OK, I have a homework assignment for everyone. Now, now no groaning! This article can apply to everyone, whether you have multiple sclerosis, like I do, or you have some other life challenge or just because you find me to be incredibly witty and fascinating (ha!). I’m recovering from an MS flare (sounds so much more fun then “relapse” right? I’m flaring, how festive!) so it’s safe to say I had some bad days. During this particular flare it was more apparent then ever how stark a contrast your days can be with MS. One day I was out having a blast hiking with my friends, and by the end of that week I was using a cane and wheelchair to get around. But in a way that’s life for everyone, right? Good day, bad day, good day, repeat.
So the next time you have one of those good or great days I want you to take a few moments and write your future self a letter that you can read on a bad day. I sat down and wrote myself one and my fiancé, Michael, is writing one to himself because he is finishing up medical school and will soon be doing his residency, a particularly grueling undertaking. He knows he will have some moments where it may help to remind himself why he is putting himself through 80+ hour weeks and going days without sleep. To get you inspired I’m going to share mine with you. You may not get some of the inside jokes I have with myself, but the point should still get across!
A letter to myself on a bad day:
Today was a good day, great even. It wouldn’t seem extraordinary in the eyes of others. You woke up early without an alarm and without feeling like you had a hangover. You ran errands effortlessly, you went to the gym. You laughed… a lot. You laughed with good friends, family and obviously Michael. You laughed at YouTube videos and things on TV. You cooked a big, delicious dinner — goodness, you are a good cook! It was an extraordinarily ordinary day.
Bike rides, hikes, long meandering trips through Costco or Target — I know that these everyday things are what you fear losing the most. You won’t. You are not defeated, you are being tested, and if you stick with it you will have a good day again soon. Here’s the best kept MS secret: those days, the kind of days you are having right now as we speak, are the days that elevate the kind of day I’m having from average to great. You were so happy today. Trust me when I say you will be happy like that again soon if you stick with it. After all, I am the expert on how you feel. Plus, if absolutely necessary, your friends have promised to equip you with a flashy and totally awesome cane/walker/wheelchair, and you know that they will totally deliver on that promise!
I know you are worried that this is the relapse you won’t be able to recover from — that’s valid. The only advice I have is that you have to try to relax and see what happens. Trust in the medicine and rest. Then, when you feel like it’s time, start building yourself back up brick by brick. You know the routine. The cold hard truth is that this is not the first time, or the last time that you will be required to go to battle. But this is non-negotiable, and you have to keep going. This is the hand you have been dealt, and you can’t control that, but you can control how you handle the tough times — and you have done a pretty spectacular job so far. It is going to take a whole lot more to knock you out completely!
Fortunately for you, nobody knows you like I do (duh), and there are a few things I know will work to cheer you up on even the worst of days. So go ahead and try them right now, I guarantee you’ll feel better. 1) Look at pictures and YouTube videos of cute pigs (I love pigs, it’s just a thing I have). Go ahead, take a second and do a google search — I’ll be here when you are done. OK, are you back? Great! 2) A good talk with a great friend, you know who to call. 3) A good TV marathon on the couch. 4) Plan a little surprise for Michael, you know his laugh and smile could pick you up on the worst of days, and he deserves it for always being so helpful when you aren’t feeling well. I also found this little quote from E.B. White that you may find particularly inspiring right now, though I did pick and choose the lines to make it fit our situation a little bit better (it’s our letter, we can do what we want):
Sailors have an expression about the weather: they say, the weather is a great bluffer… things can look dark, then a break shows in the clouds, and all is changed, sometimes rather suddenly. Hang on to your hat. Hang on to your hope. And wind the clock, for tomorrow is another day.
And never forget, you are not in this alone. You have an army at your back. Remember that there is always something good to be found in every bad situation. Do what you have always done and use this bad experience to connect with others, to teach, to raise awareness. There is power in weakness. All great people have to overcome obstacles before they achieve their success and although you may never achieve greatness or success in the common sense of the word, you too must withstand your own trials. Our success may not be the kind that comes with huge houses and yachts, but you know that is not the only form that success takes. When you get through this you will officially be a success in my eyes, so congratulations in advance!
But most of all, I love you. You will be OK again. Maybe not tomorrow, or next week or even next month, but you will always find a way to make your way back. And if the day comes where you cannot, then I know you will never stop finding a reason to laugh. Like that first time you were admitted to the hospital and you made that dance video with the singing/dancing pig or the time when you and your coworkers at the hospital hosted a late night ice cream social from your hospital bed. The best was that relapse that made you miss your college homecoming, and your friends brought it to you — that was classic. And I bet nobody laughed harder then you and Michael did when you were picking out which ridiculous cane to use when you were having trouble walking. I don’t care what the circumstances were, those are some of your best memories because they all brought out the best in the people you love the most and in yourself.
Now, finally, I know you are having a bad day, maybe even a string of them, but I want you to think of at least three good things about today. Good can be relative! Did the nurse get your IV in one shot? Did you get that MRI tech that always manages to keep you laughing instead of having a panic attack? Rock on! It’s the little things that make the biggest difference. Keep your positivity even when you really don’t want to, that is a direct order from yourself.
Yours truly (literally!),
Steph
This post was modified from its original version, which appears on Just Keep S’Myelin.
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Stephanie Butler is a Neurosurgical ICU nurse who was diagnosed with multiple sclerosis at the age of 25. Soon after she saw an opportunity to have a positive impact on the lives of others by becoming a Multiple Sclerosis Certified Nurse, and has been working with other MS patients ever sense. Her blog, www.justkeepsmyelin.com, offers a unique perspective on multiple sclerosis from both a healthcare provider’s point of view, and through the eyes of person living with the disease every day. Her mission is to bring compassion, humor, and a deeper understanding of MS to anyone who reads it.
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