs, so we focused on that next. Then my bones started to break too often, and a DEXA scan found that at 34 I had severe Osteoperosis. Which started the long fight with insurance to get me the medications that would help. Meanwhile my Rheumatoid Disease continued to get worse, my flares erupting more often, my immune system so compromised that I kept getting sick weekly. Then the hot flashes started, and the night sweats and cold chills. It seemed like my body was attacking itself on purpose. Almost like it wanted the struggle to end, forever.
During all of this, I kept a smile plastered on my face. When asked how I was doing, I had an array of standard answers that I would rotate.
“Oh, you know, just trying to stay optimistic.”
“It won’t do me any good to get upset or down on myself. I just gotta push through.”
“I’ll be okay, I’ll get through this.”
If you know me, then you have most definitely heard one of these answers several times over the last couple of years. In fact, you probably think I’m doing ok. That maybe I struggle sometimes, but I’m always so optimistic that I must be getting by.
This is where I have failed. In many ways I’ve screwed myself over. Because all this time I’ve spent keeping people from knowing the truth of my feelings, I’ve also been keeping them from the truth of my disease. They see my smile, they see me “pushing through the pain”, and they think ‘Wow, maybe she’s not that sick anymore.’ I mean I only go out and about when I’m feeling slightly ok anyways. No one ever sees me or visits on a bad day. But to be honest, even if I started to have a bad day out, when I’m around friends and family, would I have told them?
No. I wouldn’t. I’d make an excuse that has nothing to do with my illness or disease, or I’d lie and say I need to leave because I’m feeling tired or I have a headache. I have never left a family event or friends gathering and given the true reason for my departure. Why do I do this you may ask? Mostly it’s because I assume people don’t want to hear it. No one wants to hear how I’m in pain all the time, or that I feel like shit every day. I don’t want to lose friends because I sound like a broken record set on the ‘Complaining Song’. I’ve already heard people grumble about other people/friends that complain too much about little things, like being broke, or their not so great relationships, or their jobs. I don’t want to be that person. I don’t want people to resent me because I complain about my illness all the time. So I just keep my mouth shut.
The problem is that now no one knows how I really feel. No one knows what every day is like for me. No one knows my struggle. They all assume I’m fine, because that’s what I’ve been spoon feeding everyone for years. But that stops now. Not because it’s time that people know the real me, or that I’m ready to complain, or any other reason I’ve made up in my head.
The real reason, the most honest truth that I’ve ever said aloud…
It may not be the kind of dying everyone thinks of when someone says that. I don’t have one year to live and am about to go on a bucket list journey for the rest of my days. No, nothing as abrupt as I’m counting down the days. But, in actuality, I am counting down the years. I’ve been given a number. A number that I’m not ready to share. But it exists. It’s very real, and it’s very scary.
When I got sick at 32 years old, my Rheumatologist at the time assured me that I’d most likely still live a long and fruitful life, as long as we found a good medication to keep me going. But three years later, and 13 different RA medications, and nothing works.
And not only does nothing work, but in those three years the medications I have tried have had a bad reaction on my body. Steroids, chemotherapy, dangerous narcotics for pain management, these have all given me more diseases that are incurable, and done horrible things to my body. I used to think the enormous weight gain from the steroids was the worst of it. But then came the Osteoperosis. And then the Lymphoma, which we thought we got rid of, but unfortunately I found out this week that its back with a vengeance. Then there’s my reoccurring Pericarditis. And now after some tests this past week all roads point to more cancer. Followed by a healthy dose of Lung Disease.
These are not small ailments that I can sweep under a rug and pretend they don’t exist. I can’t slap a smile on my face and pretend everything is ok, because it’s not. I’m dying from about 4 diseases that don’t have a cure and all the medications for them that at least help people live a longer happier life, don’t work on ME.
I’m not being dramatic or a hypochondriac or making something bigger than it is. I’m dying, slowly, but it’s happening. My body does not want to continue. It’s breaking down at an incredible rate and my doctors, and my homeopaths, and naturopaths, and anyone else who helps maintain life- cannot figure out how to save me.
It’s scary. I’m scared. I was given a number. An estimate if you will, of how long I have if I maintain how I am right now. That number does not take into account the new cancer, or lung disease, or my worsening RA. It’s how long I have of I stay the exact same as I am now. And I’ll tell you, it is not a good number. Not for how old I am now. And not for my reality of getting sicker and sicker as the days go by. In fact the real REAL number would probably shock and scare you too.
This is my reality. I’m afraid. I’m afraid to die. I don’t want to go yet. I want to live til I’m 80. I want to see so many more things. And I want to see them standing on my own two legs, healthy. Not in a wheelchair, or from a hospital bed, but as a well person. But that won’t happen. And I am learning to slowly accept this. It takes time, and a lot of therapy. But I’m accepting my fate.
However, I will no longer keep that to myself. If you ask me how I feel, be ready for a true answer. It might make you uncomfortable, or awkward, or depressed. But I shouldn’t have to hide my feelings or who I am to make other people feel comfortable. That’s not my job. My job is staying alive. And I’ll be working very hard at that moving forward. You can either accept that, or move on.
I have fear. I am afraid. I am scared. I worry. I’m depressed. I’m in pain. I’m sick.
But I also love. I care. I support. I smile. I laugh. I live.
I want to live, not just survive.
If you would like to help support me in my fight against my disease, please visit my page here. Thank you for your continued love and support.