There was a time before ALS decided to take on my body when I thought the part of my body I would have the most difficulty living without would be my legs. I first began to think about this in a seminary class on death or grief when the instructor led us in an exercise to consider such. It was a powerful experience and as a result I used it several times in the local church. The question was usually phrased something like: "What part of your body would be the hardest for you to lose the use of and why?" I would then proceed to share with them my own reflection to model what I had in mind.
I usually began my reflection by commenting on the difficulty I had adjusting to the reality that I was no longer able to work out a minimum of two hours a day. For ten years of my life that was my reality. It all began in Junior HS and then continued through HS and college. Two hours every day! And much of the work was on my legs. I depended a lot on my legs in the sports I competed in. Sprinting, long jumping, high jumping, stopping and starting and jumping on the basketball court and football field meant I needed strong legs and I had them. In some ways they made up for the deficiencies in other areas of my body. I will confess to being a little proud of how strong my legs were, maybe even a little vain. I worked them hard. They got me the attention I craved. I could run fast and I believed it was partially because of my leg strength.
Early in the spring of my senior year, my high school attended one of the area's top meets - The Toledo Blade Relays at the Lucas County Recreation Center in Toledo, Ohio. It was a very cold and damp day. I ran a 9.8 in a semi-final heat of the 100-yard dash. It was the second fastest time in the state at that point in the season and the second fastest qualifying time of the day.
A short time later, while running in a qualifying heat of the 220-yard dash, about midway through the curve, a pain in the back of my leg sent me high into the air and off the track. The pain was accompanied by an anguished scream. I had torn my hamstring. I foolishly attempted to run the 100-yard dash finals. It never quite healed enough for me to be competitive the rest of the year - I didn't even make it out of the districts.
God and I had a lot of talks that spring - every night in fact. Not that that was unusual. I'd been a nightly devotions kind of guy for a number of years by that time. It's just that the conversations were a bit more pointed - included a lot more emotion than normal. "Why, God?" "Why me, Lord?" The questions were a lot more plentiful and clearer than the answers.
Now, well meaning folks - teen friends and adult religious types alike - offered their words of intended support and encouragement, sometimes even attempts at interpretation of my reality and disappointment: the clichés we've all heard and maybe even regretfully offered ourselves - God's will, won't give you more to handle than .... It was for sure one of the experiences that began to unravel the popular religious notion that if you're a believer everything will be good in your life - everything will go your way and you will always be successful. I'm not sure I can describe where or by whom I was taught such things. I probably just picked it up reading between the lines of those around me. Today I would just say hogwash to such an understanding. But back then, I struggled.
Another benchmark leg experience in my life was a time in my thirties when I tore my anterior crucea ligament while playing in a basketball tournament some of the younger guys from the church were playing in. This one didn't cause as many theologically challenging questions, but it did change my ministry and lifestyle. No longer was a central aspect of my youth ministry going to be able to include an active, hands-on focus - no more rough-housing with the guys on a basketball court - no longer was I going to be able to concentrate on staying in shape by playing ball and running. One of the ways I dealt with the change in how I saw myself was I agreed to be appointed to a church as the solo pastor and preach every week; thus, for the time being at least, ending my being a career youth pastor. (Please spare me the comments about God causing me to tear my ACL so that I would heed the call to preach!)
Then came the summer of 2009. We were on an adult mission trip on an Indian reservation in South Dakota. It was the third time I had led a trip to Ft. Thompson. Something was different though. My legs didn't seem to be able to endure as much as they had in the past. I explained it away in my head as I'd aged in the last year. But, privately and sub-consciously I knew it was more serious than that. I struggled all summer to walk without tiring easily. It was 14 months before we finally received the diagnosis of ALS - Lou Gehrig's disease. During those 14 months I felt it happening, my legs weakening. I was easily exhausted when I walked. The dreaded was happening - I was having to face the loss of the use of my legs.
(Now, I've shared all of the above in preparation for what follows.)
Something else was going on at the same time I was losing the use of my legs, not as obvious to others at first, but obvious to me. I was having difficulty breathing. With time, we learned it wasn't my lungs but my diaphragm. Preaching became more and more of a challenge. I quit singing the hymns in order to have enough stamina to get through the sermon. (Do I need to again ask you not to be tempted to comment that God was trying to get me to stop preaching!)
Friends, experiencing the loss of my legs has been difficult. There's no question about it. It's just as hard as I anticipated it would be. However, let me share this with you: it doesn't come close to what it feels like to struggle to breathe - to not be able to eat the amounts of food I used to eat or carry on a conversation or be in large crowds or be romantic with my wife or discuss controversial issues without being able to finish a comment I need to make.
"What part of your body would be the hardest for you to lose the use of and why?" New answer. That little diaphragm muscle is a pretty powerful and awesome muscle! It's been the toughest one for me to do without so far, let me tell you! I know I'm going to lose some more. The other losses seem to be going a little slower. (I'm still typing but the fingers do argue more than they used to!) Compensating for some of the others may involve even more creative solutions.
Peace and Blessings upon you all and on your life journeys!
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