I have learned so much by doing the things that scare me. The life lessons in the “scary things” have been so eye opening. Let’s see if I can get this to make sense in written form:
The Boy Scout Troop was preparing to go to summer camp and the Scout Master came up and told me he needed me to go. On the outside I smiled and laughed. “Yeah right you’re kidding…. Right?” On the inside I was in sheer panic mode my mind going over all the horrible things that could happen. All the ways I would embarrass Orion and Van. The judgments that would be placed on me for my limitations. The pain and possible humiliation.
I had a few months of being told how important it was that I get a long term camp that I really needed to go to summer camp. That the camp we were attending was nice and small. In my head I was hearing it was 45 minutes from the nearest hospital. I couldn't control my food and water wasn’t filtered. There would be so much walking I would miss out on things and everyone would wonder why I was sitting around all the time.
I was really hoping my doctor would tell me no when I went in for my physical. She asked the normal questions and said if my Nephrologist said it was ok then I could go. Dr Tandon had already said I could go if I was stable and I have been for a while now. I have never been to summer camp what was I getting myself into!
So I called the camp director and nurse to make sure they were ok with me coming up. I was hoping that they would be uneasy with my kidney issues and not want me at camp. They were not only ok with me coming the camp director knew Van and was excited to meet me. No more excuses except myself and my FEAR.
FEAR Every step I took my feet would blister because of my Epidermolysis Bullosa (EB), an inherited connective tissue disease causing blisters in the skin, and I would have to walk everywhere. We didn’t know how far away we would be from the bathrooms, kitchen, flags or anything.
FEAR I have to drink a lot of water to keep my kidneys functioning and it is supposed to be filtered… this makes me need the bathroom which makes me walk.
FEAR I have a HUGE list of dietary restrictions. What would I be able to eat.
FEAR What if I have a BiPolar moment and make an ass of myself because the situation is totally out of my control.
I sat down with our Scout Master and tried to talk him out of needing me at camp. He explained that I needed the long term camping so I could be nominated for Order of the Arrow next year. That took my breath away. I sucked it up and said ok I can figure this out. I was still only at 90% sure the day we left for camp.
Most of the adults attending know about my kidneys, they know about my food restrictions to a point. But because I have always had some shame associated with my EB, I just say I have issues walking. I try not to get into it too much.
…..packing for camp I looked like a pharmacy. I am unable to take many pain medications due to my kidneys but I took everything I had. I had my foot soaking bucket, bandages, powerade for hydration, and snacks just in case.
We arrived at camp on Sunday. It was a cluster throwing packs out of trucks into piles and everyone but me seemed to think this was a good idea. I had no idea where my stuff was… I needed the control of my items. In Boy Scouts the Scouts run the show I just needed to control my situation… I was ready to leave or panic then our guide appeared. We had a gator to load with heavy stuff but we hiked in to our site. Then straight to the waterfront. It was high 80’s not the best temperatures for me.
I made it that first day. When we hit the bed I cried myself to sleep. I was trying to figure out how I was going to make it through the week. We were close to the KYBO (toilet) and the kitchen but flags was a good hike for me and heaven forbid if I wanted to get a snack or see the nurse. I kept wondering what I had gotten myself into. My journal entry for camp was not so happy that night.
I won’t give you a play by play of how everyday went but I did learn some amazing things not only about myself but about others just in one week. I learned that Van loves me more than I could ever imagine and was so worried about me that I had to tell him to go away for the morning so he could have some time too.
So yes my feet were blistered by Monday night. The nurse checked them out… when I say my feet look bad they are in pretty bad shape. She said they looked like 6 degree burns. I thought they were just really bad blisters. I was keeping them clean and antibiotic ointment. Clean socks twice a day and lots of ice water thanks to the kitchen staff.
I drank a ton of water using a camelpak with water and powerade bottle with powder in it. I stayed good and hydrated. Scouts offered to get me water on occasion when we were playing cards and they didn’t see me with a drink.
The camp didn’t get my special needs form to alert the kitchen to my food restrictions which would have made her head spin anyways. So the chef and I chatted. She told me that there was always salad and if I needed a second helping one sides and no meat just say something and she introduced me to the kitchen staff. I was overwhelmed. I came home with snacks I took up I ate so well.
I learned that MY Boys Scouts have the biggest hearts. They are compassionate and caring. When Van was off helping with something at meal time one of the Scouts with the help of Orion got my food for me so I wouldn’t have to go through chow line. It saved me walking up and down a hill on a day I was really hurting. They asked questions when I was soaking my feet in ice water… and they were respectful not judgmental like I was expecting. Questions like have you had that all your life? Does it hurt? How can you fix it? And they listened to the answers I gave. Hello disabilities awareness merit badge.
I had scouts offer to run to the snack shop for me when they were going… but ice cream melts so fast. Scouts would run and get the gator for me so I could make it to flags every morning and night.
The Scouters sat around and had a woggle of a time. We probably made a good 20 woggles that afternoon.
I learned to whittle and made myself a neckerchief slide while soaking my feet.
It has a popcorn kernel in it for some silly reason.
I was accepted just as I am. My fear was me.
I had a great time at camp despite the pain. I watched 15 young men grow before my very eyes. I can’t imagine not having that experience. I overheard conversations that I wish every parent and Scouter could hear. Just Scouts being themselves… relaxed and mingling with other troops. I was invited to play cards. I was asked to help.
On the last Flag ceremony I was videotaping our Troop doing Flags when a special ceremony started. I was SHOCKED when my name was called for OA … I know that my OA will happen next year but the Camp Commissioner put my name… It was one of those omg moments.
It was one of the best weeks of my life. I had a conversation with our Scout Master while we were there and I won’t go into all of it but he told me hadn’t understood the full concerns I had with camp and that I was very brave for coming… it was not pity. There was so much more and tears from us both by the end of the conversation. I will never forget.
The Troop is going camping this weekend but my feet are already blistered from doing a Blitz for popcorn sales… I am going to miss this trip but I am resting up for a great weekend at Martin Scout Ranch in October!
Without the support of my husband I wouldn't have made it to camp much less through the week. There are never enough words to tell him how much he is loved and appreciated. < 3
I choose to do one thing that scares me every day. Today it’s sharing this with you.
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