What did you do special for New Year’s? Do you have any special traditions? Or do you still need to make a New Year’s Resolution or two?
For years, my father and I had a routine we shared during the holidays when I would travel home from college. We would go downtown into Oklahoma City to the Oklahoma Blood Institute to donate blood. That became part of our New Year’s celebration.
Since 1970, January has been recognized as National Blood Donation Month in the United States. It is a time of year where blood is traditionally in short supply, partially due to the holidays, travel schedules, inclement weather and illness. No matter the time of year blood is always in need.
If you wish to donate, call your local blood bank. Be prepared to reveal your diagnoses and provide a list of the medications you use. If you are not able to give your own blood, you can still contribute by spreading awareness and encouraging others to donate, or by providing a financial donation.
Read this post in its entirety:
Give a Pint. Save a Life. Become a Blood Donor.
Wednesday, January 11, 2012
Monday, January 9, 2012
MS may talk out of turn, but I don't have to listen
Complete with a little "Blue Danube" waltz, the National Gallery of Art Orchestra celebrated the New Year in concert yesterday. The literature was light and flowing, quite uplifting, and fun to listen to. The concert was filled with Mozart works including the Overture to Marriage of Figaro, Piano Concerto No. 17, and the Linz Symphony. Our guest conductor served as the piano soloist, or maybe it was the other way around.
Most of the pieces scheduled only used two horns so I had quite a bit of time to sit back and listen during the rehearsals. If I wasn't sitting in my seat waiting my turn to play, I was listening from the audience. It's always a treat to be able to listen to the group from the front. The sound is much different than what is heard from the fourth horn chair.
If you've never been to a concert at the National Gallery of Art, we often perform in the West Garden Court which is full of marble and harsh, hard surfaces. Sound reverberates liberally and echoes through the corners of the room. The result can be lush, but it can also be mush. Very important to be as precise as possible. Unwanted sounds will certainly linger longer than desired which makes details hard to hear at times.
On Saturday, rehearsal began with the larger pieces (which four horns and full brass). Keep in mind that these musicians are a seasoned group. Adults who have played professionally for decades and are hired to do a good job. But it wasn't long until I wondered if we weren't back in middle school. Some of the musicians were creating a constant underbelly of whispering discussion while the conductor was working with other sections of the orchestra. I became amazed at the behavior (misbehavior) of some of my colleagues.
Why the talking? Some of the discussion included a quick - "Where did he say to start?" - or in collaboration - "Do you want to play the off-beats Viennese style or American?" But more often it was just chatter. I was embarrassed by my colleagues lack of respect for the conductor, fellow musicians, and the music. I kept waiting for the conductor to demand everybody's attention...but he never did. Perhaps he was more skilled in ignoring the disruption, or more focused, than I was at the time.
While I was thinking about the effect my colleagues behavior had on my own attention span, my thoughts migrated to MS. Yes, almost every experience or story can have an MS twist. While the sound of voices was low, they were contributing to a constant rumble. There were no shouts or declarations, but it was still a bit distracting and rude (in my opinion).
MS can be distracting. MS can be rude. MS can create a constant underbelly of symptoms which we might end up ignoring in order to stay focused on the positive in life. But when the rumble becomes disruptive, we might dig our heels in and say - "Whoa! Cut it out right now or else...."
Or else. What or else. What can we do about it?
If the disruption is a relapse, we can use an arsenal of steroids. If the disruption is disease progression, we learn to adapt to changing needs and abilities. If the disruption is constant, we can learn to filter it out and ignore it altogether.
In my body, I have a constant "rumbling" of numbness and altered vision. For the most part, I don't pay any attention to it, but I wonder.... What would my body feel like if MS were completely silent? Would a single symptom grab my attention as a lone musician in a concert hall might?
In a way, I like that my MS doesn't have too many soloists. The symptoms seem work more in symphony to create a blend. If my colleagues chitchatting were increasing symptoms, I might have been tempted to throw some steroids at them. But just as the conductor trusted that the voices would be quiet for the concert, I have faith that my symptoms will wane and fade into the background.
The symptoms may always be there, but I don't necessarily have to acknowledge them. Just like middle school children who seek any type of attention, positive or negative, MS always tries to be front and center. Fortunately, I'm the grown up and choose not to look it's way.
Most of the pieces scheduled only used two horns so I had quite a bit of time to sit back and listen during the rehearsals. If I wasn't sitting in my seat waiting my turn to play, I was listening from the audience. It's always a treat to be able to listen to the group from the front. The sound is much different than what is heard from the fourth horn chair.
If you've never been to a concert at the National Gallery of Art, we often perform in the West Garden Court which is full of marble and harsh, hard surfaces. Sound reverberates liberally and echoes through the corners of the room. The result can be lush, but it can also be mush. Very important to be as precise as possible. Unwanted sounds will certainly linger longer than desired which makes details hard to hear at times.
On Saturday, rehearsal began with the larger pieces (which four horns and full brass). Keep in mind that these musicians are a seasoned group. Adults who have played professionally for decades and are hired to do a good job. But it wasn't long until I wondered if we weren't back in middle school. Some of the musicians were creating a constant underbelly of whispering discussion while the conductor was working with other sections of the orchestra. I became amazed at the behavior (misbehavior) of some of my colleagues.
Why the talking? Some of the discussion included a quick - "Where did he say to start?" - or in collaboration - "Do you want to play the off-beats Viennese style or American?" But more often it was just chatter. I was embarrassed by my colleagues lack of respect for the conductor, fellow musicians, and the music. I kept waiting for the conductor to demand everybody's attention...but he never did. Perhaps he was more skilled in ignoring the disruption, or more focused, than I was at the time.
While I was thinking about the effect my colleagues behavior had on my own attention span, my thoughts migrated to MS. Yes, almost every experience or story can have an MS twist. While the sound of voices was low, they were contributing to a constant rumble. There were no shouts or declarations, but it was still a bit distracting and rude (in my opinion).
MS can be distracting. MS can be rude. MS can create a constant underbelly of symptoms which we might end up ignoring in order to stay focused on the positive in life. But when the rumble becomes disruptive, we might dig our heels in and say - "Whoa! Cut it out right now or else...."
Or else. What or else. What can we do about it?
If the disruption is a relapse, we can use an arsenal of steroids. If the disruption is disease progression, we learn to adapt to changing needs and abilities. If the disruption is constant, we can learn to filter it out and ignore it altogether.
In my body, I have a constant "rumbling" of numbness and altered vision. For the most part, I don't pay any attention to it, but I wonder.... What would my body feel like if MS were completely silent? Would a single symptom grab my attention as a lone musician in a concert hall might?
In a way, I like that my MS doesn't have too many soloists. The symptoms seem work more in symphony to create a blend. If my colleagues chitchatting were increasing symptoms, I might have been tempted to throw some steroids at them. But just as the conductor trusted that the voices would be quiet for the concert, I have faith that my symptoms will wane and fade into the background.
The symptoms may always be there, but I don't necessarily have to acknowledge them. Just like middle school children who seek any type of attention, positive or negative, MS always tries to be front and center. Fortunately, I'm the grown up and choose not to look it's way.
Thursday, January 5, 2012
Carnival of MS Bloggers #105
Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Strength, Hope, and Forgiveness in the New Year
by Kate Wolfe-Jenson of Dancing with Monsters
Whether it's forgiving myself or someone else, I've discovered it's a practice.
I love practice. Have I mentioned that before? Forgiveness is built into practice.
- I plan to do something. (Intention)
- I make an effort to do it. (Action)
- It doesn't go the way I think it "should" go. (Judgment)
- I let go of my ideas about what should have happened. (Mercy)
- I reset or re-envision my intention. (Resilience)
- Repeat.
Watching myself around forgiveness, I have found an unfortunate tendency to get stuck on step three.I judge. I try to let go, but it really shouldn't have gone the way it did and it's really not my fault, but if I'd only done it differently…
The image that came to mind is of carrying around a stone. I set it down for seconds and then, compulsively pick it up again.
Forgiveness becomes a practice of letting it go and letting it go and letting it go.
What Race Will you Win?
by Dee Dee Vickers
Some days my MS body feels okay -
but other days, in the bed I want to stay.
But get out of bed is a must for me,
cause if I don’t, that’s where I’ll always be.
One side of my left leg doesn’t feel right,
and the right side feels really tight.
But do a few stretches before I arise,
and once I’m up, each day is a surprise.
What challenges will I face walking the pool?
At least 30 minutes of workout is always my rule.
Then home to shower, and “put on my face;”
And now I am ready for the next big race.
Run a race, I think not for me;
but other challenges I soon will see
Paint a picture, arrange flowers in a vase,–
write a poem – these I consider to be my “race.”
We all have a different “races” we face each day;
but stay in bed, those races won’t come our way.
So stiff on one side, ache on the other,
but think of the “miles” we have still to cover.
Yes, it all comes when the sun peeks in at us
and no matter the ills, “just don’t make a fuss…”
The world is our canvas to paint on each day
So get out of bed and be on your way!
Dee Dee Vickers
Georgetown, Texas
January 5. 2012
by Natalie of Sunny, With A Chance Of Clouds
To protect a mind too fragile.
And determined by those misguided,
There is a purity that should remain unaffected.
If innocence and love could be spared.
And even though good intentions are meant,
The disadvantage comes to the one.
To become shielded,
Is no escape from that which can not be erased.
One shielded remains confused.
And is convinced truth must be avoided.
One shielded remains convinced...
A running away from any hints of truth is a benefit.
Unfortunate are those forever troubled.
Running away to shelter themselves,
A lie to comfort.
When truth is not enough,
Or which truth hurts too much?
by Marc Stecker of Wheelchair Kamikaze
One of the great paradoxes of dealing with MS: it's a disease one of whose hallmark symptoms is weakness, yet it demands the utmost strength from those dealing with it. From the psychological impact of the debilitating nature of the disease itself, to the shifting landscape of compromises and adjustments the patient must make in an attempt to maintain some semblance of normalcy, to the frustrations of dealing with an often maddening medical infrastructure, to the well-intentioned but misguided efforts of friends and family, to the sometimes heart wrenching indifference of the world at large, MS presents hurdles and challenges that require a measure of fortitude, grit, and endurance that most suffering from it never imagined they possessed. And yet as a group MS patients soldier on, displaying quiet courage and the hearts of lions.
Those suffering from the relapsing forms of the disease must deal with an illness ever lurking in the background, waiting to strike once again and leave them reeling. When each new attack finally subsides, often left behind are lingering symptoms, some weakness here, a little cognitive dysfunction there, distressing calling cards serving as permanent reminders that, despite all outward appearances, trouble resides within. Patients bestowed with the wonderfulness of progressive disease get to experience the pleasure of watching themselves circle the drain, day by day, month by month, year by year. Like the gradual shortening of days from July to December, the change barely noticeable on a daily basis but quite dramatic over the long haul, the disease creeps along an almost imperceptible pace, molehills becoming mountains with the passage of time. The slow but steady drip of the disease can lull one into to a false sense of security, until the guttural realization strikes that some physical action done without a thought only last year has now become cumbersome at best, impossible at worst. Yes, you can't be too strong.
Despite the obvious mettle needed to meet such challenges, many patients castigate themselves for their inability to withstand the ravages of the disease, disgusted with the fact that sheer force of will cannot beat back the onrushing tides. I have a close MS friend who every day fights through crippling spasticity so excruciating it often literally brings him to his knees but still manages, using a variety of disability aids and mobility devices, to put in his day at the office, sometimes forced to drive by using his arm to physically lift his leg on and off the gas and brake pedals (not recommended, by the way), compelled by his overwhelming desire to provide for his family and not give in to the disease. By day's end he can barely make it back into his house and onto the couch, scarcely able to lift his head, but instead of acknowledging his extraordinary efforts, he beats himself up over his perceived lack of toughness, his powerlessness to simply put a stop to the beast that so insistently ravages his body.
I recognize this same tendency in many of the patients I'm in contact with, and at times in myself. I put off the purchase of a power wheelchair for far too long, unwilling to acknowledge my tremendously obvious need because of the complicated psychological interplay of ego, self-image, and sensitivity to how I might be perceived. I sentenced myself to house arrest in a foolhardy effort to maintain an inner illusion of strength, when in fact true strength was only achieved when I finally gave in and reconciled myself to my need and situation. In a kind of mental jujitsu, what I thought was strength was actually weakness, and in turn, the very symbol of weakness, the wheelchair, became testament to a moment of strength when I finally let go and accepted my new normal. Yes, you can't be too strong.
Apart from the strength needed to deal with the disease itself, navigating through the labyrinthine and often counterintuitive tendencies of the modern medicine machine can test the determination of even the most valiant among us. Instead of making things easier on those suffering from chronic disease, it sometimes seems like the deck has been intentionally stacked against us. Trying to make sense of the never ending stream of research and theories about the disease can be mindbending. MS is autoimmune! MS is infectious! MS is caused by faulty veins! It's all the fault of genetics, toxins, vitamin deficiencies, dietary imbalances! Why not throw in out of balance humors, or unfortunate astrological alignments? Does anybody know what the frack they're talking about? What seems crystal-clear one minute is thrown into doubt the next. Up is down, down is up, and all the while I still can't use my right arm and leg, dammit!
The human tendency to become emotionally wedded to a particular idea or orthodoxy often pits patients against patients, in never-ending circular arguments that ultimately may only serve those who are all too willing to make a buck from our compromised circumstances. We must deal with pharmaceutical companies mandated to be more concerned with the bottom line then with patient well-being, and with doctors who are very often under their sway. Never is it more evident that modern medicine is a business than when you realize that most of the MS research news is reported on the financial pages of the newspaper. Desperately searching for something, anything to hang our hope on, we can be easy prey for practitioners of "alternative" medicine, who may be charlatans or saviors, often indistinguishable when cloaked in the fog of the ongoing battle and blinded by increasingly desperate circumstances. The constant clutter of contradictory and conflicting information can seem impenetrable, yet precisely because of this information overload it is imperative that we attempt to keep ourselves informed and clear headed, in order to self advocate in an environment that demands it. Yes, you can't be too strong.
We suffer through the indignities heaped upon us by miserly insurance companies and incompetent practitioners. Can there be a more surreal experience than having to fight with an insurance company drone to try to get an approval for a drug that has the potential to kill you? When I finally capitulated and agreed that I needed a wheelchair, I was greeted by wheelchair vendors who quite blatantly tried to pawn off products that obviously did not suit my circumstances but would do the most to fatten their commission checks, and by insurance company rules and regulations clearly designed to win a battle of attrition in the expectation that a needful patient will simply weary of the fight and take whatever is offered. In order to get a chair with qualities that would enable it to hold up under the rigors of the streets of NYC, I had to repeatedly appeal insurance company decisions, and to whom do those appeals go? Why, the very same insurance company, of course! After months of constant screaming battles, and with the help of the physical therapy staff at my neurologists office, I was finally granted an approval for the appropriate chair, a device the thought of which, at the time, left me slightly nauseated. It might have been easier to try to part the Red Sea.
In closing, I'll relate a story that another dear MS friend of mine recently told me. She requires home health aides to help her through the day, and a few weeks ago asked one to fix her a can of soup. My friend directed the man to the cupboard that contained the soup can, and to a drawer that held a good old-fashioned manual can opener, the kind that clamps to the edge of the can and then opens it through the action of the user twisting a rotating handle. The aide picked up the contraption and held it in his hands, stupefied. Somehow, this middle-aged man had never before even seen such a can opener, a device I believe I learned how to use when I was about five years old. In startled disbelief, my friend had to instruct the aide, in step-by-step fashion, exactly how to operate the befuddling instrument. When he was done, the aide explained to my severely disabled friend that being a home health aide was only his "hobby", and that he was a financial planner by profession! Given the bang up job the financial wizards have done with the world's economy, it's little wonder a manual can opener fell far outside this man's power of comprehension. Geez, you think the guy might be better off taking up birdwatching or stamp collecting, benign pastimes in which his gaps in rudimentary knowledge might not negatively impact the day of a sick person?
Honestly, you can't be too strong…
This concludes the 105th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on January 19, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, January 17, 2012.
Thank you.
Wednesday, January 4, 2012
"Ill Wind"
Sometimes there are just songs which make you laugh no matter how many times you hear them. This is one of those for me...the "Ill Wind" which is sung to the tune of the Rondo from Mozart's Horn Concerto No. 4 in Eb Major, K. 495. Please enjoy an original performance of Michael Flanders and Donald Swann from their second album, "At the Drop of a Hat," recorded in 1964.
(lyrics)
I once had a whim and I had to obey it,
To buy a French horn in a second-hand shop.
I polished it up and I started to play it,
In spite of the neighbours who begged me to stop.
To sound my horn,
I had to develop my embouchure.
I found my horn,
Was a bit of a devil to play.
So artfully wound,
To give you a sound,
A beautiful sound,
So rich and round.
Oh, the hours I had to spend,
Before I mastered it in the end.
But that was yesterday.
And just today,
I looked in the usual place.
There was the case,
But the horn itself was missing!
Oh where can it have gone?
Haven't you? Hasn't anyone seen my horn?
Oh where can it have gone?
What a blow, now I know,
I'm unable to play my Allegro.
Who swiped that horn?
I bet you a quid somebody did.
Knowing I found a concerto,
And wanted to play it,
Afraid of my talent in playing the horn.
But only today to my utter dismay,
It had vanished away like the dew in the morn.
I've lost that horn!
I know I was using it yesterday.
I've lost that horn, lost that horn,
Found that horn...gorn.
There's not much hope of getting it back,
Though I'd willingly pay a reward.
I know some hearty folk,
Whose party joke's pretending to hunt with the Quorn*.
Gone away! gone away!
Was it one of them who took it away?
Will you kindly return that horn?
Oh where is the devil who pinched my horn?
I shall tell the police!
I want that French horn back.
I miss its music more and more and more.
Without that horn I'm feeling lost/sad and so forelorn.
I found a concerto and wanted to play it,
Displaying my talent at playing the horn.
But early today to my utter dismay,
It had totally vanished away.
I practiced the horn and wanted to play it,
But somebody took it away!
I practiced the horn and was longing to play it,
But somebody took it away!
My neighbour's asleep in his bed,
I'll soon make him wish he were dead,
I'll take up the tuba instead - WAA WAA !
Another version of the famous "Ill Wind" performing by Boris Brott.
*The Quorn is a famous an English fox hunt.
(lyrics)
I once had a whim and I had to obey it,
To buy a French horn in a second-hand shop.
I polished it up and I started to play it,
In spite of the neighbours who begged me to stop.
To sound my horn,
I had to develop my embouchure.
I found my horn,
Was a bit of a devil to play.
So artfully wound,
To give you a sound,
A beautiful sound,
So rich and round.
Oh, the hours I had to spend,
Before I mastered it in the end.
But that was yesterday.
And just today,
I looked in the usual place.
There was the case,
But the horn itself was missing!
Oh where can it have gone?
Haven't you? Hasn't anyone seen my horn?
Oh where can it have gone?
What a blow, now I know,
I'm unable to play my Allegro.
Who swiped that horn?
I bet you a quid somebody did.
Knowing I found a concerto,
And wanted to play it,
Afraid of my talent in playing the horn.
But only today to my utter dismay,
It had vanished away like the dew in the morn.
I've lost that horn!
I know I was using it yesterday.
I've lost that horn, lost that horn,
Found that horn...gorn.
There's not much hope of getting it back,
Though I'd willingly pay a reward.
I know some hearty folk,
Whose party joke's pretending to hunt with the Quorn*.
Gone away! gone away!
Was it one of them who took it away?
Will you kindly return that horn?
Oh where is the devil who pinched my horn?
I shall tell the police!
I want that French horn back.
I miss its music more and more and more.
Without that horn I'm feeling lost/sad and so forelorn.
I found a concerto and wanted to play it,
Displaying my talent at playing the horn.
But early today to my utter dismay,
It had totally vanished away.
I practiced the horn and wanted to play it,
But somebody took it away!
I practiced the horn and was longing to play it,
But somebody took it away!
My neighbour's asleep in his bed,
I'll soon make him wish he were dead,
I'll take up the tuba instead - WAA WAA !
Another version of the famous "Ill Wind" performing by Boris Brott.
*The Quorn is a famous an English fox hunt.
Monday, January 2, 2012
Inspiration Found Within Letters of Disease
M - Motivation
Motivation is at the heart of almost everything we do. We must be motivated to get up every morning to face the day. We can share of ourselves and provide motivation to others. On a personal note, I hope to be able to motivate others to live better lives with MS.
U - Understanding
I am blessed that I have a fiance and mother who truly understand the roller coaster which is living with an unpredictable disease. When I don’t feel well, I know that I won’t be judged for not rising to an occasion.
L - Love
What can I say? Love is vital to life. To give love and to receive love. To be surrounded by love. To know that you are loved. This is a basic need.
T - Trust
Trust is a tricky thing. Sometimes when I have doubts, I must remind myself to trust that things will indeed be ok.
I - Inspiration
My students inspire me each week. I don’t have as many students as I once did, but the ones I do have are highly motivated to learn and succeed. I have no slackers right now which is truly a blessing.
Read this post in its entirety:
M.U.L.T.I.P.L.E.S.C.L.E.R.O.S.I.S. - What would your letter say?
Motivation is at the heart of almost everything we do. We must be motivated to get up every morning to face the day. We can share of ourselves and provide motivation to others. On a personal note, I hope to be able to motivate others to live better lives with MS.
U - Understanding
I am blessed that I have a fiance and mother who truly understand the roller coaster which is living with an unpredictable disease. When I don’t feel well, I know that I won’t be judged for not rising to an occasion.
L - Love
What can I say? Love is vital to life. To give love and to receive love. To be surrounded by love. To know that you are loved. This is a basic need.
T - Trust
Trust is a tricky thing. Sometimes when I have doubts, I must remind myself to trust that things will indeed be ok.
I - Inspiration
My students inspire me each week. I don’t have as many students as I once did, but the ones I do have are highly motivated to learn and succeed. I have no slackers right now which is truly a blessing.
Read this post in its entirety:
M.U.L.T.I.P.L.E.S.C.L.E.R.O.S.I.S. - What would your letter say?
Sunday, January 1, 2012
Happy New Year 2012!
If the past couple of weeks are any indication of how busy the coming year may be, it will certainly be packed with lots of activities, friends and loved ones. May 2012 treat us all with good health and fun times.
Subscribe to:
Posts (Atom)