While everyone celebrates our Nations Birthday today with family gatherings and firework festivities, Ive felt empty all day - I guess all week. Not simply because Hurricane Arthur chose to barrel towards our Family Beach House in Kill Devil Hills, N.C., but because we arent a family anymore. And Dad wouldnt be very proud of the way things have gone - over the last 18 months since he died. But thats a story for another day, and this is a story that is more inappropriate for our Nations Independence Day, July 4, 2014. Today Major League Baseball has touched my heart with a fine tribute honoring the 75th Anniversary of Lou Gehrigs Legendary Speech that still touches our hearts (even those of us, not yet born when it was made). In 1939, Lou Gehrig made a simple, honorable, dignified; yet heart-breaking announcement that still echoes in our minds that he was retiring from his heart, his life, his career in baseball to battle what I now know to be the most horrific, diabolical, crippling evil disease that exists today. Most people, I guess think Lou Gehrig rode off into the sunset and died quietly of the disease which would take his name. But thats not the case. It crept into every nerve and muscle of his mouth and head and spread into his arms and legs rendering him severely incapacitated until he was completely paralyzed and unable to swallow, talk or function as a human being. Having this happen to such a vibrant, strong, athletic man makes me think ALS choses its victims based on character because only the most esteemed human being could endure such depravity that it delivers. But the worse part of the story is that it leaves your mind in tact. It isnt as though you get sick everywhere and are out of it. Your body give out, but your mind lives on acutely aware of everything that is happening and eventually rendering you unable to even to communicate your needs. I know this because my father lived every hour, every moment and every second of his life after diagnosis fully aware of what nerves and what muscles were dying each day and dissolving his body. He knew that he soon would never be an architect or artist again right away. He knew he would never touch another thing or hug his grandchildren or build his home or work on his artwork, paint, design, walk, hunt or fish with his dog Skipper. He knew during those days that all he had was his mind and his memory and that is why I think perhaps music became his friend as it was mine when I began my career working for the Fort Worth Symphony and Van Cliburn International Piano Competition after graduating from TCU. Music is the essence of life and it brought him peace in the end I believe, but it only brings me agony and I no longer listen to music or play my piano so I do not remember. I dont want to think about how he suffered with the knowledge that at any moment his body would stop but his mind would continue. Wouldnt you rather just be unconscious? Having suffered a brain aneurysm in 2008, I dont recall that horrific event. But Lou Gehrig and yes, James C. McCulloch, my Dad and my hero were cut down by the cruel enemy disease that attacks brilliant, perfect people that have done nothing but live and are rewarded with the misery of ALS! Then these wonderful human beings are allowed to live through a slow, painful, fully alert death without the ability to clearly communicate their needs, although they are fully aware of what they want, but their body cannot process their thoughts to manage the process of asking for help or food or a hug. There should be a worldwide focus to eradicate this disease because it EXISTS and it has taken so many brilliant people far too soon. It doesnt matter if it isnt cancer or heart disease. Usually ALS patients suffer from ALS and another disease for some reason (my Dad had heart disease and beat cancer which both worked to mask his already apparent ALS symptoms ten years before he was diagnosed). I loathe, this disease. I hate it with every ounce of my being and I enjoy calling it my enemy. It is a demon disease that respects no one, not an athlete, not a world-renowned artist, not a famous man, nor a father. When it decides to rear its ugly head and become vocal and attack (usually after the age of 45-50) the body has no way to fight it because it is too late. So there is no way to research its causes, symptoms or possible cures because the damn thing is so vicious you dont even have time to be researched, find research and well to even GET HOME! Then it delivers a slow, painful and excruciating death which could force you to become incapacitated so quickly that your caretakers arent aware enough to get you where you can be treated and then you are stuck in a place that my Dad enjoyed visiting - like the Outer Banks of North Carolina, but where they know more about hang-gliding and growing corn more than they even understand how to treat a catastrophic disease. It takes your capacity to be human and it has taken mine also. When my father was diagnosed with ALS or Lou Gehrigs Disease, I now know that he had been grossly and unconscionably misdiagnosed for years by family and physicians. And those were the years he needed to fight this thing. So it was over when it started which infuriates me. I cannot count how many times I spent hours rubbing Dads neck or watching him battle headaches, muscle aches, soreness, weakness and other conditions everyone dismissed as symptoms of old athletic injuries or associated with his laboring over draft tables and architectural desks for years and years. I recall not to long ago staying up with him after he awoke me moaning and crying for no apparent reason, and he said he had terrible dreams and couldnt explain his emotional outburst. I now know these behaviors along with other obvious symptoms are indicative of the onset of the final stage of the disease that took him so quickly he wasnt able to get back to Texas and go home to die. To be able to enjoy the wonderful ranch house he had designed and built by hand himself where he fed the turkey, the deer, hunted during season, fished constantly and enjoyed the wonder and majesty of Indian art in dwelling caves mostly untouched by man across the pristine blue Devils River. How could we family, we believers that all things are possible, we stupid, uneducated caretakers have been better prepared and able to realize that it was urgent and necessary to get him to Texas where he would have received the best care in the world since he designed every major hospital in Texas and had access to those facilities and leading doctors and researchers - specifically Dr. Stanley Appel, a pioneer in fighting ALS and Head of Neurology at Baylor College of Medicine in Houston, Texas. What should have been a brief sojourn at OUR family beach house became his coffin. A man dedicated to healthcare architecture forced to live his final months in a beach house so ill-equipped or simply NOT EQUIPPED to provide the type of accessibility and design to allow him a comfortable dignified existence that only a care facility - necessary for ALS patients could provide. So the ambulances came and went on a daily or weekly basis and he continued to attempt to live and suffered a plethora of incidents or accidents associated with being his surroundings and need to ambulate in a non-ambulatory home. The only way downstairs was in a gurney and the only way upstairs in what we call the beach box was the same way. Im just happy my Mother was able to be where she wanted to be during those final months, in her home state, since she was so incredibly brave and strong. It was thoughtful how Dads obituary tributes focused on my Mothers stoic bravery in the face of Dads anguish. But what about the man? Where did the memorial to my father go? Perhaps, I am sure my Dad wanted her to be happy and made no complaints about the accommodations except to me in private because he always wanted my Mother to be happy in the face of despair. I know that is what he was thinking! I simply find it ironic that Dad was a healthcare design expert, ending up so far from his hospitals. I recall, having worked for him for many years, his concern for even he most innocuous design elements in a hospital setting - that served the patients and the caretakers as he would say time and again. Thats how he felt about design. And he made this functional design beautiful. His hospital designs stand strong today all over Texas - a statement to his the man and his mind and his brilliant foresight in functional artistic elements meeting customer needs. As I sit gratefully watching Major League baseball honor Lou Gehrig and shine the spotlight on the disease that needs that research money so badly, I also fondly remember how my Dad made sure we had season tickets to the Texas Rangers all through the 1970s. We would spend July 4th in Arlington at the ballpark where Dad kept the seats his mentor, famed Architect, Philanthropist and Fort Worth Icon, Preston M. Geren (Presten M. Geren & Associates, Architects & Engineers) in Fort Worth had bestowed upon him after he was given an architects dreamy job of designing the home of Texas Rangers Owner, Brad Corbett. Mr. Geren loved my Dad and he loved him and he polished Dads abilities by giving him exciting opportunities to be creative as perks to focus his skill sets on the more mundane, but so important institutional design focus badly needing talented young artists like my father whom would contribute so much to the industry with his style. Its odd to think that my love for major league baseball was delivered to me by my fathers incredibly generous employer when no one else I knew was able to attend all the Ranger games during the heyday of Billy Martin, Toby Harrah, Jim Hargrove, Jim Sundberg, Pepe Tovar, Jeff Burroughs, Roy Smalley and so many other gentlemen players if the mid 1970s that remind me of a time when sport was fun but still honorable. I find it ironic that today Major League Baseball is honoring the 75th Anniversary of Lou Gehrigs legendary speech in 1939. Today my Dad would be 78 years old. I know now that 78 years old is still very young and Dad was so strong until the end, he is too young to be gone. But I know he would be enjoying this baseball game and events surrounding Lou Gehrig, and I wish he were here blissfully unaware of any of the symptoms Lou Gehrig endured. How I wish he were here smoking his barbecue and drinking beer with me and getting drunk and laughing while we fished at Blue Hole our FAMILY house on the Devils River. And I still see him with Skipper his beloved Golden Retriever heading down the road on his tractor to go do some work on some part of the property and then throw a line in or feed the turkeys. I would have never guessed that our baseball summers in the 1970;s really did foreshadow things to come. I delight in recalling those fun-filled nights sitting in the Geren reserved seats right behind home plate watching Hank Aaron or Reggie Jackson at bat during those glory days next to my Dad. I was home and so was he. I was safe and so was he. There were so few things he was able to really enjoy, since we were also immersed in showing horses, something my Mother and sister enjoyed. I never did as much, nor did Daddy but he was a wonderful provider for his family. I guess it saddens me also, that it seemed that Dads rewards for good work presented to him by his mentor, Preston Geren. Like those wonderful season tickets to the Texas Rangers. The things Dad loved I think, were always overshadowed by all of the horse activities that he probably didnt enjoy as much as our days at the ballpark. But like Mr. Gehrig, Dad was a family man and knew when to exit with dignity. So today I miss him badly and find it painful still, to remember the good times. Its so hard to get past the devastation of his absence and his love. Please make a donation to Baylor College of Medicine ALS Research - in Honor of the James C. McCulloch ALS Research Trust.
Posted on: Fri, 04 Jul 2014 23:01:39 +0000
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