living like im dying

[smwelder]

Although legs gone and one and a half hands left and recently lost my voice, what the hell. if im going to live with ALS its going to have to try much harder to take this man down. im not dead yet. I been given the time to really enjoy life so what if its from a chair. thats why there's accomadations for us pals. their in place not to make us appear less then others but rather to make us equal. im going to live the remainder of my life living with ALS not suffering with it. i went camping a few weeks ago to the desert and now the wife and i are going to alaska, canada and san fransico on a 11 day cruise. I refuse to sit by and let life pass me. heck my legs are battery powered now. try to keep up with me. no going gracefully, it's on now im going to go kicking and sreaming evil.

 

[LizT]

wow. that brought tears of... joy and pride and.... wow. good for you my friend! You are a role model and this reminds me of a good friend we recently lost. though maybe i shouldnt say because i am not a PALS, but I would like to think that in some ways its a blessing that you are given the chance to live life the way you want. you know that your time is being cut short so you know now what really is important and all the petty bs of daily life gets pushed aside. you are now able to focus on what really matters. Love. Laughing. Sharing. Feeling.
you see what i mean...
proud to call you my friend this evening.

 

[smwelder]

Thanks LIz, and i to in some ways se this as a twisted blessing even if im on a unseen time line .but, aren't we all in some ways Hay either a pals or cals we both have a hard path . thank you for what you post on this site and you pals

 

[Alyoop]

The thing is we all should be living like that. Isn't it sad that when we are well we take life for granted, nothing will happen to me attitude. When we are faced with, life threatening, life changing situations, we suddenly see the world and our lives the way we were always supposed to. It's beauty, it's wonder and yes it's tragedy as well.

Go for it, I am never going to let an opportunity pass me by. You are inspiring
Aly

 

[howerstephanie]

Good for you smwelder! You are truely inspiring! Have a great time on your cruise :smile:

 

[Ladyinn]

Thanks for sharing, smwelder. I too see this disease as an odd blessing since it is allowing me to live life with gusto. I am still ambulatory (semi) and use a walker and a wheelchair. My arms are "dead" but fingers still work most days.

I've never been a person with a bucket list until ALS struck -- now I have a list of about a dozen things to do while I am able and am happy to say the list was dwindleing after 18 months so I've added to it!

Keep living... even if it means slowing down and taking naps on occassion!

 

[sadiemae]

YouTube - Tim McGraw - Live Like You Were Dying

 

[jaws]

w00t! Do not go gentle into that good night...

 

[Chris_b]

Very well said, good on you

 

[smwelder]

I like naps too LOL

 

[LizT]

naps are pretty awesome if you ask me.
glad someone invented them. lol

 

[smwelder]

the wife and I spent all day looking at formal wear for the cruise. I chose a traditinal black tux and shaun my wife yes my name is Shon too she picked out a nice black formal dress and a blue one . I got bowties and cumberbuns to match both of her dresses. I tell you, hanging out in front of a ladies fitting room is fun from where im sitting . But my neck is sore, fills like i got a little wiplash. To make things interestng i had to hol my wife's purse on my lap while she tried on dres after dress. we hit six stores befor she found two dresses. but it did not stop there now it's shoe time. need I say more. Thank goodnes i'm in a pwc. all bs aside I would not have pass up this experience with my wife for any thing .

 

[LizT]

youre a good guy, smwelder!

 

[BarryG]

I always used to love going into women's clothing stores with my wife, the scenery is always so good :wink:. I wish I could still but I think me sitting in front of the change rooms my mouth hanging open would not be a good sales feature for the store.

Have a great cruise and we want photos!

 

[michael0314]

You are exactly right. I love your attitude. I have expressed a similar one but feel its easier for me as I am still pretty functioning. Your words are inspiring because I always wondered if the shoe might fall when functality failed. Good for you and may you keep it in all good and bad that comes your way. We have in my small community recently lost 2 people to cancer and people look at me like I am a freak when I tell them I am blessed. I just to choose to see the blessings in front of me and savor them.