Sunday, May 12, 2013

Dying

I am 39 years old. I just graduated from college last year and got remarried to a wonderful man. I have three sweet children who are still somewhat on the young side. And I am dying. I still can't believe it as I type those words. I am dying.

I am dying.

Maybe if I keep typing it, it will sink in. Even though I can no longer walk on my own, I can't believe it. Even though my left arm is getting weaker, and I only have one truly good limb left (for now), I can't believe it. Even though I have to be very cautious when I eat or drink so that I don't choke, I can't believe it.

I am dying.

With my version of ALS, it's going to be a slow death. A slow death that will take away my ability to move all of my voluntary muscles over time. It's both a blessing and a curse: I will get to live longer and be here for my family, but I'll also suffer longer. I'll be a burden to them longer. I'll grieve them longer. The very worst part? I will retain all of my senses and I will know everything that is happening to me, but I will eventually be completely unable to interact with anyone. Most likely, my death will come when I can no longer move my chest muscles to breathe. In addition to being 100% fatal, this disease is very cruel.

I am dying.

I don't think as clearly as I used to. Even writing a blog post takes time and I have to keep going back to make corrections. I often struggle to complete my thoughts and sentences. I am forgetful, and I used to remember everything. I lose things, and I used to be the most organized person around. Used to be. That's me. I used to be a lot of things. Now, I'm dying.

I am dying.

I'm also exhausted. It has reached a point where a walker almost isn't enough anymore. I get exhausted going 10 feet. The ALS Association of Greater Philadelphia is sending me a wheelchair to use for now, and I'm so thankful. Showering is exhausting. Sitting up is exhausting. Standing is exhausting. And, I gotta tell you, complaining is exhausting. People ask me all the time how I'm doing. What should I say? Should I tell them that I'm doing ok today because I don't want to complain? Should I say, "Well, I'm downright exhausted right now and terrified of dying while my kids are young. How are you today?" I'm grateful when people ask how I am, but I truly don't know how to answer that question. That's exhausting, too...emotionally. I wish the ALS Association had something for that.

It's not all bad, though. I'm seeing things differently now. Much differently. Last week, I saw a top neurologist in our area who confirmed my diagnosis (he is the third neurologist to confirm it), and when I left his office it began to rain. While Awesome Mike went to get the car, I was supposed to wait in the lobby, but it was stifling inside because it was muggy out and the office hadn't turned on their air conditioning yet. I felt like I needed more air, so I went outside. It began to rain harder. I stood there and let the rain beat down on me. I watched people walk by with their umbrellas. I saw cars pass by with their windshield wipers waving wildly. I put my hand out to catch the rain. I closed my eyes and breathed in the scent of the rainfall. I realized at that moment that I was the only one there who cared about the rain, who was enjoying it, who was thankful for one more day of how it affected my senses and made me feel alive. So, it makes me wonder: Who is more alive? Me or you?

I have moments like this all of the time now. I notice things everywhere I go. I linger longer with people I love. I don't let as many things bother me as I used to. I think more before I speak. I pray more. I'm sure I love more.

I am dying. But I am living more.

Everyone has heard a song or a phrase about living life to its fullest or living like you're dying, but until you're really dying, I don't think it's possible to fully grasp what it means. I hope I'm wrong, though. I hope you can take a good look at your life right now and realize how much time you're wasting, how much hate you're spreading, how much love you're withholding. Think about it...and make better use of the time you have left.

I am dying, but I'm full of life now. More life than I had before I was dying. I'm filling many of my moments creating happy memories with people I love. What about you? Are you living like you're dying, or are you just wasting your own precious moments? If you are being wasteful, please don't do that any longer.

Live. I mean, really live.

6 comments:

  1. Most of us don't know what the future has in store for us. We all need to have more moments and be more appreciative of those moments. Keep us posted as you are able. Love and prayers-Tracy

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    1. You're right. We should all appreciate every moment we have. Thanks, Tracy.

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  2. As a respiratory therapist, I have cared for several ALS patients and I agree that it is the cruelest disease. My heart aches for you and your precious family. You have an uncommon awareness and zest for life plus the ability to beautifully express that in words. I know you never set out to be an inspiration but there you are! I have no idea how I even found your blog - must have been meant to happen. You are in my thoughts. Sending lots of love.

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    1. Thank you, Gloria. I appreciate your kind words and I'm glad you found me. I haven't posted in a while, as you can see, and I may not post again. I'm not sure. If I feel led to do so, I will. I just recently have been able to accept my diagnosis and the dark cloud over me has lifted, so I may begin to write again. I'm thankful to hear that people find what I've written inspiring. I want to do as much good for people as I can with the time I have left. Thank you for writing to me. Lots of love to you, too.

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  3. Hi Jennifer, Thanks for visiting my blog today, that was how I found your site here. We have a family member who is in the early stages of ALS. I'm sorry you're going through this and will keep you in my prayers. I love the paragraph where you talked about the rain. It was beautifully said. ~ Love Abby

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    1. Hi, Abby. Your blog and Facebook page are always a blessing to me. I enjoy everything you post and I'm thankful for what you do. Thanks for finding me and for commenting. I really appreciate it. Much love to you.

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