It's been a while. I guess you could say we have been busy. Busy doing our best to adapt to the swift progression of ALS. We are exhausted. It's been almost four years since this all started and the mind takes a beating worrying chronically for that long. ALS does not get any easier, just the opposite actually. We survived the long cold grey winter. Cold and grey outside echoed what we were feeling on the inside. A hospitalization for pneumonia led to a feeding tube the week before Christmas and a low breathing score required the addition of a cough assist and BIPAP. The end result was further speech deterioration and increased weakness which took it's toll on all of us. The longing to curl up under a blanket and pretend it was all a dream became overwhelming and finding the positive took a back seat to the constant effort and energy it took just to get through the day. At clinic we talked about the possiblity of a tracheostomy. Bert does not wish to go that route, his wishes were officially documented in the medical record. Life expectancy was noted on some paperwork we had completed, the bold typeface read six to nine months; those words left a lump in my throat. There comes a point in a terminal illness when all that can be done is being done and there really is not a next step other than the obvious. That is a hard realization to swallow. The day to day act of a person physically battling a disease like ALS that steals all function and caregiving for that person is just so hard and tiring. The financial struggle is frustrating as ALS has stolen our careers. The emotional toll it takes is even harder. I hate to watch Bert losing control of his facial expressions, it hurts to see his body deteriorate before me eyes. I hate to witness his suffering, I ache for a hug but won't ever get one again because he cannot lift his arms. It makes me physically ill to witness ALS raid his body and rob him of his voice. Most of all it becomes grueling to live everyday in the present and push all the darkness out of the mind. Although there are many positives, the challenge lies in allowing in enough light for them to shine through. Sometimes we are just angry and disappointed that life's journey took this path.
Just as predicted life keeps moving, the seasons keep changing and spring is here; with it comes the sun and a second wind for us. It's ok to take time to feel, it's ok to be sad; we just can't let it last too long. Warmth and blue skies have replaced the cold grey. We are enjoying nature, taking up a new hobby of bird watching and gardening. We open the windows and accept that we are not in control. We enjoy watching our children participate in the activiities they love. We are thinking of the beach and a summer full of memories waiting to be made. Bert is having fun finishing up his last season of coaching soccer before retiring to the sideline. Our sense of humor and laughing everyday keeps the daily fight with ALS a bit more tolerable.
Twenty plus years ago Bert and I watched a movie called Point of No Return starring Bridget Fonda. There is a scene in the movie when Bridget Fonda who is a transformed bad girl turned assassin is recieving a lesson in etiquette from a mentor played by Anne Bancroft. She asks Bridget Fonda's character what she does when she is uncomfortable, angry or scared, Fonda reponds I hit. Bancroft suggests that she smile and say something off hand, she suggests Fonda say "I never did mind about the little things." She makes Bridget Fonda say that phrase and she does so through gritted teeth. Later in the movie when an assassin job goes very wrong Bridget Fonda smiles and says "I never did mind about the little things." Years ago when Bert and I were dating, we attempted to cook a London Broil for dinner, it did not turn out so well; actually it turned out a little too well. As we sat at the tiny Ikea table in the stark white kitchen of his high rise apartment eating a crispy black London Broil on Acme paper plates, Bert looked at me, smiled and said "I never did mind about the little things." We giggled and over the years that quote became our mantra. It seemed to just take the edge off in situations out of our control.
One day last week after using the cough assist, dealing with a bloody nose and emptying an entire box of Kleenex , we moved on to the morning's tube feeding. After administering the feeding I began to flush the tube with water as I always do, I didn't notice that the tiny port on the the side had popped open, that is until the warm cloudy, sticky liquid trickled out all over Bert's leg and down the wheelchair. On we moved to the shower, I was going to give him one anyway. I transferred him to the toilet and adjusted all body parts to aim into the bowl. I began to clean up the mess in the kitchen and wipe down the wheelchair. I returned to the bathroom to find that things didn't stay where I placed them and a yellow stream ran down the toilet to a small pool of urine on the bathroom floor. Bert smiled a pursed lipped smile and in a soft voice slurred "I never did mind about the little things." Laughter followed as we wondered how we ended up on this crazy journey together...no time to worry about the hows and whys, a shower was in order.
I haven't given up hope or believing there is some reason we were dealt this hand to play. Bert believes and I quote "shit just happens." In either case when we feel like we are about to reach the point of no return we can just smile and say matter of factly "I never did mind about the little things."
#keepworkingtoalwaysfindthepositive
xoxo B&J
Just as predicted life keeps moving, the seasons keep changing and spring is here; with it comes the sun and a second wind for us. It's ok to take time to feel, it's ok to be sad; we just can't let it last too long. Warmth and blue skies have replaced the cold grey. We are enjoying nature, taking up a new hobby of bird watching and gardening. We open the windows and accept that we are not in control. We enjoy watching our children participate in the activiities they love. We are thinking of the beach and a summer full of memories waiting to be made. Bert is having fun finishing up his last season of coaching soccer before retiring to the sideline. Our sense of humor and laughing everyday keeps the daily fight with ALS a bit more tolerable.
Twenty plus years ago Bert and I watched a movie called Point of No Return starring Bridget Fonda. There is a scene in the movie when Bridget Fonda who is a transformed bad girl turned assassin is recieving a lesson in etiquette from a mentor played by Anne Bancroft. She asks Bridget Fonda's character what she does when she is uncomfortable, angry or scared, Fonda reponds I hit. Bancroft suggests that she smile and say something off hand, she suggests Fonda say "I never did mind about the little things." She makes Bridget Fonda say that phrase and she does so through gritted teeth. Later in the movie when an assassin job goes very wrong Bridget Fonda smiles and says "I never did mind about the little things." Years ago when Bert and I were dating, we attempted to cook a London Broil for dinner, it did not turn out so well; actually it turned out a little too well. As we sat at the tiny Ikea table in the stark white kitchen of his high rise apartment eating a crispy black London Broil on Acme paper plates, Bert looked at me, smiled and said "I never did mind about the little things." We giggled and over the years that quote became our mantra. It seemed to just take the edge off in situations out of our control.
One day last week after using the cough assist, dealing with a bloody nose and emptying an entire box of Kleenex , we moved on to the morning's tube feeding. After administering the feeding I began to flush the tube with water as I always do, I didn't notice that the tiny port on the the side had popped open, that is until the warm cloudy, sticky liquid trickled out all over Bert's leg and down the wheelchair. On we moved to the shower, I was going to give him one anyway. I transferred him to the toilet and adjusted all body parts to aim into the bowl. I began to clean up the mess in the kitchen and wipe down the wheelchair. I returned to the bathroom to find that things didn't stay where I placed them and a yellow stream ran down the toilet to a small pool of urine on the bathroom floor. Bert smiled a pursed lipped smile and in a soft voice slurred "I never did mind about the little things." Laughter followed as we wondered how we ended up on this crazy journey together...no time to worry about the hows and whys, a shower was in order.
I haven't given up hope or believing there is some reason we were dealt this hand to play. Bert believes and I quote "shit just happens." In either case when we feel like we are about to reach the point of no return we can just smile and say matter of factly "I never did mind about the little things."
#keepworkingtoalwaysfindthepositive
xoxo B&J
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