That’s how a lot of people I’ve met refer to me. In fact, that’s how I strike up conversations at the medical facility’s sometimes. That usually get’s their attention, especially when I tell them I’ve been through 19 states and over 435 medical facility’s in 12 weeks. It has gotten easier to get to the right person faster now that I can toss around those statistics. I am on a mission! It’s actually scary how few know about ALD, but that is changing.
I don’t know where the time goes. I can’t believe it has been so long since my last post again. My journey is very eventful and it is hard to keep up with myself. I often don’t even know what day of the week it is until I check my itinerary. I’m not kidding.
I had a great time with my daughter, friends and family in Galesburg and Centralia. The birthday bash was a hoot even though it poured and drenched us all. The weather pretty much stayed like that throughout the week while I traveled around Wisconsin. I did not care for Milwaukee so much. Rough roads, lots of construction and lots of traffic. Madison on the other hand was quite nice.
MADISON, WISCONSIN
It kind of reminded me of Boulder, Colorado. Bike paths and outside malls and eateries everywhere. I caught a glimpse of what must be the state capitol building through the trees on one of the avenues I drove down.
The RV was bumped around so much again I thought I should probably get new shocks before it just rattles apart, so I headed back to Pleasant Prairie where my in-laws live and my daughter was visiting, but alas the garage couldn’t get the parts until the following Tuesday and I didn’t want to delay the trip any more. I decided to just chill out for the weekend and resume my trip on Monday and was glad I did. Chicago was a difficult city to be travelling around in an RV in. Parking was ridiculous and the drivers there are some of the worst I have encountered, ever. Worse than L.A. Frankly, I am surprised I didn’t get in an accident. Every time somebody cut me off I just thought “Go ahead, your car’s going to look a lot worse than mine.” Plus there are bicyclists and pedestrians everywhere who think they all have the right of way. BTW, I didn’t handcuff myself to Oprah’s studio door. I couldn’t find a place to park! LOL!
LAKE MICHIGAN
I camped on Lake Michigan Sunday, the night before heading into Chicago. I took a nice long walk along the lake and although it looked ominous it didn’t rain, but as soon as I prepared for a bonfire it did, of course. The sky was amazing and I took this great shot of the clouds on my phone if you can believe that.
RAIN CLOUDS OVER LAKE MICHIGAN
Once I was in Chicago there was nowhere to camp and only parking garages at the hotels in the downtown area so I had to drive 20 miles out of town to find a place to stay where I could park the RV. I didn’t get any responses to my press releases again. I called ABC and FOX news stations Monday morning since I would be in Chicago for two days. I left a message at FOX but actually spoke with someone at ABC. He said he would check out my website and see if it was newsworthy. No call back so I called him again Tuesday morning and was told it isn’t a story they’d be interested in because I wasn’t local. I said ALD is not a local issue it is a global disease and had I seen the information on the news when my son was exhibiting some of the symptoms I would have asked for the blood test and he would probably still be alive. I was not happy with this reporter. He said he might revisit the idea, but he didn’t. When I pulled up to my last stop at the La Rabida Children’s Hospital there was an ABC news van parked out front. I drove by real slow about 3 or 4 times and then found a place to park. I went up and knocked on the passenger window where I saw a female reporter sitting. She rolled down the window and I told her about my crusade and how I was told it wasn’t news worthy. She was shocked and thought they should absolutely be covering it, but alas, I was on my way out of town and it wasn’t going to happen that day. She passed the information on to the news editor and said maybe I would hear from him later this week. Nothing yet.
I was so glad to be driving away from Chicago, I could just feel the stress melting away. The visits I made there were great but the driving, not so much. I stopped in Oak Lawn, Bolingbrook and Joliet and drove in to Pontiac where I camped last night. Today I will head to Bloomington, Normal, and Springfield and head toward St. Louis. There I will call it quits and fly home on Saturday. That will wrap up the 3rd leg of the trip with an overall total of 450 stops in 178 city’s through 20 states across 12,000 miles.
So I leave you with this one last thought until I get back on the road next month.
Tank of gas – $90
Camping – $36
Maintenance – $$$
Educating the docs – priceless!