A photograph appeared on my phone a few days ago, one that at first glance took me by surprise which was strange because it was a photo of my husband. We have been together over half my life, we started dating when I was just 17 years old. I certainly know what he looks like. The photo was from two years ago, a simple snap shot of him on our riding mower in the driveway; smiling, ready to mow the lawn. But I stopped and just stared at the picture in disbelief because as I looked at it I realized just how far ALS has progressed.
Memories came flooding back, the horror of the year we spent trying to get a diagnosis and then wishing so hard we had not received the diagnosis of ALS. That riding mower…it represented our denial or our hope that the stiffness in his legs would just be a bad back, we bought that mower so he wouldn’t "injure" his back any further mowing the lawn. A silly waste of money because we knew when we shopped for it at Lowes that his symptoms were so much more than a bad back. Somehow that riding mower soothed our fear for a moment.
I couldn’t take my eyes off the picture. He looked so good, healthy, all body parts working, he was wearing sneakers and had tied his own shoes. A feeling of sadness swept over me, he hasn’t worn anything but slip on shoes for as long as I can remember. Was I forgetting already? Forgetting what he looked like before ALS, forgetting who he was, who we were before this hideous disease. It felt like such a long time since I have seen his body upright supporting itself, his arms working; one hand on the steering wheel of the mower and one on the shifter. When I think of him now, I only see them floppy like a rag doll, having to be positioned by me.
Looking at the picture I kind of panicked for a minute. I felt a strong urge that I needed to tell him how I felt and do it right away, right that very second just in case. I felt like even though he knows how I feel I just needed say it. All of a sudden I felt like we could be running out of time. It has been four years since the symptoms of ALS began, it seems like a long time ago and yet it feels like we have been caught in a strong rip current, time moving so fast ALS just taking us with it out to sea. He can no longer sit on a riding mower; he can only sit in a wheelchair or recliner now. He cannot use his arms or hands to steer a wheel or shift a gear, he cannot even scratch his nose. His feet are swollen and cannot fit into shoes, he cannot dress himself or tie shoes. He cannot feed himself, or eat without coughing, he cannot go to the bathroom or shower or brush his teeth, he can only speak with garbled sounds that usually cannot be understood. My panic intensified and I began to cry. I have not cried for a long time. We don’t cry anymore, all the crying was done in the beginning, now we just accept and try to live. But all of a sudden the reality hit me, there would be an end.
So, I told him. I told him right then how I felt about him, what an amazing life I have because of him, I didn’t hold back, I told him everything I was feeling and how grateful I am. I thanked him for our children of course and so many other things and without giving all our secrets and inside jokes away…. know that he knows (and already did) how much I love him and grateful and satisfied I am.
It’s hard to live in the present. Everyone says we should but in truth we all plan ahead for the future. ALS does not allow it, that’s the hardest part to just be content to live for the very moment you’re experiencing. There are many moments with ALS that I wish we didn’t have to live in, and I sometimes feel guilty when there are bad moments. I am realizing through this journey though that all moments are important bad or good, happy or sad, it’s what makes us human. I hope my husband defies the statistics of ALS, I have not given up hope…. I am still holding out that a cure will be found. But whether things turn out the way we want them to or not, we will have no regrets about how we journeyed through this together mostly finding the positive.
I know that no one truly knows the end of their story, but take it from me there is no better time than the present to tell the people you love how you feel. Be raw, be honest, say it through laughter and tears and have no regrets. We are still living and always finding a positive.
xoxo~ Jennifer
Memories came flooding back, the horror of the year we spent trying to get a diagnosis and then wishing so hard we had not received the diagnosis of ALS. That riding mower…it represented our denial or our hope that the stiffness in his legs would just be a bad back, we bought that mower so he wouldn’t "injure" his back any further mowing the lawn. A silly waste of money because we knew when we shopped for it at Lowes that his symptoms were so much more than a bad back. Somehow that riding mower soothed our fear for a moment.
I couldn’t take my eyes off the picture. He looked so good, healthy, all body parts working, he was wearing sneakers and had tied his own shoes. A feeling of sadness swept over me, he hasn’t worn anything but slip on shoes for as long as I can remember. Was I forgetting already? Forgetting what he looked like before ALS, forgetting who he was, who we were before this hideous disease. It felt like such a long time since I have seen his body upright supporting itself, his arms working; one hand on the steering wheel of the mower and one on the shifter. When I think of him now, I only see them floppy like a rag doll, having to be positioned by me.
Looking at the picture I kind of panicked for a minute. I felt a strong urge that I needed to tell him how I felt and do it right away, right that very second just in case. I felt like even though he knows how I feel I just needed say it. All of a sudden I felt like we could be running out of time. It has been four years since the symptoms of ALS began, it seems like a long time ago and yet it feels like we have been caught in a strong rip current, time moving so fast ALS just taking us with it out to sea. He can no longer sit on a riding mower; he can only sit in a wheelchair or recliner now. He cannot use his arms or hands to steer a wheel or shift a gear, he cannot even scratch his nose. His feet are swollen and cannot fit into shoes, he cannot dress himself or tie shoes. He cannot feed himself, or eat without coughing, he cannot go to the bathroom or shower or brush his teeth, he can only speak with garbled sounds that usually cannot be understood. My panic intensified and I began to cry. I have not cried for a long time. We don’t cry anymore, all the crying was done in the beginning, now we just accept and try to live. But all of a sudden the reality hit me, there would be an end.
So, I told him. I told him right then how I felt about him, what an amazing life I have because of him, I didn’t hold back, I told him everything I was feeling and how grateful I am. I thanked him for our children of course and so many other things and without giving all our secrets and inside jokes away…. know that he knows (and already did) how much I love him and grateful and satisfied I am.
It’s hard to live in the present. Everyone says we should but in truth we all plan ahead for the future. ALS does not allow it, that’s the hardest part to just be content to live for the very moment you’re experiencing. There are many moments with ALS that I wish we didn’t have to live in, and I sometimes feel guilty when there are bad moments. I am realizing through this journey though that all moments are important bad or good, happy or sad, it’s what makes us human. I hope my husband defies the statistics of ALS, I have not given up hope…. I am still holding out that a cure will be found. But whether things turn out the way we want them to or not, we will have no regrets about how we journeyed through this together mostly finding the positive.
I know that no one truly knows the end of their story, but take it from me there is no better time than the present to tell the people you love how you feel. Be raw, be honest, say it through laughter and tears and have no regrets. We are still living and always finding a positive.
xoxo~ Jennifer
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