MS Anniversary

I was diagnosed with Multiple Sclerosis 15 years ago as of February. The anniversary of my diagnosis came and went without my notice. It was so insignificant that I’m only now writing about it in May. It wasn’t until I was reflecting on my life overall the other day that I did the math.

When I was first diagnosed with MS, I kept track of the extact day I received the news. Now I just remember it was in February of 1998. I had just graduated from high school the summer before. I had my whole life ahead of me, and then came my MS. I spent the next couple years quite a mess dealing with my diagnosis in the form of clinical depression and irratic behavior. It wasn’t much fun. But then one day, I got on with my life.

I began going to college full time at 21. I graduated with an associate’s degree and transferred to a four year school. After a couple more years I had a bachelor’s degree and a career. Had someone told me back in 1998 that I would have these things in my future I would have thought they were lying. A few years later I got married and started working on my master’s degree. When my husband and I decided we wanted to move, I started to search for jobs in other states. After some interviews I found one and off we went. We made one more big move a couple years ago and settled where we are now, in Las Vegas. Last year we bought a house.

Nothing has been easy in my life with MS. I’ve had to work really hard at everything. There are many things I can’t do anymore that I miss. I miss riding a bike and walking my dog. Did I want to be using a cane before 30? No. Am I happy to report that I drive a minivan to cart around my mobility scooter? Of course not. But at least my van is fully loaded.

Human beings are amazingly adaptive creatures. We find a way. I’m thankful I found the courage to get on with living. I spent too much time dwelling on my worst fears about this disease. Some of them have actually happened, but the whole point is that 15 years after my diagnosis; I have everything I ever wanted. I have a great family, good friends, I’m married to the man of my dreams, we live in our own beautiful house, and like our jobs. I can’t say that MS has robbed me. In spite of it all I can’t say that I’ve missed out on some big part of life because of it.

Despite the happiness in my life there are still times when I mourn what I’ve lost. I think that is normal. It would be unfair to deny that I don’t ever feel anguish from having this disease. There are moments when sadness overcomes me when I think about the things I once took for granted that I can’t do anymore. There are times when I think of the person I used to be and I want to hold her and I want to whisper; I miss you.

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)


Happy Thanksgiving

Thanksgiving is traditionally a time to be thankful for all the good things in life. There’s a lot I have to be thankful for including my husband, my loving family, and amazing friends. I’m thankful for my dog and two cats that give me unconditional love and lots of entertainment. I’m thankful that I have a job and a beautiful house. Despite the difficulties in my life caused by Multiple Sclerosis, I have so much to be thankful for.

I could say I wouldn’t change a thing, except for having MS. Although it’s hard to know who I’d be without it, and living with it for almost 14 years makes it hard to really remember who I was before it. While I’d be lying if I said I wouldn’t eliminate MS from my life if it was possible, I don’t dwell on my life before it, or feel cheated in any way because of it. By saying this I’m not downplaying the impact MS has on my daily life. The limits it imposes, the upset, and pain. But when I look at my life I see so many more beautiful things that outweigh the bad.

I tend to be a glass half full type of person. I choose to live this way. For me, MS can’t take away my delight in the great experience of life.

The Wheelchair and Me

Will I be in a wheelchair? That might be the ultimate question that someone who is diagnosed with Multiple Sclerosis wants answered. Gait problems are common in people with MS and as the disease progresses physical disability is possible.

When I was first diagnosed, I went through a phase of fear. I was certain that I’d end up in a wheelchair and couldn’t see any real future for myself. This bleak outlook contributed to the two years I spent battling depression after my diagnosis. After I started to move forward with my life, I refused the idea that I’d ever need to use a wheelchair. Then I started to have problems walking long distances.

A couple of people had suggested using a wheelchair when I declined social activities that involved walking longer distances. The thought was horrifying to me. I wasn’t using any type of assistive device at the time so the idea of hopping into a chair was inconceivable.

After I got married my mother-in-law gave me a transport wheelchair that she had used in her house after breaking her foot. At this point I was a bit more open to the idea, but not completely ready. Then one day my husband had planned a surprise. He wouldn’t tell me where we were going but said we would need to use the wheelchair. I was reluctant but curious, so we loaded up the fashionable red and black chair and headed out. We lived near Detroit, Michigan at the time and when we arrived downtown I saw the signs directing people to the dog show. Long a lover of dogs, I was thrilled with the surprise activity.

At the show my husband pushed me around in what we came to affectionately refer to as “hot wheels”. I didn’t have to worry about getting tired, or my legs just giving out. I took notice of other people in wheelchairs both young and old. I realized I didn’t care how I might appear to other people as I rolled by. It meant more to me that I could enjoy the event without worry. In fact, I was ecstatic when breeders plopped puppies into my lap who were therapy dogs in training.

After that day I welcomed using “hot wheels” when needed. We’ve done some cool things together including going to a baseball game, a vacation to Mexico, and to National Parks. I’ve also used it to participate in three National Multiple Sclerosis Society Walk MS events in two different cities.

“Hot Wheels” and me. Look close!

There have been times when I’ve dealt with insensitive comments from others while using a wheelchair. I’ve also encountered social situations where I’ve felt embarrassed and left out. I’ve also had my fair share of cries in that wheelchair, faced with the limitations imposed by the chair itself. Despite these things, I know that I’ve been able to experience more of life with it than I could without it.

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.

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.