If there is one thing that I have learned on this journey it is that no matter how badly ones heart is breaking, the world does not stop for grief. It’s been a long time since I have written a blog. This blog is a blow to my ego, writing it is forcing me to admit fear and broken rules and a loss of control that really was never there in the first place.
We started this journey with three rules. The first was that Bert was going to be the exception to the rule. He was going to be one of those ALS patients that fell into the ten percent that lived more than ten years. He was going to stay stable for a long time, he would just remain spastic, his upper motor neurons would make him stiff but his breathing would be normal, he would beat the odds. The second was that things might not turn out how you think, maybe the progression would not be the same, maybe a drug trial would work for him, maybe just maybe ALS would be different this time. And rule number three was safety, that seemed simple enough to control for heavens sake, just be careful and we’re good right? ALS had different plans for us.
I guess all along we sort of knew that the exception to the rule was not going as planned. Progression was happening, fast or slow who knows, I think it’s all relative as this disease’s path is a little different for everyone with the same result in the end. ALS takes, fast or slow it takes and keeps taking and Bert was no exception. ALS has taken his ability to walk, his ability to drive, to work, to wash and dress himself, to cut his food, to stand up from a chair, it is taking his ability to talk and now as of February it has it’s grip on his ability to breathe. With every loss I grieved for him, and for our children, and in February even though it was no surprise because we did the math before the clinic appointment I still grieved when his FVC (forced vital capacity) was below normal. It just felt like such a slap in the face, ALS was mocking us...YOU ARE NO EXCEPTION TO THE RULE.
Things might not turn out how you think. I snickered a bit just now writing those words...yeah things might not turn out how you think, those words can go either way and they did not go the way we wanted. The drug trial is over, fifteen months of driving 8 hours to Boston and back every month sometimes more than once a month, all the measurements, blood draws and spinal taps, the drugs, it’s over and it didn't work for Bert. In February I left my position at work for a new position, one that would allow me to be everywhere I needed to be all at once so that I could manage work, our children, our home, and care-giving. Renovations were always in progress, ramps, and grab bars, wider doors, shower chairs, and a new bed. ALS clinic advanced into speech clinic and the addition of a Pulmonologist. Things were turning out the way ALS turns out.
Safety. Come on, at least we can control this right? Wrong. The first fall came in March, Bert was sitting in bed, I was putting laundry away and I heard the first thud and there he was on the floor. He had reached for something on his walker and his balance shifted a tiny bit to the left and with that he had no control and was on the floor. Rule number three broken. It took Sophia, Alex and me to get him up. No injuries thank goodness but still as careful as we were and we were careful he fell. A few weeks later another thud in the bathroom in the middle of the night, there he was on his back on the floor, towel bar ripped out of the wall and plaster on top of him. More grab bars, now a handrail of grab bars along the wall, one in front of the toilet and a raised seat in every bathroom. We were lucky, he was not hurt. And fall number three at the bottom of the steps this one just a loss of balance backward, Alex was able to get Bert up himself this time, and so ended his independence on stairs even with double handrails, and made me a nervous wreck to ever leave the house. It was official every rule was broken. And sadly it felt like defeat.
It felt like ALS was getting ahead of us and we couldn't keep up. Next was the bike trainer. For a while that was my “well at least”. Even in the midst of all that this disease was robbing Bert of, even though the trial didn't give us the answers we wanted, and even though he was not as safe as I would have liked, “at least” he was still able to ride that bike trainer. Then that was not so easy anymore either. The clonus reflex was so bad now that his foot rubbed against the bike with every turn of the pedal making it impossible to ride the trainer. A meltdown occurred with some crying and grunting and moaning, and other horrid sounds that ALS causes a person to make and there we were in the basement surrounded by a lot of gym equipment that one by one ALS had taken. Weights that Bert could no longer lift, a punching bag that he could no longer punch a treadmill that he could no longer walk or run on and now a bike trainer that he could no longer ride, it felt like a graveyard. What do we do now? With a little help from a friend we problem solved and a new set of pedals seemed to do the trick but for how long was unknown.
Always a positive, that's our motto, but it was getting hard to find the positive. I was feeling defeat, we were tired and this was just the beginning. The last few months we have just been going through motions, just day to day care-giving for me and day to day wake up and keep breathing for him. In March Sophia’s middle school opened it’s doors for the HARK Foundation to have a fundraiser for Bert. HARK screened the documentary Hope on the Horizon for our community to raise awareness and funds for our family to help with the cost of living with this disease. Sophia wanted to write a speech, she did and she and Alex stood in front of the whole school while she spoke about ALS and what it was like for her living with this disease in her life and having to think about her dad dying. The night she wrote the speech she practiced it once for me and at the end she matter of factly asked me “mom do you think my speech is too morbid?” I felt like I was outside looking in at that moment...how was it that my twelve year old was talking about ALS, what it does and dying like it was an everyday thing? The fundraiser was a success, we were grateful for our community’s support and for HARK and the work they do. It’s organizations like HARK that help keep families living with this disease focused on the positive. HARK helps people who have ALS, they help raise money for the cost of living with ALS and they help to educate communities about the disease. Hope on the Horizon is not just about climbing mountains, it’s about overcoming obstacles, obstacles so big they seem impossible at first but then from somewhere deep down inside you realize that any obstacle is just that; an obstacle that is waiting to be overcome. I was still having to work hard at finding that positive. I was stressed with work and feeling like I was being pulled in a lot of directions, and I was sad so sad for Bert. He had texted me last week, it read I am sad and unhappy at how our lives are going with this f***ing disease. I know, I am sorry I responded back. We were quiet for a while. But we can never feel sorry for ourselves for too long. All that we have to be grateful for becomes too apparent and the positive was staring us literally in the face. Sophia and Alex, each other, our families, our friends, our community, our pets, all the organizations like HARK, Team Gleason, Hope Loves Company, Johns Hopkins, ALS TDI and so many more that work tirelessly to support those living with ALS. It became very clear to us that we did not need to play by the rules to overcome this obstacle of ALS. We started to think about all the things that ALS cannot take...
ALS cannot take your feelings. ALS cannot take your love. ALS cannot take the beauty in this world. ALS cannot take music. ALS cannot take your personality. ALS cannot take your creativity. ALS cannot take hope. ALS cannot take your sense of humor. ALS cannot take intimacy. ALS cannot take your memories. ALS cannot take your faith. ALS cannot take the will to live. ALS is not all powerful. ALS does not have all the control.
All our rules may have been broken, but aren't rules made to be broken? Maybe that was the best thing we could do, let go of trying to control this journey and keep our focus on living each day one at a time and wait and see what happens. Break our own rules, break all the rules. We agreed that we could not predict the future so we needed to remain in the present. We agreed that our love would ultimately win over ALS no matter what happened and we promised to keep our promise to each other to always find the positive, ALS could not take that from us. And we sealed the deal with our love. ALS has no power over love.
I realize daily it takes true grit to battle this disease. We have grit and we prove that to ourselves everyday. We wake up, we live, we smile, we laugh, we love and we persevere. Bert’s body may not be an athlete anymore but his mind is still a strong force to recon with, he is resilient and motivated and he still has a lot of will for achievement. There will be bumps in the road, but together we can face them one by one and win. We can always find a positive that's our one rule that cannot be broken.
hero [he-ro] - noun
is an ordinary individual who finds the strength to
persevere and endure
in spite
of overwhelming obstacles.
~Christopher Reeves
All people living with ALS are heroes overcoming great obstacles and they are doing an awesome job, support them and always, always, always find the positive.
xoxo Jenn & Bert Lange
We started this journey with three rules. The first was that Bert was going to be the exception to the rule. He was going to be one of those ALS patients that fell into the ten percent that lived more than ten years. He was going to stay stable for a long time, he would just remain spastic, his upper motor neurons would make him stiff but his breathing would be normal, he would beat the odds. The second was that things might not turn out how you think, maybe the progression would not be the same, maybe a drug trial would work for him, maybe just maybe ALS would be different this time. And rule number three was safety, that seemed simple enough to control for heavens sake, just be careful and we’re good right? ALS had different plans for us.
I guess all along we sort of knew that the exception to the rule was not going as planned. Progression was happening, fast or slow who knows, I think it’s all relative as this disease’s path is a little different for everyone with the same result in the end. ALS takes, fast or slow it takes and keeps taking and Bert was no exception. ALS has taken his ability to walk, his ability to drive, to work, to wash and dress himself, to cut his food, to stand up from a chair, it is taking his ability to talk and now as of February it has it’s grip on his ability to breathe. With every loss I grieved for him, and for our children, and in February even though it was no surprise because we did the math before the clinic appointment I still grieved when his FVC (forced vital capacity) was below normal. It just felt like such a slap in the face, ALS was mocking us...YOU ARE NO EXCEPTION TO THE RULE.
Things might not turn out how you think. I snickered a bit just now writing those words...yeah things might not turn out how you think, those words can go either way and they did not go the way we wanted. The drug trial is over, fifteen months of driving 8 hours to Boston and back every month sometimes more than once a month, all the measurements, blood draws and spinal taps, the drugs, it’s over and it didn't work for Bert. In February I left my position at work for a new position, one that would allow me to be everywhere I needed to be all at once so that I could manage work, our children, our home, and care-giving. Renovations were always in progress, ramps, and grab bars, wider doors, shower chairs, and a new bed. ALS clinic advanced into speech clinic and the addition of a Pulmonologist. Things were turning out the way ALS turns out.
Safety. Come on, at least we can control this right? Wrong. The first fall came in March, Bert was sitting in bed, I was putting laundry away and I heard the first thud and there he was on the floor. He had reached for something on his walker and his balance shifted a tiny bit to the left and with that he had no control and was on the floor. Rule number three broken. It took Sophia, Alex and me to get him up. No injuries thank goodness but still as careful as we were and we were careful he fell. A few weeks later another thud in the bathroom in the middle of the night, there he was on his back on the floor, towel bar ripped out of the wall and plaster on top of him. More grab bars, now a handrail of grab bars along the wall, one in front of the toilet and a raised seat in every bathroom. We were lucky, he was not hurt. And fall number three at the bottom of the steps this one just a loss of balance backward, Alex was able to get Bert up himself this time, and so ended his independence on stairs even with double handrails, and made me a nervous wreck to ever leave the house. It was official every rule was broken. And sadly it felt like defeat.
It felt like ALS was getting ahead of us and we couldn't keep up. Next was the bike trainer. For a while that was my “well at least”. Even in the midst of all that this disease was robbing Bert of, even though the trial didn't give us the answers we wanted, and even though he was not as safe as I would have liked, “at least” he was still able to ride that bike trainer. Then that was not so easy anymore either. The clonus reflex was so bad now that his foot rubbed against the bike with every turn of the pedal making it impossible to ride the trainer. A meltdown occurred with some crying and grunting and moaning, and other horrid sounds that ALS causes a person to make and there we were in the basement surrounded by a lot of gym equipment that one by one ALS had taken. Weights that Bert could no longer lift, a punching bag that he could no longer punch a treadmill that he could no longer walk or run on and now a bike trainer that he could no longer ride, it felt like a graveyard. What do we do now? With a little help from a friend we problem solved and a new set of pedals seemed to do the trick but for how long was unknown.
Always a positive, that's our motto, but it was getting hard to find the positive. I was feeling defeat, we were tired and this was just the beginning. The last few months we have just been going through motions, just day to day care-giving for me and day to day wake up and keep breathing for him. In March Sophia’s middle school opened it’s doors for the HARK Foundation to have a fundraiser for Bert. HARK screened the documentary Hope on the Horizon for our community to raise awareness and funds for our family to help with the cost of living with this disease. Sophia wanted to write a speech, she did and she and Alex stood in front of the whole school while she spoke about ALS and what it was like for her living with this disease in her life and having to think about her dad dying. The night she wrote the speech she practiced it once for me and at the end she matter of factly asked me “mom do you think my speech is too morbid?” I felt like I was outside looking in at that moment...how was it that my twelve year old was talking about ALS, what it does and dying like it was an everyday thing? The fundraiser was a success, we were grateful for our community’s support and for HARK and the work they do. It’s organizations like HARK that help keep families living with this disease focused on the positive. HARK helps people who have ALS, they help raise money for the cost of living with ALS and they help to educate communities about the disease. Hope on the Horizon is not just about climbing mountains, it’s about overcoming obstacles, obstacles so big they seem impossible at first but then from somewhere deep down inside you realize that any obstacle is just that; an obstacle that is waiting to be overcome. I was still having to work hard at finding that positive. I was stressed with work and feeling like I was being pulled in a lot of directions, and I was sad so sad for Bert. He had texted me last week, it read I am sad and unhappy at how our lives are going with this f***ing disease. I know, I am sorry I responded back. We were quiet for a while. But we can never feel sorry for ourselves for too long. All that we have to be grateful for becomes too apparent and the positive was staring us literally in the face. Sophia and Alex, each other, our families, our friends, our community, our pets, all the organizations like HARK, Team Gleason, Hope Loves Company, Johns Hopkins, ALS TDI and so many more that work tirelessly to support those living with ALS. It became very clear to us that we did not need to play by the rules to overcome this obstacle of ALS. We started to think about all the things that ALS cannot take...
ALS cannot take your feelings. ALS cannot take your love. ALS cannot take the beauty in this world. ALS cannot take music. ALS cannot take your personality. ALS cannot take your creativity. ALS cannot take hope. ALS cannot take your sense of humor. ALS cannot take intimacy. ALS cannot take your memories. ALS cannot take your faith. ALS cannot take the will to live. ALS is not all powerful. ALS does not have all the control.
All our rules may have been broken, but aren't rules made to be broken? Maybe that was the best thing we could do, let go of trying to control this journey and keep our focus on living each day one at a time and wait and see what happens. Break our own rules, break all the rules. We agreed that we could not predict the future so we needed to remain in the present. We agreed that our love would ultimately win over ALS no matter what happened and we promised to keep our promise to each other to always find the positive, ALS could not take that from us. And we sealed the deal with our love. ALS has no power over love.
I realize daily it takes true grit to battle this disease. We have grit and we prove that to ourselves everyday. We wake up, we live, we smile, we laugh, we love and we persevere. Bert’s body may not be an athlete anymore but his mind is still a strong force to recon with, he is resilient and motivated and he still has a lot of will for achievement. There will be bumps in the road, but together we can face them one by one and win. We can always find a positive that's our one rule that cannot be broken.
hero [he-ro] - noun
is an ordinary individual who finds the strength to
persevere and endure
in spite
of overwhelming obstacles.
~Christopher Reeves
All people living with ALS are heroes overcoming great obstacles and they are doing an awesome job, support them and always, always, always find the positive.
xoxo Jenn & Bert Lange
