In memory of Hobie Greene
There are many reasons why I was deeply touched to received and share the letter below.
Some are of course beyond reason, they are of the heart.
But surely what was clear to me was when Hobie was diagnosed, and began his struggle, the people around him who loved him profoundly each came from their own heart’s path.
Some turned to science, others to natural cures, others with prayer but, all again, with loving.
And it with love that I post this.
And share it.
And hope it will be a strength to others.
Be a GPS for your Soul.
I would be honored for you to post anything about our fight with ALS! Thank
you so much . As you and I both know first comes awareness then comes the
God Bless you
Over the past year I have been keeping up with the lives of many ALS victims I have been encouraged and saddened by many experiences that I been exposed to — It is now time for me to share my story – I hope it can help encourage, prepare or comfort someone during their journey with this unfortunate disease we know as ALS.
In memory of Daddy (Hobie Greene 7/17/50 -1/12/10)
In 2007 my daddy’s thumb started twitching uncontrollably, early in 2008 he begin having mild cramps in his legs, hands and feet. In the later part of that same year these same symptoms along with fasciculation’s (muscle tics) in his arms and shoulders progressed to a point that he felt the need to visit his doctor. At the first visit his doctor told him not to worry, all her older patients had these same symptoms – it’s just the aging process, at age 58, he thought “Am I an older patient?” Nevertheless Daddy continued to go see this doctor until she referred him to a neurologist.
Early 2009 was my daddy’s first appointment with a neurologist. The neurologist he went to see seemed to be (excited) that this could potentially be her first case of ALS. This was also the first time that anyone in our family had been exposed to this horrific acronym. At this time, my mom, my husband and I begin a relentless study on ALS. When we understood what ALS was, we quickly decided that my daddy could not possibly have this cruel disease; I guess we were in a state of denial. We researched other possibilities and we continued to be faced with the possibility that he indeed had ALS.
As daddy’s symptoms slowly progressed he continued to see his local neurologist. He endured several tests including and EMG which he said was the first and last one he would ever have. We did however realize that this could be related to the fact that he was in the Air Force in the early 70’s. I couldn’t understand it, I thought if he made it out of the Vietnam era that he would not be one of the casualties of war. I was wrong.
Our first visit to an ALS specialist was in March of 2009 and we were still not convinced that my daddy had this disease. Before the appointment, we all believed that we would be going to see the specialist at Vanderbilt so that he could tell us that we (my daddy) did not have ALS. We prayed together and held on to every ounce of hope we could muster. My husband went with my daddy to his appointment at Vanderbilt and I so vividly remember the phone call after the appointment. My husband said the doctor told my daddy that it indeed did look like he had ALS. My daddy told him to say what he wanted to but he did not have that disease, He rebuked it three times in the name of Jesus; yet this was the turning point for our family, and this is when our fight begun. A quote that kept going through my mind is “The full value of this life can only be got by fighting; the violent take it by storm. And if we have accepted everything we have missed something –. This life of ours is a very enjoyable fight, but a very miserable truce.” Gilbert Keith Chesterton
Our awakening day, this is when we began to try and see how we could fight this disease. My mom immediately went down the holistic path and had my daddy taking everything from antioxidants to whole body cleansing systems. I started down the path of prayer, adding him to prayer lists and reading the word of all the promises God has made to us. In desperation for a brief moment in time I even considered praying to anyone or anything that might answer my prayers, I thought about Buddha, Ali, and even paganism Gods. My husband who firmly believes in modern medicine started looking for the most logical therapy and had identified several treatments. The first possibility was a drug called IPLEX; the only problem was the company who produces the drug had stopped manufacturing it due to a patent related issue. After researching many different trials for ALS through NIH.gov and ALS.org we discovered that Emory University had just announced a new trail with stem cells. The initial lab trials using mice seemed to be very promising, we finally had hope. It took no time for me to get my daddy an appointment with Dr. Glass at Emory and we had full intentions on getting him into this stem cell trail.
On December 1st of 2009 my husband and daddy were on their way to Emory so that my daddy could get included in this promising stem cell trail. Since my daddy has had this disease he has refused to give into the aches, pains and exhaustion that accompany it. He also had not accepted the fact that a Cane could make walking easier for him. Upon arrival at Emory my husband dropped my daddy off at the front door of building A where he could rest and wait on him to park. Daddy still refused to use a Cane and would not hear of using a wheel chair, so he began his trek to the waiting area. My husband said this was a painful sight and that my daddy had to use the wall and every bit of strength he had in his body to make this 150 yard journey. Once he arrived he was winded and sweating profusely but he proudly stated that he made it. He knew the importance of this trip and wanted to show the doctors that he was a fighter and had no intentions of giving up. He wanted to prove he had the strength, willingness and commitment to make this stem cell trial a success. He did not know his courage, strength and will to beat this disease would be the very reason he would not be accepted into the trial.
During the appointment at Emory, my daddy was told that he was too healthy to participate in the safety trial. Dr. Glass said he could not ethically run the risk of paralyzing a man that could walk. I believe that my daddy knew his only hope for conquering this disease was the possibility of stem cell treatment and he was a broken man when he returned from his appointment at Emory.
At the beginning of December 2009 my daddy had a chest cold. In the following weeks his chest cold turned into a pneumonia that he fought diligently. On January 6th I went to see my daddy at home and his pneumonia was obviously worse, I pleaded with him to go to the emergency room and he said he did not want to go because he did not want to die in the hospital. He wanted to stay at home where he could be with his family and the pets. I made a promise to my daddy that if he went to the hospital I would make sure he got back home.
At 4pm Wednesday January the 6th we arrived at the ER with the intentions of curing the pneumonia. The ER doctors believed there were other issue than just the pneumonia and stated that my daddy needed to be put on a ventilator to save his life. At first my daddy refused to be put on a ventilator and my husband and I pleaded with him to at least give it a chance; he agreed to three days on the vent. During this time the doctors still felt that the pneumonia was not the issue. That evening at 9pm my daddy was placed on the ventilator and transferred to the intensive care unit at the Johnson City medical center. That evening was tough for our entire family. My husband decided to stay the night with my daddy and said it was not a pleasant evening. My daddy woke up from the sedation three times that night, and my husband described it as the worst fear he has ever witnessed. My daddy woke up not knowing where he was, having a tube down his throat, and his hands bound to the bed. The look of fear was all over his face, he was begging my husband to pull the plug, two other similar events occurred during the course of that 1st 24 hours.
On the second day in the ER I spent the night with daddy and he was sedated the majority of the time. However, in his moments of consciousness his was angry that he was on the ventilator; nevertheless this was the most rest my daddy has had in three weeks.
Friday January 8th 2010 was the 2rd day my daddy was on the ventilator. This was the day daddy gained consciousness without being combative. I was standing by his side and could see his dissatisfaction with his hands being bound. I ask the nurse if she could remove the straps from his hands and she said only if he would promise not pull the ventilator out. I ask my daddy and he said he would not and daddy has always been a man of his word. The nurse released his hands and he held them to heaven and I know if he could speak he would say praise god.
Saturday January 9th was the 3rd day my daddy was on the ventilator. By this time the critical care doctor was sure the ALS had progressed to a point that created weakness in his abdomen muscles and his diaphragm. This was also the day that daddy said he wanted off of the ventilator. The doctor explained the muscle weakness and that his complications were most likely due to the ALS. He also explained to him that once the ventilator was removed there was a high probability that he would fall into a coma within the hour and would succumb to complications created by ALS within 24 hours. My daddy insisted on having the ventilator removed. Upon the doctor leaving I sat by my daddy’s side and told him I was scared, and he in his witty humor said “you’re scared! What about me!” — I still had one more promise to keep; I promised him he would go home.
The ventilator was successfully removed at 3:45 pm on Saturday January 9th and my daddy was able to talk for the first time in three days. He was so focused and reaffirmed his position with prolonging his life. He was good with God and was ready to move on. Daddy was transferred to a standard care room and was in and out of consciousness; in his moments of clarity he comforted me like my daddy has never done before. My daddy had no fear of his future at this time; he only wanted to comfort all of us he loved.
On this day he shared with me a beautiful experience he was having. He was completely coherent; he was looking at the corner of the hospital floor and said “Hey, you know the light that everyone talks about? Well there is a light but it’s not white. It’s yellow and green, it doesn’t sound pretty but it is; it’s beautiful and warm there, I feel love there.” As I gasped with tears, he continued on. “I see my mom it’s like she waiting on me.” He said. A few hours later still coherent he is looking at the wall grinning. I asked what he was looking at and he said laughing “I see me, I am about 23 years old and I have a fishing pole and there is a beautiful river.” I then had a renewed faith in God. Even through the anger and betrayal I was feeling from him. Thank You Daddy for that, it was the last gift he would give to me.
Sunday January 10th was the fourth day my daddy was in the hospital. This was the day I had to get my daddy home. That morning the doctor arrived and explained again to my daddy that there were two paths that he could take for treatment. The path of recovery would consist of being placed back on the ventilator, and receiving heavy doses of antibiotics. The comfort path would consist of no ventilator and no antibiotics; he would simply be given medication to make him comfortable in his last hours. Daddy said he thought the ALS was the issue and he just wanted to move on. The doctor agreed with daddy and explained that the ALS had progressed to a point that the abdomen muscles and the diaphragm were weakened. He continued with that if he chose the path of recovery that he would more than likely be in the same condition within the next days, weeks or month. Daddy made the decision to go home to see his dogs and rest in the comfort of his home.
Monday January 11th I was able to keep my promise to my daddy and he got to come home at 8 pm that evening. He was able to rest on his couch at least until the hospital bed arrived. He got to pet his dogs, watch his TV, and play with his grand boys one last time. I left my daddy that evening with a smile on his face.
Tuesday January 12th, 2010 I heard the phone ring around 4:30 am, my husband got the phone. I knew what it was, my daddy passed away that morning due to complications from this horrendous disease we know as ALS.
Daddy was the bravest man I will ever know; he faced death with a smile. ALS or “The Beast” as I refer to it now may have taken my daddy from me but we fought the battle together. I will continue this fight for the rest of my life for you, your loved ones and the ones that we yet know.
God Bless you all, and Fight this “Beast” with every fiber of your being, never give up, I’ll be here for you if you ever need me.
“If you are going through hell, keep going.” Winston Churchill”
With Love to all my new family,
Melissa Bennett (Hobie’s Daughter)