Why I Choose to Believe

I have been doing some thinking lately. Having a disease like ALS gives you ample opportunity to do some thinking, since it forces you to sit still. I have been doing a little thinking about why I choose to believe in a loving god. I mean I want someone to tell me how in the hell there can be a loving god when there are disgusting diseases like ALS in existence? And nobody can prove to me where we go after our time here is done. Luckily there are a few things in existence called faith and love. No, there is no scientific way of proving my faith and love, but I know they are real. I believe in faith and love, and I believe in a loving god. I know that there are things that happen in this world that suggest otherwise, but if all I do is focus on these things I would be ignoring the countless good things in my life. I would also be ignoring my innate, yet very real need to know there is a supernatural force out there that knows why things happen the way they do. And I would be ignoring the feeling that this force loves me. I am a sucker for love and goodness, and there is simply too much goodness and love in this world for me to ignore. So no, I can't prove to you that there is a god, and that that so-called god loves me. But I believe there is. Take that back, I know there is. That is good enough for me. His grace is enough for me. That is a better feeling than any scientist can give me by proving anything.

Big Week for ALS Awareness

It should be a big week to get the word out on this devastating disease known as ALS.  Specifically because we have three great spokesmen and ambassadors in New Orleans for the Super Bowl.  These three people are Steve Gleason, O.J. Brigance, and Kevin Turner.  All three are former NFL players that have been diagnosed with ALS.  And to have even more of an impact, Steve Gleason and O.J. Brigance have great platforms.  Gleason played his whole career in New Orleans.  Brigance was a part of the Ravens team that won the Super Bowl in 2001.  He still works in the Ravens' front office and is a big inspiration to the current Ravens team despite his advanced state of ALS.  Nevertheless, all three have big plans this week to spread awareness and I could not be more excited.  Team Gleason has already released a powerful PSA that can be found here.  Team Gleason leaves this message on there website:

This video was created for Steve's football family – the players and coaches of the NFL – to show that whether they had lined up with him or against him on the field of play, they all support him in his fight against this cruel and unrelenting disease.

These great players all stand by Steve's belief that everyone who gets diagnosed with this disease has the right to fight, has the right to proper treatment and to the best available care. And they believe, like Steve does, that ALS is under-funded, under-resourced and largely ignored. And that this is NOT okay.

This video represents the players' commitment to do something:
• • To take ALS out of the shadows and get people talking about it.
• • To get the best and brightest scientific minds together and ask them what they need to cure ALS.
• • And to make some noise, pressure the right people and raise the money to make it all happen.

This video is a message from these elite players, among the best and strongest in the world, to all the victims of this horrific disease to say: We're all in this together. And it's an invitation to the rest of the world to join the fi ght, and put all of our heads together to find a cure for ALS.

Very powerful indeed.  I told my mom yesterday that I would be much worse off without these men.  We all need heroes and these men are mine.  Especially Gleason and Brigance.  Lets pray that they can make a big impact this week so that the day we cure this disease can come much sooner.

The Dilemma

As we transition to a new year, 2013, we are probably  finding ourselves trying to better our lives through resolution.  Maybe by eating better or exercising more. Maybe we will try to be more positive about life and the reality of our circumstances.  I personally am constantly trying to keep the right perspective about my current situation.  But what is right perspective for my situation?  That is my dilemma.  I mean there is so much to be negative about, right?  I can't walk, I can hardly talk, and really can't eat anymore.  I can't hold or hug my children.  I can't even wipe my own backside for Heaven's sake.  There is so much this horrible disgusting disease takes away from you that it is downright depressing.  On the other hand, I have so much to be positive about.  I have two of the most perfect kids God ever created (at least in my eyes).  I get to enjoy them on a daily basis even if I can't pick them up.  I live in one of the most loving and supportive communities I can imagine.  I have a wonderful network of family and friends that  keep me running.  I live with the hope that with all of medical breakthroughs occurring today that I will one day be healthy again.  I have heroes like Steve Gleason and O.J. Brigance to look up to.  So I wake up every morning with a choice just like everyone else in this world.  A choice to be happy or depressed.  Some days the choice is difficult, but it's still a choice.  Today I choose to be happy and plan on continuing to be happy throughout this new year.  I want to close with something I heard Mike Ditka say the other day.  He said, "yesterday is history, tomorrow is a mystery, today is a blessing."  I thought that was a pretty good way of looking at things.  I wish everyone a happy and hopeful 2013.

Still Here

I have now obtained the use of eye tracking technology, so I plan on starting to post again. I've been pretty busy this year just trying to keep up with my two kids. They are growing up so quickly and I am soaking in every minute. That is one of the benefits of having ALS, I get to spend every day with them. They are such a blessing. They are perfect. As my hero Steve Gleason would say, the journey through this trial won't be easy, but it will be awesome. My body has gotten substantially weaker so far along this little journey. There are so many things I can no longer do that I used to take for granted. Luckily I have two awesome women to take care of me and put up with my crap. Thanks to my beautiful wife and mother. I could not survive without them, and I mean that in the most literal sense. I also have plenty of support from family and friends with a special mention of my two wonderful aunts Delynn and Deloris, who bring dinner every week. Every little thing helps and I am thankful for every bit of help. With respect to my earlier post on hope, there are many things going on currently in the medical arena, especially on the stem cell front, that give reason to hope. Additionally, many organizations, and even PALS themselves, are really spreading the word about ALS through the use of social media. The internet is such a powerful tool. Now more than ever there is reason to hope, to fight, to hang on. No White Flags. By the way, I typed this whole post using only my eyes. I can do this with the help of the Tobii PCEye. It is a pretty amazing tool. One more thing - if anyone is interested you can follow me on Twitter @STRONGWHENWEAK

Hope

With each new year comes new hopes, new dreams, new promises,new fears. We will never really know what the new year will bring. I do have hope for 2012. I have hope that my beautiful kids will continue to grow and flourish, hope for the health of my famIly and friends. That is what faith in God gives us. Hope. If that faith is not there, we have no hope. Without hope we wonder aimlessly through life searching for reason, for purpose, for meaning. Faith in Jesus gives us all these things no matter the situation. By having faith in God I do not shy away from knowledge. But no matter how smart I am or how much knowledge I gain I will not know everything. There will always be that thought in my head of a supernatural force controlling, swaying, changing the winds of time giving our lives and the events therein meaning and purpose.

Here's to a hopeful 2012 through faith in Jesus Christ.

Josh

Scatterbrained thoughts on life

Life on this Earth is such a funny thing. We put so much stock in it knowing that it is so fragile and our time could be up at any moment. My mind works in different ways now that I have been diagnosed with a most likely terminal illness. I think back at the first couple of days after Dr. Pleitez told me I had Motor Neuron Disease, or ALS. I felt so defeated, like my life had ended. Now, six months later, I am still here. I am a little weaker, but still going strong. I have really had a spiritual awakening over this same period. I have learned to put things in God's hands and not worry too much about the future. It really has been a great release, a huge load off of my back. My faith in God has become so much stronger. I put my faith in Him and His son Jesus Christ because that is the only constant thing in this life. On the other hand, every other thing on this earth is constantly changing. Tornadoes, miscarriages, fevers, car accidents, wars, terrorist attacks, earthquakes, nuclear meltdowns, hurricanes, floods, droughts and many other things can be on our doorstep at at a moments notice. We have no control over these things, and we must learn to put it all in His hands lest we become overwhelmed. The tornado outbreaks in the Midwest and Southeast have been on my mind lately. I mean, look back at the day I was given my diagnosis. Now think about the young man about my age whose life ended while shielding his wife from injury during the tornado in Joplin, Missouri on this past Sunday evening. I thought my life had ended. He might have been thinking about starting a family with his wife and watching his children grow. Now, fast forward to today. He is no longer here and I am. This is just one example of many. Having Jesus by your side really helps you put life in perspective. He tells us in Scripture to not worry about tomorrow, and to live in the present (Matthew 6: 25-34). I have learned to enjoy life each day, trying to really soak up each moment. Watching my son Jeran grow has been such a blessing. Now it is almost time for #2. Jaylee Faith is scheduled to be here June 7. We are building a house across town and being able to watch it go up has been really exciting. So many blessings in my life right now. I praise the Lord for that. Why would I let a minor nuance like ALS get in the way of all the great things going on in my life right now? Not in the past. Not in the future. Right Now. I would not be able to think this way if it was not for the Lord, an my relationship with Him.

All of this is not to say I don't have my down moments. I still sometimes think of my former life when I was a decent basketball player, when I was pretty good on a wakeboard, when I could toss a football a good 55 yards or so. Sometimes I long to wrestle with Jeran and launch him into a swimming pool with my hands, or maybe even play a round of golf. To get through these moments I go to the Lord and He never fails to get me through, to help me put things in perspective. And all of this is not to say I do not worry sometimes. Last Saturday night, we had to take Jeran to the ER because his fever spiked so high. It scared Jenn and I so we decided to take him in at 12:30 in the morning. Everything turned out ok. There were some moments when the anxiety was almost overwhelming, but Jesus was there with me the whole time, providing reassurance and putting things in perspective. The key to all of this is being able to put things in perspective by putting them in the Lord's hands.

We went to our first ALS Clnic on May 13. It went rather well, and I met some good people who are also dealing with this disease. It gave me a good feeling meeting people who know how I feel. Positive experience all around. One other thing too. I have been selected to participate in an ALS drug trial. This particular drug has more promise than any other before. It is a double-blinded placebo trial, so neither me or the doc will know if I am getting the real thing or not. I have a 2/3 chance of getting the good stuff. My treatments start June 13 so I ask for your prayers that the docs may be on to something here.

That's it for now. It feels good to get some thoughts on paper again.

Carpe Diem

ALS Awareness Month

I just wanted to let everyone know that I haven't forgotten about my blog. I plan on writing more in the near future. Right now I wanted to let everyone know that May is MDA ALS awareness month. Below is a link to the MDA Anyone's Life Story, which introduces you to a new person living with ALS for everyday in May. I thought some of y'all would maybe like to check it out.

http://awareness.als.mda.org/