When I Was Paralyzed, Envisioning My Future Helped Me Hold On to Hope

When I Was Paralyzed, Envisioning My Future Helped Me Hold On to Hope
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This column is a message to all of the patients currently undergoing an extended hospital stay. I know it is easy for people to share encouraging words when they aren’t the ones in a difficult situation. But let me just say that I know what you are going through.

Unfortunately, when we are seriously sick, we often don’t expect a positive outcome. I had two warrior friends, Elizabeth and Maria, who prayed for me. They encouraged people who were scared not to visit me, as they didn’t want me to see terror on people’s faces. Negative feelings can affect us and cause us to lose hope.

My advice is to hold on to the positive people. Always maintain hope, even when it is as scarce as a ray of light on a cold, snowy day in a Massachusetts winter. I always kept my hope and my faith in Jesus, even on the darkest day.

I remember my worst stay at the hospital for two reasons.

First, my neuromyelitis optica (NMO) attack paralyzed me from my neck down. I don’t think anyone would forget being paralyzed. It is a terrifying experience.

Second, I learned to hold on to hope. I don’t believe that everybody learns how to be hopeful. I don’t blame them. Sometimes the circumstances are so hard that it is difficult to believe that everything will turn out OK. However, in some cases, that choice depends on our attitude. We choose which road to take.

Our attitude can change everything. When we let fear control us, we become immobilized. The battle to conquer our attitude starts with controlling negative thoughts. When we do not stop them, these thoughts take root in our heart. A fearful state of mind follows. As a result, we believe that we can’t move forward.

One night during my long hospital stay, when I thought nothing could be worse, the head-of-bed elevation broke. The bed fell flat. This position is uncomfortable, and it carries a high risk of aspiration and ventilator-associated pneumonia. I sarcastically muttered, “This is fantastic.”

I couldn’t reach the bed controller because I couldn’t move my hands. And I couldn’t call the nurse for the same reason. No family members were around to help me, either. I didn’t even have any family in the United States except my husband, whom I had asked to stop visiting me every day after work, because he seemed exhausted. I didn’t want him to grow weary of being my caregiver for three long months.

When I was lying in that bed in a silent room, with my head flat and my body immobilized, I started to cry. I told myself that I was human, and it was OK to cry. I stared at the ceiling, and then at the walls, thinking a string of negative thoughts.

I realized I needed to stop those thoughts, and I told myself I would be able to walk again. I told myself God had a plan for me. I started to envision myself finishing my degree, working, raising awareness for NMO, and helping my family. I started feeling better instantly.

I will not tell you that I achieved all of those things right away like magic. Hope and faith mean believing in positive events that have yet to happen. My recovery was not smooth sailing, but in the end, I did everything I envisioned when I was in the hospital. Against all odds, and in spite of what the doctors said, I am walking today. For this reason, I encourage you not to lose hope.

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Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.

Mileidys is a certified medical interpreter for people who speak Spanish. She is from Cuba and has lived in the U.S. for many years now — first in Florida and now in Massachusetts. Mileidys wants to encourage fellow patients living with NMO to be unafraid while hopefully shining a ray of sunshine on them. Mileidys does not say that the NMO road is easy, but that there are effective ways to cope with NMO, including staying informed and positive while keeping the faith.
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Mileidys is a certified medical interpreter for people who speak Spanish. She is from Cuba and has lived in the U.S. for many years now — first in Florida and now in Massachusetts. Mileidys wants to encourage fellow patients living with NMO to be unafraid while hopefully shining a ray of sunshine on them. Mileidys does not say that the NMO road is easy, but that there are effective ways to cope with NMO, including staying informed and positive while keeping the faith.
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