My New “Daily Doings”

Dictated on Tuesday May 26, 2015:

Here I am in the middle of my 3rd week-I have not yet adjusted to my new routine of life. I wake up in the morning and struggle to see my breakfast cereal in my room as the first of the morning light hits my eyes, even though I wear dark sunglasses. For the rest of the morning I go through medicines, bathroom calls and PT&OT before lunch around noon. It’s the afternoon that starts to get me. More medicine and bathroom calls and most of the time boredom while I wait for visitors to come. Some days I’ll have lots of unexpected visitors and it makes the time go by very quickly. There are other days with no visitors and the time goes by very slow. I feel like a Jack-in-the-Box and someone is winding it from the outside and I will pop out! There have been many times I’ve been overwhelmed and had break downs, but last I had a Jack-in-the-Box moment where I said I didn’t think it was fair that I was stuck inside when it was a nice evening. I think it was boredom again and my Nook battery died and we didn’t think the DVD charger was here either. A lot of my frustration comes from nothing to do, due to the lack of vision and light settings. I was already done scribbling with permanent markers and I wasn’t ready for bed yet. It was after my “outbursts” one of the nurses took me for a stroll outside. It was a wonderful evening. I was very humbled by the nurse’s care in helping me find something to do.

Even through all my frustrations, there has been some good. I’m getting to know the nurses and aides and I’ve had some fun conversations with them. Physical/Occupational therapy keeps me going as they’re trying to rebuild my strength. Yesterday I hit a milestone and “walked” down the hallway, but I would classify it more as “hobbled” using my walker. Still, it was exciting and left me out of breath. I’m very thankful that I have family close by and visits when they can and my mom visits everyday. I’ve also had lots and friends frequently visit, but what I struggle with is feeling like I’m losing contact with my family and friends that are out of state. I miss the days of old—emails, Facebook, texting—or just writing snail mail letters just to let them know I am thinking of them. Because I can no longer read my Bible, this is where my prayer journal has become like a favorite “book”. I use it so much I now have to sit out at the main lobby at the table because the binding is falling apart. My vision continues to fail and seeing people in my room is difficult. I want to protect these pictures of my family and friends because they are special…I pray for them.

Today, Dad met me as I was coming from PT and on my way to lunch. I was talking to him about my boredom problem and he started talking about using the time sitting as a time to pray, “Dad-that’s literally all I do around here!” I didn’t mean for it to sound like a bad thing, after all we’re to pray without ceasing. I have always been a “go” person and to all of a sudden stop is difficult and where most of my frustration lies. As we (Dad and I) continued to talk Dad said, “It is a lesson I am to learn, to rest in God and trust Him”. Trust is something that everyone writes about on the marker board after one of my emotional breakdowns. I am trying to fully trust that I will get past this sense of boredom and once again see that my life has purpose. Like the times at home, God has brought different songs and verses to mind. But this morning at breakfast alone in my room, I said, “I don’t want to eat Rice Krispies, I want to eat the word of God!” I think that is one thing that in my times of sitting, besides praying, I could use a lot more of this. I am trusting before I go fully blind; I will have the chance to do so. Thank you for your continued prayers for me and my family. Your letters, emails and visits all mean so much. I have more to share, but for now that is all. Love, Mel

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8 Comments

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8 responses to “My New “Daily Doings”

  1. calli

    Can’t wait to be there in 2 weeks sweet friend!!!!!! Love you!!!

  2. Barbara

    You are amazing! You are also showing the way for others with NF2 who are beginning to embark upon this very hard path.

  3. Kim Jenerette

    Melinda … trust … it is an easy word for me to throw around … living in the that I live in (one with empirical senses) it is very easy to say and extremely difficult to live out … your words share just how difficult this is … your life, though, is a shining example of living for Christ …. your beauty is never fading … thank you for sharing your raw emotions and living for Christ … you are a godly example …

    We love you.

    Uncle Kim and Aunt Lisa

    • karen tucker

      Mel,
      Thank you again for being open and sharing just how you’re feeling. I am touched and desiring more and more to be thinking of you and praying for you and your dear family. May God’s grace continue to help you–day by day. Never forget that He loves you so very, very, much!

    • Michelle

      AMEN ❤

  4. Debby

    Melinda,
    Thanks for being so open and honest with your feelings. I don’t know how well I would handle your situation. May has been NF awareness month and I have been putting something on facebook every single day. I am sure my friends are tired of seeing it! My hope and desire is one day there will be a cure for this nasty disorder. I will come to see you soon. Keep praying you will continue to get your strength from our Lord. You are an inspiration to many people. Jesus loves you so much! When you feel so alone cross your arms and squeeze them tight and know that is Jesus hugging you!

  5. Samantha Dibben

    Melinda
    Fantastic news that you walked today or hobbled as you called it.
    After my second NF2 tumor removal I was left with no feeling or movement in my left leg, at all.
    With grit, determination and much physio I am now able to walk, all be it slowly. I am also left with a dropped foot but still managing.
    Being a ‘go’ person you will get many other positive moments with improved mobility, baby steps but it is exciting isn’t?
    Gaining physical strength helps your mental strength and vice versa.
    Your mental strength is amazing, just keep going and smiling

    Samantha

  6. Michelle

    “All of my life, in every season, You are still God. I have reason to live, I have reason to worship.” That is a lyric to a spiritual song I know. Hope it encourages you if/when someone is able to share it with you, Mel. You are a very encouraging sister in Christ to me. I find myself restless at the end of the day and tonight I thought..”I should check Mel’s blog.” Now I am convicted to cherish our God and His Word while remembering it is Jesus Christ alone who gives us the security and significance we need. We can trust Him fully;Praise the LORD; He is good. May His Holy Spirit rest upon you and give you perfect peace.

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