An exceptionally well timed letter

I received this in the mail today from a former camper, staff member and the daughter of a friend of mine.  I've known her since she was 10 years old.  We met at camp, but then I became good friends of her family and so I have known her in and out of camp.

As a camper, she was "Suzy Camper."  She was all about camp.  As a staff member, she was kind, compassionate, and then had one major foul up, in which I had to fire her.  She knew it was inevitable and the whole thing sucked, but she bounced back and has since gone to work there successfully.  She's had a rough time of things as she has entered into adulthood, but she had a good head on her shoulders, and I am eager to see what becomes of her.

Anyway, I got this letter from her today.  She's in job corps, which is kind of part job training, but also for kids who've had some trouble in their lives.  It's a little boot camp-ish, but very good for her.

"Dear Heidi,

My teacher gave us an assignment to write a letter to someone in our lives that we see as a leader.  I thought of you immediately because you were the person who taught me leadership in and out of camp.

In my opinion, you were the best director I saw in my time at camp.  You set the rules, made sure everyone was doing what they were suppose to do and ensured every one's safety, but still managed to be someone we could come to, if we had a problem, someone who could always make me laugh.  From the very first memory I have of you, when you took me to Friendly's for my birthday, I have known that there is someone that cares for me outside of my family.

Whenever I fought with my mom, or needed something she couldn't provide, be it a ride to dance or someone to talk to, you have been there for me.  Mom and I frequently wonder where we would be without you.  You have been so many things in my life, camp director, babysitter, mentor and friend.

Most of all, you are are someone I can look up to, someone who inspires me.  You are one of the best, most wonderful people I have ever met, and seeing you struggling with MS is hard for everyone, but you accept the cards that you were dealt, and you haven't lost your smile.  You are someone I admire more than anyone else, and I am so grateful for everything you have done for me.  I would not be where I am without your support and love.

Love you,"

*Name omitted to protect her identity *

Some days, I love my job, love the staff, love the kids...

Today was one of those days.  EVERYTHING just seemed to go right.  It was quite nice, I have to admit.  Things just seemed to go well.

My middle schoolers did play a prank on me.  They told me that their counselor, who is also my bff, her water broke (she's obviously pregnant and due in 3 weeks).  This was plausible and made me rather excited.  The thought of her giving birth in my program, was not appealing, but the excitement of a new baby, is wonderful.

As soon as I got to their school, the kids all yelled, "Happy Pranksgiving"  Her water did not break and there was no labor.  I was sad, but rather amused they could get me so easily.

The staff meeting tonight, was also wonderful.  I feel that things are going well and we have a great rapport with each other.  I saw a lot of value in each and every one of them.  I'm happy.

Baby Shower

I've been baking, wrapping, planning all day long for my best friend's surprise baby shower tomorrow!  I can't wait....its going to be ridiculously fun.

pumpkin picking field trip!

What a day - it was long, but wonderful.

And what full day program is not complete without a 5 year old running out of the locker room into the hallway stark naked because she forgot her bathing suit in the gym.

Best part of today - hearing a parent who usually complains about EVERYTHING that she loved the staff at her son's site and how well her son was doing in school because of the staff.  Excellent.

Thoughts for the night

If you want to feel rich, count all the great things you have that money can't buy

friends - really great friends, the kind that I know I can call on when I really need something.  The kind that can pull me up when I need it, and that I know will call on me when they need it.  The ones from long ago, the current ones, and the ones that I know are forever.

family - even if they can make me crazy, they are there.  In all sorts of weather, and they love me, unconditionally

knowledge - not just the book kind that came out of school, but the real life experience I have had.  The lessons I have learned, even if they came about the hard way, make me who I am.

children - there's been amazing children I've met in my life.  They've left a footprint on my soul and I really appreciate what they've done for me.

camp - as a child, this place defined me.  All I wanted to be when I grew up was my counselors.  This place molded me, and taught me about life.

love - it's cheesy, but those I've loved are worth it.  'Tis better to have loved and lost, then to never have loved at all - or something like that.

inspiration - those thoughts, ideas, things that keep me going.  It's those things I can turn to when I'm having a tough time.

health - eh, I can't count that anymore

Woohoo!

I found my missing envelope of money!  Well, technically my assistant found it.  But either way, I didn't have to sell myself on the street corner to replace the $400.

Phew.

Little nothing book

I found my little nothing book tonight.  There were a few things I had to add to it, and I'm pretty impressed with how long it is.

Every good camp director has a little nothing book.  It's filled with inspirational stories, quotes, pictures and general good mood things.  

I started this in 1995.  It's come a long way since then.  There's a lot of stories about Girl Scouts, camp, love, life. 

 I guess it's time to add Multiple Sclerosis to that list.  I'm quite sure there's good quotes I can add.  In the meantime, my favorite story (it's long, but well worth it).

Three Letters From Teddy

By Elizabeth Silance Baynard

Teddy's letter came today, and now that I've read it, I will place it in my cedar chest with the other things that are important to my life. "I wanted you to be the first to know." I smiled as I read the words he had written and my heart swelled with a pride that I had no right to feel. I have not seen Teddy Stallard since he was a student in my fifth grade class, 15 years ago. It was early in my career, and I had only been teaching for two years.  From the first day he stepped into my classroom, I disliked Teddy. Teachers (although everyone knows differently) are not supposed to have favorites in a class, but most especially are they not to show dislike for a child, any child. Nevertheless, every year there are one or two children that one cannot help but become attached to, for teachers are human, and it is human nature to like bright, pretty, intelligent people, whether they are 10 years old or 25. And sometimes, not too often fortunately, there will be one or two students to whom the teacher just can't seem to relate. I had thought myself quite capable of handling my personal feelings along that line until Teddy walked into my life. There wasn't a child I particularly liked that year, but Teddy was most assuredly one I disliked. He was dirty. Not just occasionally, but all the time. His hair hung over his ears, and he actually had to hold it out of his eyes as he wrote his papers in class. (And this was before it was fashionable to do so!). Too, he had a peculiar odor about him which I could never identify. His physical faults were many, and his intellect left a lot to be desired, also. By the end of the first week, I knew he was hopelessly behind the others. Not only was he behind; he was just plain slow! I began to withdraw from him immediately. Any teacher will tell you that it's more of a pleasure to teach a bright child. It is definitely more rewarding for one's ego. But any teacher worth her credentials can channel work to the bright child, keeping him challenged and learning, while she puts her major effort on the slower ones. Any teacher can do this. Most teachers do it, but I didn't, not that year. In fact, I concentrated on my best students and let the others follow along as best they could. Ashamed as I am to admit it, I took perverse pleasure in using my red pen, and each time I came to Teddy's papers, the cross marks (and there were many) were always a little redder than necessary. "Poor work!" I would write with a flourish. While I did not actually ridicule the boy, my attitude was obviously quite apparent to the class; for he quickly became the class "goat," the outcast - the unlovable and the unloved. He knew I didn't like him, but he didn't know why. Nor did I know - then or now - why I felt such an intense dislike for him. All I know is that he was a little boy no one cared about, and I made no effort on his behalf. The days rolled by. We made it through the Fall Festival and the Thanksgiving holidays, and I continued marking happily with my red pen. As the Christmas holidays approached, I knew that Teddy would never catch up in time to be promoted to the sixth grade level. He would be a repeater. To justify myself, I went to his cumulative folder and from time to time looked it over. He had very low grades for the first four years, but not grade failure. How he had made it, I did not know. I closed my mind to the personal remarks. First Grade: Teddy shows promise by work and attitude, but has a poor home situation. Second Grade: Teddy could do better. Mother terminally ill. He receives little help at home. Third Grade: Teddy is a pleasant boy. Helpful, but too serious. Slow learner. Mother passed away end of the year. Fourth Grade: Very slow, but well behaved. Father shows little or no interest. Well, they passed him four times. But he will certainly repeat fifth grade! Do him good! I said to myself. And then the last day before the Christmas holidays arrived. Our little tree on the reading table sported paper and popcorn chains. Many gifts were heaped underneath waiting for the big moment.  Teachers always get several gifts at Christmas, but mine that year seemed bigger and more elaborate than ever. There was not a student who had not brought me one. Each unwrapping brought squeals of delight, and the proud giver would receive effusive thank-yous. Teddy's gift wasn't the last one I picked up, in fact it was the middle of the pile. Its wrapping was a brown paper bag, and he had colored Christmas trees and red bells all over it. It was stuck together with masking tape. "For Miss Thompson - From Teddy" it read.  The group was completely silent and for the first time I felt conspicuous, embarrassed because they all stood watching me unwrap that gift. As I removed the last bit of masking tape, two items fell to my desk: a gaudy rhinestone bracelet with several stones missing and a small bottle of dime store cologne - half empty. I could hear the snickers and whispers, and I wasn't sure I could look at Teddy. "Isn't it lovely?" I said, placing the bracelet on my wrist. "Teddy, would you help me fasten it?" He smiled shyly as he fixed the clasp, and I held my wrist for all of them to admire. There were a few hesitant oohs and ahhs, but as I dabbed the cologne behind my ears, all the little girls lined up for a dab behind their ears. I continued to open the gifts until I reached the bottom of the pile. We ate our refreshments and then the bell rang. The children filed out with shouts of "See you next year," and "Merry Christmas!" But Teddy waited at his desk. When they had all left, he walked toward me, clutching his gift and books to his chest. "You smell just like Mom," he said softly. "Her bracelet looks real pretty on you too. I'm glad you liked it."  He left quickly. I locked the door, sat down at my desk and wept, resolving to make up to Teddy what I had deliberately deprived him of - a teacher who cared. I stayed every afternoon with Teddy from the end of the Christmas holiday until the last day of school. Sometimes we worked together. Sometimes he worked alone while I drew up lesson plans or graded papers. Slowly but surely he caught up with the rest of the class. Gradually there was a definite upward curve in his grades. He did not have to repeat the fifth grade. In fact, his final averages were among the highest in the class, and although I knew he would be moving out of state when school was out, I was not worried for him. Teddy had reached a level that would stand him in good stead the following year no matter where he went. He had enjoyed a good measure of success and as we were taught in our teacher training course, SUCCESS BUILDS SUCCESS. I did not hear from Teddy until seven years later when his first letter appeared in my mailbox. Dear Miss Thompson, I just wanted you to be the first to know. I will be graduating second in my class next month. Very truly yours, Teddy Stallard I sent him a card of congratulations and a small package, a pen and pencil gift set. I wondered what he would do after graduation. Four years later, Teddy's second letter came. Dear Miss Thompson, I wanted you to be the first to know. I was just informed I'll be graduating first in my class. The University has not been easy, but I liked it. Very truly yours, Teddy Stallard I sent him a good pair of sterling silver monogrammed cuff links and a card -- "so proud of you, I could burst." And now, today - Teddy's last letter. Dear Miss Thompson, I wanted you to be the first to know. As of today, I am Theodore J. Stallard, M.D. How about that!!!??? I'm going to be married in July, the 22nd to be exact. I wanted to ask you if you would come and sit where Mom would sit if she were here. I will have no family there as Dad died last year. Very Truly yours, Teddy Stallard I am not sure what kind of card one sends to a doctor on completion of medical school and professional boards. Maybe I'll just wait and take a wedding gift, but my congratulations can't wait. Dear Ted, Congratulations! You made it and you did it yourself! In spite of those like me and because of us, the day has finally come for you. God bless you. I'll be at that wedding with bells on! Miss Thompson

My therapist

I feel like I’m really meshing with my therapist.  Much better than I did with the previous one.   I don’t dread going to see her.  I think I’d rather not see her, cause needing to see her makes me feel like I’m crazy and somehow, not effective.  The truth though is that I’m not capable of dealing with everything, and seeing her is pretty helpful.

She’s young, younger than me I’m sure.  Once she said something about “being 30,” but I think it was the way one rounds up.  I’m guessing she’s 26 or 27.  I’m 34.  I’ve heard from others that I should be seeing someone with more experience, who has worked with patients with MS before, yadda yadda yadda.  At the end of the day, I like her demeanor, her logic, her people skills.  Someone who has been doing this 40 years might know a bit more about it, but I like her.  I don’t dread going there.  That’s what is most important to me.

I Google things all the time, especially about therapy.  I keep trying to find ways to bring up conversations.  When I was ridiculously stressed out that I didn’t have a suicide plan….and just a way to die, I googled an awful lot about that.  I needed to know that if I shared this with her, she wasn’t going to have me committed to some psych program or call an ambulance or something.  I never really found a concrete answer, but I told her everything that was going on anyway.  Nothing bad happened…it’s just something we talked about.

We did have a difference of opinion, and now that’s I’m feeling more stable, I can see that of course we do.  I was more worried about how I would die.  I wanted to know so that if the time arrived, I’d have a plan in place.  I didn’t necessarily have a time, but I needed to know a plan.  The biggest concern for me was HOW.  For her, it was WHY needing that how was so important.  I’m not sure what I was hoping to get out of it, I mean I knew, even if my chaotic state, that she wasn’t going to give me pointers. 

Anyway, I feel that that was perhaps to hardest conversation to have with her.  Probably not the most awkward – that will be the sex conversation – if and when we ever have it.  But it was the hardest, and it happened. 

When I first started seeing her, it was every two weeks.  Since that whole freak out week, it’s been weekly.  I kind of like it, in that I know I am going to see her if something comes up.  I don’t have to stress and I don’t have to make that dreaded phone call of asking for an appointment during an off week.  Perhaps we will soon go back to every two weeks.

 

questions that don't have answers

"I just try to remember GOD picked us strong people because an ordinary person couldn't manage and deal with this disease!!"

Someone posted this on a MS message board.  It was in a category labeled "guilt" and is totally meant to be inspirational and uplifting. 

That's not how I take it, at least today.  I'm mad that I have MS and constantly asking, "why me?"  Which, I know is a useless question.

I feel so hopeless about the future.  I talked to Kay, the MS nurse today.  She is so freaken positive, it's unbelievable.  I just want 1/10th of what she has. She has this incredible spirit and attitude and is just wonderful.  She says to give it a year.  Give it a year to settle and then things will get better.

I wonder if she's right.  I can't see how it can get better.  I feel like I'm a miserable failure at everything I try.  The thing is, I can tell myself to wait a full year.  Evaluate and see how I feel.  But then what?  What do I do after a year if things still arn't better?  I only see impossibilities getting through the next 5 weeks.  How I am going to last 4 months?  And then beyond that...

a crazy week followed by the ER

So the week has been insane.  I've slept very little, ate very little, worked a lot and was doing it.  I was tired, but all was pretty good.  Until yesterday.  Yesterday I was at work at 4 am.  A little after 5, I got up to go get something and the next thing I remember is that I was on the floor.  I felt so groggy and awful and it took me forver to figure out where I was and what happened.

I really had no idea what happened.  In one way or another I passed out.  What I'm not sure about is whether or not I had a seizure.  The only thing that made me wonder if I had a seizure was that I bit my lip.  Either way, something bad happened.  And it took me forever to come to.

There wasn't much I could do about it.  It was the open house at my camp and I wasn't leaving fo it.  My boss was great about....he told me to go, but ddn't argue when I said I wouldn't.  I called the doctor and he said I should go as well, and my plan to go after open house.

By time open house was over, I wasn't feeling so great.  My vision had changed and I just decided to go to th hospital.  The triage nurse said it probably wasn't a seizure, since I hadn't had an accident.  The nurse in my room didn't agree with that.  The doctor thinks it probably was a seizure since I bit my lip.

There was a bit of a fiasco about leaving.  The doctor came in and asked me if I wanted to be admitted.  I said no (of course!).  He agreed with that as he said if I was admitted, they wanted to monitor my heart and he didn't think it had anything to do with my heart.

Secod, he wanted to know if I wanted a spinal tap to rule out menegenetis.  I had the vaccine and so I said no.  He was also ok with that.  But whent he nurse came to discharge me, she had papers for me to sign that said I was signing out against medical advise.

I couldn't sign those.  If I did, then my insurance might not cover the follow up appointments.  I told the nurse that and she said she would go tell the doctor I was staying.  I was ridiculously bummed.  But he came in and said I didn't have to sign...basically he was trying to cover his backside.  But I promised I wouldn't sue him. 

Now, I have a headache

Oi vei.  My doctor wanted to get a CT Scan done of my neck before this summer camp craziness started.  As I was falling asleep last night, it occurred to me that I hadn’t yet heard back from her office as to when my appointment was.  I planned to call first thing this morning to find out if she able to get me an appointment.

Now, let’s be clear.  This woman who works at my doctor’s office is fairly brilliant.  Brilliant in that she can talk her way though anything and convince anyone to give her things or do things that are against policy.  It’s that really helpful to patients way – get your insurance company to agree to tests they wouldn’t otherwise cover, or get radiology to schedule things that should have a month long wait for…she’s just good like that.

So, I get to work this morning to a voicemail from one of my staff.  He said, “I’m not sure if you got my message on your cell phone….” That makes me look at my cell phone and realize I have three messages I didn’t know I had, one of them from Dr. Dayaw’s office.  Rut-row.  It’s Becky, who has I have an appointment today at 10:20 AM, but I have to be there three hours early.  It’s now 7:30 and I am a half hour away from the hospital anyway.  I panic, organize someone to take care of things for me, and head over.

I get back into cell service about half way through my drive and call the preregistration number for the hospital.  I explain to her why I’m late and ask if they will still take me.  She calls radiology and they want to talk to me.   They told me I misunderstood my doc’s office and that I didn’t have to be there 3 hours early.  I had to fast for three hours.  But, if I was on my way, they’d take me now.  I should note, I listened to the message from Becky, and she definitely said 3 hours early, so that wasn’t an MS moment.

So, lucky me, I got in there, got the CT Scan, and got out all before my scheduled appointment time even.  The woman in preregistration also had a lovely conversation with me about the Y and how much she loves it.  The radiologist who did the actual CT Scan also talked to me for a quite a while about MS.  She was asking lots of questions, and it made me wonder if she suspects she has MS…just the kind of questions she was asking.  It wasn’t polite chat, it was legitimate questions.  Who knows?

I do know that I am very grateful to Becky, who is the best finagler ever, and is able to get appointments no one else possibly could.  I also know that dye they give you – they said I might feel hot and that that feeling was one of the side effects.  She did not tell me I would think I wet myself though.  I was pretty concerned, until I realized I wasn’t actually wet , just warm and it was the dye and not actual incontinence.  Phew.

What you see depends on what you are looking for.

Someone I don't know friended me on facebook last night.  Her profile picture was the "Peace, Love, Cure MS" picture, so I accepted.  I try not to accept people that I don't appear to know and have no mutual friends in common with, but I figured she found me in one of the MS groups.

We mailed back and forth a bit.  She seems sane, generally positive and very interesting to talk to.  We started talking about doctors and such, and she doesn't like hers very much.

I told her about my doctor, of whom I love.  I almost don't want to say her name, in case someone happens upon this blog and is looking for a new doctor.  I feel like she's something of my little secret, and I don't want to share.  It's silly, I know.  Her name is Dr. Dayaw. 

She's a neurologist, and I figure she must treat lots of patients with all kinds of things, but when it comes to MS, she's a complete expert.  She doesn't give you any BS about it, she just tells you like it is.  She's by no means a fortune teller, and has no idea if I'm going to lose my sight, or not be able to walk anymore, but she's upbeat and very practical about it.

When I first met her, I went to the MS Center around here.  They have everything there, and on your first visit, you meet everyone and just learn the kinds of things they do.  I didn't even know they had a doctor there, which I guess, if I thought about it, I would figure they did, but I had never thought about it.

By time I actually saw her, I was on information overload.  I was still in the mental place where I did not want to deal with my MS, but I knew that I wanted resources that I could turn to if I had a flare-up again.  The biggest resource was a neurologist.  So, she saw me there and then asked me to come to her office for a follow up. 

I had no idea what to expect.  She started to talk to medication, and it wasn't even a choice.  It wasn't between should you do it or wait and see what happens?  It was just expected that you start the meds.  The sooner you start the meds, the better.  It was which one are you going to take? At this point she gave me four packets of literature from the medication companies.  She said to read them, and come back in two weeks and tell me which you pick.  She did give me the basics of each, with their ups and down.  This one is every day, but the side effects aren’t as bad as this one that is once a week.    Yadda yadda yadda.

As I left the office, I didn't like her.  I just wanted a doctor who knew which medicine was the best and told me take it.  I didn't want to read any information and I didn't want any independence.  I didn't want to deal with MS really.  Truthfully, I never read any of those books.  They are still sitting in a pile, in their shrink wrap, on my bookcase.  I found out I had a former classmate with MS, and he took Avonex, and next time I went to see her, I told her I wanted Avonex too.

I still didn't like her much.  I didn't hate her, and if I had to have a neurologist, she was good enough, but I didn't have the appreciation I have for her now.  A few weeks later, someone on a message board told me I shouldn't be taking any of these drugs.  They don't really work and the doctor just gives you the one they get the most kick-backs for from the drug company. 

The moment that I could tell him that my doctor didn't actually pick it, I did, was the moment I knew my doctor was a sheer genius.  I don't know if it was on purpose or by accident, or just by a desire to have her patients control their own lives, but for whatever reason, she's a genius.  I will never wonder if she is telling me something because of the gain to her personally, simply because in that first interaction, she removed herself and any perks from the mix.

The neuros I saw in Springfield were...interesting.  There wasn't one that I would want to be my doctor.  I felt like they were all really smart people, but had no actual ability to speak to a patient.  When I could get them to tell me something, they would inevitably get paged away before I could really understand anything.

Dr. Dayaw isn't like that.  I'm sure she is just as busy as all of them, but she actually takes the time to talk to you.  I went to the MS support group last month for the first time.  I figure, since MS is all I can seem to think about, I might as well meet some other people who would be willing to talk about.

It's at the hospital where the MS Center is where she works.  She came to the group - which was shocking to me.  I figured doctors were far too important and busy to come to support groups.  I still don't know if it’s normal for a doctor to be there, but in any case, she was. 

When she arrived, we made eye contact, but she didn't show that look of recognition.  You know, that smile, or nod, or look in the eyes, that shows you know someone. 

I was kind of sad about actually, as I think she is the greatest person in the world.  But then I thought about it, and I'm certain she has hundreds of patients and she's only been my doctor a few months.  I'm doing fairly well, and the reality was, she probably shouldn't recognize me.  And I wasn't quite so sad about it.

But the group was still talking to me, and letting me introduce myself and what not.  I was talking about work and she said, "she hasn't told anyone she works with about her diagnosis yet..."

It was at that moment that I knew I had the best doctor in the world.  Not only did she recognize me, she *knew* who I was.  She knew my story and where I was in life.  Maybe she's gifted with some kind of photographic memory or something, but I like to just think it’s because she cares.  As a patient, I'm not just a disease, I'm a person.

One of my favorite songs is called "The Endless Day."  I honestly don't really know what it’s about, but I've decided the middle verse is about her.   She's totally the sun with these clouds.

"The clouds are a curtain.  The clouds are for certain.  The clouds have arrived and they will never go away.  The sun doesn't matter.  The sun doesn't chatter.  The sun just knows that it’s a star.  The sun is convinced that its a star, so it watches the clouds.  It watches the clouds.  It sits back and watches and the clouds just drift away."