My Personal Road Map – A Letter to My Sister

Dear Sister,

Imagine a road trip from South Florida to New York. If I were to take I-95 and drive straight through with another driver to help with the driving, I could be there in 24 hours. I’ve done this drive several times and I know this from personal experience.

Now having transverse myelitis, I can still make the drive to New York, but instead of taking only 24 hours, it will now could take me 8 –10 weeks, depending on how I physically feel. If I sit in one position too long, I get very, very sore, so I need to stop every 30 minutes, and get out and stretch my legs. Because of the damage in my spinal cord causing mixed pain signals from my legs, I can barely feel the gas and brake pedals so I drive a lot slower and am overly cautious. I can only drive 3 – 4 hours a day, because of the fatigue.  By the time I’ve stopped at a motel and prepared myself for bed, I feel like I’ve just driven 500 miles without stopping. By 3 PM I am totally exhausted and begin looking for a motel, but every one I pass blinks, “No Vacancies”.  Then by pure accident from the corner of my eye, down a lonely side road, I see a small “roach” motel in a tiny town that has a population of 50 people. I am very grateful for this roach motel! It doesn’t matter that the carpeting is dirty as I can’t feel my feet anyway.  But just in case, I’ll give them a good scrubbing before I climb into bed. All I care about is taking care of my personal needs and going to sleep. I also wake up every two hours to catheterize myself because I HATE BEING WET. While on the road, I must stop a lot to use the rest room.  Even with grown up pull ups, pads and being able to self-catheterize, I still need to stop every hour. Once I stop, everything I do is done in very “S——-L——-O——-W” motion. For the record, everything I do since I came down with transverse myelitis is done in very “S——-L——-O——-W” motion.

I also no longer am able to drive on I-95. The entire trip from South Florida to New York must be driven on back roads and I can only drive between the hours of 11 AM and 3 PM. Because of the extreme fatigue, there will be times I need to pull over into a rest area and take a quick cat nap so I can continue on my drive. If it’s raining, or bad weather is expected, I will remain at the motel because I can’t take a chance slipping and falling while walking to or getting out of the car. I also can only make the drive during the fall season, because I can’t drive on snow. Technically I can drive on snow, but if I slip and fall on the snow in the cold, I might not be able to get back up on my own and freezing to death is not part of my game plan. I must stop to eat lunch and pray that it’s not too long a walk from the handicapped parking spot to the restaurant. I will eventually get to New York; I just can’t do it the way I used to.

I’m still the same person that you have always loved, I just have to do things differently, and don’t worry, transverse myelitis is NOT contagious. Don’t treat me any differently than before, and if I need your help, I’ll ask. I’m not a china doll and I don’t break when I fall. I do stumble, I do fall, but not as much if I walk and do everything a lot slower. Oh and by the way, since I left in the fall to visit with you, you’re now more or less stuck with me until spring after the snow thaws. Thank God you’re my sister, no one else would understand.

With Love,
Carolee