My Mobility Scooter

Multiple Sclerosis can cause mobility problems for some people. Unfortunately I am one of those people. I started having problems with my gait in 2004. My issues started off slow, but have progressed to the point where I can no longer walk long distances.

I started using a mobility scooter in 2011. I had been using a transport wheelchair in situations where a lot of walking was required (see The Wheelchair and Me). Although it allowed me to participate in activities I previously had to decline, I still felt limited. The transport wheelchair required a companion. I couldn’t go places by myself.

I had reached a breaking point. My limited mobility was impacting my quality of life. Something had to change. I headed to see my neurologist and obtained a prescription for a mobility scooter along with a referral to a medical supply company. After the company called to ask me a few questions about my condition, a rep arrived at my door with a scooter. It was compact and easy to navigate. I told him I’d take it and he said that was good because this scooter was mine.

I went to the library on my first trip out on my own with my scooter. Oddly, I didn’t have any anxiety about the excursion. I didn’t care how I looked gliding by on my new ride. Maybe it was the practice I’d had with my wheelchair. But I think what happened, why it was so easy to accept, was that it gave me back something I’d been living without: independence.

I’ve had to make some modifications to my home and my vehicle to accommodate my scooter. Although the particular scooter I use is designed for easy travel and can be disassembled into four parts, we had a lift installed in our minivan. I am not able to lift the separate parts on my own. Of course this was not cheap and my insurance wouldn’t cover modifications to our vehicle for accessibility. I purchased a used lift, which provided some significant savings. I was also able to get assistance from our van manufacturer. Most all vehicle companies provide assistance in the form of a rebate for accessibility modifications. Anyone interested in this assistance should check with their automaker to find out the eligibility criteria. Often cars must be new and there are time restrictions as to when the modifications must take place.

Loading the scooter into my van using the lift.

Loading the scooter into my van using the lift.

The other obstacle I had to address was how I would get the scooter in and out of the house. We have a single story home constructed at grade, so the main concern was doorway thresholds. I purchased two threshold ramps. One allows me to take my scooter in the backyard. The other allows me to go out into the attached garage. These ramps are inexpensive and easy to install. I purchased one at a medical supply store and the other online.

My scooter has changed everything for me. I can go anywhere on my own. With my scooter I can go shopping by myself, I don’t have to decline social activities that involve a lot of walking, and I even use it in the house when my legs just stop working. While I’d prefer to have the mobility that MS has taken from me, I don’t view using a scooter as a negative in my life. Missing out on activities and having limited independence was much worse. For me, the benefits of my scooter outweigh any hang-ups I ever had about using one.

Of course, there are downsides to using a scooter. I can’t always navigate everywhere I want with it, although I do pretty good in most situations. But the real bummer comes from the unwanted attention I receive from others. People are curious, I get it. I don’t mind a polite inquiry. Unfortunately, I encounter far too many people that say really stupid things. I’m still learning how to cope, but I don’t let it stop me. I’ve got places to go.

Using my scooter to explore Death Valley National Park.

Using my scooter to explore Death Valley National Park.

MS Awareness

March is designated the national month of MS awareness and education. As someone who lives with multiple sclerosis, it’s important to me to raise awareness of this disease. While I am able to adapt, to live well despite MS, it remains the biggest struggle in my life. I won’t pretend that a day goes by where I am not compromised physically or emotionally because of MS.

Raising awareness is important to secure funds for research. It’s important as people with MS continue to seek acceptance and understanding, and freedom from discrimination. Awareness is key to ensure we have access to the care we need, and can live without fear of being denied treatment because we can’t afford it. As someone living with MS, I feel it is my duty to raise awareness. I do so by sharing my story, by participating in fundraising efforts, and by giving my time and support to MS nonprofits.

Through these efforts I feel that I’m doing my part to work toward the ultimate goal of ending MS. But it also gives me a sense of community. I am able to exist among my peers. I can connect with others who can directly relate to me. And I feel comforted by these connections. I’m not alone, because we are all in this fight together.

Comments About My Disability Test My Tolerance

For some people multiple sclerosis is an invisible disease, but not for me. I can’t hide it, because I have physical disability. I use several mobility aids including a cane, a device for foot drop, and a mobility scooter. I’m fairly noticeable I suppose. And I get a lot of unwanted attention in the form of comments, stares, and pointing fingers to remind me all the time.

I know that human beings are visual creatures. We are obsessed with appearances. So when people see me they first see features like my hair (because I’ve got so much of it), my face, and my disability, before my other attributes. But what empowers complete strangers to comment on my disability escapes me. I’m really not shocked by it anymore. I expect it. Lately though, I’m losing my tolerance. I don’t think a week goes by when I’m not accosted by some idiot who thinks they are clever.

I attended a work seminar last week. I used my scooter since it took place in a large building surrounded by a large parking lot. Inside, the seminar was held in a big open room with rows of chairs. I parked my scooter at the end of a row and sat down in a chair. Some guy squeezed by my scooter and me, sat down, and asked, “How did you get that chair out of Wal-Mart?”

“Huh?” I replied uncertain if I had heard him right. And then he repeated himself. I then pointed to my scooter and asked him if that was what he was referring to.

“Yes,” he replied. “Not that funny I guess.” I told him I’d add that one to my list. And he responded, “I’m sure you hear a lot.”

So why then? Why does this man, a stranger, make this comment while in the back of his mind he knows it’s off-color? He knows I field far too many comments just like this one.

Notice how the use of a camel in this photo draws attention away from my cane.  Unfortunately, not a viable solution for every day.

Notice how the use of a camel in this photo draws attention away from my cane. Unfortunately, not a viable solution for every day.

A couple months ago I had a work meeting away from my office. Again, I was using my scooter. In attendance were some people I have worked with before, and some were new faces. After the meeting, I said goodbye to the other attendees and exchanged a couple business cards. Then after I said goodbye to a person I had never met before he said, “Nice scoot-scoot.”

“Yeah,” I mumbled, now uncomfortable feeling my disability had been trivialized.

I know this comment wasn’t meant to cause harm, but it did. While it perhaps was meant to be playful, it was demeaning. And this is what I deal with all the time. I have had experiences like this for nearly 10 years now. It started well before the scooter when I first began having gait issues and I was asked if I had a “hitch in my giddy up” or if my feet hurt because of the appearance of my stride. It continued when I started using a cane, when instead of the cane being a visual explanation, I was asked if I was “gimpy”.

If all the people who’ve said things to me over the years could just live in my skin for a bit. See just how thick it has to be to live my life. See what I put up with. See how it feels. I struggle to not let these experiences have a negative impact on my life. I try to find humor and laugh at the audacity of these people, but it gets old. Plain and simple. People have to think about what they are saying to me. They have to be accountable and think about what is coming out of their mouths. Most of the time I don’t respond to the things people say. But am I doing them, or myself, any justice by letting their words go unchallenged?

I hope for a day when these insensitive comments end. Based on my experiences, it can be difficult for me to believe it will ever stop. But I had an encounter that does give me some hope. It took place recently when a four-year old girl engaged me in conversation, examined my cane, and said, “I like your stick.” What a brilliant little girl.

Multiple Sclerosis and the Job Interview

Recently I went on a job interview and I thought it would be good to share my experience. For people with a disability such as Multiple Sclerosis, a job interview can be intimidating. For someone like me, who has visible physical disability, it can provoke feelings of anxiety and fear.

In the case of my most recent interview, I felt anxiety about how others would judge me based on my disability status. Despite all the accepting people in the world, I admit I always assume the worst. I’m working on changing this outlook, but it’s hard. Thankfully my experiences in life favor this change. My interview went really well and once the questions started, my only focus was on my professional experience and knowledge. This didn’t happen by chance though. I took the time to prepare for my interview. Being prepared kept me focused on my abilities, knowledge, and experience.

There are a few things I’ve found helpful when it comes to a job interview. Here they are:

Know your rights. Be informed as to what an interviewer can and cannot ask you about your condition. The National Multiple Sclerosis Society offers a great summary of illegal and legal interview questions.

Be prepared for your interview. Study commonly asked interview questions. Potential questions can be found through a simple Internet search. Practice your answers out loud. Learn about the organization. Check out their website and read up on what they do. Don’t forget to prepare a list of questions for your interviewers as well.

Although it’s difficult not to worry about how you’ll be perceived by others, preparing for the interview can help you focus on your abilities, not your disability. And in case you are wondering about the outcome of my interview; I got the job!

Things I’ve Done Since I was Diagnosed with Multiple Sclerosis

I started making a list of some things I’ve done since I was diagnosed with Multiple Sclerosis. When I showed the list to my husband and told him I wanted to post it on my blog he said, these are cool things but make sure it doesn’t seem like you are trying to brag. Then I was worried; of course that wasn’t my intent.

So I thought about why I was making the list. I realized that I made it because I’m proud of myself. After I was diagnosed with MS I spent two years struggling with depression while trying to come to terms with my situation. It was the most difficult time in my life. I’m so grateful that I made it out of that dark place.

The purpose of this list is two-fold. For me, because I can be my harshest critic. I sometimes feel like I should be able to do anything and it’s hard at times to cope with my limitations. This list shows me that I’ve done some awesome things despite living with MS. The second is for others. I want everyone with MS to know that they can live a happy and fulfilling life. I want others to stay out of the dark place and live with me in the light.

So here goes. Since I was diagnosed with MS I’ve…

Graduated from college three times
Lived on my own
Got a dog
Found several jobs
Received a promotion at work
Swam in the ocean
Got married
Traveled to other countries
Adopted two cats
Rode in a helicopter
Visited four national parks
Traveled alone for business and pleasure
Went camping
Moved to two different states
Bought a house
Saw a humpback whale in Mexico
Jumped off a boat into a lake
Watched the sun rise and set in the Grand Canyon
(This spot reserved for the future)

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Falling Down: When MS doesn’t keep you on your toes

So I fell the other day. Took a face plant right into a metal post on my way down. Somehow I managed to bang up my arms in the process. Thankfully I’m OK. Bruises will heal, but the emotional pain will linger.

I’ve fallen quite a few times since being diagnosed with Multiple Sclerosis, and I assume this recent spill won’t be my last either. I’ve fallen when no one was around to see. I’ve fallen in front of large crowds. I’ve taken face dives to the ground and received fat lips in return. There have also been times when I fell and nothing bad happened at all.

Every time I fall I feel inadequate. More than physical pain, I feel emotional anguish. I feel dumb, weak, and foolish. I’m ashamed of my inability to navigate through spaces with ease. Every step I take requires significant thought and calculation. And I hate it.

After all the falls it just never gets easier. Should it? Probably not. I wish I had words to comfort myself. I wish I could comfort other people like me. But sometimes MS just plain sucks. And that’s all there is to it.

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.