OUR JOURNEYS

Patient story

Olga de Leon

Now that I have this incurable condition, I've never been so alone. Nobody is here when I'm in need. Do I have to deal with this on my own? Just left out to die, for the illness to feed on. My friends and family tell me they will always be here for me, my son and his family are, but I still feel alone.

I stay alone with my own thoughts. Beasts of courage, bravery, and strength, all set out to end my life. Closest to my heart & lungs, I receive reassurance. But I strive for the life I used to know. Those who are closest are yet my worst enemy; those who are farthest are simply to comply with the demanding. Even though I’m at death’s door, I feel no real sympathy. Nobody seems to care if I should fall.

Yes I look normal, except for my O2 tube. Do I not have any true friends anymore? The beast is yet to call. Yet I'm always extremely tired, exhausted and in daily pain at times with severe chest pains. I keep to myself, for it seems that I might be mocked, or some may think all I want is attention—which is the furthest from the truth.

I sit here alone, even on holidays, with a lot to think about, yet unable to do. Most physicians don’t want to treat me, as it involves both heart and lungs. So, I sit here, and with my thoughts of facing my demise, I am not ready for the end. Can you ever really be prepared to leave this pitiful life? Will people notice or care? All I can do is pretend—by telling myself that simple little lie. I know that I am surrounded by loved ones, but why are they distant? It makes me feel alone.

Death is forever, not a simple trend. The ball is coming, and I'm in the hitting zone. I've been a survivor of many things throughout life. Please, live the life I cannot. I cannot go on all alone without seeing my beautiful granddaughters grown up, marry, and have their own kids. My mind says "Save me before my final release, Help me destroy your worst creation". Due to my condition, I'm confined in my room and alone once again.

I'll fight with all my will though been informed I'm in my late stages.

♥ ♥ ♥ hearts for my 3 beautiful boys.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.