Brand New To This Journey

[Canadian4Life]

Looks like I came to the right place....

Today, I just found out that my best friend (people have said we're soul mates... ) has ALS. I knew he had been having problems for some time, but perhaps part of me did not want to confront the truth. I saw my friend today for the first time in about 3 years - and he broke my heart.

Because he asked me not to be MAD at him, of all things. Sensitive guy that he'll always be he was concerned about how I'D feel seeing him the way he's become. Our friendship started when we were both 7 years old, growing up on the same military base - close to 25 years later all I could think when I looked him in the eye was "After 25 years, did he think I was going to turn my back on him NOW?" Never...he has gotten me through some of the darkest times in my life- times where giving up seemed like a sane choice.

But I've been blessed to have one such as him, who showed me that life was something I could hold on to. He believed that I was someone worth fighting for...and it's made all the difference.

Now, it's my turn. I'll always be there for him no matter what, but I'm almost ashamed to say this - It was HARD seeing him today; I wanted to run so badly - and I definitely didn't want him to see my eyes starting to tear up. Then he started to talk - and I was stunned.

Though ALS has taken his ability to speak away, he still has that wonderful VOICE. He's smart, can argue the fuzz off a basket of peaches, is incredibly kind and still has that mischievious streak in him that made us reminisce about the times said streak would land us both in some principal's office!

We grew to be high school and college sweethearts; but as it sometimes goes Life and Fate have very different plans for us. Our dreams wound up taking us down different paths, and though it hurt us both we loved each other enough to leave with a smile.

Anyhow, a couple of hours into our talk ( I TOLD you he was a great conversationalist!) he had stopped typing and was just staring at me, like he had something to say but was afraid to say it. Then...after a LONG time (he only has the use of his left arm/ hand) typing he started to cry. "I never stopped hoping you would come back. But you deserve better than me now." I started to cry as well, but then to be honest..I gave him just a little heck saying..."I'LL be the one to decide what I deserve, mister..."

Truth be told, I've never stopped having those kind of feelings for him either, and I told him as much. He asked me if I could still love him KNOWING how he is now and what the future could hold - and one look from those beautiful brown eyes told my soul what it wanted to know.

The saying goes, "If you love somebody, let them go. If they come back to you, they are yours forever. If they do not, it was never meant to be..."

It was his voice, not his ability to speak that made me notice him as more than a *friend* in the first place. His sense of humour can STILL make me laugh, even if a computer is the only way he can turn it loose. That kind spirit still makes me feel content and safe. Eryk is still Eryk...and even though his body no longer works as it should - all the parts of him that made me fall in love with him back THEN still exist.

How can I deserve *better*, when the *best* just came back to me? This is the promise we made to each other...

One day, one hour, one moment at a time. However long our future might be, all of it will be together.

[joelc]

That was beautiful! I wish you both the best, and many years of happiness together.

One of the great things about ALS is that it seldom affects a persons mind. It does happen but there are better odds it won't. Enjoy your time together - Love conquers all!

[shelleynshaggy]

What a wonderful story for this awful disease, best of luck! Funny how fate works.

[GlenBrittle]

Welcome to the site.

Well , that was romantic, fantastic, well written .

I feel like I just read the script for a chick flic.

WHO ARE YOU ????

Glen

[Canadian4Life]

Glen....

Since you wanted to know a little about me, no problem....here it goes.



My name is Penny Michelle. For some reason, friends have given me the affectionate nickname "Little Linus", or just "Linus" - like the Peanuts character that cuddles his blanket and tinkers away on the piano. No blanket cuddling for me, but the piano has been a part of my life since I was very young.

I grew up an Army kid - my Dad's work took us to most of the Canadian provinces and even international (Germany twice). I first met Eryk when both our Dads were stationed in New Brunswick. We were both in the second grade at the time and boy, if there was ever trouble or mischief to be had you can bet that both of us would be somewhere in the middle of it. 7th Grade, we moved back to Canada; Eryk and I kept in touch but it was hard leaving friends, such was the nature of our Dads' jobs.

Started seeing each other in high school; by then both of our Dads had retired and our families had settled down. Eventually, it was off to university; I have my degree in English Literature - which is where my use of language comes from. Being a writer by passion it's just second nature. I can not draw to save my hide; my canvas is a piano and a keyboard and words are the paint; how I communicate my art to the world. I did not intend for our story to be written here how it was; it just *happened* that way. After the first few lines, it was just a matter of letting the words take me in whatever direction they wanted to go. That's how I write; very much by instinct and by feel.

If this were all a chic flick screenplay, I would not be working full time in telecommunications to pay the bills while choosing the path of an independant artist. Yes, I'm a writer (of songs and words) - but I have far more rejection letters than you think and right now, things like rent, food and student loans do not get paid on hopes and dreams alone. By the time Eryk graduated uni. ( a degree in Environmental Science) his dreams were taking him in a different direction. Back then I loved him dearly - but I did not want him to walk away from all his hopes, nor did he want that from me. That's when we decided to part, but to remain friends.

As for being a hopeless romantic (admittedly!) I make no apologies for that. This is our story, and the language I use reflects how I truly feel at any given time. I won't use dark words and language when life is sad and unfair as it is. To me, part of truly living is taking even the most negative of situations and finding something beautiful in it to hold on to. This is the path with Eryk that I have chosen and there are no regrets.

Speaking of Eryk...I told all his sisters (5 kids and he is the only boy) and his parents about this site and I know most of them are in the process of signing up themselves, Eryk himself included. They are intrigued to say the least; they currently live in a small community and I know they've been looking for new friends and people to talk to that are in the same boat they are. Eryk will be *EASY* to find...he is a HUGE Dallas Stars fan and will look for ANY opportunity to talk up his favourite team, even if (as he says) it's only in his screen name! Should you find them, welcome them. It has been a rough ride for all and I know some words of encouragement will lift them up. You won't regret it. They're great people.

Lots of Good Wishes;

Penny (but you may call me Linus. Just about everyone who knows me does...)

[Zaphoon]

Well done, Linus! Welcome to the forum!

I love your writing!

Zaphoon

[GlenBrittle]

That was quite eloquent Linus.

Thank you for that insight into your lives. I believe that Eryk is a lucky man for someone as caring to have come back and willing to take on such a monumental task as being a caregiver.

The people that participate here have a wealth of experience. Most of us are not doctors , but we are able to answer most questions or point you towards those answers. Please feel free to ask any question .

Its all about positive attitude and energy management/conservation.

Glen

[tdamess]

so nice to hear something wonderful for a change...

[Canadian4Life]

Didn't quite know where to put this...


Joel...I just got back from your site. You yourself could be a writer...such a wonderful voice. Been only a few days and already I feel so...blessed to have benefitted from all the wisdom here.

Motormouth (I called Eryk that in High School and still do... - it's just in a different way is all!) and I were just chatting and he was just *mildly* annoyed with me - seems we forgot to include HIM in the planning of his baby sister's Sweet 16. Check that...he was MORE than annoyed and let me KNOW it in no uncertain terms. Girls Day in the afternoon, party in the evening and we didn't include HIM? Well...I never thought I'd be happy to see someone angry with me - but in a way, I am. Not that any of us went out of our way to MAKE it like that - but having him chew me out was just another sign that to me, he's still very much himself.

For instance, after we had both cooled our jets it was HE who suggested some type of semi formal affair - girls being what we are, all of her young lady friends were more than up for it and started planning the shopping dates long before Eryk and I were finished! Her Dad has found a nice place, and with her Mom being a FANTASTIC chef of course SHE gets to make the cake! We're talking at length right now; they both know that Tara has largely been relegated to the back burner (not intentionally, mind you). It's only one night - but it will be HERS, and a night to remember. Now...if only we can get a rowdy bunch of teenagers to actually KEEP that oath of secrecy they took...little sis already knows something is up and is actively digging!

Eryk was just asking (he has signed up for the forum and is waiting for approval) all the men of the forum; if dancing as such with his little sister isn't possible (though he'd still like to try something that LOOKS like it... ) do you all have suggestions as to something special he might do for her? PS - he's already getting her some flowers... says his creativity streak doesn't exist and could really use the help!

Anyhow, it is getting close to the end of the day and I have to *seriously* consider going to bed. Church in the morning, then back to Eryk and his parents house for Sunday brunch. Going back home Sunday night for work on Monday. Thinking about putting in for a transfer at work so that driving does not become an issue. Am 5 hours away as it is.

Penny