Acceptance
Once I became very sick from my chronic diseases I gave up on thinking I could travel, stay in hotels, go to large public events, visit theme parks or do anything outside of my safe bubble. In my mind all of those things would have to wait until I was fully cured. Of course, at the time I still believed that was possible. However, as years passed it became clear that my diseases would be with me forever and I had to stop waiting. I remember the day I found a Facebook group dedicated to traveling to Disney World with my rare diseases. I was shocked- an entire group of people who lived my reality had figured out how to go to Orlando!
The members of the group taught me about disability passes and cooling towels. They helped me figure out what rides had smells sprayed at you and which would make me too dizzy to ride. They gave me tips on flying and proved to me in their stories and experiences that our diseases did not have to be the reason we could not go.
But I also learned that while our diseases do not define us they are still a part of us and that in certain moments we have to acknowledge them because in doing so it will mean we can get the help we need to be able to participate. I remember the first time I read the recommendation to get a motorized scooter for our trip and thinking that I did not need this- I always pushed through things. But given their stories and advice, I quietly reserved one telling myself I would cancel it before our trip. Eventually, after admitting that I probably couldn’t walk 15 plus miles a day which is common at Disney in 85 degree plus heat, I told my family I was in fact, going to be using a motorized scooter.
Leading up to the trip I cringed thinking about using the motorized scooter- why couldn’t I walk around Disney? I worried that my family thought less of me for needing this, though they never ever suggested this. But perhaps more I struggled with feeling like this was a sign of my own weaknesses and my broken body. The hidden diseases I carried with me were suddenly visible as I gave into needing this assistive device.
In the end, the motorized scooter was the single greatest decision I made for our trip to Disney. Normally, in these situations I would never feel safe being alone with my son when my own health was so unpredictable. But the scooter gave me complete freedom to go into the parks alone with my son which I never imagined possible. It also meant I did not have to spend half the time in our hotel room recovering each day missing out on time with my family. I had my set of wheels and suddenly anything felt possible.
This past Saturday we went to the new LegoLand theme park that opened near us. Our son didn't stop talking for over an hour as we drove- giddy with excitement about all that the day would hold. Having delayed this trip twice now because of extreme heat, we finally realized it was summer so a perfect weather day was probably not in the cards. So I spent two weeks researching and learning about LegoLand. Reminiscent of Disney and worrying about being in the intense heat and sun I knew I needed a plan or we would not be able to stay more than an hour before I deteriorated.
As I researched I read things like, "the park is built on a hill and there is no shade." My anxiety increased as I wondered why I ever got myself into this in the first place. Of course it was me who initiated the outing but we had already told our son so there was no turning back.
In truth, I already knew my solution but it took me until the night before we left to admit out loud that, "I needed to rent a scooter again." I knew it was the only way I could do Legoland safely in 95 degree heat. It was honestly still a little hard for me to swallow needing this even after it was so wonderful at Disney. This park was so much smaller and I felt like I should be able to handle this. Again somehow feeling that if I admitted I needed help I was in some way letting myself down.
As odd as it may sound, I have long stopped caring about the stares and whispers of others who see me in the scooter or even using the disability pass to avoid a line. I would gladly give up all of my health issues and just go to a theme park like a "normal healthy" person. What I am still working on is not passing judgement on myself when I do need help. I try to remind myself that in these moments I am actually strongest when I admit my weaknesses. That utilizing all the tools and tricks to my advantage ensures I do not have to miss a fun day with my family. And this weekend was no different, as I drove my son and I around the park and I saw my son's pure delight in our visit, I knew I had made the right decision and had in fact not failed at all.
