I just wanted to let you know that my dear brother passed away on the 6th of September. He suffered from a condition known as IBM—which is short for Inclusive Body Myositis for over 14 years that we know of, and probably for more like at least 20. I found out since then that one of my Internet friends has a cousin that also has that same thing; it only affects men usually in the 40s to 60s, and it is a wasting muscle disease. My brother went from a healthy, strapping, muscular outdoorsman (he was that indeed!), to a man whose shoulders slowly started to stoop and whose stomach lost its muscle tone and more. Because of this, the disease that falls under the MD umbrella, but it only affects about 30,000 men in the USA. In our surrounding area, there was only one other case and he had already passed away.
I do want you to know that Steve loved life, and seemed to love it even more after he found out what he had. After he could no longer drive his truck and work, he drove his golf cart through the woods to (ahem! illegally cross the highway), and see my brother and me for a bit!. He had his beagle with him, and he was always smiling, and although we worried about him, we knew that some semblance of independence was so important to him. He had a cell phone which made us breathe easier.
Soon, it seemed, the golf cart was no longer manageable and he had to go to an electric wheelchair, and from there on, was in one for the rest of his life. Although his wife tried her best to get things from the MD association that would help keep him at home better, (and they helped a lot), eventually he agreed that he would have to go into a nursing home where nurses and aides could use mechanical devices to put him into and get him out of bed, and into the shower, etc.
His wife faithfully went to see him every day for a long time, but also had some serious health problems herself. She still, at his death, was going and getting his clothes and washing, drying and ironing them twice a week and taking them back ---even though their marriage was, well---not as solid as it had been. That is all I will say about that. I’ll just add that I don’t think we can judge someone until we have walked a mile in their shoes.
She, and his daughter, my brother and myself and our spouses (along with a continuing, amazing long parade of more family and friends) were with him his 9 last days. He had been in the hospital yet again for pneumonia, and a nursing home is a breeding ground for that— and for someone who has no muscles with which to cough anymore, and no resistance to fight off anything—that is tough. After talking to his doctor and his daughter, who is an LPN, and his wife, he had made the decision to “let go” after his doctor told him he would get no better and would continue to get pneumonia -- case after case of it, and antibiotics would no longer help. He decided to leave the hospital to go back to “his bed” in the nursing home, (rm. 135 – I’ll always remember it) and look out at the tree he had been looking out at for many years. He had loved to sit out under that tree, listening to his beloved iPod and greeting people as they came up..
Because he had no fat on him, and so little muscle, the summer was his friend and the winter was not. In the warm months, friends would bring him to the little Farmers Market/Gift Shop up the road from me, and he’d work their headset and answer the phone, taking orders for their bounty. It made his life worthwhile and gave him and so many others so much pleasure. People that didn’t know Steve fell in love with his smile, and his friendliness, his wisdom and warm listening ear. If they had a problem, he had time to listen, if they wanted advice, he would give it—but only if they asked.
He also had a Kindle which he could get on the Internet with, and finally created a Facebook page—which he came to enjoy a lot, and he often texted messages to many of us, I’m sure I am not the only one who saved all of mine, and will always save them. How he texted with his fingers so crippled, I do not know.
|Mama and Steve---early 2000s|
His wish, after he passed, was to be cremated and to have his ashes scattered in the local river that our family always fished in when we were children, and, when he was able to, as an adult.
On Oct. 6, in the next town to us ---which is a little larger, there will be a celebration of life—--a going home celebration--—for him. There is a little place on the river, where, on Thursdays nights in the summer and fall, there was a musical get together for all ages. That, and Heritage Day and the County Fairs--- all those kinds of things where lots of people would be—were Steve’s joy!
He asked that no flowers be sent, but that anyone that wished to do anything in his memory ---would donate money to the downtown association that puts on the Thursday Night, “WE BE JAMMIN” musical shows and little hometown parties on the water. They include all music from Bluegrass to Jazz, and Gospel to Hip Hop~ to Country---and any I’ve forgotten! It was about the joining together of people, where he could find friends and smiles, and exchange talk with folks of all walks of life.
The donations will keep the “music fests”, as I call them, going for quite a good while, I hope--- although he did not want his name associated with it in any way. I feel sure, somehow, it will be, though.
I am not at all comfortable in crowds like this, but I will be there, doing my very best to be smiling and enjoying the music as he would want his little sister to do.
My husband and I did sing for him –just the two of us, in his room about 3 days before they started to give him morphine every hour. We sang a song we’d sing in the choir a long time ago called, “GOD BE WITH YOU TIL WE MEET AGAIN”…his door was closed and we sang very softly. He opened his eyes and smiled at us, and said “thank-you~!” It was one of the most precious times with him that 9 days.
Not only will he be missed by me and my brother, our spouses and his daughter and wife---there are so many, many people that have written us to tell us of their relationships with him at the nursing home, or the music fests, or his church, and the Market—many, many people and places! There were people from ages 5 to 95 who would text him just to say, “I LOVE YOU!”, and as I said—he thought as much of them as well.!
Thank you for listening. My brother was born 8/3/1944 and passed away 9/6/2013. He was the most courageous man I have ever known. Iwill always love my brother, Steve.