Adrift sitting in a small boat in the middle of a calm ocean, I languidly lean over the side of the boat and place one of my hands in the water. I see something swim by larger than a breadbox and I rapidly draw my hand back. What was I thinking if I was thinking at all? My hand and fingers could look like tasty bait for a hungry fish.
This scenario, of course, is all in my mind. It’s my way of taking myself outdoors. Reading and writing were my way of escaping the traumatic daily life of my young days in Chicago and I’m drawn to it once again. There was music as well.
I speak of escape because as a shut-in, I have no other avenue of getting out of the house unless someone takes me. Multiple Sclerosis is an anchor in many ways keeping me going around in circles and seldom allowing me to go in a straight line to places unknown for fun and adventure.
Picture yourself in the middle of the ocean again, with the sun shining down upon you, the backdrop of the city just beyond the horizon. At first, you love being on that boat gently rocking and listening to the gentle slap of waves against each other or on the side of the boat. When it’s time to go, you find that there is a heavy anchor that has kept you in place. You didn’t notice it because the movement of the boat and the water gave the illusion that you were moving, as indeed you were but you were not travelling.
You notice storm clouds rapidly approaching you and the wind turns from a warm caressing touch to a cool blowing slap as your hair dances in many directions each tangle having no supervision as to which way to head. It gets darker and rain starts pouring down. You huddle in the boat trying to make yourself as small a target as possible when you see lightning strikes across the sky that pushed the sun out of the way behind the dark clouds.
You hang on to the sides of the boat as it bobs up and down careening wildly almost dumping you over every few seconds. If it weren’t for the fear of falling overboard, it might have been fun. What is the point of this story?
For several weeks I have been on that boat in a storm. Life is difficult enough for people without the anchor of Multiple Sclerosis weighing them down, but when you have MS, sometimes what seems like a warm and sunny day out actually is a blip in time that precedes the storm that is about to hit.
In the past three years, I’ve had about five or six major surgeries. Two of them have been this year. These surgeries have nothing to do with MS but they have a major impact on what MS does to you as a direct consequence of physical stressors in your life.
You go about your life doing the best that you can, just like everyone else despite having a disease and then out of the clear blue, a storm hits. You can try running for cover but that only keeps you from getting wet. It doesn’t stop the storm. You have to wait for the storm to stop. The storm is not waiting for you to stop hiding.
All these things that happen to all of us, whether we are prepared for it or not, have merit in the lessons they teach us. They don’t necessarily teach us how to be better prepared for the next storm because you never know under what circumstance the sunny day turns into menacing one.
I believe that the most valuable lesson I take away from weeks like I’ve just experienced is that there is no point in panicking. There is no point in throwing a pity party that no one will attend, or if someone does show up they won’t hang around for long. There is also no point in longing for the hour before when you were languidly basking in the sun just as there isn’t any point in trying to look ahead to figure out when the storm will end. I mean who can figure that out precisely?
You and I both know that there will be good days and bad days. There will be days when you feel like a prisoner in your own home and days when you’re so happy to be out that if you could hop and skip like the little girl you once were, you would. There will be days when you’re feeling strong and days when you’re weak as a kitten. There will be days when you feel like you’re moving ahead and building a life for yourself despite all the blips in your life and days when you feel like you’re just going around in circles.
Right now I’m fighting a heaviness inside of me. It’s a difficult battle that hits me unexpectedly at different points in my day. I recognize it for what it is and it’s called depression. Thankfully, I have been on medication for this battle for many years. I’m not ashamed to admit that I have it. It’s common to all people with long-term illnesses. I just chalk it up to yet another symptom to contend with.
In addition, I’ve had another surgery to fix a surgery from my recent past. I walked around with a bag hanging out of my stomach for two weeks which was removed. Then I experienced pain in my abdomen and could not figure it out. I struggled with this pain for two weeks before I finally saw my surgeon. He figured out that I had fluid built up and sent me directly from his office down to get scheduled for a procedure where a bag was placed again to drain all the fluid out of me again. A short office visit to remove staples turned into an all day affair of yet another surgical procedure.
MY TAKE ON THIS:
When you're having an ideal day, week, month keep in mind that the
unexpected storm is just around the next corner.
No you don't live your life in fear of it, just aware of it. You
don't fear it because when you're in a storm, you know that
eventually it will die down and the sun will come out again.
In regards to being housebound? There is very little that can be done
about it. There are always cabs, and other services available but if you're
anything like me, I personally don't like to travel with a crowd of people
where I am dependent on them getting to the bus on time or where I have to
get to the bus on time for them. I like independence.
If you want to you can, if you don't want to, you won't. Solve your
problems, I mean. It's a matter of attitude and how you want to live your
I'm determined to live mine looking forward to the sun that will come out
after the storm.