Sunday, March 8, 2009

Sanity's Top Ten List:

So many people ask me how I keep it, so here's my answer:

I'll start by saying that my sanity is a challenge, but pales by comparison to the challenges to sanity that H has. I am only the one helping, I'm not the one that can't do.

So, sanity from my perspective is what this is about. I'll do this in the "top 10" format like seems to be so popular these days. I write off the top of my the deeper things generally come later in my musings. The following list is not in "order of importance" rather in the order that they come to my mind, which as you probably know, is not an "orderly place." I hope upon reading this that you can see why I am still sane. At least why I think I am. You may think I'm crazy to put this out there, but I have to. I hope you understand...

1: Heidi: She's hanging in there like a champion. On the days that I am feeling down or weakened, she cheers me up. She instinctively knows when I am at the end of my rope and has a knack for having the right amount of compassion when I need it, even though she's the one that is really hurting. I don't know how she does this, but it inspires me every day and gives me the strength to carry on.

2: My Girls: They rock on. No matter what is going on, they go about their day to day lives and just have an exuberance of youthful existence that touches me in a way that is amazing. They sort of live "a day ago and a couple of weeks ahead" as a wise friend of mine recently said. It is a gift, and they are a gift to me.

3: John; My business partner keeps things sane at work. This is obviously huge to me. We have our struggles related to the economic downturn, but have been able to keep business flowing enough to make things work. Not only has he been supportive on the work front, but also on the personal front, which means a lot. My day to day role in the business has not changed much and the most important aspects of what I do including client recruitment and support don't suffer, but time consuming things realted to operations of the business, finance, etc. have been in many ways taken over for me, so that's a massive relief. I can apply my efforts to bigger issues within our business on a global level, which is very important for our future.

4: The rest of the crew at T-bolt, our vendors and our clients. Everyone has stepped up on some level. It has been almost three years since we were handed this bag of doo doo and everyone has been very understanding and supportive. I don't expect our customers to accept or settle for a lower level of service because of it, and I don't think that they have, but things like my personal travel, and in-person meetings have been somewhat restricted. No one has questioned my commitment to the business and every day I feel a responsibility to do the best I can to help everyone in my business life make money. At a core level, that is what business is for. It also happens to have the power to find and foster meaningful personal relationships and deliver life experiences that transcend the material 'value' associated with them. This is what makes business worthwhile to me now. It has not always been so, but it is now. I have always strived to be fair in my business practices, both internally and externally, and this philosophy breeds healthy crops.

5; Nautilus and Paladia: I don't know how many of you have Comcast but there is a channel on HD called Paladia that has concerts, music videos and special music related events that I record every day. I recently have spent an hour or two with the following bands: The Foo Fighters, The Fray, Bruce Springsteen, U2, Sheryl Crow, The Counting Crows, Tom Petty & the Heartbreakers, Oasis, Eric Clapton, The Dave Matthews Band, John Mayer, a bunch of English bands at the "Isle of Weight" festival that I never heard of, but rocked. Oh, and Green Day too. Nautilus refers to my elliptical machine, which I bought in December and have been pounding out miles on since about 12/15. I have no idea how many miles I've run on the thing, but between it and the awesome ability to watch HD music, run, sweat and rock out to awesome music I have become addicted to something productive for myself when so many things would point me in a different direction.

6: U2: It might sound odd or trite in the face of this battle we are fighting that I would include a band in my "saviors of sanity" list, but I have been a fan for about 25 years, and have been inspired by their music, their lyrics and their commitment to help people for almost as long. Some of my finest memories are attached to live concerts of theirs I have experienced in person. Although I don't have any personal experiences with the members of the band, I have intensely personal experiences related to attending their shows, and listening to their music, which I'm sure many do. Some great stories to share with you over a couple of beers at a good Irish Pub when we get a let me know when!

7: Our Friends: There is massive power in the ability of people that you have a mutual caring relationship with to provide power, sustenance, soul food and strength at any given time. I care so much for my friends. There are so many people in this world that I would die for. Pretty much anyone out there that counts themselves as my friend can count themselves in this club. I view life very much as a journey of experiences marked only by the imprint that you can leave on someones heart. My hope and goal every day is to leave a positive mark everywhere I interact. I know I don't succeed in every circumstance, but I am human. Friends are the family you choose for yourself, and those that choose you. There is massive power in this. In this vein, it is hard for both H and I to accept all the help that we have been given and continue to get from our friends. We want to be the ones helping others. We struggled with this for a long time, but acknowledge our need, which as strong humans, is hard to do. We thank you all from the bottom of our hearts for all the assistance you have offered us out of friendship.

8: Our Family: Like I said, this is no particular order. To try and put one above the other would be an effort in futility and unfair to all. We have, by any account a HUGE family. Both H's parents and mine are divorces and remarried. So, the girls still have 8 living grandparents. Every one of them loves us all and contributes what they can to our situation. We have had some bad luck recently with health issues when they have come to visit, but we know that they are there to support us at the most awesome levels as much as they can. Most might think that this is an "obligation" and should be counted on, but I hear so many stories of abandonment or dis-association of families when a loved one is diagnosed with ALS that it is disturbing. A huge problem with this disease is that right now, there is no cure, there is no treatment, there really is no "light at the end of the tunnel." I think this fact quickly separates the wheat from the chaff in family situations and we have been fortunate to have support across the board. The extended family frequently helps out and sends love and support and this is all awesome. Every card, email, letter, phone call, etc. means something to us (this goes for friends too.) We can't and don't get back to everyone and hope you know that your love is not unappreciated or taken for granted. Heidi can't answer emails or phone calls most of the time and I can't respond to a shameful percentage of the communications I receive. Please know that we appreciate everything. It's hard to separate family from friends in a lot of ways on both sides, so alot of what I write about each refers, also, to the other.

9: God: I write a lot about the boundless and infinite well of love that is available to all of us. This well, to me, is God. I pray every day for God to show us the path. I thank him (for lack of a better pronoun) for the blessings he has bestowed upon our family. I pray for the strength to overcome this unfathomable pain and suffering we bear. I won't delve into the depths of my spiritual beliefs, but know this: I believe that there is one God. I believe that God is the same entity across many religious boundaries and that through the Millenia that we humans have tried to explain this power in our own terms by manifesting it upon beautiful humans that have seen his light and tried to bring to others through the pursuit of peace and the proclamation of Love. I also believe that "man" has twisted spirituality to fit secular agendas in so many ways, the politics of which has separated so many of us and lead to immeasurable suffering, that it is hard to traipse faithfully down the path of any particular "religion." God, Allah, the Great Spirit, the Universal Power, the Truth. Real world applications: The Golden Rule, the Ten Commandments, Proverbs. These are some of the things that guide me. The Love that Jesus had inspires me, the sacrifice he made leaves me in awe, the fact that he could have risen up in violence to prove his point but didn't makes him authentic because it wasn't what he believed in. It's the dogmatic, inflexible, "my interpretation of God is the only one" stance that I can't relate to. OOPS, I wasn't going to delve into the depths of my spiritual beliefs, was I?

So, I've been listening to U2 tonight and found this appropriate and relevant, as I happen to much of their stuff actually, in one circumstance or another.

(From Kite)

"Something is about to give, I can feel it coming, I think I know what it Is. I'm not afraid to die. I'm not afraid to live. And when I'm Flat on my Back, I hope to feel like I did."


"Who's to say where the wind will take you? Who's to say what it is will break you? I don't know... which way the wind will blow. Who's to know when the time will come around? Don't want to see you cry....I know that this is not good-bye."

I believe that all you can take with you is the love you have given and that that has been given to you. You don't receive love by doing the wrong thing, so don't. That pretty much sums it up for me.



  1. Those of us who are "strangers", yet followers of your journey, keep your family in our prayers and Heidi's image in our hearts as we try to support the cure.
    By opening your heart and posting this Blog, the potential to awaken "strangers" to just what happens with ALS is unequaled.
    You can read all you want about ALS- how there is no definitive diagnostic test, that they have absolutely nothing to offer in terms of a treatment, that the costs associated with providing proper quality of life are in the hundreds of thousands, or that the disease itself literally steals a piece of you every single day.
    But to read your personal journey, puts a beautiful face in front of the definition and shows that even in the best of circumstances, with all that you are grateful for- ALS, (as described by one of the world's top Neurologists) "is the worst disease to befell human kind".
    Perhaps #10 is this Blog- which may serve as a place of stories, but may touch someone's heart to help in whatever way they can.
    From looking to your writings as a way to be a better caregiver, to appreciating life as you have it today. Or perhaps to help fight for the cure, through awareness or by supporting a Lab in its efforts.
    I would find it hard to imagine that someone could read this and not ask themselves "what can I do"?
    So- thank you for putting this out there and for sharing all that you do.
    Heidi and your family and have been placed in the prayers of many strangers, so #9 may be the best place to leave off.
    Thank you again.

  2. From me: --tears--you are so right. This blog and my other writings are number 10. Thank you so much for your comment.