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Really Living with ALS

Posted by Trece Porrata on Oct 30, 2018 9:29:52 AM
 
To live is the rarest thing in the world.  Most people just exist.--Oscar Wilde 
 
choosing to live with ALS

The date will never escape me, October 21, 2014. I am now just past the 4 year ‘anniversary’ of my diagnosis. According to statistics, I should be dead, or close to it by now.

You see, that dreadful day in October started off quite normally. Hubby off to work, drop my then 4 year old little blessing Rocco off at preschool, and then head to Dallas to yet another doctor I had previously seen two times for tests. I already had the same EMG tests with other physicians with a ‘normal’ outcome. So how was I to think this visit would be any different? Oh, how wrong I was.The look on my doctor's face said it all. I vividly remember every detail.

He recommended I return with my husband before telling me the news. He did not want me to hear the news alone. Well, that was clearly the wrong thing to say because now I really wanted to know! I remember telling him, "I can handle it." He turned around to look at something other than me which I know now was to gain his composer. He turned back around with a tear in his eye he said, "I am sorry to tell you...you have ALS."

how does it feel to be diagnosed with ALS

Silence, as my thoughts raced. Huh?!? I’m sure I looked like a deer in headlights. I knew of ALS from the publicity of the Ice Bucket Challenge just 2 months before in August. Before that, like many others I had never heard of it. I remember feeling like the doctor had stood up and kicked me in the gut. Of course he hadn’t! But he might as well have. From that moment on, my life got real. "Mrs. Porrata, you need to get your affairs in order. You have 2-5 years to live." He explained the disease affects everyone differently. But most won’t live  5 years past the diagnosis, because there is NO treatment and NO cure. All I could think of at that very moment was my husband and precious son, who medically I was told I would never have, but God had other plans for me. I would never in a million years expect to be told that I would most likely die before he went into 1st grade. My mind was racing and I kept saying to myself, "this isn't fair." At that point, whatever the doctor said, sounded like the Charlie Brown teacher.

I wasn’t even out of the door, immediately called my husband and told him the news, which I dreaded doing. How would he handle this? My next call was to my mom, who had just moved out of state two months before. I couldn’t find the words to say other than, "Mom, I’m going to die, and most likely sooner rather than later." I remember her writing down all of the medical terms I was throwing at her, and her looking them up on the computer, all while we both cried hysterically.

After making the two worst calls I’ve ever made, I drove home from Dallas in complete disbelief and silence. It wouldn’t be long before I had to return to pick up my little miracle. I pulled over and let it all out. I screamed and cried. As the shock began to wear off, the anger took its place. The reality of everything just thrown at me hit me all at once, and I felt pure pain. I screamed and yelled, pounding on the steering wheel. I felt betrayed by God, and just kept asking him, 'Why?! WHY?! WHY ME GOD?!" At that very moment, I felt so let down by the One who I depended on the most, GOD. I remember over and over talking to Him, and I finally heard Him.

Trece, this is not what you are made of. This is not like you to surrender to anything and just give up. Just because the doctor said your are going to die, doesn’t mean you have to accept it as your life being over. You have a decision to make. Let it consume you and give up on life or be the mother and wife you were meant to be and fight to live.

I had two options: be mad at God about my situation or really cling to my faith, knowing God was going to carry me through the dark times. I chose to pick myself up and lean on the Lord. I felt a sense of peace wash over me like I have never felt before. From that day forward, I didn’t have the overwhelming sense of death coming. I had an overwhelming sense of living. Really living. ALS taught me to really live.

  • I choose to be faithful. I rediscovered my relationship with the Lord. I had always been a woman of faith, but my faith is deeper. Faith is what I needed in order to live the rest of my time on this earth with purpose.
  • I choose gratitude. I am mindful of setting an example for my son of living with joy and appreciation when faced with adversity.
  • I cherish every moment. I live every day to the best of my ability with patience and love knowing, despite my diagnosis, our family is extremely blessed.
what happened when i was diagnosed with ALS
 
The memories I make with my family can carry long after I am gone. No one is  guaranteed more than the present moment with loved ones. We all have a choice to make whether to really live.

Psalm 56:3-4, “When I am afraid, I put my trust in you. In God, whose word I praise — in God I trust and am not afraid.” (NIV)

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Topics: Faith