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Travel Abroad with My Son and a Disability


by Lu Sobredo


Are you on the fence about traveling with a disability or any form of physical limitation and  discomfort? Have you thought as I did, how could I possibly consider traveling under the circumstances? After all, I have a chronic and disabling medical condition that rendered me nearly immobile. Mine is known as Rheumatoid Arthritis (RA). If after reading this essay I somehow nudged one or a few to no longer be on the fence or even just stirred curiosity about traveling abroad, then I’ve made a small difference.

If you read my WELCOME blog Travel and Why Not?, I described the doctor visit that confirmed my diagnosis of RA which seems fitting to include here again. During the consultation visit on August 5, 2013, the doctor informed me that the disease will become progressively worse; that I will be bedridden and crippled in no time; and that it behooves me to begin treatment right away to curb any additional damage to my joints. He highlighted in no uncertain terms that I would have to face the reality that I will be spending thousands of dollars for medications, and added that there is NO CURE. His tone and body language seemed to imply that he wondered if I could afford the treatment. He didn't consider if my medical insurance would cover the cost. He made it clear that it was my responsibility to discuss cost with his office staff. Without attempting to establish a baseline data or biomarkers for the RA, and hesitating to answer questions from me and my husband, this RA specialist unabashedly urged I start drug treatment that very visit. Shaken by the devastating news, and holding back the tears and a wail bubbling in the pit of my stomach, I managed to say, “Please prepare your report for my primary physician so I can discuss with him the next best course of action.” Exiting the doctor’s clinic was the best thing my family ever did for my first step to taking back my life with this disease. Finding a treating physician compatible to my needs took another three months after that woeful day, but I never looked back. 

So when my husband announced that he planned to attend a conference in Barcelona, Spain in the summer of 2016, I seriously meditated on how travel might be possible for me. If I did travel, how long could I travel without falling into the depths of fatigue inherent in the disease? Is this enticing opportunity even worth considering? What happens during the long stretches and stopovers of a transatlantic flight? What do I do when my husband is not around when he is attending his conference or is away from our home base when conducting his research? He was also traveling to a conference in New York first before he headed to Barcelona. Knowing there was no way I could travel both continents, I had to ponder the practicality of travel altogether. So much to consider before taking the leap.

I remind my family and friends, although I may appear, even feel functional one day, I only know too well that the next day might prove to be very different. Of late and especially prior to my summer travel, I have had extended good days with minimal or intermittent discomfort. Luckily, the good days are accompanied by a period of sustained stamina which lasts a few hours and even an entire day. I am keenly aware that excruciating pain might seem like a thing of the past one moment, and at a blink of an eye, I might find myself totally unable to grasp a door handle without grimacing in intense pain. Yet, as I am told by caregivers and observers in my social circle I “have come so far” since the onset of these pesky and debilitating symptoms. No matter the level of annoyance, decreased functionality and writhing pain brought on by the disease, I decided that I would take any day of diminished pain as a blessing. I decided I would turn the day into a day lived fully. Surely, to live fully includes travel. Guess what? Travel is what I did. And miracle of miracles, I found myself in Spain and Portugal for one month in the summer of 2016. How did I manage? I traveled abroad with my son and my disability! 

Like most people with disability, my preparation started by confronting what I considered  obstacles. Don’t get me wrong, moments of doubt visited me often during the months preceding my scheduled travel. I was very much aware that I would run into unexpected challenges. I vacillated enough times about going, that my husband delayed purchasing my airline ticket. He waited not only for the prices to come down, but also for my assurance that I truly wanted to travel. My decision remained steadfast despite a little voice in the back of my head nagging at me that I should just stay home. After all, doing so meant not subjecting myself to inconveniences encountered by normal travelers who are unencumbered by a serious illness. Inconveniences are multiplied for the disabled like myself. I didn’t succumb to the easy alternative but instead I reimagined practical solutions and antidotes of sorts to make travel abroad achievable. I surmised that if the solutions worked for me, they surely could work for others.

Possible Travel Obstacles

As a person with RA, I faced several debilitating physical symptoms; complex issues surrounding treatment and medications, and a vulnerability towards feelings of dejection. These were the three areas of challenges I grappled with. They compelled me to explore  a set of solutions that works.

What Physical Symptoms? Symptoms might include decreased mobility or mobility disorders due to inflammation, stiffness and pain in the joints. For me, these symptoms are mainly in my knees, ankles, hands and wrists. When these symptoms persist for any length of time during the day, they not only impede mobility, they also cause my stamina to suddenly drop. There are days when I definitely get brain fog or what feels like brain fog. Some of you might be familiar with the feeling of disorientation and forgetfulness. Luckily this past year, these instances have been less frequent. My health journey has progressed for the better as I have been able to move around without a wheelchair. Starting autumn of 2015, I managed to walk about with only a walking cane. My goal was to be more functional and I welcomed any device that aids movement. I have seen others use elastic knee brace, wrist brace, walkers, crutches, wheelchair and foldable walking cane. Whatever works for you. 

My Practical Solutions:
  1. Select an ambulatory assistive device that fits one’s needs
  2. Call the Airline company a few days before departure to arrange for a wheelchair at the airport and pre-boarding privilege.  
  3. Travel with a family member or close friend. My husband who made the travel arrangement, also arranged for a companion to travel with me knowing he couldn’t be with me at all times. So my most treasured assistance came from my college-age son Adrian who became my travel companion. He helped me transcend and rise above difficulties encountered during our travel. 
What about Treatment and Medications? These may be as complex as the disease depending on one’s ailment or physical condition. I will consider discussion on alternative treatment options for RA in another blog. Personally, I take medications to reduce the debilitating symptoms and to inhibit further potential damage to the body. At least one medication requires refrigeration. Some of the dreaded scenarios I considered were: What if I lose any of my prescription drugs while in transit? How do I access ice or a refrigeration? How do I ensure I take the prescription on time? 

My Practical Solutions:
  1. Remember to take a hard copy of the doctor’s prescription in the event you lose or misplace your supply. Pharmacies abroad are not hard to find. My RA specialist assured me that in Europe, research for my medical condition is much more robust and treatment more advanced than in most countries including mine.
  2. Take a carry-on suitcase in the airplane that can hold an insulated bag with ice packs for medications that must be kept cool. When traveling, I made sure the medications were accessible in my carry-on so I could take them as scheduled. Yes, there are risks to not taking the medications as scheduled. The highest risk is an increased likelihood that the worst of the symptoms could flare up. I also carry up to eight resealable plastic bags of various sizes for ice cubes. I used ice cubes to cool my tired or pained knees or other joints while in the airplane. Flight attendants were helpful in this regard. Just ask nicely. Double up the plastic bag with a barf aka vomit bag as it is designed to lessen leakage, most important once the ice has melted. Most hotels, hostels or albergues have a refrigerator and will freeze the ice pack overnight for no fee. A frozen ice pack while in transit will keep medications cool as required. 
  3. Keep a daily reminder to take medications on time, and be aware of the difference in time zones. I set my phone calendar and alarm clock to help me stay on track. The adverse consequence, if I didn’t, was enough incentive to stay on schedule.
Why Vulnerability to Feelings of Dejection? This feeling of dejection could come and go like a nightmare. It is common among people afflicted with a chronic and debilitating disease. The nagging pain and feeling of helplessness are enough to lower stamina. Invariably, a lowered stamina and a compromised immune system are just two of the many potential side effects of the prescription drugs. If I had internalized what the first consulting physician said to me three years before, my life might have been doomed forever. If at any point in my health journey, I had chosen to stay under bedcovers in an unlit room with curtains drawn closed, sleep in or mope about at home, my mental outlook would be totally different today. It is so easy to see only the darkest clouds over the brightness of day with this disease. 

My Practical Solutions:
  1. Expand knowledge about the disease. Recognize that any increased mobility serves as signal that it’s okay to get up and get out of the house, even just to go in your backyard or the other side of the front door. I did so with doctor’s approval.
  2. See a Mental Health Specialist as needed.
  3. Consume healthy drinks and meals. I was diligent in making fruit and vegetable smoothies about one year before my summer travel abroad. I limited consumption of meat and rich foods. My go-to meals usually included wild fish and organic chicken or turkey, spinach, broccoli and yellow squash.
  4. Read travel magazines and blogs with photos to conjure up beautiful locales to visit. 
  5. Sign up with a gym for chair yoga, aqua aerobics, stationary bike or whatever the doctor may have ordered for physical therapy or activity. 
  6. Seek out and socialize with closest family and friends. Dine out, listen to jazz or other music of your choice, or attend a rally for social justice with your significant-other. Engage in whatever moves you. I subscribe to all these activities and more. Although each step towards increasing human interaction or taking up an activity or cause might be daunting at first, I gave myself permission to push one day at a time at a pace of my own choosing. Lo and behold, a rhythm to a redefined life routine eventually took form. The possibility for a renewed vigor or a new normal can invariably transform a chronic illness into a manageable one. It takes time, but worth the effort. Take deep cleansing breaths if possible. One never knows, I might just see you at the Prado Museum in Madrid or at an outdoor cafe in Barcelona or Porto. 


Travel Made Possible

While at the peak of my experience with RA, my body was ravaged with excruciating pain, I was overwhelmed with frustration over my immobility, and filled with guilt for my complete dependency on loved ones. RA was life-changing. Understandably, I never imagined in my wildest fantasy that I would ever travel again. But one day in June 2014, a small seed of hope was planted. The photo you see was taken in 2014 by my husband, Dr. James Sobredo, a university professor who never goes anywhere without a camera in hand. It is one of a few photos of me in a wheelchair. It was taken at his second solo Photo-Documentary Exhibit, at a time when the severity of my “RA biomarkers and symptoms were off the charts,” as my trusted treating physician puts it. Too sick to attend the artist reception, hubby encouraged me to view the exhibit days later. Filled with anxiety, pain and fatigue, I managed a smile as he wheeled me into the Mexican Heritage Center and Gallery in my hometown in California. Voila, thoughts of simple travel were planted.


 Lu In a Wheelchair: Visiting with Jennifer. Photo ©James Sobredo, 2014 

One can say that easing back into travel with RA really began in my hometown, began when my husband insisted I get out of the house and view his photo exhibit. He and my treating doctor were convinced, I was ready for the next phase of my health journey. It was up to me. It might help others to know that the two precipitating factors critical to improving my health, which then emboldened thoughts of travel were: the right doctor and a support network.

(1) Find The Right Doctor. It did take three months to find an RA specialist whose demeanor, training and integrity better suited my ideal of a trained medical provider. Playing as my own patient-advocate and with support from my primary doctor, I found my RA specialist. He is refreshingly honest without being disparaging, firm yet caring and personable. He keeps up with the latest research in the field, and this gave me hope. By the time we found each other, I was nearly immobile.

The featured photo chronicles the first time I was seen in a wheelchair in public by friends in the community after almost one year of near immobility, and playing the recluse. This may not come as a surprise for some, but after being placed on a regimen of strong medications that inhibited my immune system, my family and other caregivers took great precaution and kept me away from crowds. I could not be around anyone who might show signs of coming down with a cold, flu or any infection. It could prove harmful, even potentially fatal for me.

Travel was made possible only after finding the right doctor for me, exploring treatments that worked to decrease symptoms. Decreased symptoms paved the way to increased functionality that I call my “new normal.” I have accepted for now that the normal I knew pre-RA may never be again.

Gratefully, the treatments eventually led to improved functionality, so much so that the doctor required that I increase my physical activities. He said, it was time to rebuild muscles lost due to immobility and lack of any significant physical movement. Since I exhausted my eligibility with my health insurance for any additional physical therapy, I enrolled at the neighborhood gym. As I gradually pushed my body outside a safe threshold of movements, the pain became tolerable. Within four to six months of aqua aerobics, chair exercise, and stationary bike, my pain became more manageable and the excruciating pain became an occasional nagging discomfort. I understand, that the RA will always be with me, but I have stubbornly refused to let it define me.


Aqua Exercises with a Physical Therapist. ©James Sobredo, 2014


When I found courage to set goals towards enhanced functionality, I resolved to experience a life lived fully. It was also comforting to visualize that with an ever increasing functionality, my ever loving caregivers can be given reprieve as I grow less and less dependent for everyday needs. 

(2) Value Your Support Network. Loving people in my circle of family and friends cheered me on and prayed for me every step of the way in my journey to improvement. My husband is my stalwart caregiver. Playing second chair in my caregiving network were our son Adrian and friend Steve. No matter how seemingly trivial the progress, such as standing on my own from my bed to sit in the wheelchair was something we celebrated together. I am also reminded often by what my RA specialist impressed upon me, and this became my mantra. “If I believe I can walk again, I will walk again.” I meditated on these words: the medicines and physical therapy sessions will only be effective based largely on the thought that goes on between my two ears. I am convinced that believing “I can walk again,” made the difference. I also learned to feel comfortable asking for help. I walked again, with help. I still have the disease. I still have symptoms, but they are less pronounced. And I traveled again.  

My Son, a Walking Cane and Unexpected Challenges Encountered

The travel was definitely made possible because I had achieved improved functionality. Without a doubt, my capability to travel happened with assistance and companionship from my son Adrian. In Madrid, Barcelona, Porto, and elsewhere, when faced with tall stairs and escalators at airports and train, bus or metro stations, I couldn't hide the look of panic and sheer desperation. The antidote was a quick assurance from my son, “Mom, please don’t worry, stay here while I look for the elevator.” When visiting old cities, I expected that the buildings might not be disability-friendly. And they were not in some places. Although I struggled in navigating stairs in these places, my foldable walking cane was invaluable. As shown below in a photo of me with my cane and my son at Monserrat--a mountain top monastery in Catalonia, Spain, the walking cane became my security blanket of sorts. Helpful too, was my son readily taking any purse or bag I was carrying while sightseeing. And when crossing streets, traversing pathways of cobblestones and walkways undulating seemingly endlessly, he guided me by holding my hand, arm and/or elbow. And all was well. 


What appeared to be little chores as part of the travel experience were not so little. After instances of frustration trying to purchase tickets at wall kiosks in metro stations, my son and/or husband took over. In as much as I desperately wanted to prove my growing feeling of independence, i swallowed my fragile pride and accepted their role in my travel experience. Besides, both had better aptitude in transacting in Spanish than I did. Although I was pretty good at it, if I should say so myself. We would later laugh over dinner about how hard I tried to be self-sufficient. 

Other than stairs, you’d never believe what else I found challenging? The bathtubs in hotels. This was true regardless of the hotel being a five-star or three-star. The bathtubs or shower stalls tended to be built tall. With my disabled knees and unsteady balance, I required assistance getting in and out. I took a shower only when my son or husband was around. It was a small inconvenience I was fine with.

When I asked my son what it was like to be a full-time caregiver-on-the-go for his Mom, his response made me tear up: “It is not about me or how it makes me feel. It is about you. I am here to see you can travel; to see that you’re safe.” 

So, while basking in the beauty of the Sagrada de Familia Cathedral in Barcelona designed by the famed architect Antoni Gaudi, being enveloped by awe and joy around the works of masters at the Prado Museum in Madrid, I celebrated life with my family. I delighted in the company and hospitality of our adopted/honorary family in Spain and Portugal. Whether walking the royal gardens and feasting in incredible cuisine with our friends in Aranjuez, or having high tea with friends in Porto, I resolved to keep my disability in the background. 

Unexpectedly, tears flowed freely down my face when I sat in the pews among the pilgrims participating in a deeply moving mass at the Santiago Cathedral. The mass was especially for the pilgrims who walked the Camino de Santiago, a pilgrimage I once took with my family in 2010 before the diagnosis of RA. The difference this time was I did not walk the Camino, I was not physically capable of walking the Camino, and yet I found myself in the midst of the solemn celebration. The realization that I even managed to reach Santiago with my disability, I lost it and sobbed in sheer joy. It didn’t matter this time that my family reached Santiago via public transportation instead of hiking the pilgrim's way, all that mattered was I made it there. 

So many memories were made during my summer travel abroad. One climatic moment in Spain is absolutely engraved in my memory. With my son’s help, I walked down a paved ramp that sloped onto a beach and I dipped my feet in the waters of the Cantabrian Sea in Foz, the coastal waters of the Atlantic ocean. Unbeknownst to me, my son captured the joyous moment on video. Foz is symbolic in my life, as it represents a place I feel comfortable calling home someday.

My husband was instrumental in cajoling me to join him in Barcelona, and several awe-inspiring places in Spain and Portugal. I am forever grateful for the travel arrangements, and for recommending our son join and help in my travel. Yes, my diagnosis of RA is a constant companion, and the discomfort of the symptoms visited me on and off during my travel abroad. It was far from easy, but I remained unfettered. Thank goodness through it all, my son was a constant companion. My husband was not far behind to encourage, push and if necessary chide to get me out of disparaging thoughts. The perceived obstacles were not at all obstacles. They were an inconvenience and became obstacles only if I had let them. Traveling abroad with my son, precious. Asking and receiving help, humbling. Traveling with a disability, my welcomed new normal. And without a doubt, the travel fever in me has been awakened. 

Wondering where to wander next? That is part of the fun of a life lived fully. Come off that fence of doubt about travel while disabled. Come join the journey of discovering new places or familiar places abroad with a fresh outlook about traveling with a disability. 





Essay ©Lu Sobredo, Written August 30, 2016. Guest Editor: Ken Miller. 
ALL RIGHTS RESERVED



Comments

  1. Elena Buensalido Mangahas, thank you for your comment about my blog. Others have had difficulty posting their comment to this page so I am adding them here: "This is an awesome blog, Lu! I appreciate your kind and loving intent to share you personal experience to the next person with hesitation. Those who are in the travel service industry side can also benefit from your candid narrative. Celebrate the brave woman at every mile!"

    ReplyDelete
  2. Tess Crescini, thank you for reading my blog and for trying to write your comment:
    "I wrote a lengthy comment on your blog appreciating your courage and what it triggered in me and pushed publish but it disappeared! Anyway, I love your blog."

    ReplyDelete
  3. This comment came from my niece in Canada, Sarah Gustilo Arevalo: "Tita Lulu you are truly inspiring and awesome!! Your strength and determination to battle RA is amazing!! I have to share your blog with my mom. One day my family will visit you. I want my kids and hubby to meet my amazing Tita Lu❤️"
    Thank you, Sarah dear. Will connect soon.

    ReplyDelete
  4. Thank you Karen Hannah for your comment in response to this essay: "This is a beautiful piece, Lu! I especially appreciated the suggestions about keeping medications refrigerated, along with how to navigate the airlines/airport. Thank you for the reminders that I'm not alone in this journey."

    ReplyDelete
  5. Since the comment section was not accessible, I am posting Comment to this blog from my friend Cathy Eldred who wrote:
    "Thank your for posting your "game plan" for meeting the challenges of travel. I plan to adapt some of your strategies for myself the next time I venture beyond my home city."

    Thanks, Cathy. Til the next post.

    ReplyDelete
  6. I am so glad that you trusted yourself to tell your initial RA doctor that you wanted him to give you a report that you could then discuss with your PCP and develop an appropriate care plan for your needs. So often, people will be reluctant to say no to a physician.

    Many years ago, I was under severe stress at work, experiencing heart palpitations and strong anxiety. My regular PCP was unavailable so I had a sub, who wanted to put me on sleeping pills and anti-depressants. I knew what I was dealing with: deep grief at the passing of my co-worker and having inherited her workload on top of an already demanding load. Also dealing with grief from the passing of a dear friend who was a second mother for me. I needed TLC, not medication to make me a good worker bee. Once I knew what was going on with my heart-that it was a stress response, I knew I needed TLC, I wanted it. I told the doctor I would not fill the prescriptions. She said she would note in my file that I was combative and uncooperative. I walked out, went to a luxury spa next to the building where I worked and booked the works as far as massage and TLC were concerned. As it turned out, the massage practitioner was a friend of one of the attorneys at work and he'd heard a lot about the very demanding atmosphere there. Having that sympathetic attention and physically soothing touch was so helpful and empowering. I became a loyal client of the massage practitioner, following him when he went into his own private practice, until he changed careers to provide financially better for his family.

    My point in all of that is the importance of trusting yourself when it comes to your treatment plan and the very good fortune of finding providers who listen to you and involve you in the decisions for your care. Making empowered decisions is so beneficial for health care in the short and long term.

    So glad you were able to do so, and that you continue to!

    ReplyDelete
  7. Thank you, my dear friend Karen Johnstone for the thoughtful comment. I am with you on this topic. I have learned during this journey life with a chronic illness that I have the most vested interest in my own well-being. Trusting the voice in my head and my personal response to the situation have been crucial.

    I am determined to continue with this blog page to encourage others, especially women, to return to trusting our instincts. One of my future topics to write about will include stories of courage, that despite illness, we find a path to heal the self, travel and deepen friendships. With your permission I will include snippets from you.

    Til the next post...Hugs.

    ReplyDelete

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