This Rambling Man was diagnosed in 2004, and continues to be challenged by ALS. In my life I have had my share of dark days, but none darker than Jan., 2004, the day that three letters changed my life. ALS is an abbreviation for Amyotrophic Lateral Sclerosis, commonly known as Lou Gehrig’s disease. I was diagnosed with Familial ALS, which means basically there is a family history of this disease. I was tested for the SOD1 inherited gene, and it was not found. Familial ALS constitutes 5 to 10% of all cases of ALS. There are a number of different types of Familial ALS. I am approaching my ninth year, and have new and different ways of managing ALS.
I have removed my shoes, and surrendered the pen. To walk, I use a power wheelchair, and to write, I use voice recognition. I have witnessed the devastation that ALS inflicts on its patients, caregivers, and families. ALS pushes me onward with patience and courage while forcing me to challenge every day hurdles. Currently I am in the intermediate stages of meditation to relieve the stress of ALS that could influence or change this journey.
I Ramble … ”I look to my inner self where I see a vessel in clear blue waters, navigating slowly through a dense fog waiting for the Sun to rise, and make clear my Spiritual Authentic Self.”
When Thorns Become Blessings
I must admit that in the eight years since my ALS (Lou Gehrig’s disease) diagnosis, I have been a bitter man trying to understand why this happened to me. After years of struggling, in and out of faith, the daily challenges of a marriage, raising children, and constantly grabbing at my economic wants, I have ALS. Just when life was getting wonderful, I have ALS.
Recently, I have been trying to make sense of all this while accepting the fact that there is no cure. I was hoping that somewhere, someone had written some sort of guide-book to go along with this unpredictable journey. Please understand that by contracting ALS I have joined a group of 30,000 and my final days are in front of me. Therefore, I turned to the Holy Bible to see if there is an explanation that speaks of terminal illness and the ever popular “Why Me” question.
In my religious quest, I have scanned, searched, asked numerous questions and there seems to be a positive answer and verse for everything. Some Christians give some pretty strange answers to the question of “why.” Things like, “you didn’t have enough faith.” Others like to add things like, “Claim the promises of God and He’ll heal you.” Some people have even been bold enough to say, “you should have relied more on God.” Some religious groups still believe and practice the “laying on of hands” to remove illness.
I remember a sermon given by a minister, many years ago, who was diagnosed with ALS. This once vibrant, outgoing pastor was losing his muscle strength and swallowing abilities. Why him, and why was his service to God interrupted? One of his testimonials was that God gave the apostle Paul a “thorn in the flesh,”, and even though Paul prayed for relief, God left Paul to live with this illness for the rest of his life. The discussion continues that the thorn may have been a symbol used to represent any illness. I think the strangest explanation comes from 2 Corinthians 12:7, that your illness (thorn) was a gift from God. A gift that allowed Paul to experience God’s grace, presence, and power in ways he would have never experienced otherwise. Coming from the pulpit this proposition probably delighted many religious ears. The idea that we need to experience suffering, sickness or terminal illness for the reward of faith is simply hard to fathom.
As a young man attending Sunday School, I was brought up obeying and living by the 10 Commandments. Most Christian Bible scholars believe that to understand the Old Testament you must believe in the New Testament. I understand the reason and the parallels of the two, but the 10 Commandments, if followed faithfully, could guide each of us in daily life. Why did it have to become so confusing? Heaven sounds like the ultimate answer, but I’m looking for real spirituality for the here and now, to touch and feel right here on earth. I’m not looking for a better place after I die, I’m looking for that better place to reside in me now. I have ALS, my days are numbered.
Within the last decade the terms “spirituality” and “religion” have begun acquiring new and different meanings. Today we define spirituality as “the feelings, thoughts, experiences and behaviors that arise from a search for religion.” Spirituality contains elements of any community and can arise from experiences with people around you and your relation with them. This explains support groups for every disease, and alcoholic anonymous groups where everyday people reflect and express ways to solve problems. The spiritual life tries to impose a sense of purpose on the unpredictable randomness of life. The meaning of life deals with life purpose, inner peace, and the place of the person in the universe. The spiritual life also overlaps the emotional, mental, physical and social aspects of living. Could it be the remedy for anger, fear, anxiety, and pessimism? In small ways, aside from rituals or communal memberships, we are able to find comfort in our shortcomings.
It took a warm Saturday morning, five adults and three children for me to see this. It was a day my wife and I allowed a group of volunteers to trim bushes that were out of control. It was hard for me to accept the fact that these people, on their day off were willing to work through the morning for us. One of the crew approached with his hand stretched way out revealing fresh raw scratches from a thorn-bush. He wanted to thank me for allowing him the opportunity to invade our space and that he was the one gaining the largest reward from this project. Through this strange act of kindness I noticed that in my ALS weakness I found spiritual awareness of the human form. Basically, from my backyard I was sharing a spiritual moment, one without any religion. It took this small event for me to understand that the sufferings that come our way may have come so that we could see our authentic self, and are made spiritually stronger.
Being spiritual is the honor code by which we live. This is where I found comfort in myself and compassion for others. Spirituality opens the door to your inner intuitions and all living objects in our world. Religion has tried, and I think failed to block this concept. Rather than looking to some outside force to help yourself find the truth, one needs to discover the truth in one’s own spirit. We are born with it, it’s located close to the heart, and it’s human.
That minister I mentioned was my Father, who challenged ALS for 10 years. He had his method of coping with and dying of ALS. I however, live absorbed in the mysteries and beauty of the world without any resolve. I have found true Spirituality.