The symptoms of multiple sclerosis can vary greatly from person to person; but there is one universal truth for all MS patients: you wake up in the morning never knowing what to expect! I once read one man's account of how he dealt with it, he said that every morning when he woke he would sit up in bed and do an "MS inventory" before getting up for the day. I know exactly what he means... what is my fatigue level, will I be able to stand on my own, walk on my own? Are my hands working today, etc. etc.
Yesterday I suddenly noticed while getting ready for work in the morning that something was missing. It was that familiar sound of my right foot dragging behind me! To my amazement I discovered that I was able to walk almost completely normally; I was able to make both feet clear the floor as I walked - no more foot drop! I was so excited. I was even able to walk freely around the building where my office is - no walker, no cane. Normally I would not have been able to walk to the Ladies Room, even with my walker. I was giddy with joy as I showed off to my friends and colleagues. One of them even commented that I "looked like a queen" walking down the hall. Yet, I had this nagging feeling that none of them fully shared in my excitement. When I shared my ability to walk with my students, they applauded! THERE was the mirrored emotion I was looking for! I told myself that the subdued excitement from the others was most likely due to the fact that this phenomenon had happened twice before over the last two years; but I really believed this time was different. This newfound freedom even lasted the entire day, not like the other times that were once about 20 minutes, and the other, a couple of hours. This was the real thing. (I hoped.) Of course I overdid myself - walking as much as I was able. It just felt so good. I fell into bed last night, exhausted, but very happy and content.
I awoke about 4:30 this morning very tired but still able to pick my feet up and walk (albeit VERY slowly!) I went back to bed happy with the thought that after a few more hours of sleep I would be able to walk just like the day before. When I finally woke up to face the day I found that I was having difficultly moving my arms and hands, even more than usual. When I got out of bed I was saddened to discover that the foot drop was back and I was having to pull my feet across the floor again. It was as if yesterday had never happened.
While I enjoy these moments of normalcy immensely, and it's so good to know that given ample "juice" my body is still able to function as it should, I almost feel like I am being mocked. A fresh reminder of what has been stolen from me.
Late last year my physical therapist introduced me to an electrical stimulation (E-stim) product called Bioness. It took a bit of tweaking to hit the right nerves and find the right amperage, but with the E-stim I was able to walk without the foot drop. It was very exciting. We worked with the Bioness units for a few weeks, and I was convinced that the best Christmas gift I would receive that year would be the ability to walk normally again. Unfortunately, two days before Christmas Bioness called and I was told that the E-stim units were not covered in my "corporate policy" with Blue Cross. It can be very frustrating to have glimmers of hope that are then snatched away.
I think that one of the best ways to deal with any disappoint in life is to take that event and then put two extra "spins" on it. First, try to find some sort of silver lining or at least a lesson learned; and second add a dash of humor. I would say that the silver lining in being periodically baited with the hope of walking again is that word "hope". At least there is some hope. It may not work out, but at least I can believe the possibility exists. As far as the humor... well, I'll have to think hard about that one! Hmmmm... Can't think of one for me personally, but here is a cute joke. I got it from this website (incidently dedicated to MS patients) that has many good jokes about disabilities http://www.shof.msrcsites.co.uk/disa.html
So, there are these three disabled guys (one is an amputee, one is blind, and one has MS and is in a wheelchair). They are returning home from the Paralympic games in the Middle East and are flying over the Sahara Desert. The plane crashes into the desert, and they are the sole survivors.
After waiting quite a while to be rescued, they finally begin to start working their way across the desert in search of water. The amputee leads the way, and the blind guy pushes the man in the wheelchair. Suddenly they come upon an oasis of water.
The amputee goes into the water first, cools himself down, drinks some water, and then walks out the other side with, lo and behold, a NEW LEG!!!! He is so excited and encourages his friends to do the same.
The blind man offers to help the guy in the wheelchair get into the oasis, but the guy refuses. He stubbornly insists he can push himself; so the blind guy rushes into the oasis, cools off, drinks some water, walks out the other side, and lo and behold, HE CAN SEE!!!
The guy in the wheelchair is now REALLY excited! He pushes with all of his might and wheels himself into the oasis. He cools off, drinks the water, and wheels out the other side. Lo and behold, he has FOUR NEW TIRES!!
Which reminds me, there is something wonderful that is happening today. My mother is taking me to get new batteries for my powerchair! This will help me immensely (see next post for why!) I am very grateful to have family in the area that are able to help me do the things that I cannot.
Friday, April 30, 2010
Monday, April 26, 2010
Making a Bad Day One of the Best Days Ever
Well, the batteries for my electric wheelchair are basically on life support - whenever I pull the plug I only have a few "quality" moments to share with them. Since I kept getting stranded on campus when my battery died, I decided to be clever yesterday and use my manual wheelchair instead. I just tried to mentally prep for that.
BTW, I am a believer of mind over matter, so I get REALLY frustrated when that doesn't work with the MS. I was preparing for a first date a few weeks ago and jokingly asked my physical therapist Janice if she thought I would be able to walk normally in a 9 days. We laughed, but then I did lament that the "mind over matter" philosophy just didn't work here and I was having trouble accepting that. She reminded me that I'm an [almost] neurobiologist and I should know why it just didn't work in this situation. Still, one really likes to believe in miracles.
So, back to the wheelchair... I wasn't even able to wheel myself more than a few yards. (My arms have weakened almost as much as my legs). While this could have made for a horrible, frustrating day; it ended up being one of the best days I've had in a long time. I was so moved by how many people went out of their way to help. I had at least four complete strangers take the initiative to help (one of these was a woman that helped push me across the railroad tracks as I hurried to catch my train.) But there was one special person that really touched my heart.
I travel from Dallas to Denton on a commuter bus, and every morning I have the same driver (Ron). Our usual stop on campus leaves me with an approximately 1/4 mile trek left to my lab. However, yesterday Ron accessed the situation and after making his main stop, broke his route and drove me right to the front door of my building. Not only that, but knowing that I would have to catch another commuter bus that afternoon and that I would need another push across campus, volunteered (more like insisted!) to come back - on his own time, in his own car and push me to the bus stop!
I was so moved by that gesture. Then yesterday Ron informed me that he had talked to his supervisors about breaking the route and his plan for the afternoon, and they told him that if he had trouble obtaining a parking permit or parking spot (the norm for our school), that he should call them and they would get a supervisor to drive him over in one of their DCTA cars that have permission to park anywhere on campus. I was so touched by all of these people who were trying to help me. This morning I drove my electric wheelchair because Ron offered to drop me off at my door again this morning and since he's driving the afternoon bus today too, he's coming around to pick me up again later today. What a guy!
Let me be clear here though, especially for any MS patients that may be reading this and were looking for validation and not sugar-coated reality. MS sucks. A lot. It can be very painful, and it can affect your mobility, your vision, ability to swallow, ability to breathe, among many other things; but there is one silver lining - you get to see the goodness and light in people that many people don't get the opportunity to see.
It is unfortunate that most people are not offered these grand gestures of kindness (they should be). When I was first diagnosed with MS my mother was very angry because she felt that I had already had an extremely difficult life. She felt that it just wasn't fair (and there were many times I agreed!), but you know sometimes it almost seems that getting MS was my "reward" for these hard times. Hmmm... that sounded a bit crazy. It's just that despite the physical pain and limitations I truly feel more loved and blessed now than at any other time in my life.
BTW, I am a believer of mind over matter, so I get REALLY frustrated when that doesn't work with the MS. I was preparing for a first date a few weeks ago and jokingly asked my physical therapist Janice if she thought I would be able to walk normally in a 9 days. We laughed, but then I did lament that the "mind over matter" philosophy just didn't work here and I was having trouble accepting that. She reminded me that I'm an [almost] neurobiologist and I should know why it just didn't work in this situation. Still, one really likes to believe in miracles.
So, back to the wheelchair... I wasn't even able to wheel myself more than a few yards. (My arms have weakened almost as much as my legs). While this could have made for a horrible, frustrating day; it ended up being one of the best days I've had in a long time. I was so moved by how many people went out of their way to help. I had at least four complete strangers take the initiative to help (one of these was a woman that helped push me across the railroad tracks as I hurried to catch my train.) But there was one special person that really touched my heart.
I travel from Dallas to Denton on a commuter bus, and every morning I have the same driver (Ron). Our usual stop on campus leaves me with an approximately 1/4 mile trek left to my lab. However, yesterday Ron accessed the situation and after making his main stop, broke his route and drove me right to the front door of my building. Not only that, but knowing that I would have to catch another commuter bus that afternoon and that I would need another push across campus, volunteered (more like insisted!) to come back - on his own time, in his own car and push me to the bus stop!
I was so moved by that gesture. Then yesterday Ron informed me that he had talked to his supervisors about breaking the route and his plan for the afternoon, and they told him that if he had trouble obtaining a parking permit or parking spot (the norm for our school), that he should call them and they would get a supervisor to drive him over in one of their DCTA cars that have permission to park anywhere on campus. I was so touched by all of these people who were trying to help me. This morning I drove my electric wheelchair because Ron offered to drop me off at my door again this morning and since he's driving the afternoon bus today too, he's coming around to pick me up again later today. What a guy!
Let me be clear here though, especially for any MS patients that may be reading this and were looking for validation and not sugar-coated reality. MS sucks. A lot. It can be very painful, and it can affect your mobility, your vision, ability to swallow, ability to breathe, among many other things; but there is one silver lining - you get to see the goodness and light in people that many people don't get the opportunity to see.
It is unfortunate that most people are not offered these grand gestures of kindness (they should be). When I was first diagnosed with MS my mother was very angry because she felt that I had already had an extremely difficult life. She felt that it just wasn't fair (and there were many times I agreed!), but you know sometimes it almost seems that getting MS was my "reward" for these hard times. Hmmm... that sounded a bit crazy. It's just that despite the physical pain and limitations I truly feel more loved and blessed now than at any other time in my life.
Friday, April 16, 2010
Here We Go
I am starting this page at a suggestion of a friend. I have multiple sclerosis, and I was diagnosed while right in the middle of earning a Ph.D. in neurobiology (ironic!) These are both difficult life events but managing them at the same time.... Well, compare it to giving birth while competing in a triathlon!
Just yesterday my friend shared with me a recent fortune cookie message: "You will soon witness a miracle." and said he had to think it applied to me. I would like to think it might, but who knows? Miracles come in so many shapes and sizes and so many go unrecognized. There is a Chinese Proverb: "The miracle is not to fly in the air, or to walk on the water; but to walk on the earth."
Like so many people, I am a Type A personality and a list maker. A "successful" day means I've completed that list (to perfection). I began graduate school with the goal that someday I would find the cure for schizophrenia (a promise I once made to a friend and former co-worker who suffered from this disease.) I wanted to do something amazing with my life; but now I finally get it. Just to walk on this earth, live our lives, and overcome the obstacles that will, without fail, get in our way - THAT is the miracle. (By the way, some days are a lot more miraculous than others!)
This site is a place where I will be able to journal (and sometimes vent!) about life. Quite a bit will probably focus on the MS. I remember while going through that long, tedious process of being diagnosed a few years ago - it was scary. I searched the internet not just for scientific literature but for those with the personal experience. I think it really helps to be validated by other patients just like yourself; but I will also be throwing in new research and therapies I might hear about. I would like to mention here for anyone else that may read my blogs, that my area of research is developmental neurobiology. I am not a specialist in degenerative disorders nor am I a neurologist (MD)!!!
I am very lucky to have a supportive family and such caring friends. As my MS has progressed I have seen how caring people really can be. Before, like everyone, I just hurried through life barely noticing the strangers that walked past me. Now I am "fortunate" enough to sometimes need the help of these strangers, and it amazes me how many are willing to stop and offer this help.
No matter what happens to my body because of multiple sclerosis - the pain, the physical limitations, I know that it will be softened by these acts of strangers and the loving gestures of friends. That's what I call a miracle.
Just yesterday my friend shared with me a recent fortune cookie message: "You will soon witness a miracle." and said he had to think it applied to me. I would like to think it might, but who knows? Miracles come in so many shapes and sizes and so many go unrecognized. There is a Chinese Proverb: "The miracle is not to fly in the air, or to walk on the water; but to walk on the earth."
Like so many people, I am a Type A personality and a list maker. A "successful" day means I've completed that list (to perfection). I began graduate school with the goal that someday I would find the cure for schizophrenia (a promise I once made to a friend and former co-worker who suffered from this disease.) I wanted to do something amazing with my life; but now I finally get it. Just to walk on this earth, live our lives, and overcome the obstacles that will, without fail, get in our way - THAT is the miracle. (By the way, some days are a lot more miraculous than others!)
This site is a place where I will be able to journal (and sometimes vent!) about life. Quite a bit will probably focus on the MS. I remember while going through that long, tedious process of being diagnosed a few years ago - it was scary. I searched the internet not just for scientific literature but for those with the personal experience. I think it really helps to be validated by other patients just like yourself; but I will also be throwing in new research and therapies I might hear about. I would like to mention here for anyone else that may read my blogs, that my area of research is developmental neurobiology. I am not a specialist in degenerative disorders nor am I a neurologist (MD)!!!
I am very lucky to have a supportive family and such caring friends. As my MS has progressed I have seen how caring people really can be. Before, like everyone, I just hurried through life barely noticing the strangers that walked past me. Now I am "fortunate" enough to sometimes need the help of these strangers, and it amazes me how many are willing to stop and offer this help.
No matter what happens to my body because of multiple sclerosis - the pain, the physical limitations, I know that it will be softened by these acts of strangers and the loving gestures of friends. That's what I call a miracle.
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