Wednesday, May 28, 2008
Here is my question Mr. Legislator: How can the government allow a sick or disabled person to wait up to 24 months for helP? This seems unconscionable to me.
I am writing to ask that you provide more funding now for indigent care. I am also asking that you help change the laws that can make a person wait 24 months for the funding and care they need.
Addionally, I would also like to see more funding dedicated to helping poor,uninsured people with MS get their medications. I would specifically like to see funding to pay for interferons that slow the spread of the disease. I would like to see more funding for cortico steriods for those suffering a relapse or flare up of their MS. Sir, thank you for considering my plea on behalf of those receiving indigent care and the MS sufferers who need insurance immediately.
*Blog Readers please send letter like this one to your legislator today.
Thursday, May 22, 2008
Lately I feel like no one gets me except other people with MS. I know that people mean well but I am getting tired of people telling me all the things I "need" to do. I am also tired of the looks I get when I say certain things. For example, if I say, "I don't care what others think," whoever I tell that to acts like I'm a bitch for saying that. The thing is that I don't mean that statement in a bitchy way. I just mean, "It's all right now, I learned my lesson well, you can't please everyone, you've got to please yourself." It's not me being depressed,it's not me blowing other people off, it's just me recognizing that I need to draw boundaries and change my life.
My husband expressed distress about the fact that I kept saying that I was "myself plus 10% now" because he said it makes it sound like I am asymptomatic so I have been making an effortto let people know that even though I seem ok, I'm often not. I have been telling folks that I am afraid to fall asleep. I explain the symptoms I feel when I am tired but I can sense that when I am through, people wish I had not addressed this issue so matter-of-factly. I think they do not appreciate my honesty. I actually have gotten the sense that rather than addressing this with me,my friends are discussing me behind my back. You might say, "Well, you just said you don't care whatpeople think so why do you care?" I say, "I don't but real friends should say this to my face."
I am also sick of the whole, "Are you seeing a therapist?" bit. I am guilty of doing this to friends and even my husband but I am sick of everyone telling me that I can't deal with this big change unless I get therapy. Well trust me, if I think I need therapy, I'll go. Sorry for the rant...
Wednesday, May 21, 2008
Hi Nadja - I am going to weigh in on your questions to the best of my ability.
1) What causes MS?
There is nothing definitive at this point, but there is speculation based on much study and data that is now available.
It would appear that there is a gene that is present in all that have MS.
This gene is turned on by yet to be determined factors, as they know that some who possess this gene never develop the disease.
Some of the factors under scrutiny are:
- measles or rubella as a young child
- other childhood viruses
- environmental factors
2) Can MS be cured?
No - not at this time... no matter what you may read as much as I hate to say this.
I believe the cure is no more than a decade off. It may come in the form of a vaccine.
3) Interferon's and other therapies absolutely do help. There is much data available to support this, and everything I am writing to you today.
Interferon's seem to be the most effective at slowing the progression of the disease.
Of the three interferon's available, the drug Rebif has the highest level of interferon available.
Even when the disease seems silent it is not silent inside the brain, that is why treatment is paramount for all of us!
4) Having a healthy lifestyle can benefit you very much no matter what your health condition,
however there is no data to suggest any of the things you mention have a direct correlation to the progression
of MS. All these things however will make you more comfortable, and that can never be a bad thing.
(when my leg muscles get very tight for several days and make it hard to walk naturally stretching is super
helpful for example, but stretching everyday does not make those episodes go away)
5) Every single person with MS is different - you must find what works best for you.
That took some time for me to find a proper balance that works for me - take it slow
as you rediscover your body in this new way. You'll find your comfortable path naturally.
Don't force yourself... ease into this gently... it's the kindest thing you can do for yourself.
• Last - I am currently on the drug Tysabri - it is a monoclonal antibody, not an interferon. I have been on
all of the interferon's over the past 15 years and they have done a great job for me. Through the years
I have had to change meds as my situation warranted it. It is so nice to have so many options. It makes
managing this a lot more successful over a long period of years.
I have 3 kids about your age, and 3 grandkids. (I had my first at age 20 - I am 52 now) I have owned my own advertising/PR business for 19 years, and
have owned, produced and hosted a very popular jazz show for 13 years. I do a live 4 hour show every Sunday.
I have traveled all over this country and Europe. I have a loving wonderful marriage.
I have done everything I dreamed of for my life and so much more... and I'm not done yet!!!!!!!
The MS didn't stop me, it made me realize I better get off my ass and grab life while the grabbing is good... and it's still good
all these years after my "d-day" (diagnosis day)!!!
I know how focused you are on this right now, but you won't always be. Most days I give it little of my thought unless
I am forced to by virtue of an annoying flair... or being delighted with involvement in an MS event to raise money,
or I am reaching out to someone sweet like you who is so new on her long journey. I for the most part live a very normal life.
Most people that I meet don't have any clue of my MS unless I make it known. I prefer to be known as the great jazz broadcaster
who happens to have MS, not the girl who has MS that is on the radio. I hope that makes sense.
I know you are looking for so many answers right now Nadja. Some you will find through your research, but many of them are yours to develop.
Your life is still very much in your hands even though it may not feel that way to you right now.
You can listen to my show on the internet while I am on the air every Sunday morning 8- noon EST by logging onto
1015theriver.com and then click on listen live. I'd love it if you would tune in sometime - it's a great way to kick back, groove out and enjoy.
I also imagine that at first many of those with MS tell others a lot about their symptoms but in time, they stop talking about everything except the major stuff. I guess that at that point, if they seem cheery, well-adjusted and physically well that most of those around them assume they are no longer experiencing symptoms. I doubt this is really the case though.
I am in "Remission" and in some ways I would say I am 110% of what I used to be but in another sense I am still really sick. I am exhausted all the time now. I still have trouble focusing my eyes. I get spasms in my back and neck. Nights are the worst... I am depressed, tired and afraid to go to sleep. Every REM sleep has its terrors. "Brain Cheese" mentioned "Going down the rabbit hole" in her blog. Every night I go down that hole, sucked into the black vortex of REM sleep. I startle awake, feeling I have forgotten to swallow. I wonder if I will wake up or die somehow during the night. I have already made my peace with death so I usually go to sleep without fear now.
When I awake I have to come back anyway. I awake nauseated every time. It is only through breathe that I slowly resuscitate myself each morning. I awake blurry-eyed and sick. I mediate and use my breathe to clear the symptoms enough that I can get out of bed. Once I have completely cleared my body in the bathroom, I begin to see a little better. Once I have eaten and swallowed some black tea I approach the reality where "normal" people live but even then I am other.
Even with "benign" MS you know that it is not really benign because you can have a relapse at any time and then it is no longer benign. You live, trying not to wait for the other shoe to drop. You try to be present, define priorities and set boundaries but people are looking at you like you are fine and that you are also a big bitch for not caring anymore what anyone else thinks. I am sorry but half the time I am so depressed I don't even care what I think. I give myself a pep talk and say that it's ok to be sad sometiomes but I hate myself for even dwelling.
Monday, May 19, 2008
I also got to spend some time with friends this weekend. On Saturday we went to dinner and sat on the awesome patio at Pearl Street Grill. We then went out to Vinyl and caught up with some other friends.
On Sunday I went to a great yoga class and then stayed after to sign up for yoga teacher training. I also worked in the yard with Matt but he did most of the work. I slept like two hours in the middle of the afternoon and then got up, made dinner, watched T.V. and played Wii with Matt. Then I slept 9 more hours but I'll probably take another nap soon.
Today I am going to buy a car, get some groceries, buy some stuff for the new business and go to my second MS meeting. I may do some other stuff too but I'm kind of just kicking back and enjoying the sunshine so we'll see. I do plan to finish a dress I am refashiioning but I'm in no rush.
Tomorrow I will probably work on the memoir.
Friday, May 16, 2008
Thursday, May 15, 2008
At this juncture I find I must write a brief letter if I am going to continue publishing a public blog. Let me begin by saying that first and foremost, I am sane and second, I am a writer. Other writers understand where I am coming from. They understand concepts like genre, and genre appropriate writing and I thought that I had been explicit about the genre/s in my blog but clearly I have not. This blog represents the fusion of about four different genres: action research (based on systems theory), blog (informal, up to the writer, use of text and computer language and informal voice), surrealism (in the vein of Hunter S. Thompson and Andre Berton) and memoir.
It is clear that few of my readers truly understand the genre of memoir so I am going to take a moment to give some clarifications of what I mean by memoir by drawing on the words of some gurus in this genre. I am currently re-reading Inventing the Truth: The Art and Craft of Memoir by William Zinsser. According to Zinsser (1995), “This is a book by eight writers who have gone looking for their past in acts of writing.” These experts include: Russel Baker, Annie Dillard, Alfred Kazin, Toni Morrison, Eileen Simpson, Ian Frazier, Henry Louise Gates Jr. and Jill Kerr Conway. I use these expert writers as my guide when I write memoir.
I am particularly struck by certain things they say in this book about crafting memoir. Contrary to popular opinion, memoir is not to be confused with autobiography. In autobiography the writer gives an accurate day-by-day account of their entire life. According to the writer, this is the “true,” entire story of the writer’s life. This is not true for memoir. Memoir is merely a collection of snapshots that the writer chooses to present to their readership for impact. Some of it may not even be “true.” The House on Mango Street by Sandra Cisneros is a perfect example. We often teach this book as memoir but it is not the true story of Cisneros’ life and it is sometimes taught as the fairy tale or fiction genre as well. It also only focuses on a few years in the life of the protagonist Esperanza.
My blog is not a window into my entire mind and it is only a window into my brain, not my whole brain. I have been suddenly blessed with unusual talent and “genius” but you will just have to trust me on this. Some of you see the changes in me as sudden and dramatic. They are but they were spurred by a few powerful catalysts. 1) A diagnoses of MS
2) A change in my brain and body chemistry
3) A slowing down of my thoughts, if not my actions
4) A burst of spontaneous, creative energy that has allowed me enormous personal clarity, integrity and conviction.
The last has been a great challenge for many of my mentors, teachers and family members. They are accustomed to me looking to them for guidance and advice and then seeing me use what they tell me to move forward. I am still listening but as they say in yoga, “You are your own best teacher.” I am now my own best teacher. This does not mean I have ceased to value my mentors but as Mark Clarke notes in A Place to Stand (2006), we have to have a coherent self and a coherent set of beliefs before we can change the world. I am working from this place and using my gut as a guide. Although some of my readership may think they are dealing with “crazy Nadja,” they are not. I am uber-focused and so I can accomplish tasks that are seemingly huge and life-changing with little effort and almost no challenge. I can start several businesses just by sitting on my couch and using a computer. I now have the clarity, resources and intelligence to shape my life and those of the people I love into exactly what we dream of but I now need those people to just trust me because they cannot know what it is like to be in my head.
I now conclude my letter with a quote from Inventing the Truth and a caution that you read my blog for exactly what I have stated it is.
"The title Inventing the Truth was suggested by an insistent theme that kept bobbing up: that the writer of a memoir must become the editor of his or her own life, imposing a narrative pattern and an organizing idea o an unwieldy mass of half-remembered events. 'The autobiographer’s problem,' said Russel Baker 'Is that he knows too much; he knows the whole iceberg, not just the tip.' Refining the point, Annier Dillard said, 'The writer of any first person work must decide two obvious questions, what to put in and what to leave out.'"
I remind you now, do not read my blog as my daily “journal” or my whole story. Read it for what it is, a set off writing explorations and an examination of a variety of concepts affecting MS patients, those who know them and the issues we are facing globally today as we attempt to change the world.
I move forward at a pace that seems rapid but I am guided by Ghandi’s maxim, “Be the change you want to see in the world.”
Nadja Yse Stringer
Wednesday, May 14, 2008
Tune in for the best from "General Striker," an old hippy socialist with an attitude who fathered my older brother and sister.
Diagnosed with MS: May '03
Diagnosed with Lyme: May '07
A cool blog by another MS suffererer.
OMG, I have been making X men jokes about myself and now I have the evidence. Check out these sites. I am not crazy. MS can make you a genius. Perhaps I’ll test my IQ and then save the world (lol).
Tuesday, May 13, 2008
My mother reminded me that just because you have a life-changing disease it doesn’t mean you have to pressure yourself into saving the world. I agree but sometimesI feel this need to hold up a façade of boundless positivity so that everyone else can cope with my illness. I want to hear everyone saying, “Oh, you’re handling this so well, you’re such an inspiration.” What, all my optimism and hard work didn’t matter before? Was I wrong to want recognition for all the hard work I put in before? Was I wrong to feel that I excelled? Was I wrong to say that I did a good job?”
It actually really pisses me off when I think about it. I guess that’s a sign I am healing physically. In fact, physically I’m suddenly amazing (almost superhuman and uncanny) but inside I can hear the demons whispering more loudly than ever.
Why is it that in this society that if you get a disease, and prevail you are a source of inspiration but if you just excel and know it (and you’re female) you’re a bitch? Is our society seriously so jacked up that it’s not ok for a woman to have a healthy self esteem? Every time I say something nice about myself I have to do so with a caviott like, “Not to be conceited” or “Not to sound bitchy but…” If I was a man I wouldn’t have to do that.
Now that I am "diseased" people seem to want to hear what I have to say. If I tell them about my X-Men powers it is ok because now I am a brave diseased person. Now, I can wear the MS badge if I want, I can “play” the guilty MS card and get what I want, I can ask others to do me favors, to fetch to carry, whatever…
Ok, so this isn’t the usual Tizer fair. It’s not uplifting, it’s not grateful, it’s not blessed but boy is it pissed off. I am really angry at my students right now. How can they have the audacity to disrespect my sub? How can they have the audacity to still misbehave after a visit from a dean. Even when I spoke over the speaker phone in Spanish, they still didn’t pull it together. I had to call a stressed colleague to bail me out. I hate that. I like being in the thick of things. I know my colleagues know that I can and do pull my weight but I feel terrible about the burdens placed on them by my absence. I realized yesterday that our communication is breaking down because they are so busy and stressed addressing and filling my absence. I left my friend several messages yesterday to call me and I know she thought it was because I needed bailing out. It wasn’t. I thought she needed me and I felt bad about not being there. She never did call me back and I imagine it’s because she thinks I can’t be of help. I hate that. I have always tried to be everything to everyone. I am over that and I have been drawing boundaries but I feel like my colleagues and my school really need me right now and I’m not there for them.
And, there’s the informational MS meeting I went to yesterday. I was feeling great. BTW, I woke up bilingual, my brain has become filed like a computer with folders of everything I ever learned, I can stand on my head and I think I can even do math like never before. Without caviott, I am a freakin’ genius and since I’m diseased maybe no one will spank me for being a woman with the audacity to say so. I am using at least 15 percent of my brain and I am like a well-oiled machine. Apparently this is actually common in MS patients because the brain finds new pathways to cope with the changes so sometimes MS patients do become like mutants or X-men. Anyway… back to the support group.
I thought I could handle it just fine. I was going to learn about ADA and worker’s rights. I thought I would be ok, but just going into the room made me cry. Reading the pamphlet called “But you look great” really brought things home. It talked about the invisible symptoms of MS, how you look good on the outside but often feel crappy. I look amazing and ripped right now but this morning I cried for two straight hours for no apparent reason. When I was at the support group I could barely keep myself from crying (in the end I did and they were all very supportive and reassuring). I ran to the bathroom three times, not just to cry but to leak water from everywhere. I would think I was done and then water, like when a woman has a baby would leak from my body. I even was drying my hands only to find my underwear soaked and a need to go back into the stall and let the water, and I really don’t mean urine (that’s not where it came from) drip out of me. I was so mortified. I told my best friend but I didn’t tell my husband and I just kept running out. He thought I was running away from him but I was just running towards the bathroom trying to deal with all that unexplained water…
Man, this is all proving much harder than I thought it would be considering I feel so good physically. I imagine this will be very uncomfortable for many people to read but I had to write it. I know that at least other people with MS and their caretakers will relate on some level. I am going to go lose some more water and then go scream at my students about what the real world is like. Wish me luck!
Sunday, May 11, 2008
"Rescue Remedy" is made by "Bach's Flower Remedy" and can be bought at any natural or whole foods store and it works really well. It is a tincture that you either mix in water or put four drops under your tongue. You then breathe deeply and clear your mind with a mantra (word) inhale "oh nah" or "om" or "Let go" whatever you like. Breathe deeply and continue to clear your mind with mantra prayer or song. Lay on your back, prop your head slightly. Place one hand on your belly and one on your heart and just focus on clearing your body of negative energy...Regards,Nadja
Saturday, May 10, 2008
I see it clearly now. I cannot take you with me. I must go this journey alone, wherever it leads, I must follow. I long to take your hand and lead you down this path of discovery with me but I dare not wait. I must go now. So I go and hope that you will find a way to follow me. I think that many of you will, just not at the same speed. It doesn’t usually happen this fast. I see now that it only happens like this when there is a massive catalyst or “message” sent to an individual by the wider universe. I am an existentialist, a rationalist and a realist and yet I find myself caught in a whirl of the senses that transcends this plane. Perhaps it is the insomnia, the steroids or the massive life change but I am on a moving train. I fought it for a while and I had terrible vertigo and anxiety. I learned to control that on Tuesday night by tuning in to my body. What followed was a massive physical “detoxification” and a spiritual rebirth that has not slowed since the moment it began. Last night I looked back for a minute and saw you all standing there. I realized I could keep my eyes open, hold back and stay beside you and you would be there to support me. I thought about staying. The wind outside rushed and I was momentarily afraid to stare the ghost that called to me in the face. And then I drew a deep breath, and I didn’t hurl. I drew another and a voice whispered to me in the dark. It was the voice of the first “Nadja” and Andres’ love and muse (see brief biography). She called to me and I told her I would not come. I told her that now she could rest, she was reborn, she was dead now and in this lifetime she was the strong one, not just his muse. He wasn’t strong enough to keep and protect her anyway. In this lifetime, she would be Nadja Yse and she would be strong and brave for everyone and she would not love the weak Andres. She would choose her own love and she had already chosen him. They had taken vows and she would keep them, no matter where the transcendent journey took her. The old “Nadja” was slow to go. The wind blew violently and Andre called to both of us from the storm. He said he needed us and Nadja Yse said, “NO, I am pledged to another.” Then Nadja Yse made them both a promise, “I will give you all the time you need to tell your story and work out your karma but I will not own it. You may have part one in my memoir and if it takes several months I will give you a chapter, 'Nadja' and 'Andres' but then you will leave me to write part two “Yse” and this part will be all about me and whoever chooses to follow me. Matt is coming along for all four parts of the memoir and the entire life to follow and these specters of the past will at last be left to rest. Good bye “Nadja and Andre,” hello, Nadja Yse Stringer."
Why the departure into surrealism? When I did my google search and my brief study into Nadja and Andre I was in the midst of the most intense, drug-like experience of my life-time. I saw and spoke with ghosts. All the stops in my mind that claim, “This does not exist, this is not real, were gone.” When explaining it to others I equated it to “Trainspotting” after the detox experience of McGregor in that movie. I experienced something much like that after only really sleeping about two hours in twenty four. Some people might call it a religious experience. Others might call it a temporary (thankfully) psychosis induced by insomnia, change, steroids and heightened sensory awareness. Call it what you will for your belief system. I will just call it a life changing experience and write “Nadja’s” chapter for her since she spoke to me twice in my heightened state. Andre, well, he has to sort out his own baggage because I am vowed to another but since he used the first “Nadja” to work out his own surrealist shit I will give him a chapter in a memoir written in his preferred genre and my readers may see it as they will based on their belief system. I will just suspend judgment and write it as it happened. To be continued…
Friday, May 9, 2008
Look me up on myspace.com. You might find a profile but you will see it is set to private. That’s because I’m a teacher.
Google “Nadja Tizer.” There are 209 mentions of my name (OMG). The first site that pops up is this one:
schoolweb.acsd14.k12.co.us/ACHS/Tizer.htm - 9k
The second entry looks like this:
indarticles.com/p/articles/mi_m2248/is_153_39/ai_n6132365 - 38k
I have a degree in psychology and was going to get a PhD in sex therapy but then changed my mind.
If you go on you will find several references to the book I worked on with my psychology professor (yes, I’m published and it was a great honor to be chosen for this).
You will find me “tagged” as “a global learner” by a colleague.
toniajohnson.blogspot.com/2007/10/tag-k12-online.html - 64k
You can find mention of my name in an obituary for the “Stringer family” (my husband's name, soon to be mine legally as well).
You can find my name in relation to El Pomar and the EPYCS club at Adams City High School for 2005 and 2006.
You will find that I worked briefly for Congressman Mark Udall.
www.legistorm.com/member/512/Rep_Mark_Udall.html - 26k
A colleague has linked my teaching blog to hers.
toniajohnson.blogspot.com/2007_10_01_archive.html - 80k
You can find me easily and in person. My school address and classroom number are even listed.
schoolweb.acsd14.k12.co.us/tjjohnso/welcometeamteachers.htm - 7k
I never knew it was so easy to be a stalker before. Wow, I hope I haven’t pissed anyone off lately… Apparently there is no hiding. Heck, I’m sure there is a directory with my home address but with MS one can’t waste too much time on paranoia and I did post one of my Halloween pictures on the blog anyway. You will notice it is teacher appropriate because I’m going global with this thing amd a teacher should not show off their shoulders to high school students.
You can find me listed as a UCD (University of Colorado at Denver) “Outstanding Graduate” for the Bilingual/ESL Masters Program.
You can see some of the work done by my ESL students by going to:
principianteglobal.blogspot.com/2007/12/student-work-posting.html - 73k –
I am so proud of them.
You can find me listed as a UCD Masters recipient.
principianteglobal.blogspot.com/2007/12/student-work-posting.html - 73k –
There is apparently both a “Tizer” and a “Nadja” on some 2001 CD Rom that includes both playboy and penthouse actresses as well as the legit kind. Sorry, intriguing as it sounds, I don’t perform publicly and those ladies are not me.
You will find many other Nadjas. Most of them are Russian or at least European. You will find: “Meaning: Its source is Nadezhda, a Russian name meaning "Hope."
My parents actually named me after a book by Andre Berton called Nadja. Here is the wikipedia link for Andre Berton. My parents are ex-hippies and they are both great intellects. I can’t believe I never researched Berton before tonight.
“Berton is André Breton (February 19, 1896 – September 28, 1966) was a French writer, poet, and surrealist theorist, and is best known as the main founder of surrealism. (see wikipedia).” He published Nadja in 1928. It is some out there stuff from what I can tell. I just purchased a copy from the comfort of my own couch.
According to an Amazon customer review, “Nadja” is simply one more delightful proof of breton's genius and his infallible flair for the surreal, the mysterious, the mystical, and everything that is profoundly divergent. in this tale of intrigue and obsession he travels the streets of paris with a ghostly, clearly insane young woman who calls herself nadja, which is the russian word for hope.” Full review can be found at:
The customer review further notes, “at the end of the novel, nadja is put into an asylum after the police are called because of her incessant screaming and apparently incoherent behavior, some of which suggested that she was living in a world of hallucinations and irrational fears. we do know that nadja was a real woman and not by means some fictitious creation of breton's, and we also know that she came to a somewhat unfortunate end.” This is just getting creepy now. And I always did feel a little bit like a “bad seed”. See my blog from 5/03/08.
The review continues, “it may be true that breton's behavior and attitude of indifference and deliberate ignorance about her truly wretched fate (she died of cancer, insane and completely alone) is indeed nothing to admire, but those who put too much emphasis on this admittedly accurate fact forget that while he may in a sense have betrayed her, he also made a truly admirable effort to make the world see nadja and those like her as no one has seen them before, and immortalized her in a book that is absolutely unforgettable and breathtakingly beautiful.”
The review finishes with the following bold statement, “it is true that he occasionally goes over the top with his optimism, but his iron will and determination to fight 'miserabilism', the philosophical justification of human misery, at all costs can only call forth our admiration. his exaltation of the imagination as the highest of human faculties and the sole organ of man that will allow him to attain felicity seems to be verified by direct, concrete experience of life. as we grow older and we come to realize that sensual pleasure is a big part of life but essentially empty and hollow, our inner lives (hopefully) become more vivid and we end up spending more and more time there. breton knows this and wants us to cultivate it to the highest degree possible. don't be fooled by the 'anti breton' rhetoric and take a dismissive attitude toward him, because you'll be missing out on some of the most fascinating books (to my mind) ever written.”
I’ll let you know once I read it. Now I’m really interested and kicking myself for not getting the book ten years ago. It actually sounds like my cup of tea.
Wow! I had intended to just write a little something but instead I find I am researching a book (more to follow on that).
I think I will have to continue this biography another day but I do have to state a few things first.
I intend my blog to be an honest open account of both my personal dealings with MS and my research regarding the subject. At all times the content will remain truthful and open but at times key, personal details of my life will be omitted for privacy and the sake of my very-public career as an educator.
I promise that when I refer to others in my blog that I will omit all names except mine and my husband’s. I will focus primarily on my own feelings and ideas as I cope with and research life with MS. I will not drag my family or my husband through the mud. I will keep most of my marriage private except where it relates directly to my treatment. I will not share my husband’s private blog and I will not refer to it either in person with him or in my public writing. I will send anything I write about family members to those people first and get their approval before I post anything.
I will cite, quote and link all of my sources. I will write in the semi-casual blog voice and genre but at times will write well-documented articles and research reports from a “Systems Change Perspective.” See Mark Clarke’s "A Place to Stand: Essays for Educators in Troubled Times."
www.press.umich.edu/titleDetailDesc.do?id=8866 - 19k
I am planning to write a memoir, not about life with MS, but about life before MS, and the ways that learning I have MS has shaped me so drastically in the last few weeks. I think the book would be detailed and sensory and would focus on my journey from spiritual teacher’s daughter to yoga instructor and educator. MS would be a thread but not really the story.
I might also need to write an action research book on our modern health care system and various articles as I learn things. I have the Writer's Market Book so I do know where to send things out to as I decide that they are worthwhile. I will actually talk to my mom about finding an agent. I think some of them work pro-bono if they find an author, story or topic compelling. I have always dreamed of writing and I have published before… I guess if I do lose my ability to teach and/or do yoga I will stay home and write and hope I make it as an author. Even if I don’t get published, here is what I believe: I am a true Bohemian at heart. I believe in "Truth, love and beauty" (Moulin Rouge). The "La Vie Boheme" (Rent). Art for arts sake is paramount and if you have the artistic inclination and hit a creative vein you have got to run with it. When I was a child I had unrestrained creativity as a choreographer and I feel that coming back to me now as a singer, yoga instructor, dancer, designer, artist and writer. I think it's because I care less now about perfection and more about the art for art's sake again. I have never had such bad insomnia in my life. To be continued…
Thursday, May 8, 2008
I short while ago I posed five essential questions for study. Today, I am reflecting on #4 and #5 highlighted below. I will keep my reflections very short for now.
4) Can MS relapses be averted or minimized by life-style modifications, holistic approaches, exercise and meditation?
5) What regimen of diet and exercise works best for the majority of MS patients, or is it really about each individual finding what works for them?
My research has not been extensive ( I listed my sources the other day under dietary and life-style resources). I actually have not even made it through the whole list. What I did learn is that there are many people out there with MS who lead a full, active life. Many of them do attribute this to balance, prioritizing, diet and exercise. I found the Hallelujah Acres website and newsletter to be very informative and useful. http://www.hacres.com/diet/explained.asp
I emailed with one of the woman who runs the organization and her prayers, blessings and advice are very appreciated. My husband emailed a lady who wrote a testimonial about how this diet helped change her life. She went from barely seeing and walking to an active life-style.
The common thread I gleaned from this research is that the key is balance. All the holistic approaches suggest balance is the key. There is no one perfect medication, diet or life-style for everyone but there is a lot of hope for each individual who can learn to understand their own disease. Maybe you should be vegan and eat raw foods 80/20. Maybe you need to become a Christian. Maybe the perfect food balance is 85/15 with Barley Max TM at least three times a day. What I know now is that for me, I just need to slow down and really listen to my body. I need to meditate, soul search and let my own health ritual unfold as and how it will. Minimizing my own anxieties and focusing on positives seems to work best for me. I am finding that raw foods and just a little cooked dinner seems to do the trick. I am finishing my steroids, taking “Bach Rescue Remedy” as needed for anxiety and elevated heart rate, taking Chinese Herbs (Yin Chao, for immune system) and Vitamin C . I can tell my body is having a withdrawl from dairy and saturated fats and I have spent at least 4 of my hours since 2 a.m. in the bathroom letting my phlegm clear, urinating and defecating as needed ( I know TMI again but...). I don’t let the time bother me. I just relax, read, massage lotion into my skin, meditate and do yoga. I have now practiced some yoga about four times since 2:00 a.m. I cleaned my house, spent the day online with students chatting and emailing about final projects, organized my ITunes into a yoga playlist, visited a friend, cooked dinner, sent emails, talked to my “other mom” and blogged. Maybe soon I will even sleep again.
I can actually feel my body beginning to fight this disease. It is starting to feel strong, hard and powerful like it did before my husband and I had a car accident on 3/09/08. At that time I suffered a sternum fracture when our car was rear-ended on the highway and slammed into the concrete median. It actually didn’t hurt all that badly (about a 3) but that was the first time in the last two months when I really thought about death. I also thought about how my injury might take its toll on my attendance of yoga teacher training in June. That was actually all I really cared about once I realized I was not dead and that I actually felt ok. I only took Vicodin for a couple of days and then switched rapidly to Ibuprofin. I was back at C1s (An easier, non-heated form of my usual Vinyasa yoga practice) within just under two-weeks and I was already running physical circles around my classmates within a week. What was strange is that although I felt super-ready for yoga teacher training, I had this sense that it was going to be a transformative experience for me and I expected to encounter challenges and deep fundamental changes within myself. I thought of the accident as the first of those challenges.
I think there are a few reasons why I am beginning to feel like my old physical self again. 1) I am completely listening to every inclination of my body. At first I fought them, locked in old habits, but in the last few days, especially since Monday I have started to do exactly what my body tells me to do. If my body says, "Eat a 3:30 a.m. banana," I eat a Banana. If my body says, “lay down and rest for 10 minutes” I do. If I hear, “sing!” I sing. If I here meditate, I deep-breath, pray and/or sing. If by body says, “eat raw food,” I do. If my body says, “Take Yin Chiao for your cold,” then I do just that etc… I have stopped fighting the battle with insomnia now. If it feels good to lay down in bed with my husband, snuggle, sleep or make love then I do. If I need to get up and perform a ritual in my dimly lit bathroom then I do. I deep breath, rub my body in lotions, do yoga and hang out until my body either directs me back to bed or downstairs to watch the VH1, top twenty video countdown and write or work. 2) I am learning what really matters most to me. My priorities are changing and my focuses sharpening. I am spiritually fine-tuning and losing much of the baggage that weighted upon Nadja Yse Tizer. I am separating what is fundamentally best about me from the need to compete or compare myself with others. Despite the massive changes brought to my life by the diagnoses of MS I am finding that the old anxieties that drove me are swiftly fading into a landscape of my past. 3) I have let go that old self, not because that self was bad or inadequate but because that self was limited by all the rules of educated, white, upper-middle class society. 4) I have vision, purpose and time. I still have a month to get in shape for yoga teacher training. My health and my marriage to Matt are my ultimate priorities over the next four-months. I am also driven with raw, creative energy for writing and research that has never felt as pure and rich. I have always been most charmed by the idea that if you are going to do anything, no matter what, you should try to do your best. The problem is that in the past that gave me anxiety because I always had deadlines, and to meet them, I didn’t skimp on the work, I just sacrificed in another area of my life. I would skip yoga in order to correct a stack of papers for students. I would work on the weekend during time I could be spending with my husband. I would work through lunch every day and allow kids to hang out in my classroom during my “duty free” lunch. I had the discipline but lacked the balance. I committed myself to getting a good , long sleep every night and if I woke up, I would spend hours trying to fight my way back to sleep instead of just getting up and letting it happen naturally as it would. The good news is that now I have nothing but time on my side. I have assured pay and insurance at least until August and most likely beyond since I want to stay at my job so I can focus on my new priorities. I can learn to balance my life so that when, and if, I go back to work I will really be ready to maintain a life-style more in tune with my needs and priorities. I plan to really cut back on my activities when I do officially return to work. I have decided to only be on one committee (the instructional leadership team), to stop tutoring and resign from my school’s Positive Behavior Support Team even though I love it. I hope to actually start a yoga club at my school and to see if I can teach one or two other yoga classes a week. 5) I am not over-committing myself to anyone and anything but I am formally committing myself to Matt and changing my last name to Stringer. I am only committing to the things I plan to prioritize. For the summer those things include, my health plan, my yoga teacher training, yoga in the park for kids with my niece and working on my MS management, blog and life-style adjustment. Damn, it took an hour but it felt great to put all this into writing. It has really brought deep clarity to my meditations of this week.
I know that as my primary support and care-giver that Matt has some massive concerns but I am feeling positive about just truly being present in every situation and adjusting our life as needed. A time may come where I am home-bound. There will be times like now where I don’t feel like I am confident enough in my visions and senses to drive. I may have to give up teaching public school. I may need to shift or broaden careers. There may be times where we fear we will lose our quality of life but I believe that we can find ways to simplify and not give up much. I have about five or ten different ideas of things I can do and ways I can earn money even if my current profession proves too much. Having stared death right in the eyes and found that he hunts me, I am no longer afraid of this spectre. As long as I draw breathe, as long as I have this beautiful mind to work and shape I will fight for my life. There will be hard times but as long as I do not lose my faculties and I can dictate my thoughts to a computer if I can’t type, I want to live, love and laugh. This is my commitment to myself. If the planet ceases to hold the resources we need for basic survival and we must select the fittest to survive, I will only make myself a candidate if I am fit but if I can save another, fitter life by sacrificing my own, I will do so in a heartbeat.
BTW- As a newly-born, late-night non-sleeper I have become an expert on the top twenty songs. I have really cheesy taste sometimes (I admit it) but I have had Madonna and Justin Timberlake’s single from “Hard Candy” stuck in my head. It’s not great but it’s catchy and there is a portion of the message that has been driving me (I quoted it the other day) but below I copied some of the lyrics that I found compelling from the “Hard Candy” website (also linked at the bottom of this entry) so that others can check it out and tell me what they think of the lyrics I pasted and their relevance on our world right now. The info from the website that I chose to quote begins below in bold.
This is the first single from the album Hard Candy. It's sung as a duet with Justin Timberlake, combined with Timbaland's signature heavy hip hop beats and his usual shout-outs. Lyrically the song is a sexual but playful teasing between Madonna & Justin. The single premiered on radio on March 17th, was released digitally on March 25th and is available as a physical single from April 21st (29th in the US).
Lyrics (not complete just the ones I liked)
(Timbaland:)I'm outta time and all I got is 4 minutes
(Madonna & Justin:)Time is waiting
We only got 4 minutes to save the world
Grab a boy
Grab a girl
Time is waiting
We only got 4 minutes to save the world
We only got 4 minutes, 4 minutes
(Madonna:)The road to hell is paved with good intentions, yeah
(Justin:)But if I die tonight
At least I can say I did what I wanted to do
Tell me, how bout you?
Wednesday, May 7, 2008
Well a reprieve from the angst was certainly in order and it came at about 10:00 a.m. I was finally sleeping. I came up from the whirl of a strange, disoriented dream where I touched my nose and found that under my finger the skin began to peel away… As I rubbed more, my nose slowly fell off. I awoke with a jolt to the phone ringing. I was slow to crawl up from the darkness and to remember that I had a nose and I had MS, not leprosy. It took another moment for me to realize the call was coming from my grandmother and that she was calling back after over twenty-four hours of phone-related issues. Oh my God, is Mercury in retrograde?
I came back to reality slowly but once I did, I was rested and on the mend. I stuck to a mostly raw foods diet and it does seem to do the trick, especially if I keep the liquids and foods coming and do things in short spurts followed by rest, meditation and “Rescue Remedy.” I prayed sang and meditated as I prepared for my yearly job evaluation at 3:00 p.m. By the time Matt picked me up I was calm and centered, ready to show the world the new me.
Things at work couldn’t have gone better. I got to see the kids I talked about life, respect, responsibility, achievement. I told them about their final exam. I am having them write an essay answering the question, “What do you feel is the biggest problem facing teens today and why?” I told them that I think the problem is “apathy.” I told them that I am a teacher because I want to shape them toward a future of achievement. I want them to graduate, go to college, get citizenship and be great. I explained that the world is facing a crisis and it is their job to solve problems like environmental destruction, poverty and war.
I got to visit a few of friends at work and I hope to see them all at graduation on Saturday! I got some lovely candles for our altar to the god and goddess from my mentor (so awesome). I also got a goody bag of fun gifts from another close friend. In addition she gave me a yearbook that was signed by all of my students and most of the staff. Two of my little “naughties” even wrote apologies to me for their “mal comportemiento y palabras” (bad behavior and bad language). Go figure. Kids, I swear…
My evaluation went very smoothly and I am optimistic I will be rehired for next year (update to follow).
On Monday night/early Tuesday I let myself go further into my fear than almost ever before… What started as an experiment fared very poorly on that darkest night of my soul.
It all started as an experiment. I had been battling terrible insomnia and I finally caved and asked my doctor for a sleep aide. I took the pill with visions dancing in my head of a long, much-needed, blissful sleep. When it started to kick in, I began to have my doubts. My vision blurred and suddenly my world was sweeping sidewise again.
When I got into bed with Matt, I was filled with dread. My bed just felt wrong. Images of myself hurling vomit into a plastic salad bowl on the right side of my bed haunted me. I gripped Matt’s hand tightly and tried to breathe but I was drowning with fear. I cried and talked, trying to release my anxiety. Matt listened and spoke soothingly. He suggested dropping a leg to the floor for the “drunk’s balance.” I tried but still I was full of fear and vertigo. I couldn’t decide if it was real or imagined, so fierce was my anxiety. I found myself fighting the drowsy downward pull of the sleep aide. Every time I closed my eyes I seemed to sink into the whirling, dark mass of my bed. Eventually the pill took me but only for about four hours of haunted, nauseated sleep.
I awoke at about 4:00 a.m., anxious and ill. I waited until Matt woke up and then begged to be held but I could not get away from my fears and illness. I finally asked for a cold compress and a vomit bucket.
I didn’t puke. Thank goodness for that since I am also still haunted by retching up blood a few weeks ago. Matt brought me food in bed and I eventually ate and got my meds down. I psyched myself into bathing. It helped a little and I finally made it away from the fear of my dreaded bed.
Unfortunately, I spent my entire day glued to the couch fighting headaches and nausea. Matt’s family had a crisis and I felt terrible that I couldn’t be there for them and him but all I could do was try to fight the anxiety and illness. By the end of the day I was a wreck. I cried for at least a quarter of the time Matt was gone. By 4:00 I was really freaking out and then my friend came by. Slowly the last effects of the sleep aide wore off along with my nausea. Matt brought groceries and made dinner. He also brought me a holistic remedy for anxiety called Bach’s Rescue Remedy. It really did the trick.
When I put the tincture under my tongue the anxiety immediately released. Eventually I could put my head down and lay flat on my stomach. Matt rubbed my back and I relaxed. Then, he took me to bed at 8:30 p,m. and changed the comforter and pillow to help alleviate my negative associations with our bed recently. I feel into a deep, peaceful slumber for about 3 hours. I awoke without anxiety, spent some time with Matt, rested and finally got up at 2:00 a.m.
Now I feel free from anxiety and almost ready to go to sleep a little again. Better yet, the sun will shine tomorrow. I realized again tonight that my life is truly mine to shape as I will. There will be dark, dark notes but there will also be splendid sunrises.
Over the counter
Pain and inflamation
Works well for skull pain, aches etc..
2) Bach Rescue Remedy
Nice effect on skin, hair and joints
Helps joints, colds, provides energy
Finish this pack and take a break from hormones but ok overall
6) Docusate Sodium
Over the counter
Does the trick
Controlled sleep aide
Controlled sleep aide
First attempt to take caused nausea but this needs further review
Also known as valium
Vertigo and anxiety
Mostly very positive but only good when I really need it.
9) Transderm Scopalomine
Pharmaceutical transdermal patch
Good for vertigo and nausea
Don’t currently need it but it did the trick
Good for pain
Used for fractured sternum and sound it provides sleep relief but only if there is pain. Otherwise, causes some nausea
For acid reflux or stomach acidity
Effective but no longer needed
Seems to be really helping and it is also a good exfoliant. It does cause insomnia.
Over the counter
Helps prevent or lower nausea and vertigo
Tuesday, May 6, 2008
http://www.hacres.com/diet/explained.asp http://www.swankmsdiet.com/ http://paleodiet.com/ms/ http://www.direct-ms.org/bestbet.html http://www.iht.com/articles/2008/03/11/healthscience/13snbrody.php http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=398
Monday, May 5, 2008
Anyway, despite the challenges, I am healing a little every day. Now I would love to start corresponding with a bunch of other MS patients and their families in the coming weeks. I am a very science-minded researcher when I set myself to a task and now that I have done some of the philosophical processing, I'm ready to start researching my disease.
In education, when we tackle a topic, we start with an "essential question," and then the explorations our students complete and the assignments they do focus around those essential questions (at least when we do our work well). I am now about to embark upon answering my own new "essential questions."
Here they are: 1) What causes MS (scientifically), is there quantifiable, valid data even available?2) Can MS be cured?3) Do "interferons"and other meds help, which seem to have the best results, is there a good body of data supporting one medication or another?4) Can MS relapses be averted or minimized by life-style modifications, holistic approaches, exercise and meditation?5) What regimen of diet and exercise works best for the majority of MS patients, or is it really about each individual finding what works for them?My vision is to use my blog and email to create a world-wide network of MS patients and their families freely sharing information and collecting data. I would love to know how others are managing their disease and would love to be put in touch with as many MS sufferers as possible. Please feel free to share my blog with anyone you think may benefit or respond.
Sunday, May 4, 2008
Journal 5/04/08 –The last 24 hours (give or take) I have turned myself into one giant science experiment. I cast my senses outward into each realm of my body and mind, my consciousness like an enormous net… I awaken slowly, warily, searching for nausea, numbness or pain. I pry my eyes open, testing for the vertigo that threatens to whirl me into a sea of chaotic lights and piercing virtual overload. I roll to my other side, sense my dry mouth and narrow my vision as I test my tongue along the searing roof of my mouth. I wearily peel back an eyelid and pray that I will not see two visions of a curtain rod that is actually single. I ease my feet slowly onto the floor, one after the other. I freeze. I self-talk myself toward action. I breathe in slowly through my nose and out my mouth. “Oon,” I inhale. “Nah,” I exhale. I do this ten times gently, willing myself to calm. “You can do this,” I tell myself.
I have turned myself into one giant science experiment. I cast my senses outward into each realm of my body and mind, my consciousness like an enormous net… I awaken slowly, warily, searching for nausea, numbness or pain. I pry my eyes open, testing for the vertigo that threatens to whirl me into a sea of chaotic lights and piercing virtual overload. I roll to my other side, sense my dry mouth and narrow my vision as I test my tongue along the searing roof of my mouth. I wearily peel back an eyelid and pray that I will not see two visions of a curtain rod that is actually single. I ease my feet slowly onto the floor, one after the other. I freeze. I self-talk myself toward action. I breathe in slowly through my nose and out my mouth. “Oon,” I inhale. “Nah,” I exhale. I do this ten times gently, willing myself to calm. “You can do this,” I tell myself.
I stagger to the bathroom but fortunately my vision remains clear. There is no nausea this time. I am deeply relieved. My eyes seem to be working in conjunction, not darting the way they often do. There is no double vision and there is no dull pain in my head, just an ache behind the eyes. I spend half an hour on the toilet looking at emaciated super models in “Vogue” and imagining clothes I would like to design while my body does, or does not, do as I will it to.
I decide to change the routine. Instead of going back to bed I head downstairs. It is 4:00 a.m. and late night T.V. pretty much just sucks. I prop myself into a comfortable seat, curl up under a blanket and snuggle with the cat. We try watching some stupid dating game on MTV but I get fed up and the cat moves to a new sleeping position. I switch over to VH1 to watch the top 20 videos countdown. Did you know that Madonna and Justin say, “We only got four minutes to save the world?”
I work then. It’s mostly cut and paste, something to kill the time but a small attempt at perfection that gives my uncertainty a focus. I work and wait, testing my body for both flexibility and pliability. An hour or two later I complete a job well done and send out an email to my colleagues that should guide my students through the year. It is a relief, a relinquishment. I feel I can step back now and see if the kids themselves choose to soar. I think of emailing them to tell them what I have learned about life from my recent experiences. I don’t send it. Instead I send them a six-page final study guide, assign a presentation, essay, and two exams. I send an explanation of the work to my colleagues. I push my fledglings from the nest and dream that perhaps they will soar. I know I have done my best and I am satisfied.
I find myself watching the top twenty videos again. It is around 6:00 or 6:30. I think I am ok. It is time for my award. I eat a fruit cocktail and put on the headphones for my IPod, setting the tunes to “shuffle.” I curl up on my side with the cat, closing my eyes against the rising sun and swaying my body to the beat of the music. I feel happy to be alive, my head and eyes free of pain…
Later I turn off the tunes and climb back into bed while Matt is in the bathroom. I curl up and wait for him to come and lay beside me. We hold each other. I rub his back, and he rubs mine. I calm and begin to feel sleep pulling me back towards its’ oceanic lull. Matt leaves me feeling the best I have felt in weeks. The tensions in my shoulders, back and arms has receded, each joint has popped and I am fully relaxed. I sleep.
I awake an hour and a half later. The experiment begins again. Today starts out ok…
Saturday, May 3, 2008
Journal 5/03/08 Lessons, blessings and prayers
Yesterday was a great day for me. Matt and I got to spend an hour just marveling and loving all over each other. I also felt better all day long. I even went out to eat with friends. I felt excellent when I went to bed.
The middle of the night was the hard part. I managed to sleep until about 3:30 and then I awoke and felt burning hot. I started to feel like I needed to puke but fought the urge. I finally got up and used the restroom but I was so depleted by the effort that I just had to fall back into bed. I awoke Matt at 4:30, feeling desperate. He took my temperature and put a cold compress on my forehead. He held my hand and comforted me until I felt ok again and the nausea past.
Matt also literally saved my butt this morning. I had a sudden attack of blurred vision and vertigo and so I awoke him again. Despite his exhaustion, he got right up and went downstairs to find me a quick snack. He then made me fresh, hot pancakes as well. By the time I ate the food he provided, I was feeling much better. Now I am drained but very optimistic about my prognosis for the day. My vision has cleared and my vertigo is quickly receding again. The sun is shining too! Matt’s going to get me a chaise right now and my friend Leah is going to the farmer’s market to procure us some organic produce. Things are really looking up.
Last night, while I lay awake fearing my reaction to the vertigo, I had ample time for more thought. I cried a little about the pain in my head and about how hard it can be to move from Ms. “overachiever” to half-handicapped at times but mostly I thought about my dreams, blessings and prayers.
Now, I am not a religious person but I do aspire to become a spiritually elevated individual. I find that having MS has really deepened my spiritual resolves. I am more resolved than ever in my determination to meditate well and mindfully. I am more resolved not to let the little things bug me. When I remember to close my eyes and breathe slowly and deeply, I am learning to calm my anxieties. I can’t believe I am saying this but I find I am even more patient with others and I’m usually an agitated, mega-bitch critic.
I am most blessed to have found some new, meaningful connections. I am even more blessed by some of the deeper ways I am reconnecting with members of my family and even with people I have often despised. The faults in others bother me less now. I am also learning that my own faults may seem more glaring to me than they do to others. People keep praising my positive attitude and my strength. I find this surprising because I have felt a lot of fear, immaturity and weakness in myself throughout my life and operate under the general, paranoid assumption that I must drive people nuts. I have also always felt like the family basket case. I have often thought that everyone is just waiting for me to drop the ball and come unglued. I guess maybe I was wrong.
I feel new peace with my parents now too. For many years I was nearly estranged from my dad and we only reconnected in the last year. I know that some of my family is still upset with him but I am just finding that I can accept him for who he is (bizarre, or not). I feel so grateful that he actually came to my house to see me twice in two weeks (he’s never visited me before). He came two days after I was diagnosed to see me and I could tell he already was thinking about ways to help me and Matt. When he left, I cried because I felt like he really accepts me for what and who I am now. I don’t think he sees me as flawed at all.
My mom came and visited a few months ago as well (before I was diagnosed). Matt has been telling me for years that I should get over the issues I have with my mom. Well, even before I knew about the MS, I finally did. I really believed that my mother thought I was a bad seed, an explosion of unrestrained emotion and imbalance. I remember her yelling a lot when I was a kid. I remember her doing all the disciplining and managing of my life. I thought she would never stick up for me in front of my dad. I thought she hated my bad skin, unruly hair and temper tantrums. I have always felt so judged and criticized by her. Now, I wonder, was this all in my own head?
When my mother visited she had nothing but nice, encouraging and complimentary things to say about me and Matt. She had planned a special trip to
The kindness of friends, family and even people who hardly know us almost overwhelming. I wake up every day and immediately remember that I have MS. Sometimes I cry a little and cuddle a “fairy bear” from my mother in law and then I feel better and I can just get back to living and healing. I never thought I would write about prayers and blessings of all things but here I am. Wow!
My prayer is not to one entity. My prayer is very personal. I am praying that my own strength and healing will help heal the other people in my life who need it.
Friday, May 2, 2008
4/29/08- Journal # 3
Matt told me, “You are not dead.” Right on, I’m not. In fact, I am so overwhelmed with joy at this moment I can’t stop singing. Why? You might ask… Because it is spring, I don’t have to work, I can laugh as much as I want, I can forget perfectionism and all the rules of professionalism and just “be.” I mean, just really “be.”
Yogis are always saying, be present, be mindful and experience the moment even if it is one that involves suffering. Amen! If I survived an NG tube up my nose and down my throat then life might just be a giant piece of cake (minus the saturated fat).
So I’m not dead but now I don’t have to spend time joining every work project I encounter. I don’t have to read a whole bunch of shitty grammar, bad spelling and linguistic rape of my favorite words. In fact, maybe I’ll even write some poetry that’s actually good.
If I don’t get to teach Vinyasa yoga than perhaps I can buy some “blosters” and prop old folks into their restorative yoga poses while discussing transcendental reality.
Journal # 2 4/27/08
Attitude adjustment imperative! Ok, so yesterday I wrote a bunch of sort of exploratory thoughts as I adjust to the changes in my life. I guess some of it probably never should have even been published but I did find the process helpful and cathartic. I now wish to apologize to everyone who might have received my initial journal as I never meant that it should cause anyone, especially my husband any undue pain.
If you did get the entry it was because I felt that a great degree of honesty with my friends was essential to helping me process things. Sometimes it is better to be really honest with ourselves and get all our pain, fears and frustrations out. I know I talk a lot but sometimes I put too much optimism and denial out there just so I can help others feel better. It is more in my nature to avoid conflict, pressure and pain for others and to put myself last. I guess last night I just had to give myself a short pity party so I can start moving onto the new me.
Matt was particularly devastated by the entry because it made him worried that I was depressed or that I would do something stupid to myself or that I would give up. To set the record straight, as long as my intellect is in place, even if my typing is total shit I will continue to be strong, fight hard and learn more about what I really want from this life.
Surprisingly, I AM ACTUALLY FINDING THAT I HAVE MORE NEW GOALS AND DREAMS THAN EVER BEFORE. I am not certain how long this relapse will last or what I will do next but I am tossing around tons of ideas already. Maybe, ultimately, this will improve my future beyond my wildest dreams.
Journal # 1 4/26/07
I often find myself exploring the existentialist dilemma; “Why am I here, what is my purpose” and “If this life has any promise for us beyond our inevitable death?”
In spite of this general philosophical grounding that I mainly adhere to I find at times that despite these firm guiding questions and philosophy, that it is times of crisis I find prayers and spirituals spilling from lips that scarcely even fit my true philosophical underpinnings.
This seems especially true during the last 2 or 3 weeks of my life. I have been suffering from vomiting, fatigue and vertigo for an abnormally long time. On Thursday, April 24th, I was admitted to the ER because I was vomiting blood clots and experiencing retching, disorientation and double vision. Fortunately the bleeding stopped after I vomited up all the blood clots in my system. My throat scope came back and I had a Mallory Weiss tear in my esophagus from all my violent puking but they said I could go once I kept food down. When the doctor learned that I was having double-vision he became concerned that I might have MS (Multiple Sclerosis).
That night I had an MRI. Unfortunately we got the results by 2:00 pm the next afternoon and the doctor told us I had a lesion in my cerebellum consistent with MS. So we went in for blood work and meds.
The next day we saw the neurologist and had a second discussion and looked at my MRI. There was only one lesion so he ordered another MRI for yesterday. I won’t get the results for that next test until at least Monday and hopefully once they know more I can get a treatment and a diet plan in place that will help me get my life back to where I want it. I just want to try to be strong and positive as my life changes.
So now, despite my life-view I find myself asking, “why me?” I never thought this would happen to me. So I am mourning some of the life I had but I’m trying to start thinking about how to handle the changes in who I was and I am asking myself,” How will I move forward? What’s most important to me and how can I go on as an educator and continuing contribute to society once I feel better? When I can see and think more clearly I will continue this journal and post a blog.
Until then, here is some honest insight into how this feels for me right now. However I am, whatever my purpose I’ll write my catharsis out and share it to help lift some of my pain and tears and to navigate my why towards the new person I am swiftly becoming.
It may be strange but during the last nine days I have found the deepest peace I have ever known. Suddenly, I just need to live one day at a time. I don't have to make big committments. I don't have to say yes to everyone all the time. I can stop and literally "smell the roses."
Some might claim I'm cursed, that my life is over. I will claim that I have been blessed. I have sudden clarity that little matters except love, peace and a meaningful purpose for existence. I want to help other MS sufferers and their families find the strength and joy in life that I am finding. MS does not have to end your life, it can jump start it!