http://www.youtube.com/v/afUWccsC68A?version=3&autohide=1&showinfo=1&autohide=1&autoplay=1&feature=share&attribution_tag=x_Q6ic4d5K-nvXpxIjIatw
Whenever I hear this song in the car, I open the sunroof, crank up the bass, and live in it!!! So fun!
Friday, November 8, 2013
The Can List
I always liked the idea of a "Bucket List". From time to time I have thought about all of the things I would like to do before my final day...assuming it is far off in the distance at 89 (the age of my maternal grandmother) to 102 (the age of my paternal grandmother). But these past few years have changed my perspective a great deal on how many opportune years I might actually have available to accomplish small feats to big adventures. After all, Aunt Marge is along for the ride. The possibilities seem to be countered by the potential impossibilities that could loom closer than I think. With M.S., it feels like dreaming is a gamble. Right now, the battle feels more in the mind than in the body. It feels like this is the critical point in the journey.
Every morning, with no cure in sight and over 900 used needles in the red sharp's container on my bathroom counter, I am aware that I am going to die with this disease. The question is, "Am I going to LIVE with it?" Sometimes, when my head hurts and I feel like there's an earthquake raging inside my body, I'm tempted to stay in the bed, forget the swim, forget the to-do list, forget the needs of others, forget the small feats and big adventures. But, thankfully, I still have the cognitive ability and a higher power to fight the apathy. I know that every day is a practice for the next. The more I practice getting up and going when I CAN see, the easier it will be for me if I get up one day and CANT. If I practice determination while I CAN walk, the easier it will be if I wake up someday after a lesion decides to locate on my spinal cord rather than on another obscure crease in my grey matter...and I CANT. I have also found myself in peculiar situations that have encouraged me, humbled me, inspired me, broken my heart and taught me a great deal more than I had counted on. I will write more about that in my next blog.
For now, let's just say that I have dismissed The Bucket List and am forging ahead with The Can List. Death could be 50 years away. My inability to use my fingers to strum the guitar could be only 10 years away. So, I signed up for guitar lessons last month...while I CAN. My inability to drive my dream car with legal vision might only be 20 years away. So, I will drive the black Jag with tan interior while I CAN. My inability to remember and organize my thoughts might only be 15 years away. So, I will write down the things that I have learned and want to share with my children while I CAN. These are a few of the items on my Can List. But daily, I think about how I want to spend my hours. I think about what matters to me. I think about what I CAN offer. My inability to safely hold a baby and walk confidently across a room may be only 5 years away...so I will hold and bounce and walk the babies in my life while I CAN. My inability to get in and out of the pool could only be 7 years away, so I will get in and pass on my love for swimming to the next generation while I CAN.
This is how I want to live with Aunt Marge. She doesn't drag me back..she is pushing me forward. She is teaching me what matters. She is the friend who is more concerned about telling me what I need to hear instead of what I want to hear. Not that I am doing it perfectly or even admirably. I'm simply doing it. I'm practicing it. I'm getting up...because I CAN. I'm certainly not ready to kick the Bucket.
Every morning, with no cure in sight and over 900 used needles in the red sharp's container on my bathroom counter, I am aware that I am going to die with this disease. The question is, "Am I going to LIVE with it?" Sometimes, when my head hurts and I feel like there's an earthquake raging inside my body, I'm tempted to stay in the bed, forget the swim, forget the to-do list, forget the needs of others, forget the small feats and big adventures. But, thankfully, I still have the cognitive ability and a higher power to fight the apathy. I know that every day is a practice for the next. The more I practice getting up and going when I CAN see, the easier it will be for me if I get up one day and CANT. If I practice determination while I CAN walk, the easier it will be if I wake up someday after a lesion decides to locate on my spinal cord rather than on another obscure crease in my grey matter...and I CANT. I have also found myself in peculiar situations that have encouraged me, humbled me, inspired me, broken my heart and taught me a great deal more than I had counted on. I will write more about that in my next blog.
For now, let's just say that I have dismissed The Bucket List and am forging ahead with The Can List. Death could be 50 years away. My inability to use my fingers to strum the guitar could be only 10 years away. So, I signed up for guitar lessons last month...while I CAN. My inability to drive my dream car with legal vision might only be 20 years away. So, I will drive the black Jag with tan interior while I CAN. My inability to remember and organize my thoughts might only be 15 years away. So, I will write down the things that I have learned and want to share with my children while I CAN. These are a few of the items on my Can List. But daily, I think about how I want to spend my hours. I think about what matters to me. I think about what I CAN offer. My inability to safely hold a baby and walk confidently across a room may be only 5 years away...so I will hold and bounce and walk the babies in my life while I CAN. My inability to get in and out of the pool could only be 7 years away, so I will get in and pass on my love for swimming to the next generation while I CAN.
This is how I want to live with Aunt Marge. She doesn't drag me back..she is pushing me forward. She is teaching me what matters. She is the friend who is more concerned about telling me what I need to hear instead of what I want to hear. Not that I am doing it perfectly or even admirably. I'm simply doing it. I'm practicing it. I'm getting up...because I CAN. I'm certainly not ready to kick the Bucket.
Wednesday, February 27, 2013
Two Years.
Well, it has been almost been two years since my diagnosis. I remember because my two oldest girls were away on their annual youth group mission trip to Mexico during Spring break. I didn't want to tell them the results of my spinal tap until they were home. So many things have changed since that day. And thankfully, many things are still the same.
During the time of my diagnosis, my husband was facing a very hard reality of his own. He had been suffering from nerve pain in his hand/arm for over eight years. He knew that he could soon be facing the end of his dental career. After visiting over a dozen specialists in the Pacific Northwest and undergoing several surgeries, there was still no relief. No cure. We had sold our dream home and moved into a wonderful bank-owned home at a fraction of the cost. We met with a private disability agent. After eight years of suffering, he was finally taking a serious look at quitting. The next day, in an effort to work out some of my fear, anxieties and sadness for my husband, I put in my favorite Tae Bo workout dvd. I punched and kicked and sweat my heart out. Then I stood in the hot shower and cried and cried and cried. My legs went numb and felt heavy and paralyzed. Then my arms. My heart was racing and I couldn't control my emotions. I stumbled out of the shower, wrapped up in a towel, grabbed the phone and laid down in the hallway to call Jack. Jack, who had enough to deal with. Jack who was fighting his own battle. Jack, my provider, protector, care giver. A few weeks later, Jack, who after finding out that I had M.S. decided he couldn't quit. He wouldn't. There was too much unknown ahead of us. Besides the fact that we had four children to raise, college, weddings, bills, medical expenses.....
And so, for over a year, he worked through the increasing pain in his arm as he helped me deal with my "new normal". He slept about three or four hours each night. Seeing his overwhelming discomfort, fatigue and frustration day after day, I told him that we just needed to know from God if he was supposed to quit. We would be bold and ask God to make the pain soooo unbearable that he knew WITHOUT A DOUBT that it was the right thing to do. Be careful, you just might get what you pray for! Within a few days, Jack described his pain like dipping his arm in a trough full of gasoline and someone lighting a match. Zero hours of sleep. Zero relief. Zero doubt....it was time.
And now, here we sit. Jack is tired. His shoulder is on fire tonight. He can't sleep so he is reading a book called, "Managing Pain Before It Manages You". My hair is still wet and I am tired from teaching a swim lesson. But, I'm happy to be able to swim and able to contribute and able to show my kids that you don't let your limitations defeat you, but it's ok to let them soften you a bit. I am happy that although some things have changed, many things are still the same. Although my husband is no longer a dentist, he is still a wonderful provider, protector, care giver. Although we are living a little differently, we are raising our kids, sending them to college, paying bills...looking ahead to those amazing weddings. And we are still looking to God for answers. In a few weeks, it will be Spring break and Jacqueline will leave for Mexico. She will be building a home for someone who doesnt have one. I feel blessed. She will be engaging with people who exude joy despite the pain of poverty. I am inspired.
During the time of my diagnosis, my husband was facing a very hard reality of his own. He had been suffering from nerve pain in his hand/arm for over eight years. He knew that he could soon be facing the end of his dental career. After visiting over a dozen specialists in the Pacific Northwest and undergoing several surgeries, there was still no relief. No cure. We had sold our dream home and moved into a wonderful bank-owned home at a fraction of the cost. We met with a private disability agent. After eight years of suffering, he was finally taking a serious look at quitting. The next day, in an effort to work out some of my fear, anxieties and sadness for my husband, I put in my favorite Tae Bo workout dvd. I punched and kicked and sweat my heart out. Then I stood in the hot shower and cried and cried and cried. My legs went numb and felt heavy and paralyzed. Then my arms. My heart was racing and I couldn't control my emotions. I stumbled out of the shower, wrapped up in a towel, grabbed the phone and laid down in the hallway to call Jack. Jack, who had enough to deal with. Jack who was fighting his own battle. Jack, my provider, protector, care giver. A few weeks later, Jack, who after finding out that I had M.S. decided he couldn't quit. He wouldn't. There was too much unknown ahead of us. Besides the fact that we had four children to raise, college, weddings, bills, medical expenses.....
And so, for over a year, he worked through the increasing pain in his arm as he helped me deal with my "new normal". He slept about three or four hours each night. Seeing his overwhelming discomfort, fatigue and frustration day after day, I told him that we just needed to know from God if he was supposed to quit. We would be bold and ask God to make the pain soooo unbearable that he knew WITHOUT A DOUBT that it was the right thing to do. Be careful, you just might get what you pray for! Within a few days, Jack described his pain like dipping his arm in a trough full of gasoline and someone lighting a match. Zero hours of sleep. Zero relief. Zero doubt....it was time.
And now, here we sit. Jack is tired. His shoulder is on fire tonight. He can't sleep so he is reading a book called, "Managing Pain Before It Manages You". My hair is still wet and I am tired from teaching a swim lesson. But, I'm happy to be able to swim and able to contribute and able to show my kids that you don't let your limitations defeat you, but it's ok to let them soften you a bit. I am happy that although some things have changed, many things are still the same. Although my husband is no longer a dentist, he is still a wonderful provider, protector, care giver. Although we are living a little differently, we are raising our kids, sending them to college, paying bills...looking ahead to those amazing weddings. And we are still looking to God for answers. In a few weeks, it will be Spring break and Jacqueline will leave for Mexico. She will be building a home for someone who doesnt have one. I feel blessed. She will be engaging with people who exude joy despite the pain of poverty. I am inspired.
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