12.27.17 Selfish

We’ve covered a lot of topics on this little blog we share together and I am forever in debt for your love, support, and prayers. Receiving my ALS diagnosis almost 3 years ago was life changing in ways we could have never anticipated: my reading preferences are different now that death is promised sooner rather than later, my research and curiosity drifts to topics I never felt important enough to acknowledge, and my days and nights are filled with realities that seem too harsh to wish on your worst enemy. Believe me when I tell you that there’s perks to this new life: princess parking, fun publicity opportunities, and a full time job of snuggles with a sweet puppy and fat cat.

I’ve always been a greater good person, what benefits the majority is preferred to personal gain, so receiving a terminal diagnosis wasn’t the end all, be all because no one is promised to get out alive, right? I’ve also always leaned more towards the optimism, looking for the silver lining, and appreciated naivety in all aspects of life. So having y’all to confirm my preference towards good rather than evil is what keeps my sanity at a manageable level.

What hurts me the most with this disease is not the loss of basic function, or the shortened life expectancy, or any other havoc ALS is wrecking on my body. My heartache is 100% this:

“This [ALS] can actually affect a patient’s ability to live independently and has a major impact on friends and family and their lives,” explained the chair of the Department of Neurology, Frances E. Jensen.

has major impact on friends and family and their lives, that’s the part that wakes me up at night in a panic. I can handle the destruction of my life, but Kenneth didn’t ask for this, Peyton didn’t ask for this, and no one else did either.

I hate ALS. For a million, trillion, gazillion reasons I hate ALS, with the number one reason being the impact of my incapacitated body on those around me. This is beyond the discussion of fairness, we know life isn’t fair. This is far beyond the boundaries of reasonable.

So is it selfish that I want to keep this disease all to myself? Not to share it’s destruction with those I love most. To keep it all confined for myself. Just this once, can I be 100% selfish? I am so, so, sorry.

5 thoughts on “12.27.17 Selfish

  1. You are brave, you are truly Strong and thank you for sharing your thoughts, wisdom and life with complete strangers. I lost my Mom to ALS 21 years ago and witnessed the destruction of this horrible disease. God Bless you and your family and thank you again for sharing.


  2. another awesome blog my friend. That is the crux of the pain of this disease. Harder for family and friends than patients, but that hurts to see. love you girl – you have achieved awesomeness at a young age – sadly but still awesome.


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