I haven’t really discussed much of what I went through last summer/fall in my blog, although, I did briefly touch upon it in my previous post. It was an extremely tough period of time for me, and I think that’s why I don’t necessarily talk about it too often. At the same time, I learned a lot about myself and life in general because of it which is why I’m here to share my story with you.

Everything all happened so fast. One night I was vomiting due to my acid reflux, and I vomited so much that I aspirated, which then triggered pneumonia. This occurred on a Saturday, seven days before my cousin’s wedding. Because I was going to be a bridesmaid in this wedding, I refused to go to the hospital since I knew that’d mean missing the wedding. I couldn’t do that to my cousin…I’d never forgive myself…so, my parents proceeded to go through with an intense, at-home treatment plan which seemed to help (by the way, I’ve been in the hospital so many times that my parents could definitely be certified RNs). Two days before the wedding, the pneumonia was thankfully out of my system, but, I suddenly lost my voice completely out of the blue. Thinking it was just a freak occurrence, I went about my daily routine and tried to pretend like I was fine.

As you might assume, I wasn’t fine. At all. The wedding came and, still, I had no voice. However, in addition to losing my voice, I started experiencing extreme difficulty with swallowing foods and liquids especially. Despite this major problem, I continued to look past it and focused on having the time of my life at the wedding. As the hours passed, I slowly began to realize the unwanted truth and had a strong, gut feeling I’d be ending the best night ever in a hospital bed. Guess what? I was right.

I spent five days in the hospital and the doctors couldn’t seem to figure out what was wrong. They sent me for multiple tests and the only conclusion they came up with was that this was all due to my disease. It was the most discouraging news I had received in a while. How could that possibly be? How could everything just change like that overnight? It kind of made sense though. With Spinal Muscular Atrophy, your muscles atrophy, so, maybe that’s what happened to my throat muscles.

It was all too much for me to take in, and I wasn’t willing to accept what the doctors were saying. Something else wasn’t right. For the next month, I continued to take tests that were inconclusive and my prognosis didn’t improve in the least bit. Most of all, I was beginning to lose faith in myself to move forward. I’ve been through many trials and tribulations in my lifetime, and I’ve always come out strong. However, for some reason, this was taking the best of me. I was terrified. I had lost a significant amount of weight, choked every time I drank, and struggled to say just a few words. I was slowly losing the will to fight. I just wanted my old life back.

After about six weeks had passed, a throat specialist up in Boston, Massachusetts finally discovered I had a paralyzed vocal cord and needed surgery. Surgery is a very dangerous procedure for people with SMA because the anesthesia can compromise your breathing and cause respiratory infections. As nervous as I was, I agreed to undergo the procedure in hopes of getting back to normal. Even though the surgery was meant to correct the problem, it was only for temporarily. It was a risk I had to take.

The time before the surgery (which was about a month and a half) seemed like it lasted for centuries. I was growing tired and weak. I tried to go about my days the best I could but I was letting my situation get the best of me, something I had never done before. I missed my voice. I was slowly forgetting what it was like to sing obnoxiously in the car, to hold a conversation, to swallow. My ability to persevere was becoming a thing of the past, and I was quickly losing hope.

The surgery came and went and I did exceptionally well. Although it took me a few weeks to get back on track, I was able to speak and swallow again. Hallelujah! I was beginning to feel stronger, focus more on my classes, and form a better nutrition plan. Everything was falling into place, and I was beginning to see the light at the end of the tunnel. Finally, my old self had returned.

It’s strange to think that these last several months have completely changed my life. I’m still haunted by everything that has happened, and every day I wake up hoping I didn’t have some freak relapse in the middle of the night. I understand that this is highly unlikely, but I can’t seem to shake what I went through. This whole ordeal has reminded me to not take all that I have for granted. It seems simple, but when you lose a big portion of your life, you learn to gain a greater appreciation for what you still have. A part of me would love to forget about everything that has occurred; however, I realize it’s never a good idea to run from your problems. Sometimes this world can be a little ugly, but if you always have faith in knowing things will get better, it can be absolutely beautiful.

Author: Alyssa

Chronicling my journey while teaching the world that I have SMA, but it will NEVER have me. Life's what you make it, dare to make it a remarkable one✨

5 thoughts on “LAST SUMMER”

  1. ADFI am so sad to hear about your struggles, but know that you are such an inspiration. Keep up the blogging–you are an incredible writer (and person!!) So lucky to know you 🙂

  2. You will always be my guardian angel and the best role model for an old lady, when having a tough day I think of you and know I have to try harder, I love you, I will always try to be there to help you

  3. I admire you so much. You are the bravest person I know. I was so worried this summer, and I’m so glad everything turned out ok. I didn’t want to leave until I knew you were ok. Not that I could do anything to help you. I just wanted to be around. Love you.

  4. Alyssa,
    I cannot tell you how much I admire your strength and perseverance. You and your family are very special and I commend you for sharing your very personal story. ~ Tracey

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