Throughout my life, my health has taken away things in my life that other healthy people could do. In elementary school I discovered that I couldn’t keep up with my classmates at recess. Later in elementary school when all my friends were going off to summer camp, I couldn’t because of the high elevation. In middle school they wanted to put in a pacemaker and defibulator along with putting me on a no caffeine diet and a low salt diet. This meant another surgery, another scar on my body, another thing that made me different. All of these things, I fought against. But I noticed that there was a cycle. I gave myself a day or two to cry, scream, yell about how life isn’t fair and tell my parents that I just wanted to be normal. Then after I got it all out, I sucked it up and I did what I knew I had to do.
Well yet another thing came up on Monday that I was not able to do. My friends at school are all going away on a three day camping trip for Spring Break. Now I am going to be very honest with you, I don’t think I would like camping. Not one bit. I like sleeping in a comfy warm bed. They were going to be sleeping in tents. I like having heating and a running toilet. They would have a camp fire and a place behind the bushes. But that isn’t why I wanted to go. At first all I could see is that this group of people was going to be having fun and making memories… and I wouldn’t be a part of it. And that’s what made me so upset. I cried, I yelled at my mom that she didn’t understand and then I called some of my heart friends and I vented to them, knowing they’d understand.
Well by Tuesday, my friends at school were planning on all pitching in to buy me a generator so I could go up and keep my oxygen charged constantly since I would need that since it is above 3,000 feet. I was ecstatic. I would be a part of these memories. I’d be a normal college kid… with the exception of the oxygen. But then I had to think about my health and how realistic would this trip be for me? I went up to the mountains once in my life, and it was to stay at a resort. A resort so I didn’t have to do anything strenuous! I never had to hike, I go a comfy bed, I had oxygen plugged in constantly, and had a cabin that had great heating. But at the end of the trip, I was exhausted. So what would real camping do to me? I’d be out of commission for a week if not more and that would definitely affect my schooling. On top of that, how much fun would I have in the freezing cold while everyone went off hiking and I had to stay at the camp site?
I came to the conclusion with my parents that it would not be a smart idea for me to go. It’s sad to me, and if I had decided this a few days ago – I’d be a mess. But over the years I realized that I need a day or two to be absolutely miserable and complain about my health, then I am able to be calm and think rationally and accept that this is the way my life is and make the best out of it. So I have. The day after my friends get back from camping, they will be “glamping” which is glamorous camping in my acre backyard. Parents have agreed to it and they even offered to put up our big projector so we can watch movies all night and we might rent a popcorn machine to use as well.
I could tell that during my sobbing episode, the people who heard me complain, especially my parents felt awful for me. I know that my dad and my mom would do anything to make me feel as normal. My dad had even thought about taking time off of work, following me up there and staying at a hotel nearby just in case anything happened. And then my friends from school scrambled to try and find a camp site that had electricity and when they couldn’t, they all offered to pitch in money to rent a generator just so I could go.
There are going to be things in my life and I’m sure many Adults with CHD’s lives that we just can’t do. No matter how much we want to. And it stinks. And I hate it. But this is our life and we can go with what life has given us, or put up a fight and get exhausted over it. Do I wish I could go camping? Yeah, I do. But I found a compromise. I may not be involved in the memories at the camping trip. But when they all come over and spend the night at my place, those will be memories that I will be part of. No one ever gets everything they want, whether you are healthy or not. And that is something I had to remind myself. And along with that, I have the comfort of knowing that I have so many people in my life who were willing to drop everything and try to make it so I could feel normal. With those types of people in my life, how can I be anything but happy?
Hope and Love,