Have you ever taken a minute to think about your life? Have you ever had time to reflect on who you are, who you were and who you want to be?
When I was diagnosed with Multiple Sclerosis, a lot of who I was ceased to exist.
I don’t show it in my every day life. If you were to look at me, you wouldn’t know there was anything wrong.
On some days, the redness on my face makes people stare and the fact my hair thinned out to the extent it did from the medication I take makes people feel the need to tell me how I can ‘fix’ it.
Other than that, I appear pretty much as everyone else.
But that’s a facade.
Before my diagnosis, I was different. I was more active. I worked out. I kick-boxed. I worked lifting large animals at a veterinary clinic for 10 years. I groomed dogs and cats which was pretty physically taxing.
I walked- sometimes around my entire apartment complex which was over a mile.
I went the zoo without worry. I kayaked. I did stuff.
And then I stopped.
In 2004, I became a new person. I now had this thing inside of me and it weighed heavily on every move I made.
I didn’t talk about it. I didn’t dwell on it.
I just stopped being me.
I didn’t even realize I was doing it.
It wasn’t until recently that I began to think about why.
It’s not all in my head. (I mean, obviously, it’s a neurologic disease, so technically it is, but I digress.)
I was scared. I can’t handle heat. If I get overheated, my body doesn’t work so well. My legs feel like trunks and it’s hard for me to walk as much.
It’s not that I have weakness, but the feeling that I can’t move. I have a level of exhaustion that can only be described as if I had 300 pound weights on each ankle. I can stand, but it’s so hard to move.
Because of that, I stopped doing things that might possibly cause me to feel that way.
I didn’t want to go to concerts because of the heat and the people and the chance I may not be able to get back to my car.
I didn’t want to go places with friends because it was easier to say no than to explain what they couldn’t see.
I also need to nap every afternoon.
Other people tell me they like to nap, too. I don’t like it, I HAVE to nap. My body will not work if I overdo it and more than likely, I will have numerous bad days after that one.
I stopped working out.
I stopped walking outside.
I stopped believing I was capable.
Now I don’t mean to sound like I was sitting at home depressed, because I wasn’t and I’m not.
I have a full time job and I’ve been working full time since I was 18. I have been a teacher for 16 years and I love it.
I don’t use my MS in a way to elicit sympathy or ask for allocations to be made. I have amazing bosses who allow my schedule to exist in a way where I am able to work my best.
But I was allowing it to control my life.
Something had to change.
When I began to speak about my MS to my students, I had to face some harsh realities.
I revealed my diagnosis in a TED talk to the student body during a week of talks and discussions about pushing through hardships and learning how to cope with life.
Once I did that, I felt the eyes on me.
I worried.
I couldn’t put the genie back in the bottle.
But maybe that was okay? Maybe it was time to try something new?
Something old?
Something I gave up?
Something I told myself I couldn’t do anymore?
A boxing gym opened up near my house a few years ago. I contacted them a few times about coming in and when they contacted me, I never returned their calls.
I mean, I reached out to them and then I ignored them.
I was like the worst first date. Sure, I’ll go out with you, give you my number, but I’ll never let you know where or when and I’ll never respond to your calls.
If I’m honest with myself, I know why.
I was scared to death.
You see, people with MS live with the knowledge that on any given day, their symptoms can change. A flare can come on and life can change in an instant.
One day you have feeling in your legs and the next you don’t.
Sometimes it resolves itself.
Sometimes it doesn’t.
What if working out pushed my body into a flare I couldn’t come back from?
What if I tried to do what I used to and it was a horrible failure?
I was living with a hope I was afraid to push. I have been living in fear and I don’t want to be like that anymore.
So when the gym called after my inquiry, I answered.
I told them I had MS.
I usually don’t do that when I first talk to people, but I was scared. I needed them to know what they were getting with me.
They weren’t scared.
They told me they offer a special class for Parkinson’s patients to help with agility if I wanted.
No. I have no agility issues and I wanted to see if I could do the regular class. If not, I would happily join the other.
I set up an appointment. Come in for a boxing class. See what you think.
I was worried about it all week. I was up all night the night before the class.
I thought about bailing 1000 times.
But I went.
I had a minor panic attack when we began the cardio because everything hurt.
I soon realized everything hurt because it was hard work and I was out of shape- not because of my MS.
I put on the boxing gloves and when we began the three minute boxing rounds, I began to feel differently.
I was empowered.
I punched that bag and I began to think of the past 14 years.
I punched the bag in anger for my diagnosis.
I punched the bag in hate for the cancer that took my dad and forever changed my life.
I punched the bag and realized I still had strength.
It might have been hidden, it might have been smaller than before, but it was there.
It wasn’t all amazing. I had to pace myself a lot because the heat was high and my body was on fire. My face was flaming from my own generated body heat and I needed to remember that I have to be careful.
I don’t have to stop, I just have to be smart.
When the class was over, I signed up for a membership. When I had to fill out the form, my hand shook so badly it looked pretty illegible, but I did it.
I left the class and sat in my car, feeling like something extraordinary had just happened.
Yeah, it was just one workout, but it was a return to someone I had long buried.
I made sure that my day was free after the class in case I couldn’t move mush. I went home and took the dog out and relaxed for the afternoon.
My muscles hurt, but not in the normal way.
My sister calls it a ‘good hurt’.
I don’t know about that, but it was different.
I told my mom and my sister about going, but other than that, I made it out like it was nothing.
I knew, for me, the test would be if I actually went back.
It won’t mean anything if I don’t keep it up.
I went during spring break. Could I go when I was working?
The first class was 45 minutes.
I decided to go again yesterday afternoon.
The class was 60 minutes and it wasn’t just boxing, but kickboxing.
The instructor didn’t know me or my issues.
We began and once we started kicking the bag, something strange happened to me.
I began to cry.
Now it didn’t stop me from kicking or punching, but it was weird. I laughed at myself as my tears fell and thankfully, since I was sweating and so red already, nobody could tell.
I think I cried because of the years I lost. I cried because I allowed this disease to dictate my life.
I always tell people I am so much more than my MS, but I wasn’t acting like it.
That’s wrong. I was wrong.
I have had MS for years, so more than likely, when I worked with animals, when I kick-boxed all those years ago, when I walked through the zoo, when I did anything taxing, it was there.
I just didn’t know it.
That’s not to say I am imagining things now. My disease has progressed and I am effected in ways I wasn’t before.
But I can still live my life.
I can work out.
I can find a way.
I modified the workout to fit what I was comfortable with. I will continue to do so.
Today I am in pain, but it’s a reminder than I did something pretty amazing.
It’s not what I would call a ‘good’ hurt, like my sister says, but it’s an ‘earned’ hurt.
I make changes to my life because of this disease and I have had to do that. I understand that and I am incredibly lucky not to have so many of the debilitating issues so many with MS have.
I need to continue to adapt.
I can nap, but I can also push myself.
I can go to the zoo, but I go with someone who I trust and who listens when I have had enough. (Kasi is my hero).
I accomplished something important for me, and I’m proud of myself. It won’t mean much if I don’t keep up with it, but I am going to do my very best.
Besides, I find that kicking and punching things is pretty cathartic.
-Robin
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