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Today I'm Facing What My Illness Took From Me

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Today I said goodbye. Today I realized the finality of certain things in my life. Today I looked in the mirror and the face staring back at me was a person I barely recognized. Today I cried for the loss of the life I planned.  Today I fought to hold myself together in front of my family and friends, I forced a smile, I faked a laugh, I hid the pain and I played the part.

Today was another day stolen from me.

I realized that some dreams I have always had are over. There are things I planned on doing that I will never be able to do. I had goals, I had plans, I had a vision of my future life and all that I would do. I had career goals and aspirations. When I had to leave my job as a hospice nurse in 2014 because I couldn’t keep up with the physical demands of the job, I always planned on returning once I got my medical problems figured out and treated. I actually desired to go back to school and pursue becoming a hospice nurse practitioner. This was my dream. I miss working with hospice patients every day. I have such fond memories of the years I got to treat these patients and be a part of their support system. I have finally come to realize that I will never be able to return to hospice nursing. I’m struggling to keep working at all. The two days a week at a desk job I’m currently doing is becoming more and more difficult every day.

I had plans to be an active part in my children’s lives. I always enjoyed playing with them, interacting with them, being creative with them. I like to think I have always been a very involved mother. I envisioned myself continuing to attend all their school and extracurricular events to cheer them on and support them. I looked forward to family vacations and experiencing new adventures with them. I wanted them to have a childhood unlike I had, I wanted to be present for everything. Now I find myself in bed most of the day. I struggle to attend school events and try to decide which are most important to my boys and planning to at least attend those. We no longer go fishing. We no longer go on hiking trips. We no longer sit on the kitchen floor and paint for hours. We don’t take vacations because of both my physical limitations and our financial limitations caused by the burden of my illness. I feel like I am failing my children every day.

I studied the face in the mirror for some time. The happy, smiling, youthful face has been replaced. My smooth pale skin is now rough with discolored patches speckling it’s surface. My forehead is marked with permanent wrinkles of a furrowed brow from grimacing with pain. My cheeks are plump from my weight gain. My eyes no longer sparkle, instead they appear dark and empty. Dark circles underneath only exaggerate their dullness. I once again have the acne that plagued me at the age of 14. The skin on my nose and cheeks is always dry and peeling no matter how much I moisturize or wash. My smile is now close lipped because where once I had naturally beautiful teeth, I now have discolored, chipped and missing teeth from years of medications that damaged them. My hairline is receding and the thinness of my hair is more and more obvious.

I cry behind closed doors. I try very hard to hide the pain I feel, both emotionally and physically. My tears are tears of grief, of frustration, of anger and of helplessness. My former self is gone. After holding onto hope for years that I would get better, that the next medicine would work, that the doctors would finally find a specific cause for my symptoms and therefore find the answer to fix them, or that my symptoms were somehow temporary or would clear up on their own after some time, I have now realized this is my life from now on. This is as good as it gets. Answers are just wishful thinking as most of the time the cause isn’t even identified.  Some days I ask myself if I’m crazy, if I’m exaggerating symptoms, if I could really just suck it up and get up and go to work and live normally.  Some days I hate myself for giving in to the pain. Some days I struggle to imagine a life of living in this pain everyday for many more years. What is my purpose? What is my contribution? What can I look forward to? My husband dreams of traveling out west in an RV for weeks, seeing all the sights, exploring the mountains. He looks at pictures online almost every day and shows them to me. It kills me because I know that I physically cannot make this trip. Even if I can physically make it through the drive, there’s no way I will be able to get out and hike mountain trails, explore anything or be anything more than a burden to his sightseeing. How unfair to him. But this is my reality, this is the rest of my life.

I suffer in silence. I choose to suffer in silence. I don’t want anyone to realize how miserable I am and I don’t want to make anyone else miserable. So everyone sees my close lipped smile. They hear my laughter at their jokes. They see me being as normal as they are. They don’t see the tears, they don’t see the handfuls of medications I take several times a day to remain functional, they don’t see the days in bed it takes to recover from a few hours of pretending to be “normal.” they don’t know about the hours spent at doctor visits and testing or the financial struggles caused by them.

Today I said goodbye. Today I grieved the loss of who I was and the future I envisioned. Today was hard and it hurt my heart. However, today won’t be the last today where I say goodbye. I’ve already lived through several todays and there will be numerous future todays to endure. Today hit me out of nowhere, as it usually does, sneaking up on me slowly and then overwhelming me with its harsh realities. Today will always find me and it will always be just as difficult each and every time I face it.

Photo by Maria Lysenko on Unsplash

Originally published: September 22, 2020
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