Today I had to laugh at myself. Well, not like my day to day activities do not give me enough to cringe laugh or cry about but I recognized something I have been doing that I was not aware of. I make light of ALS, of traveling in an electric chair and will not let the challenges show on my face. Behind closed doors, there is a different life going on but I am not going to show that to the rest of the world. This endeavor takes a great deal of talking to ones self and I hope no one sees that part.
I find myself in all sorts of situations that I try to make look easier than they really are. At the grocery store the other day, I needed to get some frozen food out of the freezers. The doors swing open and then they swing shut pretty quickly. I had to master the art of opening the door and driving the electric chair into the freezer at record speed before the door closes thus keeping it open long enough for me to grab all I could in one fell swoop. I probably do not have to admit that this technique took some practice as I ended up with the door flying into my chair, arm or face many a times before I got the timing down. Each time I undertake this challenge, I am aware of other shoppers staring with curiosity at my method for conquering the frozen food section. I look them right in the eye and smile as if what they had just witnessed was something they ought to try themselves to make their lives easier. Needless to say, I have found that Travis and I are adapting well to loving all the frozen foods attainable on the lower shelves as anything higher than that is just not an option.
Transferring a body as long legged as mine has proven to be one of my biggest obstacles daily. There are times that I need to make these transfers on my own at work and to witness this would leave anyone in tears laughing. The location of most of my praying and talking takes place in the restroom. I travel in as if I was doing something as casually as it used to be but really I am scared to death. I have spent enough time on the floor of the bathroom here at work and else where, having not succeeded in my transfer, ending up on the floor and needing to request assistance from strangers in the next stall and it is not something I like to reenact.
So, I enter with caution moving the legs of the chair so it accommodates the toilet and the handicapped poles and pray. This procedure takes precision driving on my part and we all know how good I am at that! I make a leap of faith while holding my clothes in my mouth and grapping onto the various bars for dear life. Safe. Now I need to repeat this hurdle in reverse without falling through that immense space between the toilet and the chair which calls my name like the pits of Hell. This requires all the strength left in my arms as my legs are of no help so I pull myself slowly to safety. I am convince that this whole routine is much like an aerobic work-out and that I should lose enormous amounts of weight each time I have to live through it as it is at this point that I find I am having trouble catching my breath as if I had run for miles. Getting my clothes back into position is yet another piece of work and when all this is done, unimaginable amounts of time later, I leave the restroom with a smile on my face as no one must know the struggle that just took place. It used to be so simple.
I have found that wherever I am, traveling in my Iron Horse, folks handle my situation differently. Even as many times as I may pass someone I work with in the halls, they seem uncomfortable. They will see me headed their way and either look down at the ground as we pass or move over to the far side of the isle. (This may be the preferable option as one can never be overly cautious when in close proximity of my chair and I) Either way, I smile at them and say “Hello” or make some comment that seemed appropriate at the time. I do not want them to think I am embarrassed to be in the chair or that my life is completely tragic. I would certainly prefer to walk past them but I am still here on Earth and for that one if to be happy.
Wonderfully, there are those who accept my condition and treat me as they always have. My fantastic co-workers want to “Pimp-Up” my wheelchair and often ask for rides. I have found several stickers including “I am the Proud Parent of a Bloodhound,” “Life is Golden.” and “I Love Water,” that now adorn the back of the chair and I have a red tail light on the headrest that I turn on at special occasions. During the Holidays I met a child in the mall who was having a really hard time enjoying shopping with his mom. As I passed him, he looked at me and I heard him tell his mother, “I want one of those so I don’t have to walk.” I smiled; had to admit, I was getting around the mall pretty quickly.
Sleeping comfortably has become a thing of the past for me. I never really comprehended the magnitude of “Paralyzed.” I am unable to roll-over in any direction, tuck my legs up or stretch them out. As much as I will this to happen, it is as if my brain will no longer signal my body to do as it is told. Nothing moves without assistance. I have a rail on one side of my bed and I use it to help pull myself up and have learned various ways to grab the sheets and have them help me turn over. I have to move my legs in the direction I am headed with my arms and hope where we land is comfortable for a bit. All this is being accomplished as I have the breathing machine tubes in my nose tangling with every effort. (The Hundred plus Bloodhound who shares my bed, only adds to the adventure). There are times in the middle of then night when I flop back down in exhaustion as it all is almost unbelievable to me that something that I never felt was an obstacle has become such a challenge. I stare out my bedroom window and think.
Despite a lack of sleep, I am determined to crawl out of bed in the morning ready for the day. Easier said then done. I lift my legs and throw them onto the seat of the chair and inch my way to the side of the bed. Yet again another leap of faith this one a little more difficult as the chair cannot get very close to the bed. This venture in itself can take up to ten minutes; add that to showering and dressing and it takes me quite a while and all the energy I can muster first thing in the morning to head to work. But once in the van; music on, I am on my way. I was told the other day by one of the security guards that I had a huge smile on my face as I crossed through the gate. If she had any idea how much it had taken to get me there, she would have known why I was smiling.
I have been told I am a people person but I think that stems from my inability to see anyone uncomfortable, hurt, sad or angry. It is at that time when I become the one who feels awkward and ill at ease. My heart is talking constantly to me; what others are hearing and seeing is not necessarily what is going on inside. I would rather let the world see me handling ALS as if it was a piece of cake, a walk in the park, something easy. Maybe it is a way I have chosen to convince myself that I can live with this disease. It does me no good to try to explain or complain about the difficulties that arise. I will continue to pray and be thankful for conquering the adventures whether anyone else but the Lord and I know the truth of what it takes to do the simplest things.
I find myself in all sorts of situations that I try to make look easier than they really are. At the grocery store the other day, I needed to get some frozen food out of the freezers. The doors swing open and then they swing shut pretty quickly. I had to master the art of opening the door and driving the electric chair into the freezer at record speed before the door closes thus keeping it open long enough for me to grab all I could in one fell swoop. I probably do not have to admit that this technique took some practice as I ended up with the door flying into my chair, arm or face many a times before I got the timing down. Each time I undertake this challenge, I am aware of other shoppers staring with curiosity at my method for conquering the frozen food section. I look them right in the eye and smile as if what they had just witnessed was something they ought to try themselves to make their lives easier. Needless to say, I have found that Travis and I are adapting well to loving all the frozen foods attainable on the lower shelves as anything higher than that is just not an option.
Transferring a body as long legged as mine has proven to be one of my biggest obstacles daily. There are times that I need to make these transfers on my own at work and to witness this would leave anyone in tears laughing. The location of most of my praying and talking takes place in the restroom. I travel in as if I was doing something as casually as it used to be but really I am scared to death. I have spent enough time on the floor of the bathroom here at work and else where, having not succeeded in my transfer, ending up on the floor and needing to request assistance from strangers in the next stall and it is not something I like to reenact.
So, I enter with caution moving the legs of the chair so it accommodates the toilet and the handicapped poles and pray. This procedure takes precision driving on my part and we all know how good I am at that! I make a leap of faith while holding my clothes in my mouth and grapping onto the various bars for dear life. Safe. Now I need to repeat this hurdle in reverse without falling through that immense space between the toilet and the chair which calls my name like the pits of Hell. This requires all the strength left in my arms as my legs are of no help so I pull myself slowly to safety. I am convince that this whole routine is much like an aerobic work-out and that I should lose enormous amounts of weight each time I have to live through it as it is at this point that I find I am having trouble catching my breath as if I had run for miles. Getting my clothes back into position is yet another piece of work and when all this is done, unimaginable amounts of time later, I leave the restroom with a smile on my face as no one must know the struggle that just took place. It used to be so simple.
I have found that wherever I am, traveling in my Iron Horse, folks handle my situation differently. Even as many times as I may pass someone I work with in the halls, they seem uncomfortable. They will see me headed their way and either look down at the ground as we pass or move over to the far side of the isle. (This may be the preferable option as one can never be overly cautious when in close proximity of my chair and I) Either way, I smile at them and say “Hello” or make some comment that seemed appropriate at the time. I do not want them to think I am embarrassed to be in the chair or that my life is completely tragic. I would certainly prefer to walk past them but I am still here on Earth and for that one if to be happy.
Wonderfully, there are those who accept my condition and treat me as they always have. My fantastic co-workers want to “Pimp-Up” my wheelchair and often ask for rides. I have found several stickers including “I am the Proud Parent of a Bloodhound,” “Life is Golden.” and “I Love Water,” that now adorn the back of the chair and I have a red tail light on the headrest that I turn on at special occasions. During the Holidays I met a child in the mall who was having a really hard time enjoying shopping with his mom. As I passed him, he looked at me and I heard him tell his mother, “I want one of those so I don’t have to walk.” I smiled; had to admit, I was getting around the mall pretty quickly.
Sleeping comfortably has become a thing of the past for me. I never really comprehended the magnitude of “Paralyzed.” I am unable to roll-over in any direction, tuck my legs up or stretch them out. As much as I will this to happen, it is as if my brain will no longer signal my body to do as it is told. Nothing moves without assistance. I have a rail on one side of my bed and I use it to help pull myself up and have learned various ways to grab the sheets and have them help me turn over. I have to move my legs in the direction I am headed with my arms and hope where we land is comfortable for a bit. All this is being accomplished as I have the breathing machine tubes in my nose tangling with every effort. (The Hundred plus Bloodhound who shares my bed, only adds to the adventure). There are times in the middle of then night when I flop back down in exhaustion as it all is almost unbelievable to me that something that I never felt was an obstacle has become such a challenge. I stare out my bedroom window and think.
Despite a lack of sleep, I am determined to crawl out of bed in the morning ready for the day. Easier said then done. I lift my legs and throw them onto the seat of the chair and inch my way to the side of the bed. Yet again another leap of faith this one a little more difficult as the chair cannot get very close to the bed. This venture in itself can take up to ten minutes; add that to showering and dressing and it takes me quite a while and all the energy I can muster first thing in the morning to head to work. But once in the van; music on, I am on my way. I was told the other day by one of the security guards that I had a huge smile on my face as I crossed through the gate. If she had any idea how much it had taken to get me there, she would have known why I was smiling.
I have been told I am a people person but I think that stems from my inability to see anyone uncomfortable, hurt, sad or angry. It is at that time when I become the one who feels awkward and ill at ease. My heart is talking constantly to me; what others are hearing and seeing is not necessarily what is going on inside. I would rather let the world see me handling ALS as if it was a piece of cake, a walk in the park, something easy. Maybe it is a way I have chosen to convince myself that I can live with this disease. It does me no good to try to explain or complain about the difficulties that arise. I will continue to pray and be thankful for conquering the adventures whether anyone else but the Lord and I know the truth of what it takes to do the simplest things.
