I started envisioning this trip in December 2016 and planned to go in March 2017, but due to caregiver nightmares my trip got canceled. I was so discouraged and I never thought it was going to happen, but I picked myself up, and decided to start planning once again for a trip to Miami in September 2017.
I wasn’t quite sure where to start. In the past I would just find a cheap plane ticket, a cheap hotel, pack a bag and be on my way. Clearly life is not so easy anymore with respect to planning after you break your neck. There are so many things to consider, such as:
[list style=”question-circle”] [li]Who is going to take care of you when you’re down there[/li] [li]How accessible are the rooms? Can you get in the bathroom? Is the bed too high?[/li] [li]Is the city handicap accessible?[/li] [li]How on earth are you going to fit so many supplies in your suitcase for emergencies?[/li] [li]How am I going to get on a plane or fit everything in the car?[/li] [/list]The list is endless. I am a planner by nature and think through logistics months before I engage in anything. For this trip I had no idea what to expect, what to plan, and how to go about doing it. It had been 7 years since I’ve taken any kind of vacation and I was unsure if I even knew how to relax anymore.
To start off I will say that no trip is feasible as a quadriplegic unless you have at least one or two family members, caregivers or friends go with you. I know this is hard to hear, but you need people with you who are reliable, will not stress you out on your trip, and will be there to help you enjoy your time for relaxation.
With that said I will go over the logistical process I underwent for my three week trip down to Miami. I realize most people only vacation for a week or two, but I was fortunate enough to have an apartment I could stay in and not have to pay for a hotel. If I did have to pay for a hotel I think my vacation would have been cut short down to a week 🙂
First off I created a “Packing List” word document and started typing a list of everything I use on a daily basis. The list was extensive and kind of mind-boggling. I decided I would takes two suitcases … One for cloths and one for medical supplies. I planned for all contingencies such as if my catheter got blocked what I was going to do. For example, I purchased large sterile saline syringes that I could flush my catheter out with so I wouldn’t have to go to the hospital if something happened.Two weeks before the trip I purchased dozens of Ziploc baggies, started laying out all my supplies on the floor, and putting them into their appropriate bags for packing into the suitcase. Fortunately, I had my wonderful mother help me do this.
The next issue was who is going to accompany me on my vacation? I normally have live in caregiver’s, but several weeks before the trip one of them didn’t work out, so I thought I was going to have to cancel my trip again. It was so disheartening. My mother and boyfriend both agreed to accompany me, which made me incredibly happy as I knew I would be able to relax with two people who love me, and care for me.The next issue was transportation. Was I going to fly down to Miami or drive? Eventually I will have to fly more, which will make transportation more complicated, but on this particular trip I decided to drive 12 hours with my van down to Miami. This way I would have reliable transportation down there. I have traveled on planes before, but it makes the trip so much more expensive when you have to figure out about renting a car when you get there, paying extra luggage fees at the airport, chairs breaking, getting out of the plane, etc. It is definitely doable, but for my first big trip I wanted to have the comfort of my van and everything I needed to bring.
As with many fellow quadriplegics, I have tremendously sensitive skin and I’ve suffered from a very large pressure sore on my sacrum, which led me to have flap surgery in 2016. So, needless to say one of my largest concerns was my skin. I have such a specialized mattress at home and I wasn’t sure how I was going to sleep on another bed. I did a tremendous amount of research and I wanted something a little bit more reliable than just an egg crate on top of the mattress. I found a fantastic company called Span America. They make a foam like surface topper for about $140 in a queen-size that you can roll up and put in the back of your car. It worked like a charm and let me sleep soundly without having to worry about skin breakdown.As I was so nervous about my skin I did not want to drive 12 straight hours in a car because I have heard nightmare stories about pressure sores and car trips. So, I had to find a halfway point between Raleigh and Miami to spend the night. I love staying at the long-term stay type hotels by Marriott. You can get a room for $100-$160 a night and it has two rooms in it, a living room, and a kitchen. These hotels never fail to disappoint.
I was fortunate enough to have my strong boyfriend lift me onto the bed, but if I did not have him I would have made sure to bring along a transfer board for caregivers to transfer me safely.Another nerve-racking issue for many quadriplegics is the issue of showering. Many of us have a nice set up at home with a roll in shower and a shower chair. This is not particularly convenient for a vacation, so I came up with a “fast and dirty way” to stay clean 🙂 When I moved to China in 2013 my shower chair simply could not fit in the bathroom. I think I cried for days because I was not sure how was going to get clean.
My sister told me that I should shower how people have been doing it for thousands of years … A bed bath (I like the term birdbath personally.) You simply put a few under pads on the bed and cover them with towels. You then just take some washcloths, go back and forth between the bathroom & bedroom, and wash your body with some soapy/rinse cloths limb by limb.
Honestly, I love it so much that I do a regularly. It only takes about half an hour and it frees you up in case you can’t get safely into the shower in a hotel room. Voila! You are clean. Now, what about washing your hair? Well, a fun and fast way to do it is just stick your head in the sink … Okay, maybe not fun, but definitely fast and efficient!
The final challenging issue for many of us is the bowel program. I know many people go to the restroom sitting up, but if you can stand it, roll on your side, put some under pads under you, and you can simply poop in your bed. I do know a bunch of folks that do it this way as well, and it saves you from having to get up and down and up and down again. I realize these are nitty-gritty details, but they are so important with respect to planning a relaxed vacation so you are not spending your entire time thinking about your care.
I kind of look at traveling as a quadriplegic as camping … You need to make allowances and compromises to your daily regular routine if you want to get out and see the world.
TIME to RELAX
Once I figured out the main logistics of how to prevent a pressure sore with a mattress topper, my bowel program, how to shower, and how to wash my hair everything else was pretty smooth sailing.
The next item on my agenda was to actually go out and have fun! The main objective for me was not to spend so many hours a day on my spinal cord injury daily care. I wanted to do everything safely, but quickly. So, I abbreviated many of my daily living activities so I could spend more time outside seeing my friends having some drinks, getting into trouble, and swimming as much as I could.
Traveling as a quadriplegic takes a considerable amount of time, planning, and logistical consideration. It can be done and enjoyed, but you simply have to think ahead & make sure to have one or two people who are reliable to help you with your healthcare.
Resources: Beach Access provided via Sabrina’s Beach, Miami Beach funded by the Sabrina Cohen Foundation.