If you can dream — and not make dreams your master;
Rudyard Kipling
If you can think — and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two imposters just the same.
I have to apologize. It has been a busy summer so we have not had a lot of time to write a blog post. Pool days, baseball, fishing, house fires, yada yada… I thought maybe it was time to write something.
Just to give a quick update, everyone in the family is doing well. The boys have been loving getting out to the pool and running with a pack of friends as tireless and barbaric as they are. The NAC has been incredible. Also, Maria had the crazy idea of taking an RV trip across America in October so Caitlin has been busy feverishly planning that trip. A huge thank you to the friend of a friend who is giving us a great deal on the rental! I got my seventh injection of Nurown so I had a few days in bed recovering. When I was not watching Caitlin’s shows with rampant scenes of shirtless Jason Momoa, I had some time to sleep and think. I wanted to share some of my thoughts.
I am not sure if this is a shared experience with other ALS patients, but I often dream that I am completely healthy. The dreams would be mundane to a healthy person, but to me they are extraordinary. I will find myself going for a jog, playing catch with my boys, or swimming in a mountain lake. Last night I dreamed that Caitlin and I were sitting by a campfire and I wrapped my arms around her and held her until she fell asleep. It was amazing.
When I first started having these dreams I would wake up with severe disappointment at the reality of my life in contrast with what I had just dreamed. Then I taught myself to repress these feelings and just not think about my dreams immediately upon waking. This was effective, but I came to believe that God made us capable of dreams with purpose and intent. I felt I was doing myself a disservice by ignoring them. Over time I began looking forward to these dreams as a respite from the daily struggles of living with ALS.
Recently I learned that it is safe if not rational to see these sorts of dreams as aspirations. Life really has a way of making impossible things a reality. Eight years ago I thought my life was ending when I learned that I probably had ALS. I thought I was fortunate that I had been able to marry Caitlin, have a child, and see the world with the Navy, but my useful days were behind me. In reality these past eight years have been the most difficult but rewarding years of my life. Not only that, I learned that you never stop growing and there is so much to learn from the people and things that God puts in your life.
For example, through an unbelievable series of events I received my first treatment of Nurown in December of 2018. Before my first injection, if you had told me that in twenty months I would be sleeping without a bipap, walking around in the pool, scarfing down ribeyes and riding for hours on the elliptical, I would have been too cautious to let myself dream it. Now it is my reality. As science and technology advance, and as I continue to be supported by amazing people, I am learning every day not to put a cap on Hope out of fear of disappointment. Of course nobody knows what tomorrow will bring, but I will allow myself to hope that I can once again hold Caitlin in my arms. If the dreams don’t come true, I can at least enjoy them. And in my waking hours they can give me motivation to take that extra step. I guess that is all anyone can do.
A good friend and I were floating in the pool the other day and discussing the brilliance of Bob Dylan. When I was in my twenties, I thought I knew what this song meant. Now I am 37 and I am happy that I have no idea…
Tweed Thoughts 
My journey with ALS is nothing compared with what you have already gone through Matt.
I am in a wheelchair and I also used a bipap but your fight and strength gives us hope and inspiration to keep moving forward.
I wish you and your family only the best and may GOD make our dreams come true.
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Matt, May your dreams become a reality. Caitlan deserves it. May trial III bring new hope and dreams and life to all with broken dreams. Sounds like the open road will be time well spent!
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Aloha Matt!
I often have the same dreams so real that I actually feel my body moving and experience running (I actually dislike running), swimming and doing things as I did before ALS. I’m was a very active physical therapist in private practice here on Big Island so I’m very in sync with my body and what it feels like to kinetically move. I used to dissect movement for a living. Those dreams are my free vacations into a realm of my future and you represent the hope and evidence that it will come to pass.
“Only dreams are real and life is but an illusion” – Anonymous
I was diagnosed around the same time as you but the signs were a couple of years before that, thinking about it in retrospect. I have been blessed with a slow progression and thus far have avoided and g-tube and breathing assistance. I have lost all intelligible speech and use a power chair. Thank you for sharing your experience and inspiring us all,
Much aloha,
John
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Matt, I am 72 years old and so have met many people in my life, however I have never met someone as uplifting and strong as you. I admire you tremendously and have to say your wife is exceptional. I speak to your Dad at the pool and I can see what a great guy he is and as they say “the apply never falls far from the tree.” My prayers are with you always.
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Hi Matt, Shelbie used to dream she had full mobility so she could finally strangle me. :0
Your gratitude for what you have should somehow be put into the water supply.
Poet’s provide insight without answers, shades of gray which are left for the reader to reflect on their experiences from a new angles. For me I hear truth replaced by new truth. But we can discuss it in ten years, before we rack up for a new game of pool, pausing for shots of Wild Turkey. We’ll toast to the old truth that ALS is fatal. I’m so thirsty.
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A cross country trip in an RV? I highly recommend it! We passed through Kanab, Utah recently, and became acquainted with some full- time RVers , the woman has ataxia and they had a wheelchair accessible RV(in case you get bitten by the bug). Their blog is called “living on life’s terms”. They may be a good source of information, if any is needed.
Also, we have made the trip 4 or 5 times now, so we’re here to help, too….
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