Naturally, my family was very excited about the trip as it grew near; however my feelings were definitely mixed.  While I hoped/knew the kids would have a good time, I couldn't help but feeling nervous about how I was going to hold up physically.

I don't like to travel.  I used to, and I've traveled to many parts of this great nation, and even to a few other countries as well.  But that was before, now travel involves a mix of fear, pain, and exhaustion for several reasons:

• The airport:  Hauling the luggage through the airport, standing in line at security and sitting in the uncomfortable seats at the terminal can be exhausting and quite uncomfortable for my neck and shoulders
• The plane:  This is where the fear comes in.  While I can tolerate the seats for an hour or so, I'm always afraid someone is going to drop their luggage on my head as they heave it into the overhead compartment.  Not going to happen you say.  It already has.  One time I was standing in the aisle waiting to get off the plane when the person behind me pulled down their luggage right onto my head.  My whole body went numb for about half an hour.  My other big fear about the plane is the landing/turbulence.  A hard landing or turbulence will really flare my neck up for days.
• The hotel:  Hard bed plus uncomfortable pillows equals neck and shoulder pain.  At home, I can really push myself physically because I know I can recuperate on the couch in the evening or in my comfortable bed that night.  This doesn't happen at a hotel, so each day tends to wear me down a little more.

I'm not telling you these things to complain; there is a point here if you'll bear with me for a little longer. 

So, in general I dread traveling.  This, combined with what I knew would be a lot of standing in lines and sitting waiting for my family to ride rides at the park, made me wonder about what kind of "vacation" this would be for me.

Given my concerns, my wife looked into what Disney offers in terms of accommodating those with physical problems.  It turns out they do quite a bit.  Beyond the fact that they can transport wheelchairs on their buses, and that many rides are wheelchair accessible, they offer a range of different services if you have trouble walking or standing in line.  They offer special places to sit, or even a pass which means you don't have to wait in line at all.

While I was impressed with their willingness to make accommodations, I wasn't sure what to do.  Since I couldn't decide, I chose to be prepared.  Several years earlier, I had had my primary doctor write a general letter regarding my condition and my limitations.  I did this in case I ever needed it with an employer (which I didn't; my employer at the time was very willing to provide me what I asked for).  I pulled out the letter and decided to have it updated (see below) which my doctor readily did.

Armed with my letter, we packed up the family and flew to Orlando.  The trip down was uneventful and I was feeling pretty good.  So, the first day I took an Alleve in the morning and set out to the park.  I was able to stand in some lines and I did a lot of sitting.  It was uncomfortable and tiring, but I was holding up pretty well and I decided to forgo asking Disney for anything special.  Since I wasn't riding on most of the rides, I didn't feel right asking to jump to the front of the line.  Don't get me wrong, the pain was there much like I thought it would be.  But I chose to ignore it and focus instead on the park and my family.  As I did, the pain kind of took a backseat; it was there, but it wasn't the focus of my attention.

Although it was extremely challenging physically, and by the end of the trip I was completely spent and in considerable pain, I did it and I survived.  More importantly, I did it without asking for any special help.  To me, it was a tremendous personal victory.  I was able to participate in a very special event with my family.

I'm not saying people shouldn't ask for accommodations they need and are entitled to.  But I am saying there is an upside to pushing yourself.  To achieving what you thought could not be done.  To fighting back at a personal level against Chiari.  To reclaiming what was lost.  It is very easy, even understandable, to say I can't do this and I can't do that, and many times that's true and must be accepted.  But at the same time, think about things you might be able to do if you really push, think about what can be reached for and attained with a supreme effort.

I know to many taking a simple trip to Disney World doesn't seem like much, but I did things on this trip that I hadn't been able to do in years.  So to me, it was like winning the big game:

Labuda 1, Chiari 0

If you're interested, below is the letter I got from my doctor.  I asked him to draft it as an employment letter, rather than specific to Disney.  I'm not claiming this is the way these letters should be written, nor am I saying people should use them with their employers.  I do hope to run a future article on this topic however, which will provide advice from legal and human resource experts on disability issues in the workplace.

To Whom It May Concern

Mr. Labuda is a 38-year old patient of mine who has syringomyelia and Arnold Chiari malformation.  This was decompressed in January of 1999 by neurosurgeon, Dr. XXXXXX.  The patient has chronic symptoms as a result which include weakness of his neck and upper shoulders, as well as neck pain, upper back, and pain down his right arm.  These symptoms can be exacerbated with certain activities such as standing for prolonged periods of time greater than five minutes or sitting for prolonged periods in an improper position.

According to the American Disabilities Act, I am asking his employer to minimize his travel time and provide reasonable workspace accommodations in order to avoid exacerbation of his symptoms.

Sincerely,

Dr. XXXXX

-- Rick Labuda

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