Wednesday, September 4, 2013

To Scoot Or Not To Scoot, That Is The Question

I have had a difficult decision to make ever since my husband and I booked our honeymoon to Disney; which is in less than three weeks. To the average person it may not seem like a big deal but to me, it has been this gut wrenching decision that has taken me months to make and come to terms with. The decision I was struggling over was whether or not to rent a scooter to use during the eight days we are down in Florida at Disneyworld.

Most people I have talked to regarding this decision do not understand why I would even consider NOT renting a scooter considering the physical issues I have with arthritis, fatigue, and the difficulty I have with extreme heat and sun. To them, it seems like a no-brainer. And in some aspects it is a no-brainer. If you Google "scooters" and "Disney", you will see that the use of scooters in Disney is rampant. A whole other topic for another day. It's not like I would be doing anything unusual. Rent the scooter and just use it. Disney is huge. Why stress out over it?

I have never used an assistive device during all these years that I have battled extreme pain and fatigue. Not once. I have been on vacations and day trips. I have struggled at times to even get through a short shopping list at Stop and Shop where by the way, they do have scooters. I am not against scooters, wheelchairs, canes, walkers, or any other assistive devices. I know people who need them and use them. But I do not use them.

It is not because I do not physically qualify to use something like this at times because anyone who knows me knows that I certainly have had periods of time over the past five plus years where an assistive device would have been most helpful; especially a scooter. At first I thought it was just a pride thing or that I was worried what people would think when they looked at me using a scooter. I have this invisible illness which means that I typically look well on the outside and feel horrible on the inside. But then I realized that it is so much more than that. My desire and determination to intermittently not use an assistive device is due to one emotion and one reason: fear. I am scared to death.

I am scared to death that this autoimmune illness I have will progress. That someday I will be dependent on an assistive device to be able to go out into the world or even to function in my own home. I am scared to death because I have had so many different body systems affected by this illness that someday, it will get the better of me. I fear that I will end up in kidney failure or with neurological impairment that will prevent me from walking. I fear that I will be one of the Sjogren's patients who develops Non-Hodgkin's lymphoma. Or pulmonary hypertension. Or end-stage liver disease. These are not unrealistic fears. Although not as common as some of the other Sjogren's symptoms, they do happen. People do die. So to me, needing to use a scooter at Disney feels like I am giving in to my illness.

To be honest, this position I have taken for myself about using assistive devices has served me well over the past several years. Has it caused me more pain? Sure. Has it sometimes limited what I can go out in the world and do? I don't think so. But I do believe with my whole heart that pushing myself in terms of my mobility has made a positive impact on my lifestyle. I am a big believer in using what you have and also in the idea that you lose what you don't use. I know there are people who have no choice in whether they use an assistive device or not. I have that choice. And I believe that if I had made a different choice, I wouldn't be as active as I now am on some days.

This decision has been complicated by the fact that I got a sense from my husband that he was not on board with this whole scooter at Disney thing. And before anyone goes jumping down his throat about this, it has taken some heart to heart discussions between us to get to why I was getting weird vibes from him about it. (Disclaimer: I have his permission to publicly blog about this.) Of course I don't need his permission in my decision about whether to use a scooter or not but I do value his opinion and it was important to me to hear his thoughts. I also felt like I needed his support on this. Come to find out, the weird vibes I was getting were accurate. My husband eventually told me that even though he wants me to do whatever I feel I need to do, that he felt like renting a scooter would be giving in to my illness. Same exact thoughts I was having.

But here's the thing and this I know with absolute certainty: I'm a fighter. I have never given in to this illness. There are times where I have been accepting of the illness and the limitations it has imposed on me but I would not call that giving up or giving in. I also know that many, if not most people reading this, have no idea of what I go through on a daily basis just to function. Although my husband has a pretty good idea, he still cannot physically feel what I feel. He does not know every single instance I have pushed through when I should have been home in bed. Nobody does but me. And that is how I prefer it to be because I don't want my life to be a series of verbal complaints coming out of my mouth about how lousy I feel.

I remembered a similar decision I was trying to make a few years ago regarding applying for a handicap parking placard. Similar thought process. A good friend told me that I should get the placard and if it made me feel better, only use it when I absolutely had to. She must have told me this on several occasions and finally I got one. And as I was making my scooter decision, I thought about all the times I got myself to the store, the doctor, or to a much needed social event just because I could use that handicap placard and park closer to my destination. I thought about how during those times, I had more energy to complete my errands or enjoy my time out with friends because of the placard.

Why would Disney be any different? Say for example it's Day Two of our trip. It's 5pm and we have spent a majority of the day at Animal Kingdom and we are now resting back at our hotel. And my husband and I want to go Downtown Disney to try one of the many restaurants there that we have been talking about for the past year and a half. But my joints hurt so bad and I am so exhausted that I cannot fathom getting out of the bed and leaving the hotel room. But wait, there's my scooter. So my choices are, postpone Downtown Disney until a different day and hope that I am feeling better or not give in to my fears and take the scooter to dinner.

Have I mentioned that this is our HONEYMOON?!?

So I have rented a scooter for the week that we are at Disney. Why? Because I have decided that the possibility of enjoying our honeymoon more fully AND making the experience better not only for myself, but for my husband, is much more important than giving in. I'm not talking about the giving in to the illness, but rather the giving in to my fear. Because not renting/using a scooter and then not being able to do what I (we) want to do IS letting the illness win. It is taking a gamble on letting this thing called Sjögren's dictate how we are going to enjoy this precious time together. That is not acceptable to me. Because like I said, I'm a fighter.


If anyone out there has any experiences with using a scooter in Disney, please share your experiences in the comment section below. I am open to hearing about both good and bad experiences because your experiences could help me to have a better one. Thank you.


  1. I don't have experience with a scooter at Disney. But I really wish that I had rented one for myself when we went!

    I think it will be a wise decision for you in the long run. Even though the parks (and DTD) are flat they are all HUGE. I also found that the Florida sun is a lot hotter than our North Eastern US sun. It took a lot out of me while I was there, and a lot faster than I had expected it to. It will also be helpful to you should you have to wait in any lines. With the GAC there shouldn't be too many, but none the less there will be a few more than likely. There's also the line wait times for the buses to return back to your resort, if you are staying on Disney properties. And the scooter would help with that.

    I have a lot of other Sjogren's related suggested for Disney if you are interested. :o)

    1. Definitely interested! I am going to get a GAC pass as well.

  2. Christine, I believe you have made the right decision. The thing is, just like the handicapped plaque, you do not have to use it if you are feeling well, but you have it as a back up should you need to use it for comfort and still get to do the thing(s) you want.

  3. I agree, better to have it if you want / need to use it. Understand and can relate to your thoughts on this entire subject. Enjoy DisneyWorld! One of my favourite places to visit - was last there in 1995 I believe.

  4. The first time we went, I thought "I can do this". I struggled along the first day. The second day, we went to AK. It was hot (it's always warmer in AK, even in late Sept./Oct. when we went). My arthritic toes hurt, my knee was excruciating, but more than anything, I was so exhausted that I literally could not make it another step when I sat down by the side of the 'road' and my poor husband had to walk back to the front to get a wheelchair (as there were no scooters available in the middle of the day, of course).

    Every trip since then, I've rented from Walker Mobility. They're always there if you have a problem, the batteries last FOREVER, and they're workhorses (the scooters). They aren't cute, but they're solid, and really, the battery needle barely budges even if you're in the park till 3:00am. :-)

    I've never gotten a GAC, nor have I ever needed one. Since a GAC can be obtained by anyone with or without a physician's statement (unless things have changed), everyone and their brother has one, and people misunderstand what the GAC is for (bad grammar, sorry). It doesn't keep you from standing in line - it moves you to a different line, one where you can take your scooter with you (I never do this - I park and walk). For kids dealing with autism, for instance, it gets them away from the crowds. You still get to wait, just in a different place. It's not a get out of jail free card, or shouldn't be, though they are WIDELY misused, and cast members frequently get tired of trying to keep up with when people should go on rides and send them on through so it does shorten waits sometimes.

    1. Hi Jennifer,

      That is the same company I rented from. They are no longer an "approved" scooter company by Disney which means that you have to meet them at the hotel to get your scooter. They can't just drop it off. But the company came highly recommended so I chose them. I am glad to hear that you had such a good experience with them.

      I do understand that the GAC card does NOT shorten your waiting time in line but I agree, that is a popular misconception. I may not even use it if the line is only a 10 minute wait which may be possible since it's a slower season.