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
Good Luck to you Josh, I hope and pray that this really works out for you and that the docs do find something that will work. My thoughts and prayers are always with you.
ReplyDeletedeus volo
This comment has been removed by the author.
ReplyDeleteJosh,
ReplyDeleteI never thought much about ALS until my mom was diagnosed in October of 2009...like you it began with progressive weakness in her right hand that started in late 2008. Doctor after doctor and no answers...a pinched nerve, carpal tunnel syndrome, etc. Once diagnosed, the course of her disease was very rapid. In December of last year we were no longer able to leave her alone and she moved in with my sister. We cared for her together until her death in June. She was 71 years old. ALS is a cruel, devastating disease because as your body goes, you mind stays alert as ever. She refused any life saving measures such as a feeding tube or a tracheostomy, as well as being involved in any clinical trials. I wish you luck with your trial and I hope you are fortunate enough to receive the drug.
Should you ever have any questions or concerns I can help you with, please feel free to call me. I live in Santa Fe still, and graduated in 1976. I don't think I know you, but possibly know your parents?
Ja Ruble Lowry jalowry58@yahoo.com