Posts Tagged ‘New Orleans’

Some Life in Me Yet

April 8th, 2012 5 comments


Being housebound changes a person. These four walls have become the boundaries of my whole world. I rely on books and the internet to remind me that there is more to life than this. My imagination can escape, even if my body cannot. But over time, it has become easier to forget about what lies outside. Instead of seeing these walls as part of what is, it has started to feel like the walls are what should be. That I am trapped, and always will be, and that this is all there is. I will sit still while the world goes on. I am not a part of it, anymore.

But who knows what she spoke to the darkness, alone, in the bitter watches of the night, when all her life seemed shrinking, and the walls of her bower closing in about her, a hutch to trammel some wild thing in? – Return of the King

But our trip to New Orleans took me outside this cage for a little while. I got out from under the burden of these walls.  And I realized – I remembered – that LIFE surrounds me. There is more out there than the same trees and bushes I see from my windows. Different sky, different people, different sounds. New music, new food.

It was like taking off sunglasses on a cloudless day, everything seemed so bright and fresh. Have you ever had the wind knocked out of you? This was like taking that first deep breath after gasping for air. It was emotionally and spiritually invigorating, despite being physically exhausting.

And I remembered something. My life is about more than enduring this confinement and searching for a way out. I care about more than the contents of my home, and the tired, dusty thoughts in my mind. My life is not an endless monotonous slog towards another day of more of the same. I can touch the world, not just read about it. I can feel it smell it taste it see it hear it. I am PART of it, just like anyone else. There is some life in me yet.



Tips for a CFS Vacation

April 3rd, 2012 9 comments

My husband and I were fortunate enough to take a vacation to New Orleans last month, and I am still recovering. But I did want to share what I learned (or re-learned) on this trip about traveling with CFS. I wish there was a magic pill that would allow us to take vacations from CFS, but in the meantime, here is some of what has helped me while traveling.

  1. GO! First of all, go on vacation if it is at all feasible for you. My husband and I manage vacations once every five years or so. We might travel for a family gathering or go a short distance in summer, but to actually get on a plane and go somewhere is a really big deal. The physical and financial costs are very high, but the emotional benefits are also high. I think it is critical for those of us who are disabled, especially housebound people like me, to get a change of scenery. There’s probably research showing how important it is cognitively and emotionally for housebound people to see and experience new things, but even if the research does not exist I believe this to be true. There is no substitute for getting a break from the daily grind, so if it is possible for you to get away then I highly recommend you do.
  2. Planning. I’ve always been a planner and list-maker. But traveling with CFS requires extreme planning. The biggest challenge I have on vacation is wanting to do more than I am physically able. My list of “essential” things to do in New Orleans would probably be a lot for even a healthy person to do. My husband finally asked me, “What are the things that if you do not do, you will feel the trip was a failure?” That changed my perspective towards the list, and helped me narrow it down. It was still too ambitious, but it did help me identify what my highest priorities were so that we could focus our energy.
  3. Hotel. Stay in the nicest place you can afford. I spend most vacation time in the hotel room, so we are willing to pay more than we would if I was healthy. A nice view, comfortable bed, and friendly staff take a little bit of the sting out of being stuck in a hotel room. I always hit a point on vacation where I feel like I could stay in my bedroom for free at home, so it’s a waste of money to travel. But see item #1 on this list. A different four walls and view out the window is a good thing. We have also found that staying in a hotel with room service is important, if we can swing it. On this trip, my husband spent several days in meetings. No room service would have meant I didn’t eat when I was unable to leave the hotel room. A hotel room with a kitchen would be an alternative. There was a nice market near our hotel, so we could stock up on fruit, cheese, and so on to help offset the exorbitant costs of room service.
  4. Devices. Even if you do not use a wheelchair or other assistive device on a day-to-day basis, consider using one on vacation. On some previous trips, we have rented a scooter for me and that was great. I have my own manual wheelchair now, so we travel with that. There is no substitute. Using a scooter or wheelchair enables me to be out of the hotel room much longer, and enjoy walking-intensive activities like museums. I’ve never used a rollator, but that might be a good thing to try for some people. There are other advantages to using a wheelchair, as well. For example, you go through a separate (much shorter) line at airport security. Destinations like Disneyworld are extremely wheelchair-friendly, with separate (much shorter) lines and very well-trained staff. New Orleans was not as great in some places, like the French Quarter where the sidewalks are old and bumpy. But for the National World War II Museum, it was the only way I could go.
  5. Airports. I hate to fly. I hate airports, the people, the noise, the sensory overload, sitting upright for long periods of time, struggling with baggage, etc. I hate it. So we do what we can to minimize the negatives. We fly direct if at all possible. We bring my own wheelchair (so we don’t have to rely on airline personnel to show up at the right time with a wheelchair) and we check it at the door of the airplane. We ask for help at security, the gate, baggage claim, and anywhere else we need it. That help may not always be forthcoming, but we always ask (and are sometimes pleasantly surprised). We make sure to bring adequate fluids and snacks on the plane. And my most indispensable piece of airplane endurance equipment is noise cancelling headphones. I don’t even always hook them up to my iPod. It makes a big difference in cutting the noise of the engines and the chatter of other passengers (that I can never seem to block out).
  6. Schedule. Build rest days into your schedule, and then build in some more. I never plan enough time for rest. This vacation was the longest we have ever taken – 10 days, and I had four days when I did not leave our hotel room at all. I am better about planning rest times during any given day, since I know that I can’t be out for more than a couple hours. I also tried to plan ahead. There were a many restaurants I wanted to try, and on two days I did nothing all day to be sure that I could go out to dinner that night. Flexibility is also key. We adjusted our plans based on lots of things, including how I was feeling, the impressive New Orleans thunderstorms, and how crowded we thought a location might be. For example, we wanted to see the parade of the Mardi Gras Indians, but had to let that go when we found there was no safe, wheelchair-friendly way to do it. Museums tend to be less crowded during the week. And we learned about weekend crowds in the French Quarter the hard way! I much prefer predictable, planned schedules, but we went into this trip knowing we would have to adjust on the fly and it helped.
  7. Nutrition. Ensuring I have adequate nutrition and hydration seems like such a basic skill, but it has taken me a long time to master.  We had the convenience of a nearby store and the hotel market (very handy for when I was by myself and really needed to boost my electrolytes). Carry food and fluids with you everywhere. Pack your vitamins and supplements. I was surprised that I needed better hydration than normal while traveling, which I guess is true for everyone. It’s much better to carry those supplies along with you and not need them, than deal with the reverse.
  8. Alone. Expect to spend some time alone. Your partner, family or friends will undoubtedly want to do things you cannot. In our case, my husband had business-related meetings to attend. If you plan ahead, it is a little easier to tell your family to stay at the pool while you rest, or send your partner off on a hike without you. In my case, this meant knitting. I had several audiobooks on my iPod, and I packed lots of yarn. For the first time ever, I knit all the yarn I brought along (can’t show you, as they are presents). I cut my security blanket and left the computer at home, compensating with the iPod and e-reader. It meant less weight to carry, and I had more than enough entertainment to fill the many hours in the hotel room.
  9. Buddy System. I am housebound and live in the suburbs. I am not able to drive, and this means that anywhere and everywhere I go at home is with someone. To be in a city, with cabs readily available, and neighborhoods to explore, I felt like I had reached an oasis after a week-long desert trek. And if I had done as much as I wanted, I would be as sick as the dehydrated person who over-drinks at the oasis. I’ve developed restraint out of self-preservation, but I still need someone to hold me back. My husband is frequently better attuned to my limits than I am, simply because I want to keep going. Relying on your companion(s) to help you gauge when it is time to rest or stop altogether can really help. I went out one day on my own and definitely overdid it. Maybe it’s just me, but having a friend be my reality check is important to avoiding early burnout.
  10. Disappointed. Despite all the planning and flexibility, I did not do all the “essentials” on my list. The reality of CFS is that we cannot do even a fraction of what we want to do. I’ve been sick for more than 17 years, and my desires have still not completely calibrated to my capacity. I had a lovely vacation, but I can’t help thinking that a few more days might have made it possible for me to manage those last few things on my wish list. Now that I am home, I am trying to navigate the waters of disappointment. But the root of it is that CFS insisted on accompanying me on vacation, and nothing can change that. Considering my degree of illness, and what my normal life is like, this vacation was a huge success. Realistic expectations help offset the inevitable disappointment of traveling with CFS.

Disaster Voyeurism

March 16th, 2012 1 comment

I believe in bearing witness. In many ways, that’s what Occupy CFS is about. Everyone suffers in this life, but bearing witness to another person’s suffering is a sacred act. To bear witness is to absorb the sufferer’s story, to accord that person her dignity, to connect her to the world, and to build the foundation for justice. Bearing witness honors our humanity.

But today, I face a dilemma: will my intention to bear witness be understood and received as I intend?

I am in New Orleans and struggling with how to bear witness to the suffering that resulted from Hurricane Katrina. I’ve read everything I can and seen every documentary about the hurricane, the breaking of the levees, and what happened after the flood. I could draw a map and show you where the levees broke. I could tell you how our government – at all levels – abandoned the people of New Orleans. I’ve learned a bit about the culture of New Orleans, and I can tell you why I think it must be saved.

There are bus tours of the Lower Ninth Ward so that tourists can see the neighborhoods. There is also at least one non-profit that can arrange personal tours of the devastated areas and the rebuilding. I feel drawn to this. I will enjoy my stay in New Orleans, but it feels wrong to enjoy the city and not honor what her people have endured. But it also feels wrong to ride through someone’s neighborhood like it was a zoo.

There is a heartbreaking scene in episode 3 of Treme where a few Mardi Gras Indians are singing to memorialize one of their members, recently found dead in the wreckage of his home. As the small group is singing, a tour van pulls up and the people inside start taking pictures. The bus driver asks “What’s this about?” and Albert responds, “What’s this about?” pointing to the van. The driver responds that, “People want to see what happened.” The mourners tell him to drive away, and after a moment the driver responds, “I’m sorry. You’re right, I’m sorry.”

I don’t want to be that person on the tour bus.

But I also don’t want to pretend that there is no need to bear witness. I don’t want to pretend that everything has been patched up, lives have been rebuilt, and I can stay in my nice hotel and relax while on vacation. That ostrich approach happens to me all the time. So many people in my life – doctors, friends, casual acquaintances – have assumed in one way or another that everything is ok. Yes, Jennie is sick and housebound. She can’t work or drive a car. But she looks great! Everything must be alright! And I do my part to contribute to that assumption. I try not to complain about the burden of this illness on my heart and my life. I say “I’m ok!” (with a certain tone that a few dear friends know means I am not really ok). I give meaning to my suffering through speaking out. I try to flow my life around CFS like a river flows around a boulder.

I believe that the failure of people to bear witness to the suffering caused by CFS perpetuates our history of inadequate research and medical care. When people truly see what CFS patients and their families endure, then they respond with action and support. I’ve seen that in my own life, and in CFS politics. Once you get it, you take action. It is also true that CFS has gotten more press attention in the last few years, and some of that coverage has come with an overtone of “look at them” finger-pointing instead of compassion. That “tour bus” approach doesn’t help us.

I share my story on my own terms, and I hope people will bear witness. Part of me feels like I should do the same for those who endured the hurricane, politely waiting for them to bring it up. The other part of me feels like I should show up and be present, so that they know I bear witness to whatever they wish to share (or not). I believe that our country abandoned this city to its fate before, during, and after the storm. Rebuilding is not over. Suffering is not over. Yes, money is coming in and rebuilding is happening. But the population of New Orleans almost seven years after the hurricane is 25% lower than pre-storm figures. This city has not finished recovering, and I assume the same is true of her people. That pattern should sound familiar to the CFS community. Our government has abandoned us to the storm of CFS, failing to invest the resources needed to help those affected and find a cure.

So here I am, in a hotel in New Orleans. How do I honor the people of this city? How do I bear witness without cheapening what they have endured and turning it into a sick tourist attraction?