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What Does it Feel Like to Have ALS?

Posted by Trece Porrata on Mar 1, 2019 12:40:43 PM

living with ALS

My name is Trece.  I am a friend, a daughter, a wife, and a mother.  I hope you take the time to read this. I just want to share some thoughts of how a loved one with ALS might feel.

People with ALS are supposed to be heroic.
We fight a disease that terrifies everyone.
We are strong because while our bodies weaken and lose all function, our mind must overcome.
We are brave because we know there is no treatment, but choose life despite little hope.
The reality of life with ALS is very different from the inspiring people with ALS we see on TV and in stories.
The truth is that if someone you love has ALS, they probably won’t be completely open about what they’re going through because they’re trying so hard to be strong for you.

However, if they could be truly honest and vulnerable, they would tell you:

  1. Don’t wait on me to contact you if I need anything. Please reach out to me every once in a while and set up a date and time to come over. I know you told me to connect if I ever needed anything, but it’s weird asking others to spend time with me or help me with stuff I used to be able to do on my own. It makes me feel weak and needy, and I’m also afraid you might say “no.”
  2. Let me experience real emotions. Even though life with ALS can sometimes influence my outlook, I still have normal moods and feeling response to life events. If I’m angry or upset, accept that something made me mad and don’t write it off as the disease. I need to experience and express real emotions and not have them minimized or brushed off.
  3. Ask me “what’s up” rather than “how do you feel.” Let’s talk about life and what’s been happening rather than focusing on my illness.
  4. Forgive me. There will be times when the illness makes me “not myself.” I may be impatient, abrupt or hurtful. None of this is deliberate. Please don’t take it personally, and please forgive me.
  5. Just listen. I’m doing my very best to be brave and strong, but I have moments when I need to fall apart. Just listen and don’t offer solutions. A good cry releases a lot of stress and pressure for me.
  6. Take pictures of us. I may fuss about a photo, but a snapshot of us can help get me through tough times. A photo is a reminder that someone thinks I’m important and worth remembering. Don’t let me say “I don’t want you to remember me like this”. This is me, who I am RIGHT NOW. Embrace the now with me.
  7. I need a little time alone. A few points ago I was talking about how much I need to spend time with you, and now I’m telling you to go away. I love you, but sometimes I need a little solitude. It gives me the chance to take off the brave face I’ve been wearing too long, and the silence can be soothing.
  8. My family needs friends. Parenting is hard enough when your body is healthy; it becomes even more challenging when you’re managing an ALS diagnosis with the day-to-day needs of your family. Children, who aren’t mature enough to understand what I’m going through, still need to go to school, do homework, play sports, and hang out with friends. Car-pooling and play dates are sanity-savers for me. Take my kid, or drop yours off. Please.
    My spouse could also benefit from a little time with friends. Grab lunch or watch a game together. I take comfort in knowing you care about the people I love.
  9. Take nothing for granted. Enjoy the life you have right now. Take time to jump in puddles, hug the kids, and feel the wind on your face. Marvel at this amazing world.
how someone with ALS feels

While I may not be thankful for my ALS, I’ve learned a lot about life and who I am. And if no treatments are found for me, please know that I will always be grateful for having lived my life with my family and friends. I hope they feel the same about me.

Choosing a Christian School in Dallas/Fort Worth

Topics: Health