Tuesday, March 23, 2010


Imagine if you knew when you were going to die. Imagine if you knew how much time you had left, here. How would you approach that? Would you put a bucket list together and enjoy the time that you had left? Make sure you fixed any transgressions? Prepare your farewells to your friends and family?

After all, some of us have this fear, this fear of death, or the unknown of dying. The fear about how it will happen, when and what will happen after. You try to push it out of your brain and usually you're successful, because you are not going to walk thru life worrying about something completely and utterly out of your control.

Then you move beyond your 20's. Then you get married. Then someone dies in your family like a grandma and you are reminded of death as you gaze at her stitched up and drained body prepared only for the means of closure for those of us that are still here. That still irks me. I'm not sure I want people seeing me like that. Bad makeup, lips stitched together..eeks.

But as I was saying. You move beyond your 20's, you get married, you have kids and then it happens. You realize that you're not invincible, having a husband and kids makes death seem all too much more vulnerable, more fearful. Because not only do you have it in your head, you have to discuss it with your children. You talk about it with your husband, you sign it with your lawyer and your 5wishes.

It becomes so much more then just growing old and dying. It becomes isolating, lonesome, scary because you see your Grandma walk thru life after losing Grandpa 7 years ago, sad and unhappy with how life has changed so much. Sure you tell yourself that you're not going to become one of those nilly nellies. You'll live life even if it's in your 80's.

For some of us we will, but no matter, we will need someone to take care of us, we'll have to depend on someone to be there to help us with driving, or yard work, or whatever aliment that might have stricken your body at that age. But you are not a bitter 80 year old woman, you walk thru each day enjoying each breath, each grandchild and if we're lucky, great grandchildren.

But the older you get, you realize you're one step closer to that part of your life. You accept that it will one day happen, and for some it's a relief when you're that old and unable to live your life like you did in your memories. You know it's there, death. You fear it happening to your children after already dealing with the loss of your husband of 55years.

Like I said, death becomes more then just a word, it's far more powerful. Even if you are the most religious person in the world, you still will talk and pray about things related to death. Even if you're totally not afraid, because you know where you'll be, it's still there.

But imagine if you knew an approximation of when you will die. Imagine if the fear of waiting for that time, would go away because you would know.
It would reveal itself to you. Imagine if you knew what you were going to die from. Would it relieve you to know the answer to something all of us think about even if you're totally okay with it?

Now, imagine you're a healthy, strong, athletic, never really sick, 28 year old kid. Imagine if you're the youngest out of 3 boys. Imagine that your two older brothers both married and they both have 3 sons each. Imagine you are married and just last March your wife delivered your first child, a little girl. Finally! A little girl in your family that has forever been, aside from "Mom," all boys.

Now imagine if you're told that you have 2-3years left, max and you will die from something that has no cure. If you're lucky 2-3 years and that's based on when the symptoms first started, so for you, that would mean you have 1-2years left. How then would you manage? Your unknown thoughts are answered. You are given the time frame of when you will die and what you will die from.

Is it a relief to know this? Even at this age? To know that you will NOT see your daughter start kindergarten, won't see her lose her first tooth, won't see her actually comprehend the awesomeness of Santa. You won't see her crying on Santa's lap until she realizes that he's on her side. You might not even see her talk. She will be so young, that she most likely will not remember you. You will not walk her down the aisle. You will not be able to fulfill your roll as a Daddy. As dad with a teenage daughter. As father of the bride.

I cannot wrap my head around this. The reason being is because one of our forever longterm friend was just told he has ALS. This boy, this young man, a close close friend of my brothers, played baseball with strength. Ran the defense on Friday night football games with galloping grace and some serious powerhouse moves. A great family.

This family traveled with us during my brother's baseball games. They sat and cheered with us as they ran the football field like the most successful company you've ever seen. The family that, even just last year, dropped everything to come to my parents side when my brother was in that terrible car accident. Waiting while my brother was in surgery to try to stop the bleed in his brain, to try to fix his fractured skull.

This wonderful always giving of a young man. A good kid, even in his teenage years. That didn't get involved in the drinking and fearless roles that many teenage boys end up being cast for. A good all around great kid. The family well known and liked just because they are who they are. The one brother marrying his longtime high school sweetheart.

Approximately 6000 people will be given the diagnosis of ALS (Lou Gehrig's disease), and 98% of them will be men in their 40's and 50's. Not 20's.
It is a cruel awful sick disease, one that I witnessed thru my sister's husband-his uncle dying from it. A newsbroadcaster that lives in the same town as I do, that has it. Or rather, is dying from it.

Which is how it always happens. You will die from it, without a doubt. There is nothing that they can do to stop it, but they can help ease the symptoms as much as they can. There is no cure.

I know what will happen to this young guy. I know what will happen to his body. I know what ALS will do to him. I pray and pray for a miracle. A cure, a sudden revelation just like the botox discovery. There is the 10 80 10 rule. 80% of the people given the diagnosis of ALS will die within the time frame they are given. 10% will die earlier then the doctors thought, and 10% will surpass it.

I'm hoping and praying that he'll be part of that 10%. There have been cases where men with ALS live with the disease for 10years. As to what quality of life, I don't know. Yet 10 years. That would mean he would be in his late 30's.

The symptoms that he has and how the disease has already progressed isn't a good start to that 10% for 10years.

It makes me sick to know that eventually nothing will work, he will not be able to talk, he eventually will only be able to blink. Yet his brain, his brain will still function and he will still feel. He will eventually suffocate to death when the time comes after the breathing tube has long since carried this young man. When the feeding tube that has helped keep him nourished, is no longer needed. Eventually the other side of him will stop working. Will atrophy. His head will eventually hang down because of this disease. He will eventually choke on his saliva and so the breathing tube and feeding tube will start.

I don't mean to be so graphic, so down, but I am compelled to discuss this because so many of us are clueless to the rare no cures of the world. Clueless to what it does to not only the patient, but the entire family. Like rare brain tumors in little children. This young man has been told when and how he will die.

I need to write about this to make people more aware of ALS. Google it, you'll see what I mean. I want people to understand the pain families will have to face. In this circumstance, a very rare circumstance for such a young man to be given this curse, what the next year or 2 will mean for him, his wife, their little girl.

I want people to understand this disease more because the more you're aware, the more you care and the more you help in prayers, support and ways to help work towards a cure.

In this situation I want people to understand that this young man, who used to always say to my brothers and his friends, how he couldn't wait for the day when he would have a son, like the rest of his friends, and they would be able to be their son's coach.

Now, he is making out his bucket list. Even though his left side is now completely atrophied and his voice is already changing. This 28year old is making out a list of things to do before ALS makes it impossible for him to do so. Sure the one thing on his list, "make a son" isn't possible. But going to the masters, hopefully, is. Going to a Yankee's game, hopefully is.

Hopefully, not only will we be able to help with fundraisers, and to help make his list come true, but hopefully I pray every night for a cure. It has to happen.

This young man, ironically an athlete himself like Lou Gehrig should not be dealing with this.

Yet he is. He knows when is time is. He knows how it will happen. He knows he'll have the chance to say goodbye. In a way that's a peaceful process. Nothing sudden where your loved one is tragically ripped away from your ability to physically hug them and talk to them.

It still doesn't make death go away, even when you know how and when. But it gives you time to not fear it.

What would you do if this was you? If this was your brother? Your youngest son? Your husband? Your friend?

Please keep this wonderful young man, you thankfully moved with his wife up to Michigan where her family is a few years ago. That gives me some relief to know that his wife will have her family near. His family, in this town, here, will continue to make the journey up to Michigan. To help make his bucket list come true.


austere said...

This is terrible news.
But yes, that 10%.
And yes, that to-do list.


... Paige said...

we havd a 17 year old in Katy TX who has a short time and her hometown and others pitched in to help with her bucket list

everyone should try to do at least one thing a day that is special and meaningfull to themself


Cheryl said...

Oh so young to have such a horrible disease with no way out. I wish him and his family bravery and grace and courage. This is sad, sad, sad.

ed said...

i am with cheryl. so very sad. : (

Palm Springs Savant said...

I'm sorry to hear about your friend. I just recently got involved in planning a fundraiser event for ALS in the greater LA area. It's a baseball event for this summer. I'll dedicate my own personal efforts for our friend.