As wonderful as this past year has been to me, my world has taken many dark turns over 2015–things that I have not really shared with anyone outside of family and a few close friends.
In April of 2015 my dad was diagnosed with ALS (amyotrophic lateral sclerosis). ALS is a motor neuron disease that causes a person’s motor neurons to over-fire to the point where the motor neurons damage themselves and eventually scar and disintegrate, leaving the person with ALS unable to move all of their voluntary muscles.
It starts slowly, usually on one side of the body, but gradually and suddenly gathers speed as it progresses. It affects every voluntary muscle in the body—no exceptions—including a person’s ability to breathe. Because of the respiratory failure that is inevitably precipitated by the loss of motor neuron function, ALS is always fatal in a matter of time. Prognosis is 2 to 5 years, although some people, like Stephen Hawking for example, can live much longer, though functionality is limited and such cases are rare.
I tell you about this horrible disease my family and I are facing down not to scare you or ask for pity, though any and all support is greatly appreciated. I tell you simply because I want you to know what’s going on right now. Not talking about, not saying anything, and leaving the majority of my friends in the dark as to what is happening in my family felt like right thing to do at first. As time progressed, however, my dad’s ALS has also pressed on my heart and encouraged me to share, despite the full reasoning behind my sharing being less than clear.
Needless to say, what I thought was significant before my dad’s diagnosis is not. What I thought would end my world a few years ago is nothing compared to losing what I have now realized is my world—my family, my loved ones, my dad. The fact that I was able to enjoy one of the happiest and most successful years of my life to date during this tumultuous news of my dad’s terminal illness is not due to my resilient spirit. I wish I could say that it was, but that would be a lie. If I am honest, it’s due to finally opening up enough to find true, supportive friends, finding out more about what I love to do, and being medicated for my mental illness, and I’m not ashamed of that. I actually feel as though I’m able to be the person I want to be, as though I have a say in how I feel and how I behave, and most importantly, that I have the ability to be and remain strong in a time where everyone in my family is struggling so hard to keep their heads above water, at a time where my dad needs helps to eat, use the restroom, and wiggle his toes.
What I want people to know from reading this post is that it is absolutely okay to be vulnerable. The people who love you, and yes, there are many people out there who love you more than you can imagine, are not burdened by your needs. In care-taking for my dad, I have realized what a joy it can be to care for someone who you love more than anything. It’s painful, yes, but more than painful, it feels like I’m helping do what I can—because I cannot give my dad back his motor neuron function. I can, however, help him eat his dinner. Likewise, my family is not burdened by me any health needs that I have (and believe me, I do have them, though my health concerns are nothing compared to ALS).
It’s okay to be sad if your dad has ALS or some other horrific illness, or even if you don’t think you have a reason. And it’s okay to ask for help, even when you think you don’t need it or deserve it. Whatever it is, it’s all okay, and you will be okay. I do admit that I’m still working on changing my mindset to allow myself to believe that I will be okay no matter what, as I feel like my foundation is slipping out from underneath me. More than that, I’m losing my dad, and that really hurts. Processing my dad’s ALS has helped me a lot with managing my constant fear of doom, as I can’t really imagine anything worse happening, even to myself.
I don’t know about you, but I’m quite pleased to be alive in an age where there are clinical trials for new ways of treating ALS, (one of which my dad is a part of!), and where the internet exists and a wide range of people can have access to one other’s thoughts, experiences, ideas, creativity, and more. Thus, I’m happy to share all of this with you in hope of connecting with you through sharing the parts of my life that I greedily keep to myself, in the dark, where they grow bigger and bigger by the minute and threaten the comfort of my being. More importantly, I hope this helps someone who may also be struggling with these issues, or different issues of a similar nature.
Many people think that we suffer to know the good in the world, or that we suffer because of sin or a broken world. I’m not here to suggest why we suffer, but only to remark at humanity’s ability to create webs of empathy from our suffering so that we are able to experience more love through something as horrific as ALS than we would have experienced without it. Though I’d rather ALS be damned most of the time, it is eye-opening to see how truly wonderful people can be when they open their hearts to others during difficult times.
Whether or not you are currently struggling with anything in your life, you have my love and confidence that you will not only live to see more of those magical moments you thought were gone, but that you will find that in allowing yourself to feel your struggles, share them, and grow from them, that you will indeed have a richer life than you would have had things gone the way you had planned. Maybe it is a broken world out there. I don’t know why human beings have such a rough go of it, but sometimes we do and it’s good to be open about such struggles instead of keeping them all to ourselves.
My dad may have ALS, but he’s still fighting and we’re all fighting with him.
Best wishes,
-Anna-
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