Pain for me is inevitable. I feel it every day upon waking, every day upon sleeping, and sporadically throughout the day on a good day or constantly on a bad day. It’s how I know I am still alive. If I woke up without pain or nausea, I would think I was dead. This is my reality. I could scream. I could cry. I could give up. But this is the hand I believe I have been given by God and I intend to play it to the best of my ability for as long as I’m able.
But being in pain when you are trying to relax, to have fun with your family, to do something you rarely get to do, is challenging. It is trying. It is heart breaking. There are so many days I want to give up. There are many days I want to stay in bed. There are many times I want to stop fighting.
It doesn’t seem fair. It never seems fair. I hope that I will have just a few good days to do the things I want. Yet I am so sorely disappointed when reality sets in and I’m kicked off my feet for the 100th time.
Instead of sitting here staring at my computer, I could be on a boat right now, yet I had to cancel the reservations because pain and nausea is my reality today. So instead of soaking up the last days of sun I have, I’m left confined to an air mattress where the bathroom seems to be my only destination for the day.
At 26, days like today leave me feeling defeated. I feel deflated, worn out, tired. I feel as if I am constantly pushing my body and am only met with consequences instead of rewards. For most, going to the beach, the pool, shopping, or any other activity on vacation is relaxing. But for me it is taxing. It is trying. It is all too often overwhelming.
As I lay here feeling completely and utterly expended, I can’t help but remember last year when I returned from vacation. Last year when I was almost placed on feeding tubes. I can’t help but think it was my fault. If I hadn’t pushed myself too hard, if I hadn’t eaten so much, if I hadn’t tried so many new things, maybe, just maybe, I wouldn’t have been put in that situation. But here I am a year later, worrying that this will be my destination at the end of my vacation.
At one point, being put on a feeding tube seemed life-saving and life-altering to me. I thought if I never had to eat again, I would never again feel pain. I would never again feel nauseous. I thought this would be the answer to all of my problems. But after research and seeing my community go through TPN, GJ tubes, and other various tubes, I am left terrified.
I’m utterly terrified. I don’t want a synthetic tube giving me the difference between life and death. I don’t want food being rerouted around my stomach and vented out of a plastic tube. I don’t want to take my medications through a tube and sit idly by while others enjoy food around me. Eating hurts. But not as badly as not eating hurts.
Yet there is this deep-seated fear in me that when I go back to Hopkins, I will end up on feeding tubes because of the choices I have made on vacation. It may be irrational. It may be hasty. It may be unfounded. But these are the feelings whirling through my head as I lay here unable to do much more than staring at a screen.
Because reality for me isn’t tanning on a beach. Reality for me isn’t eating scrumptious meals that are digested properly. Reality for me isn’t strolling downtown shopping through the streets of a new city. Reality for me is a hospital bed. Reality for me is a synthetic tube being placed in my stomach with a needle perforating my esophagus and stomach lining. Reality for me is IVs, surgeries, procedures, tests, and doctor’s appointments.
My life certainly isn’t a vacation.
That isn’t to say that I’m not blessed. I am truly blessed and can quite honestly say that I love my life. I love the man I am married to, the country I was raised in, the family I lean on for support, the two dogs I get to call my own, and each day I wake up with new breath in my lungs. I am blessed that the majority of this vacation I have been able to eat. I have been able to walk. I have been able to laugh and swim and enjoy time with my husband.
But vacation for me isn’t what it’s like for others. Each day the symptoms lighten up, I worry about them coming back. Everyone else is excited when my symptoms lessen even for a few days or hours, yet I rarely am. People think I am cured, but in the back of my mind I always remember that I am not and may very well never be cured. This is my reality.
Most people on vacation have nothing more to worry about than applying sunscreen lotion to their skin or aloe vera to their sunburn. While I certainly did have that to worry about this vacation, I had much more to worry about, too. Am I eating too much? Am I eating enough? Am I losing too much weight? Will the doctors be upset when I get back home and see that I’ve lost 10 pounds? Am I taking my medication at the right time? Am I taking too many pain pills or vertigo pills or nausea pills? Am I taking enough pain pills, vertigo pills, or nausea pills? Am I doing too much? Am I not doing enough? Will I disappoint someone if I tell the truth and say I don’t feel well? Will I regret it if I don’t do this activity? Will I regret it if I do this activity?
Every time I sit down in a restaurant, I am embarrassed. I feel self-conscious and often wish I had a sign around my neck that said, “Yes, I do like the food. No, I do not have anorexia. I have gastroparesis. Believe me, this is all I can eat. If I could eat more I would, but I would regret it and become severely ill.” Everyone thinks I’m being too sensitive. Nobody really notices, they say. But they do. I see it in their eyes and hear it in their questioning voices. “Are you done? You’ve hardly touched your food,” they look at me inquisitively. I turn my eyes downcast, look away, and say, “I’m just full,” when all I want to shout is, “I can’t eat!”
I often order only appetizers and lie and say I will be sharing food with my husband when we both know that’s not the case. I’m simply too embarrassed to tell the truth.
But why? Why am I embarrassed of the truth? I’m certainly not embarrassed of my disease. I’m certainly not embarrassed of my symptoms. But I’m embarrassed of the look I get, that look of pity, every time I share my story. I’m embarrassed every time I get “the look” that says, “your life must be awful,” or “I’m glad I don’t have what you have.” Not to mention that I feel like no one cares nor will they have even heard of my disease anyway.
I’m tired of having to answer the questions. Of having to answer after someone says, “Gastro what? Wait so it does what to your stomach?” It makes me ready to go make a shirt that says, “My stomach is paralyzed.” End of story. No questions asked. Yet to avoid all of this, I respond with the girly sounding response of, “I’m full,” even though I barely touched my food and had to beg my husband to eat three bites after I pushed my food around the plate to make it look like I actually ate.
I don’t know why I care so much. I know I shouldn’t care about what other people think. It’s hard enough to explain to my friends and family much less total strangers. They can’t understand how yesterday I ate semi-normally, though my semi-normal will never be even half of what a normal person can eat, yet today I can hardly eat a cracker. They will never understand because I will never understand.
Everyone wonders why I don’t become ecstatic when I start feeling better. The truth is, this is why. My life is such a series of ups and downs that I can’t become elated with every up or I will be devastated with every down. I have had to become apathetic and neutral or I won’t know how else to survive. High excitement always leads to a hard crash. I have experienced it over and over again.
Yet do I regret all of the things I have done that may have made me sicker this time? No, I don’t. Because if I play it safe, I won’t have a life. My life is already so different from others that I can’t take the risk of making it deviate any more from normalcy. I don’t believe God called me to lay on my back with no purpose in life or idly sit by and do nothing. I rest on the days I have to rest and live on the days I can live. That’s all I or anyone else can ask me to do.
Truth be told, I would feel bad even if I did lie on my back 24 hours a day. In fact, I would probably feel worse because the depression that comes from an idle life is devastatingly stifling for me. There are absolutely no words to describe it.
So while my life may never be normal, this is my normal. Normal to me is what I make it. So even when I’m on vacation and get knocked on my feet, I am so thankful to have been on my feet just yesterday! I am so thankful to have lived.
So for all those days like today where I want to give up, I have to keep reminding myself that this is the way I believe I am meant to live my life. No one wants me to live it in a bubble, fearful for what is to come. So if tomorrow I get feeding tubes because I ate a half a bowl of ice cream today, at least I lived. This doesn’t mean I can go out and recklessly live my life (reckless for me is eating full fat ice cream). Yet it does mean that I still need to live my life. And for every day I am given on this Earth, I intend to live my life and to live it more abundantly.