Exploring the Outdoors: MS gets in my way

Multiple Sclerosis significantly impacts my mobility. I am unable to walk long distances and because of this I can’t always go everywhere other people can. For example, this morning my husband went for a hike. Before Multiple Sclerosis started to affect my ability to walk I loved doing things like hiking and riding my bike. But since I can’t walk long distances anymore, I have to use a mobility scooter to get around sometimes. Most places I can get by on my scooter, but sometimes I get left behind. I won’t pretend I know fully how to cope with this and I won’t pretend that it doesn’t entirely suck. For me, it is by far one of the most frustrating and painful things about having MS.

While there are accessible paths in urban and suburban environments and in smaller numbers in places like national parks, there are just some places that are not going to be accessible. Exploring nature, to be fully emerged in nature, can be difficult to achieve for someone like me. I’m not asking that the world change suddenly to accommodate me, but I would like to see a greater effort to make spaces in our public lands accessible for people with disabilities. Having Multiple Sclerosis has forced me to modify how I get around, but my interest and love of the outdoors hasn’t changed. I want to continue to experience the outdoors and the natural wonders around me. So I’ll continue to seek out the accessible spaces and ride across bumpy trails so I can go along too. But there are plenty of spaces I just can’t access like the hiking trails in the nearby national forest where my husband is today.

The good news is that there are other people out there thinking the same things I am. There are other people who also want to be able to enjoy nature, bask in the beauty of our planet, and not let their disability stop them from doing it. Better yet, there are people who want to help us do it. A friend of mine has been a part of a project that has used adaptive equipment to help people with disabilities access places that would normally be impossible to reach. Here’s a video of a trip they took to the Grand Canyon. Today I sent him a message to see if he wants to help me do some hiking. I’m not looking to tackle the Grand Canyon. I doubt I’d ever want to do a trip that big. Right now, I’d just like to go on an afternoon hike with my husband and some friends.

Love in the Time of Multiple Sclerosis

Today is my five-year wedding anniversary. I knew my husband in high school, but we didn’t date then. We had a class together, but weren’t really friends either. I saw him for the first time after high school in 2006 at a concert. He was with friends of mine from high school that I had recently reconnected with. Several months later we saw each other again at a party and decided to go out.

Dating for people with Multiple Sclerosis is not easy. At this point I had been living with MS for nearly eight years, but it was still awkward to disclose MS in a dating situation. I thought this would be much easier because he certainly already knew that I had MS. News of my disease had traveled quickly through circles of friends, old and new, and acquaintances so I assumed word had reached him as well. Although I wasn’t sure exactly what he knew. I had learned that news of illness spreads through groups much like the game telephone. Not long after being diagnosed, I ran into a friend from high school that had heard I was dying. At that time in my life I was quite depressed and I felt like I was.

Turned out the news hadn’t found my future husband. He had missed the rumor mill while living down south for a while and no one had brought it up to him after we reconnected. So I spent some time explaining MS to him on our first date. My symptoms were still hard to notice, but I was at the point that I couldn’t walk long distances without taking breaks. So I told him to do some Internet research and let me know if he was still interested. At the time he didn’t seem too alarmed.

He later told me that what he thought I had was Scoliosis. We all know what that is, at least in my generation since we all got tested for it in elementary school. It wasn’t the first or last time someone heard Scoliosis when I said Multiple Sclerosis. Not everyone knows what MS is, so I think they sometimes connect it with something more familiar. When he looked it up and realized what I have is much different, he told me it scared the crap out of him. Lucky for me, it didn’t scare him enough to stop seeing me and we were married a year later.

My husband is so many people to me. He’s my lover, my best friend, and he’s my caregiver. I know that he’s an extraordinary man and I’m always thankful for the love, companionship, and support he gives me. He’s willing to take on the challenges of MS by my side. We connected at a point when I had come to a good place in my life after going through depression, and spending years trying to figure out how to live life with MS. And despite the qualities in myself, put there by MS, that I disliked and wished away almost every night; I felt deserving of love. I’m thankful for that. Otherwise I would have missed out on the best gift life has given me.

How I Cope with Questions From Strangers

Yesterday I was at a store waiting in line on my scooter when the woman waiting behind me said, “Those things are great”, nodding at my scooter.

“Yep”, I agreed. “They sure are”.

“I had one of those for a while. So what happened to you?”

Her first assumption was that I was recovering from some sort of injury. I told her nothing had happened and that I have Multiple Sclerosis. “That’s hard on you, huh? I knew someone who had that”.

Regardless of how many people know other people with Multiple Sclerosis, most strangers I encounter see a healthy young woman and the possibility that I might have a disability doesn’t compute. It’s not their fault, and I’m typically not offended as long as they are polite. Multiple Sclerosis is a puzzling disease, it can be difficult to treat, doctors don’t know exactly what causes it, so it makes sense to me that it’s difficult for people without it to understand it.

MS can change from day-to-day, even hour to hour, and I think that can be confusing for some people. I can have a day of almost complete normal, but then walk through the hallways at work like a drunk the next day. Sometimes my MS isn’t so obvious, but other times it screams out to the world. I think people expect a disability to be all or nothing. With my MS, it’s somewhere in between.

These frequent changes involved with Multiple Sclerosis can be hard to understand. Equally difficult, I think it’s hard for people to make sense of what they are seeing when they look at me. I’m young! I look healthy! But very often that’s how people with Multiple Sclerosis look to the outside world; just fine.

Living with Multiple Sclerosis has taught me to keep an open mind. Our eyes don’t always tell the full story. I’ve learned to deal with the fact that I’m a confusing image to many people. I admit I’ve not always responded to remarks about my condition with a polite answer. And these days I often full out ignore the people who blurt out inconsiderate comments or questions. While I’ve encountered plenty of idiots along the way, I’ve learned to use the questions as an opportunity to educate. I just want to be understood.

Using Mobility Aids for Multiple Sclerosis: How I started using a cane

Some people with Multiple Sclerosis need to use assistive devices due to difficulty walking or balance problems. I am one of those people. And I wish I could say that when I started having trouble walking, I promptly went out and purchased the appropriate assistive devices and off I went. This of course was not the case. Today I use multiple mobility aids to keep moving, but it has been an emotional journey to get to where I am now.

I started using a cane regularly when I moved to another state. That’s what it took to gather the courage to use a cane at 29 years old. I had first purchased a travel cane when I was 28. It wasn’t too hard to use it around friends although I was entirely still self-conscious. When I went on a vacation, I happily used it to get about by myself. I tried it out at work one day after I injured my ankle when I had a fall. Everyone asked me what happened. Many people at my job at the time didn’t know I had MS, so I happily blamed it on the ankle. I decided I wasn’t ready to make the cane a part of daily life. My ankle would heal, the MS would remain, and I couldn’t bring myself to explain the cane any further.

With my move to another state, it was like I started a new life. I wasn’t subjected to questions about why I one day showed up to work using a cane. In this new place, I had always used it. Sure, people wondered but they didn’t ask. They didn’t know me well enough. Wait, that wasn’t it. I’ve encountered plenty of strangers who have had no reservations about blurting out whatever popped into their heads. “You’re too young to use a cane!” a flight attendant once proclaimed as I boarded a plane. She was right. I am. As most of the world has shown me, it can be very difficult for people to comprehend a young, healthy looking person as having a physical disability.

Perhaps why no one asked had something to do with my confidence with my new appendage. I felt steady and safer than I had for too long without it. I felt independent and unafraid. Eventually the people in my new home asked me why I used the cane. Depending on their approach, I gave them the full explanation of my disability. Some others, I admit to offering less commendable responses.

I now have three canes; two for daily use, although I favor one over the other, and a folding one for travel. Sometimes I think I want a fourth cane. I now eye them in stores or in the hands of others. I evaluate their qualities and consider them as I do a pair of shoes. It took a new start in a different place for me to finally be able to own up to the fact that I needed to use a cane on a daily basis. Now I think I was silly to wait so long, but I’m a different woman now. I’m more comfortable with myself and my MS. Still, I wish that I would have accepted it sooner. It might have prevented a few falls along the way.