I wrote a story, a sappy, sad, kind of whiny story about the happenings in the Lange household...then I didn't post it. I didn't post it, not because it wasn't true because it was all true, my feelings were true, my heartbreak was true, ALS is true...but we promised...we promised to find the positive no matter how hard and we do not break promises. So, I wrote it, I typed it, I printed it, I read it and then I tossed it, I took all the strength I could muster from all the negative crap that ALS brings and I matched each obstacle with a positive. Was it easy, no. It took a lot of effort, but it was a choice, and ultimately one always has a choice. Our choice is to not waste precious energy on the negative. There is always a positive and we are sticking with that.
I think the holidays may have enhanced the obstacles, I mean I knew they were going to happen, ALS always brings obstacles with its ugly progression but during the holiday season I know at least for me things are enhanced. The ramp leading into the house for wheelchair access, the widened doors, the moving of furniture, the altering of chairs, the use of dragon because typing is too difficult, and the toilet troubles seemed to me at first to be the end of the world. I do not like to witness my husband struggle. With each new change ALS becomes more real. With each new change a feeling of defeat washes over me. I absolutely do not like that I cannot do anything to change the physical course of this disease for my husband, I think I could use the word hate...yes I hate that I am helpless to it's progression, it really pisses me off. I want us to just be able to go for a run again, I want him to tell me he will be back in an hour after his bike ride. Being pissed off doesn't change the disease, it doesn't change the progression or the outcome and it takes a lot of much needed energy. Choice, it's all I have, it's all I can do to help the person I love. My choice is to adapt, to make life as easy as I possibly can for him to live with this ALS. I can alter the doors, the furniture, I can raise the toilet seat, buy gadgets to make life easier and I can smile...I can laugh, and I can make things work.
Here is my list: one positive for every obstacle. The ramp leading into our house for wheelchair access = a special bond with someone we never met; Bert's power-chair was a gift from a lovely family who lost a husband, and a father to ALS...it's special, it's part of him and Mr. Lightening McQueen has an aura to him that makes me just know that he and his family are wonderful human beings. My sister and her husband helped us clean the garage to make room for this much needed ramp, we had some good laughs, and it made the whole process more fun. Alex, thinks that ramp is his personal bike ramp, he thought it was being built for him...kids have a way of just looking past what concerns us adults and seeing the fun in everything. The wide doors= freedom. Those doors forced me to rearrange the family room and open it up wide for wheelchair access, it's so spacious now, Bert can get to the patio so when spring comes he will be able to go outside and enjoy the sun and the flowers. Chairs that are now heightened on wood blocks = Mobility. Bert can get in and out of the chair without as much of a struggle, it cost nothing since my dad (aka our handyman we love) was able to find the wood and do it for us. The kids think its cool to sit in a "big" chair with their feet dangling...heck my feet dangle too. Dragon for the computer = independence. Bert may not be able to type but this handy headset can understand his mumbled speech and type for him, technology is so cool today, it really helps people with this disease keep their independence and ability to communicate...I am amazed and Bert is happy. Toilet risers = independence in the bathroom and who wouldn't want to keep that as long as possible. Thank goodness for the toilet riser inventors...they are a God send. Really, there are amazing pieces of adaptive equipment out there, gadgets to help people, even those with ALS stay independent in the bathroom. Staying independent in the bathroom for as long as possible makes for a happy person living with ALS. For every obstacle there was a solution, and someone who was willing to help us get there.
Now, I will admit that sometimes my positives are a stretch, but no matter they are still positives. Choosing a positive makes everything better. It makes things better for my children who are less fearful of this disease because they believe and they bear witness to us adapting to change and keeping our sense of humor, even if a few tears are shed we still have laughter and smiles at the end of the day. It makes it better for Bert who is living this horrible reality, it brings a sense of being safe; and positivity radiates accomplishment.
Life goes on. That was the beginning of my first blog, and yes life does go on, it moves forward no matter what is happening in anyone's life. It feels unfair at times because it seems only right for it to stop, stand still for a minute or two giving us a chance to catch up. But life doesn't stop, it keeps moving through all obstacles, through all the good and the bad. Holidays don't care if you have ALS. I am proud of us, we shopped, baked cookies, volunteered at the school's holiday party and celebrated Christmas even in the midst of adapting to ALS...emotions were mixed at times but our love remained steadfast. We are looking forward to the new year, to ringing it in with our best friends, in the warm sun of Florida on a much needed vacation. We look forward to the coming months, to participating in a clinical trial at ALSTDI, to finishing up the drug trial at UMass, the 2nd annual Freeze Out Friendly Fund Raiser is coming in February and then the Fiesta 5k for the Packard Center this spring. We have many obstacles ahead of us, more adaptations to come, but we will find the positive. This life is truly a one time offer, and we need to choose to use it well. It's been a wonderful Christmas, with a wonderful year that is about to be in the past, we live in the present and continue to look forward to a wonderful year to come.
The Best Journeys Answer the Questions That In The Beginning You Didn't Even Think To Ask.
xoxo~Jennifer
Merry Christmas 2014
I think the holidays may have enhanced the obstacles, I mean I knew they were going to happen, ALS always brings obstacles with its ugly progression but during the holiday season I know at least for me things are enhanced. The ramp leading into the house for wheelchair access, the widened doors, the moving of furniture, the altering of chairs, the use of dragon because typing is too difficult, and the toilet troubles seemed to me at first to be the end of the world. I do not like to witness my husband struggle. With each new change ALS becomes more real. With each new change a feeling of defeat washes over me. I absolutely do not like that I cannot do anything to change the physical course of this disease for my husband, I think I could use the word hate...yes I hate that I am helpless to it's progression, it really pisses me off. I want us to just be able to go for a run again, I want him to tell me he will be back in an hour after his bike ride. Being pissed off doesn't change the disease, it doesn't change the progression or the outcome and it takes a lot of much needed energy. Choice, it's all I have, it's all I can do to help the person I love. My choice is to adapt, to make life as easy as I possibly can for him to live with this ALS. I can alter the doors, the furniture, I can raise the toilet seat, buy gadgets to make life easier and I can smile...I can laugh, and I can make things work.
Here is my list: one positive for every obstacle. The ramp leading into our house for wheelchair access = a special bond with someone we never met; Bert's power-chair was a gift from a lovely family who lost a husband, and a father to ALS...it's special, it's part of him and Mr. Lightening McQueen has an aura to him that makes me just know that he and his family are wonderful human beings. My sister and her husband helped us clean the garage to make room for this much needed ramp, we had some good laughs, and it made the whole process more fun. Alex, thinks that ramp is his personal bike ramp, he thought it was being built for him...kids have a way of just looking past what concerns us adults and seeing the fun in everything. The wide doors= freedom. Those doors forced me to rearrange the family room and open it up wide for wheelchair access, it's so spacious now, Bert can get to the patio so when spring comes he will be able to go outside and enjoy the sun and the flowers. Chairs that are now heightened on wood blocks = Mobility. Bert can get in and out of the chair without as much of a struggle, it cost nothing since my dad (aka our handyman we love) was able to find the wood and do it for us. The kids think its cool to sit in a "big" chair with their feet dangling...heck my feet dangle too. Dragon for the computer = independence. Bert may not be able to type but this handy headset can understand his mumbled speech and type for him, technology is so cool today, it really helps people with this disease keep their independence and ability to communicate...I am amazed and Bert is happy. Toilet risers = independence in the bathroom and who wouldn't want to keep that as long as possible. Thank goodness for the toilet riser inventors...they are a God send. Really, there are amazing pieces of adaptive equipment out there, gadgets to help people, even those with ALS stay independent in the bathroom. Staying independent in the bathroom for as long as possible makes for a happy person living with ALS. For every obstacle there was a solution, and someone who was willing to help us get there.
Now, I will admit that sometimes my positives are a stretch, but no matter they are still positives. Choosing a positive makes everything better. It makes things better for my children who are less fearful of this disease because they believe and they bear witness to us adapting to change and keeping our sense of humor, even if a few tears are shed we still have laughter and smiles at the end of the day. It makes it better for Bert who is living this horrible reality, it brings a sense of being safe; and positivity radiates accomplishment.
Life goes on. That was the beginning of my first blog, and yes life does go on, it moves forward no matter what is happening in anyone's life. It feels unfair at times because it seems only right for it to stop, stand still for a minute or two giving us a chance to catch up. But life doesn't stop, it keeps moving through all obstacles, through all the good and the bad. Holidays don't care if you have ALS. I am proud of us, we shopped, baked cookies, volunteered at the school's holiday party and celebrated Christmas even in the midst of adapting to ALS...emotions were mixed at times but our love remained steadfast. We are looking forward to the new year, to ringing it in with our best friends, in the warm sun of Florida on a much needed vacation. We look forward to the coming months, to participating in a clinical trial at ALSTDI, to finishing up the drug trial at UMass, the 2nd annual Freeze Out Friendly Fund Raiser is coming in February and then the Fiesta 5k for the Packard Center this spring. We have many obstacles ahead of us, more adaptations to come, but we will find the positive. This life is truly a one time offer, and we need to choose to use it well. It's been a wonderful Christmas, with a wonderful year that is about to be in the past, we live in the present and continue to look forward to a wonderful year to come.
The Best Journeys Answer the Questions That In The Beginning You Didn't Even Think To Ask.
xoxo~Jennifer
Merry Christmas 2014
