It has been a while, I know

Hi Everybody.

I have obviously decided to "privatize" my life recently. For me, most of the journey I feel like I can help with has been already documented. If you have read this blog, you know how I feel about many things. I have put my heart out there for pretty much anyone to see and left it exposed for a long time. I am not pulling any of it back, but I am deciding that it is time to re-focus my energy on the life that is in front of me and my family. If you have read my blog from back to front, then God bless you. You have seen my pain, my passion and many things that I never thought I would ever share with the world. If you read it all, you have probably felt a portion of my pain, and I have to apologize for that because it is the last thing I ever want to cause anyone.

So, this is what I feel the messages of this blog are...at least today...

1) Live your life. You never know when your existence on this planet will change forever. If you are blessed with health then for God's sake, don't waste it worrying about small issues or petty problems.

2) Love without fear. Love is a blessing. It is something that you can't buy, borrow or sell. If it comes your way, you have to accept it and do everything in your humanly power to protect and enjoy it. If you fear losing it, you will kill it. If you don't love with freedom in your heart, you will only jail yourself. If love goes away, then it wasn't love and you can't have lost it because you never had it in the first place. So what is there to fear, really?

3) Love changes. Don't expect what you feel to be the same always. Just try to feel the truth of it. Whatever it is in your heart is what it IS. Don't judge Love, just feel it. Give it back. It will take care of you and itself.

4) Be strong. It is simple to say, much harder to do. Nothing you do for yourself will ever be worth a fragment of what you do for someone else. Step up. Give. Don't Give up.

5) You are amazing. The compassion I have felt from friends, family and even complete strangers has left me speechless and humbled on so many occasions I can't even begin to describe or document them here. I remain in the debt of so many people that if I tried to even begin to repay it, I would be overwhelmed in seconds. I know you don't expect it, and all I can do is try to repay the grace that I have felt back into the universe in some small way. The messages contained within this blog are a small token of my gratitude and humility. Love flows out to you, whoever you are, from me every day.

6) ALS Sucks. It sucks worse than any disease I have ever heard of. A diagnosis of ALS is currently a death sentence. There is no treatment, there is no cure. If you have read this blog, you know what it does to those affected by it. You know what it does to their friends and families. I won't belabor those points here. I will say that we can't quit looking for a cure. The fact that so few people have it compared to other diseases is no excuse. There are no survivors of the disease to advocate for it only devastated people left trying to move on with their lives. Genetic/Familial ALS only results in about 10% of cases, so the direct threat to people related to those with ALS is even somewhat remote (by comparison.) It is not a pretty scenario. I have had to take a break, but I will not stop advocating and educating people about this horrible devastating disease that NO ONE should ever have to suffer. (Ironically, when I spellcheck my blog, ALS is not recognized as a word) :-(

God Bless You.
B.

Reference to an older post

I received a note on an old post that really touched and humbled me last night.

For the record, I will say that if I had chronic Lyme disease, that I WOULD DEFINITELY follow a long term regimen of antibiotics to aggressively kill of the several forms of the disease. I do believe, though probably hundreds of hours of research, that chronic Lyme disease is a much bigger problem then the medical establishment will recognize and that many more people are suffering from it than anyone realizes. I also happen to believe that there is a connection between Lyme and things like ALS and MS and that it can be communicated via tainted blood. But then again, I'm not an MD, only someone who has been drastically and painfully forced to learn about these issues.

The biggest problem I have with Mindy is that she completely dropped us the very second that we questioned whether her treatments were helping and suggested potential other things that we had heard about. She never called back and she cancelled Heidi's prescriptions at the pharmacy she is literally directly connected to, even her anti-depressants (which is extremely dangerous, especially given that she had been involved directly and acutely aware of Heidi's extreme depression and suicidal tendencies that flashed up from time to time.) Completely inexcusable and irresponsible. To date, she has never addressed my blog, except maybe for in an anonymous post that was very suspicious to me being "pro Mindy" and chastising me for "taking people's hope away" by not recommending her.

OK. End rant, but please do review Kris' note at the bottom of the comments section here. I hope that spouses and family of those affected by these degenerative disorders do step up and to whatever they can for their loved ones.

http://alschronicle.blogspot.com/2009/02/readers-comment-and-my-response.html

Peace to you during these holidays. And Health...that would be my wish for all of you.
B

Musings on Thanksgiving

I peel myself off the white shower pan
wondering how much of the water that went down the drain is diluted by the salt from my eyes.

I shave the gray from my face and marvel at the color of my eyes in the mirror...red from beer and pain.

I look at shoulders, ripped from carrying, like my heart.

Thankful for this life

Thankful for the times I have had with my beautiful wife.

Thankful for freinds

Thankful for family

Thankful for new love and the promise of a future unwritten that mends.

Thankful for people that bring a voice to a disease with no survivors

Wondering when I will be able to speak of it again.

Wondering when the darkness of the day will lift and the stars of the night will shine again.

Yes, Thankful for this life

Sometimes ready to live it, sometimes wanting to fall back down on the shower pan and let the water flow until the tanks have gone cold.

Happy Thanksgiving everyone, be there for those you love.

B.

More amazing art...

This from my friend Kassi, who's mom died of ALS and who's sister died in a tragic car accident a few years later, in 2005. She wrote this on her sister's memorial page, I share it with her permission.

I have amazing friends...what else can I say?

=======
You can shed tears that she is gone,
or you can smile because she has lived.

You can close your eyes and pray that she'll come back,
or you can open your eyes and see all she's left.

Your heart can be empty because you can't see her,
or you can be full of the love you shared.

You can turn your back on tomorrow and live yesterday,
or you can be happy for tomorrow because of yesterday.

You can remember her only that she is gone,
or you can cherish her memory and let it live on.

You can cry and close your mind, be empty and turn your back.
Or you can do what she'd want:

smile, open your eyes, love and go on.

-Kassi Kosydar Figueroa

Good stuff!

A friend sent this to my mom. If we all saluted the dawn like this and lived by this "motto" the world would be a much better place.

Great stuff...

Salutation To The Dawn

Look to this day!
For it is life, the very life of life.
In its brief course
Lie all the verities and realities of your existence:
The bliss of growth,
The glory of action,
The splendor of achievement,
For yesterday is but a dream
And tomorrow is just a vision,
And today well lived makes every yesterday a dream of happiness
And every tomorrow a vision of hope.
Look well, therefore to this day!
Such is the salutation to the dawn.
--Kalidasa

My message for the day...

Let go of your anger or it will consume you. I have been to the dark places and I don't ever want to go there again.

If you are there, let go or be consumed...it is your choice but I will not join you.

The time is now. This life waits for no one.

Love,
B.