A diagnosis and a choice

It’s been a little while since I posted, and usually that means a couple of things. One- I’m drowning in grading papers, or two- I’m not feeling so great.

Since it’s summer, my paper grading has subsided, although I’ve been teaching a summer class for the last few weeks.

I have been feeling okay, but this time of year is always a little hard for me. It’s hot, which is pretty much my kryptonite. I have a really hard time doing anything because my body just stops wanting to move.

This is also my 13th anniversary of being diagnosed with Multiple Sclerosis.

Most people who have followed me, know of my diagnosis. It’s not a secret, but by looking at me, one would never know anything was wrong.

This past November, I gave a TED talk at my school to all of the juniors and seniors. We were having a week full of assemblies which talked about all of the ways that everyone matters. Everyone goes through things in life and we can all learn from each other.

The administration approached me about speaking and I had to decide if I wanted to open the door to something I held pretty close to the vest. I mean, these are teenagers and I’m the teacher. I didn’t want to change how anyone looked at me. I was terrified that I would become ‘the sick teacher’ and I never, ever wanted that.

I was also told to be very careful about who knows about my illness. People can use things against you.

But, I decided that I wanted to share. After all, other teachers were also doing talks and I figured this might help someone.

So I agreed.

I am including the text of my speech here so you can learn a little more about me. I’m changing a few parts that work better when spoken, but this is what I had to say. After, I’ll tell you how things have changed since.

*******

Life is a funny thing. Just when you think you have everything figured out, it reminds you just how little control you have.

I learned that lesson twice in my life.

It’s not that I was a really arrogant person, or that I thought I was better than anyone, but I was pretty sure about a few things.

I was sure I was a relatively happy and healthy person, and I was sure my family would always be there for me.

Before I go into details about the lessons I learned, let me go back a few years. I grew up in a very nice little town. I never moved and my life was stable. I was anything but. I was the kid who struggled through school and I didn’t know what I wanted to do with my life after I graduated.

Everyone had a plan.

I didn’t.

I was scared. I was scared of not being someone important. I was scared of messing up and I was scared of failure.

But I think I was most scared of the unknown.

Everything had always been very clear to me. I had a routine and I liked that. I don’t do well with the unexpected, an issue that was about to become a real problem.

I worked hard through college and after a long period of time working full time and going to school full time, I finally got my teaching degree. I interviewed many places and found myself here, at the very high school I left all those years before.

The usual thoughts went through my mind. What would it be like to teach next to the same teachers I had as a student? What would I feel like being on the other side of the desk?

Would all of my high school anxieties come back? Was this the worst decision ever?

I started teaching and it was incredible. It was challenging and fun and scary and intense and I began to forget the fear and anxiety and I started to uncover a passion I never knew I had.

I could inspire students. I could become the person I always wanted to be. I could do it all and I found the perfect opportunity to grow as an individual and as a teacher.

My first few years teaching were a blur. So much happened and so many things were thrown my way, that it was hard to take a breath. I learned that I can juggle many things at once and I don’t really have to eat or use the bathroom at all during the day.

I found a groove.  I had directed 3 school plays, taught over 10 different classes, advised the yearbook and the school paper and I was set.

I had a plan

I was on fire.

And then life said…nope.

While teaching in February of 2004, I began to notice something was wrong with my vision. I felt like I had a spot on my glasses that I couldn’t rub off. The problem was, when I took my glasses off, the spot was still there.

I didn’t think much of it. I made an appointment to get my eyes checked and went on with my day.

The doctor visit came and went and my eyes tested perfectly. Nothing wrong. No problem.

Okay, I figured they knew more than I did, and maybe I just needed to learn to live with whatever this spot was.

Then the fireworks started.

I literally saw fireworks out of the corner of my eyes. I would walk down the hall past the cafeteria and when the light hit my eyes, there were little bursts of light dancing to my right and left.

Now the thought that maybe I was having some sort of break from reality crossed my mind, but my sister is a psychologist and she assured me I was not losing my mind.

But something was wrong.

More eye doctors, more tests, more normal results.

I was frustrated.

My parents were frustrated.

My sister was frustrated.

I knew something was wrong, but everyone told me it was in my head.

Turns out they were right.

The last doctor I went to told me the only other option was to have an MRI done of my brain. They could get clear images of my brain and check for any abnormalities. It wasn’t a necessity, but if I wanted to cover all my bases, than I should do that.

So I went to the hospital, was strapped into this tight area and lay there for 45 minutes while what sounded like a jack hammer went over my head.

I went home and went on with my day.

The next day at school, I was having lunch with a few teachers when I received a message on the phone in my classroom.

It was from the eye doctor.

It said. It’s not your eyes, but your brain. You need to see a neurologist right away.

Okay, so this was a tad alarming. A million thoughts ran through my mind. What did they find? Was it a tumor? Could I finish working the day or did I need to go home? What kind of a message was that to leave someone? I didn’t have a neurologist. I didn’t even know how to find one.

I called my parents and told them what happened and they were furious. How could someone leave such a message? We called the doctor back and waited for word.

In the meantime, I decided to be proactive. I took myself back to the hospital and requested a copy of the MRI report.

Now, in hindsight, this was not smart. I was in no way prepared for the information on the sheet and to say life slapped me in the face would be an understatement.

Life drop kicked me.

The report was full of medical jargon that didn’t make sense to me. There was a lot about the size and shape of my brain which seemed normal from what I could see. But then there were a bunch of abnormalities. The report said that multiple lesions or spots were found on my brain. At least 15 to 20.

I scanned the report and they listed a bunch of possible diagnosis.

Many of them were easily ruled out. I didn’t have rabies or Lyme disease. I hadn’t travelled out of the country or been bitten by anything.

The bottom of the sheet said it all.

I felt like I went to the doctor for a cold and left hearing my leg had to be amputated.

I was stunned and scared and I didn’t know how to process any of this. I didn’t tell anyone I was going to pick up the report. I never expected it to say anything serious.

It was just a precautionary test. It wasn’t supposed to say anything.

The next few weeks were filled with questions. I just turned 30. I had my dream job. I moved out on my own.

What did this mean?

I did my research. People with MS are in a wheelchair. They can’t work. They can’t function.

Was that going to be me? When? How long did I have?

I went in for more tests to confirm the diagnosis. I had to have a brain test where they hooked up electrodes to my head and I had to watch a screen. It wasn’t so bad, just annoying.

I had to have a lumbar puncture, or a spinal tap, where they insert a needle into your lower back to collect spinal fluid.

That wasn’t the best day, but I did it.

I found out many people wait years for a diagnosis.

 

Mine took three days.

I had Multiple Sclerosis.

MS

I had MS.

Now what?

Everything felt different.

I didn’t know what my life looked like anymore. I didn’t know if I would be able to work. I didn’t know what was going to happen.

For someone who doesn’t like change, this was paralyzing.

I found a neurologist and my mom and I went to the first appointment.

I sat there, my stomach in knots, sweating and anxious for what he would say.

I had questions and I was hopeful there would be some clarity.

He would help me.

I remember sitting there and my mom was doing her best to keep me calm when he came in. I think we played our 3000th game of ‘I Spy’ something we did in doctor’s office since I was a baby.

He sat down and told me I had to make some decisions. MS had no cure and would get progressively worse. My only shot at stopping the progression was to begin a medication. It wasn’t a cure, but a chance to slow down whatever was happening.

The medications were all injections.

Now I’ve never really had any issues with shots, but I was not excited about the prospect of having to give myself injections.

For the rest of my life.

He began to list off the side effects of the medications, which were pretty bad. I remember thinking that I might not have any issues with the MS itself, but the side effects of these meds were terrible.

I was shell shocked and I know my mom could tell.

The doctor had no clue.

My mom smiled and told the doctor I had some questions.

I nodded and looked at him.

I just turned 30. Will I be able to have a life? Can I have children? Can I keep my job?

I waited and he looked at the chart, never making eye contact.

Right now, all you need to do is pick a medication.

That’s when my mom stood up.

“Actually, all we need to do is find a better doctor.”

She took my hand and we left.

I have never forgotten that doctor’s face. I have never forgotten how scared I was and I have never forgotten how he didn’t see me.

He saw my disease.

That’s all I was to him.

So that’s all I became.

Looking back on that time, I realize just how much that appointment affected me. I lost my identity. I lost my sense of humor and I lost my ability to trust myself.

I became depressed.

I didn’t want to go anywhere or do anything. I cried. I mourned the person I was and I wanted to go back.

I also didn’t tell anyone.

I didn’t know what to say, so I said nothing. I was quiet and withdrawn and I hid from my life.

Then my dad stepped in.

My dad had a friend who I had known much of my life. He was in a wheelchair now because he had MS.

I knew that, and it terrified me. I didn’t want to talk to him.

But my dad knew better.

He had his friend call me and talk to me. Not about the MS, but about my concerns. He also gave me the greatest gift.

He got me in to see his doctor.

That first appointment, I was just as anxious and scared. I was resigned to the fact that my life was going to be completely different and there was nothing I could do about it. I had researched the medications and I was reconciled to the side effects.

I was defeated.

When he walked into the room, I was stunned.

He was the parent of one of my former students.

Great.

But something pretty amazing happened.

He asked me how I was feeling.

I asked if he read the test results.

He smiled and sat down, never taking his eyes off of me.

How are you feeling?

Um, okay I guess?

That’s good. Do you have any questions for me?

Wait, what?

My mom had tears in her eyes and it wasn’t because she was worried. She saw someone look at me as a person, and not a disease. She also saw me smile for the first time in what seemed like forever.

We talked and laughed and he explained everything he could for me.

The biggest issue was that with MS, nobody knows the course it will take. Some people have 1 lesion on their spine and they can’t walk. Some have a lesion on a part of their brain that controls movement and they have trouble with holding things or picking things up.

I joked that I felt okay and I had so many lesions. Maybe I didn’t really use any of my brain.

Before we left, I had decided on a medication. I chose the strongest one because I wanted to fight as hard as I could. I would have to give myself injections three times a week and I was ready for the horrible side effects.

The most important thing I remember about that first meeting, was this exchange.

“What is your biggest fear?”

“What if I walk down the hall and fall down and can’t get up?”

He smiled at me.

“Have you ever fallen down?”

“Of course.”

“Have you gotten up?”

“Yes, but now everything is different.”

He shook his head.

“The amount of lesions on your brain indicate that you have had this disease for years. When you fell in the past, you had MS, but you didn’t know it. You are no different today than you were the first day you got your job. Now you know, and now we can fight, but this didn’t happen overnight. You’ve been living with it for years and you have never let it stop you. Why start now?”

That made a difference.

He was right.

I needed to make a decision and move on with my life.

So I did.

I started the shots and felt like I had the flu, but I got dressed every day and went to work. In 13 years, the side effects have never gone away.

I get so tired at times I feel like I could lay down on the floor and just sleep.

Sometimes at the end of the day it’s all I can do to get home before I have to nap.

Sometimes I don’t go out at night because my legs feel so heavy, I can’t imagine walking anywhere.

I became used to the feeling of tingling in my hands and feet and sometimes my arms and legs would feel numb.

I lost the peripheral vision in my eyes a few times, but I have adjusted and learned how to stop panicking when something happens. My family appreciates that. We don’t need to run to the ER every time it happens.

My dad was diabetic and he joked about how I was now “in the club” because I had to give myself shots. His sense of humor made my fear disappear and I knew that I would be okay.

It’s just what we do. We fight. We live.

I didn’t tell many people about my MS for a long time. I didn’t tell my students. I was worried about their reaction. I didn’t want them to look at me and wait for something to happen.

Then I realized that’s what I was still doing.

I’m not ashamed of my disease, but it’s important for people to know that’s not all I am.

My dad took me to Cleveland Clinic for a second opinion on treatment. We wanted to be sure we were doing everything we could and my doctor was all for it. We drove the 3 hours to Cleveland and spent the day there, in their MS wing. It was overwhelming, and my dad just made me laugh. He always did that. He just made everything better.

Our appointment was confirmation that what we were doing was right, and we drove home with the knowledge that I was facing this head on and would do whatever I could to have the best outcome possible.

I was controlling what I could control.

Life went on for a few years and things were okay.

Things were actually pretty good.

Then life decided to remind me who was in charge.

My dad hadn’t been feeling himself for a little while.

He went to the doctor and had some tests done and we waited to find out what was going on.

September 24 we found out he had cancer.

The doctors told him there wasn’t much they could do, but he wanted to fight. He chose an aggressive treatment that would hopefully give him a few more years at least.

That’s what we do.

We take what happens and we fight.

That’s what he taught me and I knew he could do it, too.

November 22 he died.

Eight weeks later and he was gone.

Thanksgiving.

What?

My dad was my hero. He was my biggest cheerleader and he was involved in every aspect of my life. He came to school events to help my yearbook students with photography. He was so proud of me and of my sister and he loved my mom more than anything.

What was this going to mean for all of us?

How would we deal with this? What would we do without him?

I spoke at the funeral and I remember so many of my students were there.

I looked out at the faces of all of the people who loved him and I remembered something important.

He raised his girls to be strong. He raised us to be okay.

And that’s what he deserved.

He deserved our strength and our tenacity.

He believed I would be okay and because of him and his faith in me, I am.

I have had a lot of bad days since he died, but nothing I go through will be as bad as losing him, so I say, bring it on.

I have MS.

I also have hope.

I have MS

I also have a family who supports me.

I have MS

I also have an amazing job where I can inspire people.

I have MS.

I am also a writer with 25 books published.

I have MS

But it will never be all I have.

Thank you.

*******

That was my speech. I remember after speaking, I was shaking so badly because I worried I had just made a colossal mistake.

And then one of my bosses texted me.

“That was amazing. You are an inspiration.”

As I walked out, people hugged me.

I don’t like to be touched, but I allowed it 🙂

I went back to my room and went about my day. I received many calls and texts and emails telling me how much they appreciated what I did.

I had students stop into my room and tell me that this helped them. Some of them had parents with MS and they never thought they could talk about it.

I had some strange stares in the hallway and then realized they probably were thinking about what I said.

Some things bothered me.

When I would drop something in class, a bunch of kids rushed to pick it up. They never did that before and if anyone knows anything about me, it’s that I hate help.

If something is high up and I get a chair to stand on, I have students rush to help me.

Again- they never did that before, but I guess it’s okay.

I just don’t want them to think of me any differently.

Overall, it was an immensely positive experience and I don’t regret it at all.

There are things I didn’t tell them in my speech. I am physically very stable. Looking at me, nobody would know.

But there are things they don’t know.

I have a degree in Musical Theatre, but MS has taken away my ability to sing. I have trouble with vocal control and can’t do what I used to.

I have trouble remembering names. My students are the hardest. I always know who they are, but sometimes names are a struggle. It could also be that I have 180 kids each year. 🙂

I am exhausted most of the time. If I don’t have a chance to nap, then I am useless the next day.

My face is perpetually red from the effects of the MS and the medication. I always look like I just ran somewhere.

But there are so many things that are just fine.

I am entering my 16th year of teaching.

I still love what I do.

I feel good most of the time.

I am never going to stop fighting this disease.

I know this isn’t really book related, but I write characters who struggle like I do and like many of you do.

There is always hope.