Life doesn’t stop when you have a long term illness. The calendar pages keep turning, and life events keep on keepin’ on, even when you feel like maybe you can’t. I am a person who is comforted by plans. I love a well-thought out plan. I love looking forward to things that I have carefully planned. I like to be the planner, and I love to be in control. Having Lyme has turned that completely upside down. Now plans give me anxiety. It’s hard to make them, because I don’t know how I will feel on any given day. When plans are made, I never know what curve ball Lyme might throw that could jeopardize them. This makes me feel out of control, and I hate it.
Each year in mid-April, we like to take a trip. It is something we look forward to all winter, during my wife’s busiest and most stressful time of year at work. It’s a little mini getaway that shines like a beacon of light at the end of the long and often bleak New England winter. I wouldn’t dream of not planning our trip this year, Lyme or no. Last year we went to Brooklyn, NY, and before we were even back home, we knew we would do the same again this year. When it came time to make travel plans, I figured – Maybe I’ll feel better then, and We’ll figure it out.
Well, we are now home from this year’s trip, and I’m here to tell you that I don’t feel better, and we kind of didn’t figure it out.
We did have some fun. We had great meals for which our son was not only patient and pleasant, but happy to try new and unfamiliar foods. There was an early morning playground visit with bagels, sunshine, and squirrel watching. We had some laughs, took some great pictures, and it was nice to get out of town and visit a city we love. But mostly, it was really hard.
I knew the main issue with Lyme-ing in NYC would be all the walking. We have already avoided a lot of out outings at home because I can’t count on being able to walk for a long time. So I thought we would add wheels. I looked into renting a wheelchair, and discovered it didn’t cost much more to buy one online. I figured one day when I’m better, we can sell it cheap to someone who needs it, so why not? I knew using a wheelchair in NYC wouldn’t be easy, per se, but with a large museum on my son’s wishlist for the trip, I thought it could be helpful. And it was…kind of.
We tried to do too much subway riding with it than any wheelchair newbie should. Many of the stations aren’t wheelchair accessible, which we knew, but it was really a drag. It just added more strain to an already difficult day. Dealing with the chair, the kid, the subway, Manhattan – it was just too much. Not to mention, being someone who is used to taking the lead and making decisions, being on my butt and pushed around, with my wife behind me and up too high to hear me well, was really frustrating. Sidewalks are bumpy. When feeling Lyme-y and not up for walking – the motion of being wheeled around doesn’t feel much better. We made it through the day, but it was a struggle.
The next day, we had planned to stay in Brooklyn, which we knew would be easier, but the weather didn’t cooperate. I felt confident that there were enough places in the neighborhood to pop in and take a rest if I needed to, so we didn’t bring the chair, which lightened our load. But it was terribly windy and pouring rain. Places we wanted to go were closed. Our son was annoyed. We were wet and tired. I was carrying the guilt of feeling like I had messed up the whole trip, and it weighed too much. Add in some serious problems with our accommodations, and we ended up throwing in the towel and leaving a day early.
Anyone who knows anything about Lyme would tell you that a sightseeing trip in NYC is probably not the best vacation for a Lymie. I now know that optimism, wheels, and determination are not enough to change that.