Help Fight ALS
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My mother's name is Lisa Early. She was diagnosed with ALS on February 18th.
I vividly remember the tone in my mother's voice when she called me to tell me she was coming to see me. Something was horribly wrong. It felt like somebody was twisting a knife in my gut as each word trembled through her lips, hardly louder than a whisper. I knew she was afraid, and that made me terrified.
It started with simply not being able to push the lock button on her car key. By thanksgiving the feeling in Lisa's thumb was completely gone. As a family, we urged our mother to seek out the answer from medical professionals. Test after test, Doctor after Doctor, all culminating in that one fateful appointment in February.
My imagination wouldn't stop churning out horrible scenarios. I anxiously waited the three hours for my mom to arrive. My girlfriend, Allison, and I sat down to hear whatever horrible news was coming our way. Was it cancer? A tumor pushing on nerves somewhere? Was a dramatic surgery needed? Unfortunately, my imagination fell short. It was none of those things. It wasn't a coin flip of a surgery, it wasn't a long battle waiting to be fought, the battle was already over. There was no fight to be fought. No hope of getting better tomorrow, or the next day, or the day after that. Just a gradual decline in health until my mother, Lisa, and her lungs finally rest.
We cried. We talked about how unfair the diagnosis was. Nobody deserves such an unjust ending. Not the worst person, especially not my mom. I still relive that day almost everyday of my life. Except when I reimagine that moment, my mom never has ALS. When I reimagine that moment, she always says something different. Something we can have a tangible fight with. One day she has cancer. One day she needs surgery. One day she just has a few bad nerves. My imagination still trying to come up with a reality different from our own. A reality in which there's a chance of fighting back.
ALS is a living nightmare for those diagnosed. Imagine slowly becoming a prisoner trapped in your own failing body. Going to bed knowing that when you wake up you will be less of a person than you were the day before. Watching my mom suffer through this is exhausting. Physically, mentally, emotionally, it's draining. I try to imagine how drained and how much my mom must hurt on a daily basis, but my imagination falls short and can only take my empathy so far. It kills me that I can't wake my mom up from this nightmare, that I can't even fully understand her nightmare.
Yet my mom finds the strength to laugh on a daily basis. She finds the courage to wake up every day. How my mother, Lisa, finds that strength and courage on a daily basis is a beautiful mystery to me. For every person diagnosed with ALS, there is a son, a daughter, a spouse, a brother, or a sister dramatically effected. It's watching a loved one be tortured by an invisible and unjust hand.
ALS, or amyotrophic lateral sclerosis, has no known cure. There isn't even a known cause of ALS. Because ALS is so rare, most people don't even know what the disease is when you tell them. They stare blankly and politely smile, not knowing how horrible the news is that they just received. While I'm thankful that only about 1:100,000 people will develop ALS this year, it hurts to see that knowledge of this disease is so limited.
I am starting this page for our family's own personal ALS expenses. There are ramps, wheelchairs, power wheel chairs, shower chairs, lifts to travel, oxygen masks, and many other medical expenses I can't even think of that come with this diagnosis. Insurance will help, but not as much as one would hope. While this page is being started for our own personal ALS story, all funds remaining in this account after my mother's passing will be donated to ALS research. 100 percent. If you want to help with ALS, but don't want to help me personally, I encourage you to visit alsa.org and donate there. If you would just like to share your own ALS story, advice, or thoughts, please do! Thank you for taking the time to read my story!
I vividly remember the tone in my mother's voice when she called me to tell me she was coming to see me. Something was horribly wrong. It felt like somebody was twisting a knife in my gut as each word trembled through her lips, hardly louder than a whisper. I knew she was afraid, and that made me terrified.
It started with simply not being able to push the lock button on her car key. By thanksgiving the feeling in Lisa's thumb was completely gone. As a family, we urged our mother to seek out the answer from medical professionals. Test after test, Doctor after Doctor, all culminating in that one fateful appointment in February.
My imagination wouldn't stop churning out horrible scenarios. I anxiously waited the three hours for my mom to arrive. My girlfriend, Allison, and I sat down to hear whatever horrible news was coming our way. Was it cancer? A tumor pushing on nerves somewhere? Was a dramatic surgery needed? Unfortunately, my imagination fell short. It was none of those things. It wasn't a coin flip of a surgery, it wasn't a long battle waiting to be fought, the battle was already over. There was no fight to be fought. No hope of getting better tomorrow, or the next day, or the day after that. Just a gradual decline in health until my mother, Lisa, and her lungs finally rest.
We cried. We talked about how unfair the diagnosis was. Nobody deserves such an unjust ending. Not the worst person, especially not my mom. I still relive that day almost everyday of my life. Except when I reimagine that moment, my mom never has ALS. When I reimagine that moment, she always says something different. Something we can have a tangible fight with. One day she has cancer. One day she needs surgery. One day she just has a few bad nerves. My imagination still trying to come up with a reality different from our own. A reality in which there's a chance of fighting back.
ALS is a living nightmare for those diagnosed. Imagine slowly becoming a prisoner trapped in your own failing body. Going to bed knowing that when you wake up you will be less of a person than you were the day before. Watching my mom suffer through this is exhausting. Physically, mentally, emotionally, it's draining. I try to imagine how drained and how much my mom must hurt on a daily basis, but my imagination falls short and can only take my empathy so far. It kills me that I can't wake my mom up from this nightmare, that I can't even fully understand her nightmare.
Yet my mom finds the strength to laugh on a daily basis. She finds the courage to wake up every day. How my mother, Lisa, finds that strength and courage on a daily basis is a beautiful mystery to me. For every person diagnosed with ALS, there is a son, a daughter, a spouse, a brother, or a sister dramatically effected. It's watching a loved one be tortured by an invisible and unjust hand.
ALS, or amyotrophic lateral sclerosis, has no known cure. There isn't even a known cause of ALS. Because ALS is so rare, most people don't even know what the disease is when you tell them. They stare blankly and politely smile, not knowing how horrible the news is that they just received. While I'm thankful that only about 1:100,000 people will develop ALS this year, it hurts to see that knowledge of this disease is so limited.
I am starting this page for our family's own personal ALS expenses. There are ramps, wheelchairs, power wheel chairs, shower chairs, lifts to travel, oxygen masks, and many other medical expenses I can't even think of that come with this diagnosis. Insurance will help, but not as much as one would hope. While this page is being started for our own personal ALS story, all funds remaining in this account after my mother's passing will be donated to ALS research. 100 percent. If you want to help with ALS, but don't want to help me personally, I encourage you to visit alsa.org and donate there. If you would just like to share your own ALS story, advice, or thoughts, please do! Thank you for taking the time to read my story!
Organizer
Donny Early
Organizer
Berlin, MD
