"Life has a beat. Dance to it!"
Akhil enjoying a recent visit with his parents.
Akhil and I try to keep our outlooks and our blog posts positive. I think that is why I have been having a hard time putting together a post these last several days. Not that optimism has left me, but there is a harsh reality to living with someone with a chronic disease that you may not have thought about.
As I watch Akhil awaken each morning and evaluate his body’s performance, it reminds me that he is not the only one suffering from this disease. Each new disability affects me and the girls in terms of what we are able to do and how much assistance we need to offer Akhil. For example, we can no longer look outside and see that it is a beautiful day and spontaneously hop in the car on an adventure. An outing requires meticulous planning to make sure any needs Akhil may have while we are gone can be accommodated. We are all trapped in the confines of this prison of ALS as it limits our lives by its cruel boundaries.
Each day with Akhil is both physically and emotionally taxing. On the emotional side, we have dealt with him no longer working, a period of time with no pay as we await long term disability benefits to kick in, and the knowledge that we will need to live on and put three girls through college on 60% of Akhil’s pay. We have wrestled with the idea of me going back to work to supplement our income. We have dealt with financial issues from large medical bills, to understanding our life insurance payouts to evaluating our investments for my future. At a time in our lives when we thought we would be planning for retirement, we are preparing for only my future. That is emotionally draining but God gives me strength to overcome each challenge as He helps draw my focus away from the fear that uncertainty can bring.
On the physical side, each day seems to be more difficult for Akhil and for me. As Akhil struggles to move, I must use my strength to compensate for his body’s loss. He is unable to get up from laying down in bed so I must lift him to sitting. Any time he needs to stand from a seated position, I must lift him. Each day, I must address all of his physical needs from showering and dressing to feeding him. I am thankful my body is strong.
Akhil can no longer be left home alone for more than an hour or so. Since he is unable to independently attend to any of his own needs, someone must be available at virtually all times. Not just anyone will do to stay with him. If he needs to be lifted, there is a technique to it so his fragile body doesn’t get injured. Thankfully, my girls are available to be with him so I can get out of the house now and then.
I function in a perpetual state of tiredness. If you have ever had an infant, you know the feeling I am talking about. Remember how you longed for that eight-week mark when the baby would sleep all night? ALS has deprived both of us of one of the simple joys in life – a good night’s sleep. Akhil experiences muscle spasms as he sleeps which cause him to let out groans that are so loud they awaken our daughter in the bedroom above us. Akhil lacks the strength to turn over on his own so at times he must wake me to assist him with repositioning. I am thankful that I am able to occasionally sleep in or take a nap.
There may be people in your life who are taking care of someone in a situation like Akhil’s. I hope this little blog post helps you understand their daily struggles, perhaps a side of life that they hesitate to share. Know that while you may not be able to give them physical relief, any relief you can give I am sure would be greatly appreciated. People have been bringing us meals which have been such a blessing to me because the time I would have to spend cooking I can spend doing something else – like napping! If you know someone in a situation like ours, reach out and offer whatever time or skills you have to help. On Sunday, a teenager saw me struggling to transfer Akhil from his wheelchair to the pew so he asked if he could help. While there really wasn’t anything he could do to assist, it made my soul smile that this nice young man offered. If you offer to help someone and they refuse, know that simply by offering, you conveyed that someone cares and desires to make their burden lighter. I hope you are emboldened to step outside of your comfort zone to reach out to someone who is in need because more than anything, they simply need to know you care.
As I watch Akhil awaken each morning and evaluate his body’s performance, it reminds me that he is not the only one suffering from this disease. Each new disability affects me and the girls in terms of what we are able to do and how much assistance we need to offer Akhil. For example, we can no longer look outside and see that it is a beautiful day and spontaneously hop in the car on an adventure. An outing requires meticulous planning to make sure any needs Akhil may have while we are gone can be accommodated. We are all trapped in the confines of this prison of ALS as it limits our lives by its cruel boundaries.
Each day with Akhil is both physically and emotionally taxing. On the emotional side, we have dealt with him no longer working, a period of time with no pay as we await long term disability benefits to kick in, and the knowledge that we will need to live on and put three girls through college on 60% of Akhil’s pay. We have wrestled with the idea of me going back to work to supplement our income. We have dealt with financial issues from large medical bills, to understanding our life insurance payouts to evaluating our investments for my future. At a time in our lives when we thought we would be planning for retirement, we are preparing for only my future. That is emotionally draining but God gives me strength to overcome each challenge as He helps draw my focus away from the fear that uncertainty can bring.
On the physical side, each day seems to be more difficult for Akhil and for me. As Akhil struggles to move, I must use my strength to compensate for his body’s loss. He is unable to get up from laying down in bed so I must lift him to sitting. Any time he needs to stand from a seated position, I must lift him. Each day, I must address all of his physical needs from showering and dressing to feeding him. I am thankful my body is strong.
Akhil can no longer be left home alone for more than an hour or so. Since he is unable to independently attend to any of his own needs, someone must be available at virtually all times. Not just anyone will do to stay with him. If he needs to be lifted, there is a technique to it so his fragile body doesn’t get injured. Thankfully, my girls are available to be with him so I can get out of the house now and then.
I function in a perpetual state of tiredness. If you have ever had an infant, you know the feeling I am talking about. Remember how you longed for that eight-week mark when the baby would sleep all night? ALS has deprived both of us of one of the simple joys in life – a good night’s sleep. Akhil experiences muscle spasms as he sleeps which cause him to let out groans that are so loud they awaken our daughter in the bedroom above us. Akhil lacks the strength to turn over on his own so at times he must wake me to assist him with repositioning. I am thankful that I am able to occasionally sleep in or take a nap.
There may be people in your life who are taking care of someone in a situation like Akhil’s. I hope this little blog post helps you understand their daily struggles, perhaps a side of life that they hesitate to share. Know that while you may not be able to give them physical relief, any relief you can give I am sure would be greatly appreciated. People have been bringing us meals which have been such a blessing to me because the time I would have to spend cooking I can spend doing something else – like napping! If you know someone in a situation like ours, reach out and offer whatever time or skills you have to help. On Sunday, a teenager saw me struggling to transfer Akhil from his wheelchair to the pew so he asked if he could help. While there really wasn’t anything he could do to assist, it made my soul smile that this nice young man offered. If you offer to help someone and they refuse, know that simply by offering, you conveyed that someone cares and desires to make their burden lighter. I hope you are emboldened to step outside of your comfort zone to reach out to someone who is in need because more than anything, they simply need to know you care.
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