Sometimes it’s hard to understand what someone is going through, even if we try to put ourselves in their shoes. I remember when I worked in a doctors office years ago. We had an oncologist in our office, and sometimes I was given an opportunity to work with those patients on days he needed some extra help. I looked so forward to seeing some of those courageous patients walk through our door. And if for some reason one of them didn’t show up, I didn’t dare let myself wonder about the reason why. These people became my heroes, and taught me more about living than I could ever learn myself in an entire lifetime. Most were very upbeat and gracious. They weren’t like our regular patients that complained if we were running 4 minutes behind. They told stories and would often put their hand on my arm. Touch was something that was extremely important to them. Sometimes, it was easy to tell when they weren’t feeling well. They were quiet and appeared painfully tired.
Sometimes, people suffer in this same manner, but on the outside, there is no indication that anything is wrong. They look normal, they act normal, and you would never guess in a million years that they suffer from a debilitating disease. Unlike cancer that manifests many outward physical signs, Multiple Sclerosis is a disease that goes unnoticed by those that aren’t afflicted. These people suffer quietly and often don’t complain about the battle they fight each and every day they must will themselves out of bed. I spent a great deal of time reading people’s stories of what’s its like to live with this silent, yet difficult disease. The best explanation I found was by a blogger several years ago that described some of the symptoms in a way you and I could understand. I’d like to share some of those with you:
What You Can do To Understand Painful Heavy Legs… Apply tightly 20 lb ankle weights and 15 lb thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down – how ya’ feeling now?
Painful Feet… Put equal or unequal amounts of small pebbles in each shoe then take a walk.
Loss of Feeling in Hands and/or Arms… Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful, stab yourself in the arm.
Loss of Feeling in Feet and/or Legs… Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk.
Tingling… Stick your finger in an electrical socket – preferably wet
Trouble Lifting Arms… Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.
Spasticity… Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves
Balance and Walking Problems… Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now try and walk.
Bizarre and Inexplicable Sensations… Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day.
Pins and Needles… Stab yourself repeatedly with needles all over your body or better yet….Get a large tattoo.
Dizziness (Vertigo)… Get on a gently rocking boat all day and all night and take several walks around the deck.
Fatigue… Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel at the end of the day
Vision Problems (Optic Neuritis)… Smear vaseline on glasses and then wear them to read the newspaper.
Memory Issues… Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn’t get them. When you come back from shopping again they take the list and erase three things and ask why you bought those in the first place
Depression… Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one of the animals and when you come back the next day you come in while they are putting that animal to sleep
You want to know the saddest part about this story? My sister suffers from MS and yet Ive never asked her what MS feels like. Maybe, because deep down, I really didn’t want to know. It was easier for me to look at her on the outside and bury the fact that she battled this cruel, debilitating monster on the inside each and every day. I would have to look at the selfishness of myself when I complain of a headache and sore muscles and realize that her body feels like mine after a 2 hour workout merely because she gets out of bed. I would have to stare the guilt I feel inside right in the face and not ask god, why her and not me? But truth is, I couldn’t go there in my mind, at least not until today. But hopefully, after reading this, maybe everyone, especially the people that are closest to her will lend an extra hand, not because we have to, but because she needs us to. It could be the difference in whether she can sit up at the dinner table with her family at the end of the day. Imagine having to choose where to put that tiny bit of energy your body will allow you to use that no amount of sleep or rest could replenish. Do you make the beds, or clean the house knowing that may end you up in bed the next 3 days? Do you lie there wishing someone would have given a bit more help because God knows you would never ask. You don’t neglect to do things because you don’t want to, your mind is screaming at you to get all these things done. But your body, says no way, it’s just not gonna happen, at least not today. So how do you deal with the depression in your head. Not the depression that is caused by your disease, but by the depression inflicted by those people around you that continue to look the other way? I am so sorry dear sister. If I could give you my healthy, strong mind and body, believe me I would, because I know you need them much more than I do. That is not my choice though you see, that is Gods. So, let’s come back to the question that haunts my mind deep in the night….why you? I don’t have that answer, I don’t know His plan, but I do hope my part involves telling your story in a way that helps people step inside of your difficult and discouraging world. You are a hero to me. The fact that you push yourself selflessly for others at your own expense, and NEVER ever remind us you have a debilitating disease while fighting your mind and body every day just to get out of bed shows how remarkable you really are. Maybe that is why God chose you, because although your road may be difficult, you have the will to continue to walk it, and by the way, you do so with grace.
Next time you wake up, and there’s a whole list of things to do on your plate, remember my sister, and all those others that struggle with MS. Be grateful for your healthy mind and body and that you have the strength and energy to get through your day absent of fighting a difficult disease. Some are much less fortunate, and imagine what we sound like to them, going on and on about how difficult our day is while there are the sick heroes around us that never complain.
MS Awareness Week begins March 11th. If you know someone who suffers from this terrible disease, please show them your support. There are so many things you can do to make their lives a little easier. A random act of kindness can go a very long way. Don’t turn away because it’s too hard to look. Look long and hard into the eyes of that person and share some of their pain. If you live with someone that has MS, take care of yourself and your own responsibilities. They have enough trouble trying, sometimes unsuccessfully, to carry out tasks and get through their own day. Offer them that type of peace so they can focus on putting their energy into what they need to and not into what you could have done for yourself. Remember, these courageous people don’t want your pity, but they will always welcome your understanding and support. Hug someone with MS today because after all, a hug always makes someone’s day a whole lot better.