Expectations Aren’t Guarantees

I’ve always had high expectations for myself. I expected to go to college. I expected to graduate at the top of my class. I expected to have a career in healthcare. I expected to have a job lined up before I graduated from college. I expected to get married, buy a house, and for us to have children. I expected to travel the world before and after retirement.

I had a very linear view of life. I believed that by working hard and “doing what I’m supposed to do,” I would go from point A to B to C. News flash: Life is NOT that simple.

In July 2018 I had my first anaphylactic reaction after labeling bottles of breast milk for babies in the NICU at a local hospital. I knew of my allergy to the chemical mercaptobenzothiazole, but only associated it with gloves at the time. I wasn’t aware of how extensive the chemical was until the allergist told me. It’s found in rubber and adhesive products, as well as gloves and latex. Common items such as rubber bands, ear phones, erasers, rubber soles on shoes and boots, band-aids, elastic in underwear and swimsuits, tape, and glue would now spark life threatening allergic reactions if I came in contact with them. Even the residue of a rubber band that used to be on a pen was enough to cause an anaphylactic reaction. That’s how sensitive my body is to this chemical.

For months I kept trying to go back to work. I expected to return to work. But my health continued to decline and I was hospitalized every few weeks to every few months for allergic reactions, severe asthma, or hereditary angioedema flares. I spent days in the ICU on the ventilator each admission. Ultimately It was determined by a judge that there was not a single job that I could do based on my medical conditions.

Out of left field, the life I expected was gone. I never considered the possibility of becoming disabled at the age of thirty seven. I was thrown into a new reality of gnarled, tangled grief. I had to accept the painful realization that the life I knew, the one that I expected to live, was gone. It felt like everything in my life that I worked so hard to accomplish was being ripped out from under me. You aren’t prepared for the complete life shift that happens when you get diagnosed with an illness that can ultimately be your demise.

My expectations were nothing more than thoughts in my mind. Assumptions based on what I wanted at the time, or “that’s the normal thing to do,” or “that’s what so and so wants me to do.” We all want to live a happy and fulfilling life, but our expectations aren’t guarantees.

We tend to think the bad stuff we hear about only happens to other people. We’re aware that it exists. But we feel like it’s just some abstract thing happening somewhere else. Until it happens to us.

I had to accept and learn to live with the limitations of my new life. At first, disappointment pooled inside of me like poison. Nothing I could do was good enough in my eyes. I wanted to do more. I expected myself to do more. I found myself floundering in a new reality where I felt like I was constantly failing. But I had to gain a new perspective when setbacks occurred and stop feeling like individual moments were the be-all, end-all. I needed to become less attached to a prescribed way of living.

I had to let my old self go. I had to mourn the person who was staring back at me in the mirror every day and essentially bury her. I kept comparing myself to who I used to be and that’s not who I am anymore.

I still grieve the old me. I miss the badass I used to be. I miss being accountable to my career and work ethic. I grieve my old self whenever I am feeling defeated, especially when I am reminded that a simple task requires a lot of modification to do. Basic things that people take for granted. Like climbing stairs. Tying shoes. Standing long enough to take a shower. Opening the mail. Buying produce at a market. Licking an envelope to seal it.

There will be days when life feels awful. You will feel pain, loneliness, and fear that can be heartbreaking. Maybe you cry to yourself, “This isn’t the life I chose.” Perhaps you feel like “I don’t deserve this” or “This is so unfair.” You aren’t broken for thinking this way. These feelings are not reflections of who you are, nor are they any indication of what your future looks like. Our feelings are not permanent residents, but merely temporary visitors who come and go.

The tediousness of my new life wears me down to the core sometimes. Some days I still grieve the loss of the life that I expected to live. When these feelings visit me, I acknowledge the pain. I lower my expectations of productivity. I give myself permission to rest while I process my thoughts and feelings. I tell myself it’s ok to fall down. Then I get back up, dust myself off, and move on.

2 thoughts on “Expectations Aren’t Guarantees

  1. Beautiful thoughts, Amy. I felt it when you said you had to let your old self go. Not easy but it was the way to go. I cannot imagine what it is like to have such a life-altering condition. I can only hope that you continue to make the most of your days and find more reasons to be happy. Cheering for you always.

    Liked by 1 person

    1. Thank you! Every day I put one foot in front of the other to keep pushing forward. It’s true some days are harder than others but I try to find joy and happiness in what I am able to do. I hold on to a lot of hope that one day I will be well enough to travel again!

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