Category: MS-Cellaneous

The initial relapse that spurred the diagnosis of Multiple Sclerosis took away my vision, coordination, strength, and ability to feel sensations in an instant, but it took 7 months to recover from. Even then, my baseline wasn’t the same as my 20 year old peers. For years I tried to keep up with them by ignoring my body despite the fact that it was screaming for me to chill.  I didn’t prioritize sleep, eat well, exercise or minimize stress. It became a problem – I was running myself into the ground. Then, came a night that shifted something in me. 

My then boyfriend (now husband) and I had moved to North Carolina so he could continue onto Pharmacy school. One evening, we were at a bar with his friends from school. It was only 11 pm, but I was completely fatigued. Again. Everyone else was full of energy and having fun, but as usual I was the odd person out longing to go home. 

I always *tried* to not be bothered by having to cut the night short. But, all of those times finally added up and a wave of emotion hit me once I got home. I was sad I was different. I was angry that MS was changing my physical capabilities. I was sick and tired of fighting my body. I couldn’t do it anymore. I ugly cried for a while. 

I decided I wanted to make a change and began to slowly figure out what to do. To start, I accepted what I could physically accomplish would always vary from others. And that is okay. 

Second, I chose to ask myself “How will this make my body feel?” before I made any decision on something that would impact me physically. To avoid getting overwhelmed, I started small and would ask that question before committing to any social activities. Those events always took the most out of me and I needed to find a balance that was sustainable. If the answer was ‘this will make me fatigued for 2 days after which will make me miserable and impact my ability to do other obligations’ (or some variation of that), I said no. I only had to say no a few times to learn that accepting my body and listening to what it could do was the answer to my problems. 

That was years ago, but the payoff was so great that I continued to listen to my body in other areas of my life. I ate to feel good in the long run, not just satisfied in the moment. I found what types of workouts left me feeling stronger vs. worn down. I figured out that I needed to sleep at least 8 hours every night. And the list goes on and on.

By observing how my body reacted to different things, accepting and listening to it, I was able to shift my life in such a positive way. It felt like a weight had been lifted. Instead of constantly being at war with my body, I was thriving physically and mentally. Now, I’m thankful that MS forced me to tune in with myself. 

That being said, chronic disease or not, everyone could benefit from putting themselves first and listening to their body a little more throughout the day. Start small, tune in to the times it feels like your body is fighting you and figure out what you could do to make it better. Life is way more enjoyable when you aren’t fighting your own body to get through it. 

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.