alone in the ocean

alone in the ocean

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alone in the ocean

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August 21, 2010 in Uncategorized

As he began to open his eyes slowly, he heard the sound of water splashing against something. He was waking from a deep sleep. When his eyes were fully opened, he surveyed his surroundings. As far as he could see all around him was water. He realized with a horror that he was in the middle of the ocean. He did not know why he was there. He felt all alone. There was no companionship other than the birds that flew by occasionally- but they could not understand his plight. They could not relate to his situation. He was an alien in their world. If he was not careful, he could leave his foot or a hand hanging off the little raft he was on and it could be bitten by a shark or some other curious creature. Life would be a chore for him. As time passed, he wondered if he would survive. His mind played tricks on him and tempted him to think everything was normal and that he did not have to be confined to the raft. One time he stepped off the raft and into the water. He thought he could just walk away. He quickly returned to the raft and did what he had to do to say safe. During the days storms came and life could be rough. Eventually he took the oars of the raft and began to paddle in one direction led by the sun- away from it in the morning, toward it in the evening. After persistence he finally saw land. He kept rowing until he was safe on shore. ---------- This short essay is an allegory about life with PKU from my perspective. The isolation, the lack of understanding I have faced, the temptations to ignore PKU and forego the diet. Maybe some of those with PKU can relate in some ways. But when we decide to face the diet and beat the effects of PKU it is like finally finding land after being isolated in the middle of an ocean throughout our lives. Thankfully we have doctors and dieticians who understand and family and friends who can be of support. Fortunately we also have each other. I am among the first generation of treated PKUers. I am so happy that research has made things even better for the up and coming generations. I hope I can be supportive to some of you so you do not feel like you are isolated- "alone in the ocean." Here's to victory over PKU.

7 Reviews of alone in the ocean

  1. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Wow, what an essay! I am sorry you felt this way growing up :( How are things going with returning to diet? Have you felt a difference in how you’ve been feeling?

  2. Registered: May 27, 2009

    Posts: 0

    , Florida

    Thanks Katie. Things are tricky with the diet, not as strict as I expected yet, but that is to set up a Kuvan trial. It’s difficult for me to keep the higher protein levels with my expectations. It’s odd, but that’s normal to me! ;) Right now I feel the same, but my levels are still high.

  3. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Have you started Kuvan yet? And are you still trying to figure out if it works for you? You should not be changing the normal amount of PHE intake when you first start Kuvan. Keeping your typical diet during the time of Kuvan trial is important to see if you are a true responder. Does that make sense?

  4. Registered: May 27, 2009

    Posts: 0

    , Florida

    I am going to see the specialist tomorrow and will hopefully begin Kuvan soon. I am following my wonderful dietician’s directions with the Phe amount, I just expected much less and it’s been tricky to get to the level I need to be at to prepare for the Kuvan trial. I totally understand the higher level will make it clear if I am responding to Kuvan, fortunately my dietician explains things very clearly.

    Thanks Katie! You are a blessing.

  5. Registered: Sep 20, 2007

    Posts: 0

    Woodbridge, New Jersey

    Wow pregador! I sure can identify with your analogy. I too am alone in the ocean, a first generation PKU-er (born before testing became mandatory). I can’t afford to get treatment so I have to suffer in silence. I don’t have a support system anymore. My sibling-including an older PKU brother-don’t understand or refuse to. My parents never cared and my husband recently told me he’s tired of hearing me talk about how much I suffer.

  6. Registered: May 27, 2009

    Posts: 0

    , Florida

    You definitely have it more difficult than I do, Pattis1313. I appreciate your circumstances, knowing it could have been similar for me. Use PKU.com as a support system. I have met wonderful people through this already- even if it is online. There may be ways of getting help. Let people within the PKU “community” know a bit about your situation and see if they know of places to get help in your area. That was a help to me. Don’t give up or let situations overwhelm you.

  7. Registered: Feb 8, 2010

    Posts: 0

    Maysville, Kentucky

    This is really good. Maybe when my son can read ( in a few years!) this will be something he needs to read. I think you are right when you say that there is Victory.

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