Let’s talk about having a rare disease and people that are train wrecks. Heck, even I have been a train wreck during this new life. So, everything I am typing does, and did, pertain to me.
When we sit on our front porch and watch a train go by, we first hear the warning signal. Be it a bell or a horn. The train is warning us it is coming and to stay off the tracks. Well, dang. With a rare disease, you cannot get off the track if you tried! So here is where we make decisions. Do we amalgamate with the coming train or do we suffer under it and lose the whole? We see it coming and we will have an instant of fear. Oh, yes, that fear is real and it may grow stronger or it may wane. But that fear never completely leaves us.
Then let’s go back to our front porch and see what happens next. We hear the signal then we hear a rumble, and might even feel the ground vibrate. We know there is imminent engines and cars to go by. We can count the engines and we can see the cars. Those cars might be tanks, open cars, or cars that are totally boxed in. We can see those cars, — but more than likely we will not know what each one holds. Maybe a tank might just have tar, but what about something toxic? With the open cars we can see the lumber, or the military vehicles. But the box cars are a mystery; even the cars carrying livestock. We can see it carries some poor animal to its doom, but we do not know which one it is.
Welcome to the world of rare disease! We know there are symptoms — but because the disease is rare, very few know how to help you with it. You also are having to do your own research to get an idea of what to expect. You find all these co-morbid issues that might become a symptom or even a second disease for you. Put each of those in a train car and give each one their own car. Did you label your car? Did you choose a box or a tank? Now add cars for the emotions you will go thru. Add cars for the different doctors you will see. Do not forget to paint your cars with graffiti pertaining to the doctor’s attitude. Let us not forget our family, or friends, and our employers. Give them cars. We have so many cars that our train now needs several more engines in the middle. Because following these will be cars and tanks with the items of grief. You will need some for the loss of your old life and you will need cars for the new normal. You will need cars for the emotions of trying to adjust to this new life. You have changes you need to make. Some cars will be for the salvaged scrap of your past life; some to carry in the raw materials of your new life. Then last will be a new set of cars that will hold your fears.
Yep, you will have a lot of cars to carry fears in. Are they in open cars, tanks, or box cars? Several fears may need some of each.
So now put yourself on that track and watch that train come at you. You know you either have to meld into the train, or you will be the wreck. Just picture yourself being superman/woman and putting your hand out to stop the impending train. Do you have the ability to stop it? but how? Do you fuse with it and take over the controls? Do you put your hand out and slam into the train — causing all the cars to buckle and spill out?
Picture that wreck. There are engines and cars and tanks crumpled together and everything is spilled. The toxic is mixing with the good; the beautiful is being destroyed. There are lots of noise with the wreck, but nothing makes sense. Now the engines are being destroyed and the fear is outrunning each car.
By trying to stop the symptoms and issues with a rare disease and not accepting it, we are wrecking our life. We let the fear take over the toxic and feed that toxic. We let the fear take over the beautiful things on our train and they burns in the rubble. Fear is where we become the train wreck. By not leaving the fear at a train station, to be disposed of, we carry it down the tracks. By not melding with the train, we lose control with our trying to stop the journey. If you are not in control of your train, then it will wreck. If you do not accept your diagnosis then you chance trying to jump off the tracks, but that will never happen. If you do not drop off some fear cars then you will always have them at the end of your train.
I found myself picking up more and more fear cars and tanks at the beginning of my diagnosis. When I finally educated myself on all that is known out there on Tarlov Cysts, I chose to drop some cars and tanks off. I found I was borrowing trouble and overloading my fear cars. Not that the idea of living with this disease was bad enough, but why should I be “looking” for more trouble? [This is common for each person with any disease, not just the rare!] Now with this covid mess on the TV every day, I have read that people with rare diseases are becoming depressed due to them picking up cars with more fear loaded on them. At first, I, myself, wandered if I would be on the list of doomed people. When I got that answer I just laughed and said to myself, “well, heck I have made it this far and a stupid man-made virus is not going to add to my problems.” I dropped those cars right off. I even dropped the cars carrying the news off too.
What I hope we can get from this post is that we have options in a rare disease journey. We can load our cars up with fear, or we can do research. We can load the cars up with negative people, or we can drop them. We can change our eating, or we can add cars of discomfort. We can skip having faith in our life, or we can grasp it and load up on comfort. We can load up on being pissed off all the time, or we can trade it for cars of humor. Which choice we choose determines if we become a train wreck, or meld and take control of that train.
May your train run smooth down the tracks and may each of your cars be beautifully painted.