Two Steps at a Time

I cringed when I heard the alarm and the announcement to vacated the building. Someone told me that it would be all right, that fires in office buildings or fire drills were fairly common. It wasn’t the possibility of fire that worried me.

It was the stairs.

We were eight floors up. I knew that I would have to go down them. Entering the stairwell, I looked down at the curving stairs, worming their way to the bottom. I was terrified. I have no balance on the stairs, fall going up them or down them quite often.

It would take all my concentration to not fall. I was worried that I would fall into or on someone. Thankfully my co-workers had my back. One took the stairs in front of me, one on the side and one behind me.

All I had to do was concentrate on the stairs, on climbing down the mountain. I held on to the railing for dear life and was very careful, almost exaggeratedly so, with each step. I started my counting at the top and kept starting over when I got to another floor:

8

One, two, three, four, five, six, seven, eight, nine, ten, eleven, twelve, thirteen, fourteen, fifteen, sixteen, seventeen, eighteen, nineteen, twenty.

7

 One, two, three, four, five, six, seven, eight, nine, ten, eleven, twelve, thirteen, fourteen, fifteen, sixteen, seventeen, eighteen, nineteen, twenty.

6

One, two, three, four, five, six, seven, eight, nine, ten, eleven, twelve, thirteen, fourteen, fifteen, sixteen, seventeen, eighteen, nineteen, twenty.

And so on.

Eighty five steps. There were eighty five steps. Each one felt like I was trusting myself to the fates, to the unknown. Anything could happen but it didn’t. I made it down okay, I survived the climb down the mountain.

Now it is afterwards and I am paying for the climb down. My legs feel as if they are hardened jelly that has been set afire. As I sit here typing this, I can feel parts of my legs spasming and burning. The muscles are hard yet feel like they are made of liquid.

What energy reserves I had built up are gone. Apparently I look pale and unwell. But I feel victorious. I didn’t fall down the steps. I did not fall down and I kept walking.

And I will keep walking, two steps at a time…

I surprised myself today.

I had to run errands. I went to the bus stop and the bus was just driving away. The sign said it would be another thirty six minutes until the next bus. I didn’t want to wait that long and so made a snap decision. I decided to walk.

I had to go to the post office and get a parcel. It was a few blocks away, about a fifteen minute walk when I was walking at my normal speed. I knew walking this time would take longer but I thought I could do it.

I merely put one foot in front of the other and sang a little bit to myself:

One step, two steps, three steps four…

It took a long time, half an hour or more. However, I made it all the way there and didn’t trip or fall once. I was so encouraged by my success that I decided to walk back too. I stumbled a bit going back but didn’t fall.

I decided to see what else I could do. My body was co-operating with me so why not use that to my advantage? I did the groceries and even took out the garbage and recycling, carrying them up a flight of stairs.

I was even able to lift the garbage can up to put the garbage in the dumpster. Then I walked down that stairs and wondered what my body was going to do. I’ve waited most of the day and nothing has happened.

I’ll more than likely pay for the work out tomorrow. Though I wasn’t moving as quickly or as well as I used to, I was able to do what I set my mind to. I surprised myself today, or rather, my body surprised.

Some would think it odd to look at what happened today as nothing out of the ordinary, nothing to get worked up over but it has been a completely pain free day where I was 90% in control of my body and I was able to get around like I used to. Even though I had my cane, I felt like a part of my old self had come back.

Even if it was just for a day, it was the greatest of gifts.

For that, I am thankful.

During the night, I was woken up repeatedly. Max and Cybil were arguing again.

My thighs spasmed, and my legs were filled with pebbles and they were being rushed around my body by water. Then my calf muscles started twitching and hardening. My back and shoulders got in on the action. It was  as if my body were a symphony and it was singing to me.

When I woke this morning, I could barely walk. I shuffled around this morning, doing my old counting trick, seeing how far I could get.

One, two, three, four, five, six, seven, eight.

In the shower, I was up one moment and then I was down. I didn’t slip so much as the tub rushed up to meet me. I remember reaching for the soap and then I was down on my knees, water rushing over my head.

I pulled myself out of the shower and got ready to face the day. Moving hurt, dressing hurt, but I pushed through it, the pain but a barrier that I could move across.

On the bus, I lost my balance and ended up falling into an older man. He was very nice and didn’t seem to mind getting to know me close up. He helped me to my seat and asked if I was all right. I was touched by his kindness when I expected him to tell me off.

During the day, I was careful as I moved around the office and didn’t have a mishap. No, that happened on the bus ride home.

I shuffled on to the bus and all the seats were full. A man old enough to be my grandfather offered me his seat just as the bus began to move. I lost my balance completely and a woman who was standing caught me before I fell. Another young woman gave me her seat so the older gentleman could remain seated.

Like the older man this morning, the woman made sure I was seated. When she knew I was okay, she let go of me. When I arrived at my stop, she helped me to stand and helped me off the bus.

I looked at her and tried to show my gratitude in two simple words: “Thank you.”

She waved my thanks away. “What would the world be like if we didn’t look after each other?”

Going home from the bus stop, I felt lighter. I had received help from two ordinary, everyday angels. I only hope they know how thankful I am.

When I was getting off the bus after work today, I ran into someone I know but haven’t seen in a while. He asked me how I was doing.

“I’m okay.” I said.

He gave my cane a long look. “Really?”

“Yes. I’m doing great actually.”

“I’ve seen you around, walking with that.”

“It’s for the MS.”

“Oh, I know.”

“How do you know?”

“My mother had MS. She would shuffle and her body would bend as she walked, like she was trying to fall backwards. Then she would sit and be able to get up again. She died with it.”

“Well, it doesn’t go away.”

“Oh, I know. But don’t let it limit your quality of life.”

“I’m trying not to. I get out and around every day, still go to work.”

“I know. You’re like my mother. She was stubborn as an ox too. She lived till she was ninety-three.”

“Thanks.”

“I meant that as a compliment. You’re walking around, you’re getting out, you aren’t hiding away in your apartment. That’s what you need to do. You need to get out there and live and you’re doing that.”

“Thank you.” I was touched.

“Don’t give up, don’t ever surrender. Life is worth living as long as you want to live it.”

He hugged me and then got on his bus. As I watched the bus drive away, I thought about my quality of life.

And decided that it was pretty awesome.

Someone recently told me that acceptance was a choice.

I had never actually thought of it that way. I was born with the Cerebral Palsy and didn’t have a choice. With the Multiple Sclerosis, it just happened and there was nothing I could do about it.

I was angry for a large portion of this year. My body was unknown to me, it had become a foreign entity. When I started going through my tests first to determine whether or not I had MS (I did) and then to find out which kind of MS I had (relapse and remitting) I kept hoping that I would be able to start my medication soon so I could get back to normal.

My MS nurse told me about the injections I would have to take. She also told me that it was not a cure, that the injections would slow down the MS but not take it away. I hardly listened, so focused was I on the injections making me better.  I was convinced they would.

In the meantime, I grew angrier and more withdrawn. As I started the injections, I prayed for a miracle, for my life to go back to what it was before. I hated my cane, I hated the injections, the pills. I was still experiencing balance issues, still falling. I began to hate myself.

This summer, there was a person that was playing music on the sidewalk down the street from me. We connected, in the way that strangers do. He pointed to his walker. “I walk with assistance too.”

We talked for a while and I told him how angry I was, that I raged inside. He shook his head. “You have to welcome it, man. This is your life now. You’ll never be off the medications and you really have to learn to love your cane. You have to learn to love yourself again.”

It took a few days for his message to sink in. I could still love myself even though I carried MS and CP inside of me. I wasn’t helpless, I wasn’t nothing, I wasn’t a broken man. I wanted to get on with living and not wallow. I still had a lot of life left to live.

At that moment, even though I didn’t know it at the time, I was accepting myself. I was accepting the situation and started to look at my cane and my medications as tools for a better life rather than a hindrance.

I accepted my situation which in turn made it easier to love myself again. I thought of it as deciding to live rather than wallow, but it was about accepting the things we cannot change and learning that life didn’t have to end.

It was only another beginning.

I just remember trying to step over the crack in the side walk. Before that step, I was walking fine, with confidence. I was being careful, taking my time. I was watching where I was going. I had done well today.

Then I saw the crack in the sidewalk; and then I was falling. There wasn’t anything I could do to stop myself, not even my cane could keep me from falling. I was up one moment and I was down the next.

I was able to reach out with my hands and they hit the cement and my arms gave were soft. and in the end, I just slid-I could feel my chin scrape along the pavement. I think I let out a sound, or maybe a whoosh of air.

I heard a homeless guy at the bus stop say: “Hey guy, are you okay? Man, are you okay?”

Arms grabbed hold of me and pulled me up. There were three men and a woman. When I was standing completely, I saw the whole crowd of people waiting for the bus all looking. Some of them had stepped forward to help me.

“There you go.” An older gentleman had helped me up on the left side. He handed me back my cane. It had fallen out of my grasp. “Hold on to that now.” He said.

“Thank you. Thank you all. I’m okay.”

I went to move away, towards the bus stop, when one of the other men held on to my arm. He was the one on the right. “You’re sure you’re okay to walk?”

“Yes.”

“Are you sure you’re all right?” He looked at me with concern, his eyes grave, regarding me with worry.

“I’m all right. Thank you, so much.”

He nodded at me and walked on.

I was all right. I would bruise on my legs and knees later, my arms. I didn’t rip my coat or pants, but I’d hit the ground hard. I wondered if I would bruise on my chin. I got up and went to my next bus stop.

I got up and kept walking.

There are days where I’m hardly bothered by the MS at all. I can walk with varying degrees of success. I can handle very flat surfaces and do pretty well getting around with minor balance issues. My muscles are tense and sore, but I’m all right with that. I do not know if this is caused by the CP symptoms or the MS ones; and I’m still learning about those.

Then there are the days where it’s difficult to get around, where every step is difficult. Not painful, exactly. More that my legs are heavy, my feet weighted differently; where my step is slightly off centre. It is like I have grown a triplet.

I was thinking of Cybil Paulsen the other day, that internal twin that was the disability I was born with. I referred to him in my writing from before. What would the other one be? I thought. How about Max Simone?  It was difficult before, but my CP was very mild compared to so many others.

Now it is as if the Max is giving Cybil strength. Or there are days they war with each other. I don’t know Max very well, we’ve only really just met, you see. I’m still learning what he’s capable of.

I often feel like Cybil is on the right and Max is taking up the left. Sometimes they switch it up and have a little fun, just to make sure I’m paying attention.  They’re funny that way. I know that way.

Yesterday was rough. It was as if my feet and legs were made of stone, all hard and heavy, unmanageable. In the evening it was as if I was moving my legs through molasses and they were made of stilts of wood.

Today, I was able to walk fairly well and my balance was all right, but my muscles are tensed up, like I’m having a mild whole body spasm. There’s no one area of pain, just an over all body hum.

I don’t know where one begins and one ends-which are the Cerebral Palsy symptoms and which belong to the Multiple Sclerosis? I don’t know anyone else that has both disabilities at once, so there’s no one I can ask- and Cybil and Max aren’t talking.

I find that lately, it’s all about weight and balance.

I have to be careful with what I put in my bag. I used to carry tons of stuff with me for the day: My iPad, my eReader, my Blackberry, my iPod. Then there’s all the other stuff like band-aids, bottles of moisturizer, Kleenex, the food you’re going to eat that day, the stuff everyone carries with them.

Now I only carry what I’ll need that day, usually my Kindle and phone. I can’t wait until I get to work in the morning so I can put the lunch away in my desk and take everything out of my bag. It’s just so damned heavy. It really depends on the day. Some days, even with nothing in the bag but the cell phone and the Kindle, it weighs a ton.

Shoes are difficult for me, too. My feet just go all over the place and most days, I can’t pick up my feet. I have to be cautious of how my feet and legs are (Tense? Shaky?  Spasming?) and choose my footwear for the day carefully.

Balance had been a problem before when I just had Cerebral Palsy. With the Multiple Sclerosis as well, it’s a challenge. And riding the bus? Damned near impossible. I’ve been impressed with the buses and the people though.

The doctors and nurses at the Civic and General Hospitals were and have been a godsend to me but lately?  It’s been the drivers and people on buses I’m most impressed by. I mean, no one is happy on a bus, right? You’re going from point A to point B. I’ve seen some pretty grumpy bus drivers and some really rude people.

I’ve been on buses where people who have had to move for wheel chairs of strollers or people with canes have had to move and complained. Buses are usually not a pleasant experience.

If the doctors and nurses were and have been a godsend, the drivers and passengers on OC Transpo have been a daily gift. Getting around from point A to point B has morphed into a daily obstacle course. Stairs and slanted surfaces are the worst for me and a moving bus? Forget it. No balance, nothing. My body becomes unsure of itself. I don’t know it anymore.

I can’t stand on a moving bus. I had to once and the bus went into a fast turn to avoid construction. I ended up hitting some poor woman in her foot with my cane. She got very angry and started yelling at me when she got off in front of me. I really did feel really bad about that.

Lately, taking the bus has been a wonderful experience. Most drivers lower the front of the bus for me and someone always gives me a seat if there isn’t one. I always say thank you and always experience a joyful moment. I know what it’s like to give up your seat on a packed bus as it’s something I always used to do.

People have been courteous, even kind. People old enough to be my grandparents let me on the bus before them. Teenagers give up their seats. It’s all a little strange to me, actually. The drivers in particular have really impressed me. Every time they lower the bus for me and make sure I have a seat, I am thankful.

It’s more than just lowering the front of the bus, however. It’s about the fact that the drivers have been incredible. I had one driver in the afternoons during the summer. He would look out for me every day when I got on the bus and when I got off. One day I had left work early and didn’t take the bus home. He asked I had gotten home all right the day before. It was more than just saying hello, or idle chit chat. What surprised me most was the kindness-it was genuine.

OC Transpo is a daily reminder that people are awesome and that human kindness is alive and well.