Hope could be Toxic

Hope is an imperative if you live in Ukraine now. Hope is an imperative for our democracy. Hope that it will get better is an imperative for that tormented kid in the school.

However, in some case hope could be toxic. Hope leads to expectations. Expectation could lead to disappointment and sense of loss, again and again. It is actually cruel to give somebody bedridden with ALS a hope to be able to walk again, at least at this point of time when no definitive cure is known.

My friend, Maria, had been losing her functionality every day. Every morning she woke up to find she couldn’t do what she had been able to do the day before. She knew she would not walk again, but sometimes she just desperately grasped a flicker of hope and dreamed that she could dance again. She wore her favorite pair of shoes when in a wheelchair for rare occasion to get outside for fresh air. I didn’t have any words to console her at that time. Any suggestions of hope that it would get better were cruel even when she felt a little better than the day before.

Then I was diagnosed with Meniere’s Disease. I’m grateful that it was not ALS, but Meniere’s is a bitch from hell. Because of sudden and unpredictable debilitating violent attacks, which render the afflicted totally incapacitated for hours sometimes days, Meniere’s suffers loose their functionality. Three years ago, I started have violent attacks. The life I expected to have was no more because I couldn’t do what I had been able to do. I sought for “cures” one after another. Every time I tried something, the violent attacks seemed to subside. And I had a hope. Then Boom. Another attack and I found myself lying on a bathroom floor violently vomiting. I had to cancel my plans and I was afraid to leave home. After a year of turmoil, I found a trigger, or so I thought, and I was in remission. I thought I was cured!

After two years, it came back. The moment it hit me, I knew I should change my mindset. No expectation, just live now. Regardless whatever happens tomorrow, I am living with this condition now and this is my state of being. It is the only reality. It doesn’t mean I don’t make any effort to control Meniere’s disease. I’ve been working much harder and am much more focused to change my life style which might have caused Meniere’s Disease. But I’m mindful not to expect anything. Expectation is about something in the future, which might or might not exist. I don’t want to be disappointed just because I lose what I might not have anyway.

I have been feeling much better this week with less frequent attacks and less severity, but I don’t expect I’ll be better tomorrow and will be able to travel in May. I don’t know how I will feel tomorrow. Yes, I am human and every morning upon waking up, I hope and hope my Meninere’s disease miraculously disappears. Then the tell-tale sign of tinnitus or vertigo comes back to tell me otherwise.

So don’t tell me it will get better. You don’t know and I don’t know. If you can’t tolerate witnessing my suffering, just hold your discomfort and say “I’m sorry. It must suck to have that condition.”

If I feel good, I enjoy the day. I live one day at a time. And basically it is how everyone should live. One day at a time.

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