Author: elsims

I am limited, but there is still a lot of things I can do. I can totally take care of myself. I may struggle with carrying heavy things and walking long distances. But I can do a bunch of other things, like feed myself, bathe myself and wipe my own ass. I don’t see myself as handicap even though I have a placard for my car 😄. It comes in handy after walking through the grocery store. But I am not fully able bodied. So when there are others like me, I can understand the struggle. I can empathize. I can nod my head and say, “I know right.” I read an article the other day that put me in my place.

This article was about a gentleman, Steve Way, who was born with muscular dystrophy. He cannot do anything for himself. He is totally dependent on others for his every need. He needs 24 hour assistance. Now technically we are both considered to be handicapped. We both have placards. But we are so different. There is so many levels to this shit. And his story made me realize I am not doing enough. 

Steve Way had to move out of his parent’s home due to someone in the house contracting Covid-19 and he is in the vulnerable population. Now he lives with his girlfriend and she works because they have to keep a roof over their heads. The thing is he no longer has someone there 24 hours to assist him. He asked Medicaid can he get additional nursing hours to cover the time when his girlfriend is at work. Do you know they denied him? They said he is not disabled enough. Huh?!?! I’m confused as hell. Remember I said he can’t do anything for himself. So how much more disabled does he need to be?

I have said this before that I am MS prejudice because I want to keep my rose tinted glasses on. I don’t want to see people who are worse off than me. It is for my protection. I don’t want my mind to start thinking about the what ifs. To then go on to dwell on them. I know how my mind works. It can get ugly up in there. But how fucking selfish have I been. Like seriously. Uhhh…Ebony! 

Yes, I may not be there yet. I may never get there. Who knows? But would I want an ally in my fight, hell yeah! I would want someone that can advocate with me and for me if I am unable to do it for myself. Someone who will not just stand beside me, but prop me up when I am weakened in my fight. I know people think that the world has come so far where limited and disabled people are concerned. It has gotten better since the 80s. But for them to deny Steve Way for not being disabled enough, means there is so much more work to do. It means that people are truly not aware.

I think that everyone would benefit from knowing someone with a physical or mental disability. It shines a different light on life. On how the world looks. To see it through someone else’s eyes. I see the world differently based on my limitations. Then to see the world based on Steve’s limitations added a whole different perspective. Now I want to go beat people up for him 😄. 

I need to start finding ways that I can assist in this fight. What committees do I need to be on? What foundations do I need to volunteer at? What can I do to be an ally? Ask yourself the same questions. How can you be an ally? How would you want someone to show up for you? Let’s do this! Let’s help others to be well and whole as we continue to be well and whole. Much love 🧡💚

Here is the link to the article that featured Steve Way.

https://www.gq.com/story/steve-way-dating-while-disabled-modern-lovers

Multiple Sclerosis is like a fingerprint, each person’s experience with it is unique. Some people need help walking, others may be able to hide their MS symptoms. I fall into the latter category most of the time – except during the summer. Heat can temporarily worsen MS symptoms, which means my legs get heavy and I move much slower in warmer temps. 

One hot day I was in a parking lot and slowly walked to my car. A car pulled up before I could get across the aisle. To the driver I appeared normal, but what they couldn’t see was that I was struggling to lift my legs and moving as quick as I possibly could. Nonetheless, they were visibly upset that they had to wait for me to cross. When I was jusssst far enough along, they sped around me and yelled ‘let’s goooo’. 

In that moment I was reminded of two things – 

1. I have MS and sometimes I move slower and that is okay. 
2. The importance of being kind to each other. I could have gotten mad, but what if the driver was rushing off to somewhere important? I don’t know their situation just like they don’t know mine. Which, is all the more reason to meet each other with kindness, compassion and empathy. 

You never know what someone else is going through, so before you judge or assume the worst, try being kind and understanding. It has the power to change someone’s day (or life) for the better, and who doesn’t need a little more of that? Especially right now.

Hi! My name is Sam and I am so grateful to Ebony for the opportunity to share my journey with Multiple Sclerosis for MS Awareness month. Thank you so much!! 

A little bit about me before I jump into my MS story. I grew up near Cleveland, OH, but moved to NC 13 years ago after graduating college and never looked back! Currently, I live in Hillsborough, NC on 10 acres and am (slowly) building a sustainable homestead with my husband and two feisty felines. I love gardening and being outside. If I am not playing in the dirt, I am managing a small cycling, strength training and yoga studio in Durham called Intent FitHouse. Strength training and maintaining a healthy, balanced lifestyle are huge parts of my life and I truly feel that those two things help keep me sane, especially over the last year. 🙂 

I am so excited to be able to write about MS and lessons I have learned over the years. With that said, on to my diagnosis story…

In 2005 I was a sophomore at The Ohio State University. It was my first year living alone and I had spent most of Fall Quarter studying and hanging out with friends. Life was good.

Then, out of nowhere, I woke up one morning seeing double, my face was numb on the left side, and my legs were weak and uncoordinated. I had no hand coordination in my dominant (right) hand.  My friend came over to take me to the ER. 

Over the next 24 hours, I had countless tests done. My parents arrived in time to hear the doctor’s diagnosis – Multiple Sclerosis. 

I had no idea what MS was. My parents didn’t believe the doctor and wanted to get home immediately. The doctor advised staying at the hospital. I had no energy to go back and forth with my parents, so I did what they wanted and signed out against medical advice. 

Once home, we made an appointment with a local neurologist. They did more tests, including a spinal tap. At the appointment to hear test results, the neurologist confirmed that it was Multiple Sclerosis. I looked over to my mom. She had burst into tears. My dad was trying to console her. They both were looking at me like my life was over. I was consumed by their reactions and suppressed my own.

In case you’re like me at the time and don’t know what MS is, it’s an autoimmune disease where your immune system is triggered and incorrectly attacks your brain and spinal cord. The attack causes inflammation which turns the insulated and healthy nerves into fried wires that can’t transmit info. For example, I’ve had inflammation in my optic nerve, which prevented the nerve from functioning properly and affected my eyesight. Inflammation can be treated with infusions of high doses of steroids, but there is no guarantee that normal functioning will fully return. It is unknown what parts of the brain and spinal cord the immune system will attack, so literally anything could be affected by MS. I have Relapsing Remitting MS, which means there are periods of remission and I can function with only my “normal” MS symptoms. Then there are periods of relapses, which is when the immune system is attacking your nervous system and causing damage to the nerves. There is no cure, but the goal of treatment is to minimize the amount of relapses in order to preserve one’s ability to function. 

After being diagnosed, I continued to ignore my emotions surrounding MS for another decade. During that time, every person I told had a different reaction to my diagnosis. While the reactions differed, one thing remained constant – I stayed preoccupied with how other people thought I should feel. I suppressed my own feelings on MS and I was confused and depressed because of it. I couldn’t continue to live this way.

About 5 years ago, MS was starting to affect my life more and I had to sort through the grief, fear and shame that came along with having a chronic disease. Once I did, everything felt aligned. After all those years of being distracted with other people’s emotions, I finally came to terms with the diagnosis and was not ashamed of MS anymore. I had a newfound trust and confidence in myself and my journey with this disease. It was only once I began listening to myself, that I was able to thrive despite the disease. 

Now, whenever I think about my MS diagnosis, I am reminded that it is important to always trust yourself. Whether it is a life altering situation like being diagnosed with a chronic disease or something small like deciding what to eat so you feel your best, YOU KNOW. You know how you feel. You know what is true to you. You can tell when something isn’t right. You already know, all you need to do is listen.