That’s quite the title. But, that’s it. We’re on a road trip with my constant companion, MS.
For a year and a half I have known that I am one of the over 2 million people world-wide diagnosed with Multiple Sclerosis. In America, I’m counted with nearly 450,000 people living with MS. Among my friends, I am one of three.
As an illness, Multiple Sclerosis can be disabling of both the mind and the body. As a person, it affects every one in a different way, in different degrees. As for me you can’t see it, you won’t know when I’m affected and half the time neither can I. And they don’t know how to fix it.
I went to the eye doctor for seriously blurred vision and came out from the Neurologist’s office months later with a life-long potentially disabling disease. I was diagnosed in November ’13 and it took almost a year to find the right Neuro and begin medication. I took my first shot in my living room with the medication nurse-specialist holding my hand and Nick supporting via video chat from Paris. From the get-go, this has not been a smooth ride. I take that medication 3 times a week and it has to stay cool and dark, like a potato.
Stress is a huge trigger for my symptoms. Which is pretty typical across the board for people with MS. Its humorous to me how much stress you end up going through in order to properly diagnose and treat the disease, but that’s something else to chat about. Hoping that preparation would be the key, I made a ton of phone calls to make sure it was ok for me to go and to receive my medication while on the road, I had a check in with my Neurologist and got my blood tests done the week before we left and I had a months worth of medication in our camper fridge. Good to go.
Deciding to go out on a trip of this length made me feel like I was brave. Like I was making a statement to me and to anyone else that I wasn’t going to let MS take over or become the thing that I was known by. I had read articles about how, or if, you should let people know about your new life that is now marked by disease. I thought I was the brave one that was open to talking about it and ready to encourage you if it made you uncomfortable. I thought it wouldn’t change me and that I was strong. But I didn’t really talk about it, I didn’t continue the conversation after the first few months. I didn’t even know how to think about it myself much less include someone else in. As symptoms continued to show up and the medication left rashes and aches in its path, I shut down a little here and more there. I didn’t want to admit that I was becoming overwhelmed. The honest truth is that part of my decision to go on the road was selfish and another part of it was hiding and yet another part of it was hope and fear and faith and trust and a million other things.
Week one of our road trip, I received a call from my Neurologists office letting me know that they were concerned about the strength of the prescription and how my body was reacting to it. So week one, I had to stay within cell service which wasn’t the plan, find somewhere to ship a lower dosage and try not to stress about it. Good news: if you aren’t planning on staying at a hotel the week of your shipment, you can send it to a UPS store and they will hold it for you for just $5. Getting my medication has proven to be difficult and will continue to be so.
I knew that I wanted to do this trip, despite the difficulties. And I knew that things like needing a new dosage or getting blood tests could be a possibility, but I had hoped not. There is no way to plan for everything, but I can chose how I face it. When given the opportunity, I often shut down and allow myself to become small. I don’t always face the situation head on, I often wait until I must absolutely deal with it. When I needed to have a followup blood test done a few weeks ago, I waited until the last possible second to make the plans, which forced us several hours off route and caused a bucket load of unneeded stress for both of us. I was not brave. I was not responsible. I was not even willing to admit that I have MS, much less deal with it. I was hoping, as usual, that everything would work itself out rather than having to face the difficulty. And, as usual, the difficulty was just there growing, waiting for me to get around to it.
I want to be brave. I really, really do. And so I take a few chances, I tag along and even suggest a few of my own ideas. But in my deepest place, the tug-of-war between bravery and fear is played and the outcome of the war for each moment is never certain. Will I be brave today? Will I be scared?
It takes practice; bravery. To pull yourself up to your full height, force hands onto hips and square your shoulders. You don't have to laugh in the face of danger, at this point you just have to look at it. Whatever it is that is causing that response of fear is dangerous, and we need to look at it, full in the face, and do whatever it is we can do to overcome it. That is brave.
There is so much for us to learn in the hard things, but we have to be an active participant in them. I am going to practice my bravery, because I am not brave yet. At times I sound like I am and I’m quite convincing, even to myself, that I am facing fears and accepting life as a person with MS. But often, I am in the corner of my mind getting lost in the thoughts of a fearful person rather than looking at them and finding the truths behind the fear.
I can’t plan for everything. But there are a few things that I can do to make this trip successful:
I will learn to be brave.
I will take responsibility for my disease.
I will enjoy the outcome.