my little brother, Bill

English: The NGC 2024 the Flame Nebula in Orio...

English: The NGC 2024 the Flame Nebula in Orion Credit:Davide De Martin – http://www.skyfactory.org (Photo credit: Wikipedia)

tonight i am thinking of my brother, Bill

and how i miss him from this life

it is two months today since he has  gone, leaving me with no fill

tears are falling and my heart feels cut like a knife

then i happened upon  an old Inuit tale

that said that perhaps the stars are not stars

and i became still and very pale

but i read on and heard the stars are openings from afar

where the love of our lost ones pours through

their light is shining upon us to let us know that they are smiling

and we never have to say adieu

  they are tiptoeing through the night sky dancing

Planetary nebula NGC 5979

Planetary nebula NGC 5979 (Photo credit: Wikipedia

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My brother, Bill, was fifteen months younger than myself. He died less than a month before his 62nd birthday. He died from myotonic dystrophy, a genetic disorder that is much like muscular dystrophy. The disease is characterized by muscle weakness and a gradual death of nerve cells within the body organs.  With my brother, his speech became more and more slurred, then he could no longer swallow, as the epiglottis no longer functioned, and the food would travel down his windpipe, rather than the alimentary canal. This resulted in respiratory problems and pneumonia. He eventually chose to be tube-fed. He had great difficulty walking, as his muscles would contract and then not release. Then his ability to breathe lessened and he was nearing the need for a ventilator, but his heart gave out before that could be placed.

Bill was a very unassuming individual. He went about his life quietly as he matured. When we were kids, he would always play the Catholic priest and give us Stark candy circles for communion. He had a talent for drawing that was curtailed with his muscle degeneration. He was kind and helpful to others and would often give a room to someone who needed a place to stay. Bill did not advertise his generous nature, but if he saw that you needed something, one day it would appear in your mailbox—as he did for me after a visit, and noticed my cooking utensils were dull and few. A week after he visited, a block of sharpened knives appeared at my front door! I have heard similar tales of his generosity.

This disease is so strange…when we were growing up together, it was not noticeable, except for his tiredness during the day, and his inability to sleep at night. This turns out to be a symptom of the disease. Bill enjoyed elementary and high school–and was in the US Army in the paratrooper division when the disease manifested itself. Around the age of  27, the myotonic dystrophy ballooned! His walking and speech became increasingly difficult, and he was honorably discharged from the Army.

He eventually moved to Missouri and then Kansas, where he met Harriette, his wife of the last ten years. I was happy for him that he found someone he could love and who loved him. He deserved that in this life.

I was able to see him in January in Kansas, as he had to go to a nursing facility. My older brother, Claude, and his wife, Kerri, were kind enough to take me with them to visit him for a week.  But you know, that week was not enough! What amazed me so, was his calm way of preparing everything so that Harriette would not have difficulty in taking over once he left us. He went about it so diligently and without any pompous noise. He just did what he had do in such a  matter-of-fact manner. He didn’t worry about leaving or fear his death—his only concern was to make things easier for his wife. Even in his last days,  he was so giving. I wonder if I could be like that!
I do miss him and guess that is just one more person I will have to look forward to speaking to when I am in that next place…nevertheless, the tears are many and often…still….tears in between the tears.

We also lost our sister, Barbara, to the disease three years ago. There are 16 people among my siblings and first cousins who have the disease.

Related Article:

http://www.genome.gov/25521207  Learning About Myotonic Dystrophy

23 thoughts on “my little brother, Bill

  1. clarabetty says:

    Thanks for sharing the poem -the Inuit tale-what a nice thought to think that our departed’s souls are the stars shining down on us.And thanks for sharing about your brother life and his illness. I’m sure it was not easy to do., but should be healing. I am thinking about sharing about my husbands dying, This month will be a year since he went in the hospital (May 11) and then went in nursing home and fell and went into a coma (May22) and was pronounced dead after 3 days – May25, at 5:25.

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  2. Beautiful Jane. Thank you so much for sharing this with us.
    I am so sorry about your brother. I know how you must be missing him, I still am missing my big brother every day.
    I am sending you lots of love and hugz again! ❤
    Stay strong sweet friend!

    Like

    • lieve Patty, ja, ik weet dat je begrijpt …. we dezelfde soort pijn en verlies te delen. Ik waardeer uw vriendelijkheid zo heel veel! Je bent een mooie, warme, medelevende mens — als een van mijn goede vrienden zouden zeggen, je een lichte ZIJN! Je brengt LIGHT om anderen met uw woorden en uw verhalen — en wat nog belangrijker is, omdat u de gave van jezelf in de waarheid dat je bent!

      dear Patty, yes, I know you understand….we share the same kind of pain and loss. I appreciate your kindness so very much! You are a beautiful, warm, compassionate human being— as one of my good friends would say, YOU are a LIGHT BEING! You bring LIGHT to others with your words and your stories—and more importantly, because you offer the gift of yourself in the truth that you are!

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  3. Yoshiko says:

    I’m sorry to hear about your brother. He is indeed a generous brother. My condolence to you, your family and his family 😦

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  4. Mary says:

    Beautiful writing. Very sorry to hear of your brothers passing – ugly disease striping one of their dignity. He was blessed having you as a sister.

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    • Yes, it is an ugly disease…I have seen it ravage the bodies of both Barbara, my sister, who died at 63, and now Bill, at 61. The sad truth is that when they were children, both were always very tired—and so misunderstood because of it and ridiculed because of their fatigue in school. At that time, the disease was still undiagnosed and even today, many doctors are unaware of its existence. I also remember once when my sister came to visit me from Colorado, and she got off of the plane, people looked at her with disgust and one made a comment that she should “not drink” on the plane –she was NOT drunk—she was too proud to use a cane or wheelchair— her balance and walk was off because of the disease. Both Barbara and Bill suffered from members of my own family who did not understand the disease and who would make judgments about them. Even after I would try to explain the disease to them, they would STILL hold to their stubborn opinions. I have seen judgments of them because of this “hidden disease.” My family is of German heritage, and very strong in the “work ethic”…in my large family of eleven, there are racists. What is interesting, both Barbara and Bill married partners that are of African American heritage and Native American. Terry loved Barbara and Harriette loved Bill with a depth that is often missed by many marriages. Both stayed with them through their diseases. Barbara and Bill could NOT have found any better partners!

      I will never feel that I did enough for either of them. I miss them both so much! They were always accepting of me and ALWAYS ALWAYS ALWAYS would respond when I would call them to speak to and they would always help me if they could.

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    • thank you for your very kind words and sympathy.

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  5. Sorry to hear about the brother……….
    like cumulonimbus cloud,
    you are carrying tears & pains with you.
    still, you are maintaining little smiles ,
    really, a great thing.
    in fact to say that This is the state of Stithi Prajna Yoga .
    Embrace the feet of Lord of Universe
    He will give all strength & health to your mind & soul
    with regards
    advocatemmmohan

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  6. Mich Smith says:

    It’s wonderful and so touching!!

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  7. I am so sorry for the pain your brother had to go through! its so heart breaking to see a loved one suffer like that!

    May peace be with him and your family. That poem you shared is really really peaceful!

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  8. Nancy says:

    You are a very lucky individual. You got to spend time with him…….where there are alot of people who never get to be there at the end with their loved ones. Hugs My Friend.

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    • Yes…I was fortunate and blessed…Hope you are doing well, Nancy. I haven’t been on Facebook for a long time. I am DONE with politics…I see it doesn’t matter WHO WINS…they are the Kings and Princes…we are the serfs and peasants…and the 1-2% do NOT relate to us at all! So…I have taken to surround myself with poets and artists…to comfort and calm my soul.

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  9. My condolences for your loss. Bill sounds like a wonderful brother. I do love your poem and the Inuit tale about the stars being openings for our loved ones to continue to touch our lives.

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  10. My deepest condolences, Jane. So sorry to hear about your brother Bill and sister Barbara. it is quite distressing to know that this disease is in the family and that so many people have succumbed to it.

    My prayer is that you will be spared. I also do believe that prayer can help break this unfortunate trend, my dear friend 🙂

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    • Hello Celestine, thank you for your kind words and prayers! Well, I do not have the disease. However, another older sister does have it, and so does her son. Then I have an two older brothers who have several of the symptoms. There were eleven children in our family…four have now returned to the Creator, with my parents. I do not know if the two oldest carried the disease–since they died long before the disease was discovered. Out of the eleven, 5 siblings had it and 3 are still living with it. Many doctors are just beginning to understand it. My sister and brother were not diagnosed until 1978. Up until then no one seemed to know of it. Even when I mention myotonic dystrophy now, I have to explain it to the doctors. They have a blank expression! The nursing facility that my brother spent his last months in — I firmly believe they did NOT understand it. If they had, they would not have suggested some of the last ditch efforts at treatment for my brother—which only made his death more painful. I miss both Barbara and Bill…they were closer to my age…I just have felt very lost these last three years. My Mom died at 94–she was with me a very long time and I was fortunate to have had her in my life for 60 years–but now the emptiness is great! Three gone so close together. Then I think of the many people who have died in Syria and other places of war and human cruelty — how dreadful it must be for them –and still, they have the courage to go on. So must I. Thank you again, Celestine, for your sympathy!

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