A 30-something couple enters the airport, hand in hand, with a purse, a backpack, and a small roller bag.
Nothing about them is exceptional. There are no characteristics that would warrant a second glance. They are not juggling car seats and squirmy toddlers. They don’t have the frantic look of travelers who overslept and may miss their flight. There are no dogs in carry-on cases or skis to check at the counter.
If you noticed anything about the purse on the woman’s shoulder it may be the jaunty Marimekko fabric, but even with that extra moment’s notice, you would have no way to guess that knocking around inside it, with the requisite wallet, keys, and sunglasses are also: a list of hospitals in the area the couple is traveling to, documentation of purchase of the most comprehensive trip insurance available, a list of medications, bottles of medications, a container of hand sanitizer, a jar of Airborne, a packet of Clorox wipes, Thieves essential oil spray, and a blue plastic vomit receptacle.
If you were walking behind them, the only thing you may notice about the backpack is the way it droops low on the woman’s back, a telltale sign of the weight within. If forced to guess, you may say that the backpack contains a book, a tablet, a laptop. You would be right, and…nestled in with those items are also ten cans of doctor-prescribed nutritional formula, an empty 60 ounce syringe, a plastic tube called a mic-key, and a doctor’s note on University Hospital stationary, vouching for the need for these larger than 3 ounce liquids.
If you noticed anything about the suitcase pulled by the man, it may be the bright blue color of the bag or the green handle tag with the words, “The Greater Go” printed on it.
You would never guess that The Greater Go is a travel agency specializing in booking travel for people with disabilities, the same one that has booked the few trips he’s taken in the last few years.
You wouldn’t know that zipped inside that blue bag, along with boxer shorts and pairs of jeans, is a “night bottle,” a large plastic jar with accordion edges and tubing, used to collect urine when connected to a urostomy pouch at night.
You wouldn’t imagine that extra urostomy pouches, mic-key tubes, or packets of gauze are in and around the packed toothbrushes and pajamas.
Even if the contents of that blue suitcase spilled onto the airport floor, you most likely wouldn’t realize that the shirts and jackets inside have SPF built into them, for ultimate sun protection, in hopes of preventing skin cancer #83.
You may notice the young man being pulled aside at security, every inch being patted down long after his wife sailed through the line. Seeing this may make you think he pulled the short straw that day or, perhaps, forgot to remove his belt with the metal buckle.
You would not guess that he goes through the humiliating and awkward process of describing his situation and then lifting his shirt to show these strangers his urostomy pouch and his g-tube every time he travels, along with the disclosure that he has a metal hip. He stands vulnerable in the most chaotic part of the airport, while security guards frequently use this moment as a training opportunity for newer guards. After they pat him down, while saying never-before-heard statements such as, “A hip replacement? But you’re so young!” they make him pat down his urostomy pouch himself, jostling the urine inside as they stand and stare. After that, they test his hands for explosives.
Every. Single. Time.
If you are in the area afterwards, you may see a man with a stoic, brave look on his face, patiently zipping his jacket and slipping on his shoes. What you cannot see is the humiliation, anxiety, and exhaustion this exchange has caused him.
A time that you would, perhaps,
take notice of this young, healthy-looking man,
would be at the gate,
if you saw him stand and get in line
upon hearing the announcement for those needing extra time to board the plane.
And with that noticing may come
judgment,
questioning,
glaring
on your part,
which is exactly why he will not board early,
even though he needs to,
but will,
instead
wait for his zone to be called.
If you are on the flight, you may see a moment of indecision and jostling as the couple determines who will sit in the aisle seat and who will be in the middle.
What you can’t see is that the wife, whose role as her husband’s caregiver necessitates that she is on high alert at all times, who is always making sure that her husband’s environment meets his medical needs, is looking around the cabin at the passengers nearby. She is listening for coughs and sniffles, trying to determine which seat would best keep her immune-compromised husband safe from germs, while keeping in mind that the avascular necrosis in his remaining hip often flares if unable to stretch out during the flight.
If you notice the couple taking a selfie before take off, you may roll your eyes and assume it’s their generation’s obsession with self-promotion and addiction to Facebook and Instagram.
Yes, and…this couple’s selfies are often taken at the hospital or clinic and on this one day, they are taking advantage of having a photo background like those of their peers.
You may see the young man donning a pair of Bose noise-cancelling headphones and assume he’s listening to music or drowning out the crying infants on the flight.
True, and he’s avoiding the in-flight conversations with seatmates that inevitably turn to, “So! What do you do?”
To this question, his answers vary from, “I used to be the director of a non-profit that supports orphans in Latin America and the Caribbean,” to “I’m a professional patient,” or sometimes, “I’m on disability.”
All are true and all lead to awkward follow-ups and questions, some of which are bound to include not-so-helpful statements such as, “Well, at least…” or, “You’re getting better, right?” or the best, “My cousin’s neighbor once had…”
Typically these conversations occur before the plane even takes off, leading to a flight full of side eyes and suggestions starting with, “I read this thing once…”
Hence, the headphones.
You may see the young man taking a nap for the duration of the flight.
What you can’t know is that the energy it took to get from the doors of the airport an hour ago to this seat were more than he has in his reserves and that he is now completely depleted.
If you saw that the woman ordered a vodka soda for the flight and assumed she was anxious about flying, you would be partially correct.
Crashing is the last thing on her mind.
Instead, avoiding a medical emergency while 30,000 feet in the air, getting her husband from this flight to their final destination in one piece, surviving the duration of the trip that is about to occur without needing the list of hospitals in her purse or having to use the trip insurance policy they don’t travel without – those are the things consuming her mind.
You see, being a caregiver “on vacation” means taking care of the same things she does on a daily basis x 150.
Hence, the vodka.
After the flight,
the walk from the gate to passenger pick up is epic.
Although there is a long list of reasons why
this man needs a ride on
this cart,
you will not see him use it.
For if you did,
your eyes would see only a young healthy man,
and your brain and your heart and your conceptions
about what people who need that cart look like,
would not understand.
He knows that.
He knows that you cannot see the invisible passenger on this and every trip with him.
He knows that walking from the gate to the baggage claim,
though hard on his physical heart,
is easier on his proverbial one
than feeling the looks and sensing the judgement of those who think there are only two of them on this trip,
not three.
The couple purchased no ticket for their invisible traveler and yet it is with them every step of the way, hiding there in the negative space, a fundamental, yet unseen, component of who they are, what they need, how they exist.
Perhaps, as his health declines, there will come a day when this traveler will appear in a form that fits inside the box of what people picture when they think of “disability.”
Perhaps then the couple will use the resources and get the help they need without stigma or guilt or shame.
How strange to wish, even in one small way, for worsening health, just to be able to fit into a box.
At the end of the day,
A 30-something couple exits the airport, hand in hand, with a purse, a backpack, and a small roller bag.
Everything about them is exceptional.
You just can’t see it.
28 Responses
So incredibly powerful….hugs…
Thank you Dianne!
Thank you for bringing this amazing perspective to those who have no idea— such a powerful blog 🙏🏼
Thank you Lindsay!
I learned about your blog tonight. I have read this from back to front (this being the last). You have a gift of being able to explain what our lives (both you and me) are all about. I, like you, cherish evey day. I admire you and wish your family the best of evey day.
Thank you Laurie! I’m so glad Annette shared my site with you, as our lives are on such similar paths. I hope we can meet someday…preferably NOT at the clinic or hospital. Peace to you and your husband.
Wow, what an amazing explanation of what traveling with an invisible disability is like. From the weeks of planning to the inevitable pat down by TSA because of medical supplies to longing looking at the carts while your heart pounds as you walk between terminals, but knowing it’s not worth the explanation to ask for help etc. I have always said traveling with an invisible disability is like planning for and taveling with a toddler about to throw a tantrum! Even though it’s hard I’m glad you guys were able to make it work to travel, while it may not look like it to the world that’s a huge accomplishment!
Thank you Megan! I remember well what it was like to travel with our daughter as a toddler. I held my breath the whole time! One benefit though, was that even though people weren’t always patient with her, they could see easily that she was young, whereas with Sean, they can’t tell just by looking at him.
We love you! That is all I can say. We love you!
That is all you have to say Kate. Thank you!
Allison,
There are no words. Thank you for sharing this.
I sit here. Literally. I. Just. Sit. Need some time to wrap my head around oh so many things. There is strength in transparency. To a strong expectional couple…there is a woman in Michigan….who is just sitting.
Sitting. Thinking. Praying.
Karen Burd
Karen, this comment is so beautifully written. Thank you for letting my words and experiences cause you to think and for taking the time to do so.
"There is strength in transparency" indeed. That is my goal with thenegativespace.life. Glad to have you on this journey with me!
I’m writing to you from Dubai to say that this is the most beautifully written piece. Mr. Langholz sent me the link… and well, let’s say say that it was perfect in every way.
I can’t wait to read the rest of your blog and hopefully connect… your writing made me stop… everything. This rarely happens and you managed to conjure up so many emotions effortlessly. Pls email me. Much love. Xxx Sara
Sara – Thank you for all of this! I would love to connect! Email me directly through the "Contact" button. Looking forward to meeting you! Allison
Allison
I love reading your blog. This particular one brought tears to my eyes that fell on my tee shirt.
I am so enjoying the way you discribe your reality. Secondly, I cry because it does seem so unfair and personal.
I look forward to reading all that you uniquely share😢😘
Thank you Teresa!
A friend from Minn. Reading Corp here in Mass. sent me your website. My husband has been suffering with serious cardiac issues since our early 20s, 30 plus years ago. Last fall, he had an LVAD ..left ventricular assist device, implanted in Boston,as a bridge to transplantation. When I first read your postings, I cried. Someone else was living my life, being a care giver to a chronically ill spouse, so much of your journey resonated with me. Just this past March, we were finally able to visit our son and daughter inlaw in Tennessee where my son is is in the military. We hadn’t seen then in almost 2 years. Our first flight/trip with all his new medical equipment, and believe me , it’s a lot and cannot be checked but carried on. The need for a wheel chair etc. When I read this latest…I cried. It was us, just older and a different medical condition. Most days I am strong but some days….I am sure you know. Thank you for sharing your journey. We take it one day at a time, enjoy the good or at least better days and push through the hard. Our prayers are with you for strength and to find the joy when you can.
Cindy, I’m so glad you found the site (thanks to Liz, I think) and that it’s resonating with you – although I wish you didn’t "get it" because that means you’re deep in this world as well. I 100% understand the highs and lows of travel and how sometimes it feels not worth it. Feel free to connect with me through the "Contact Allison" link anytime. Sending love your way!
I can so relate.
My husband’s disability isn’t as invisible as yours, so I really appreciate the perspective of invisibility–it really helps me to empathize with you. Because we’re in this together. We don’t travel, or at least, not very often. Because schlepping a wheelchair, everything we could possibly need to take care of a possible medical issue, plus normal everyday "stuff" is a nightmare. And then throw in the complexity of finding a wheelchair accessible place to sleep, that is actually wheelchair accessible.
Thank you. For sharing your story, for existing, and for your real, vulnerable, but truthful tone. I hope we can connect as well, because caregiving is hard!
Sarah, Thank you for taking time to write and for your kind words. I’m glad that you’ve found my site and that this piece gave you a new perspective. As you said, we’re in this together! Sending love, Allison
Once again, an amazingly written piece that opened my eyes and touched my ❤️. Thank you, Sue
Thank you Sue!
A very well-written article. And I picked up a helpful source with regard to the SPF clothing. Thank you for sharing.
You are very welcome, Meredith! Coolibar is a company that specializes in SPF clothing. We’ve also found items made my Hanes that are less expensive and have it built in.
Dear Allison,
I met you and Sean at the FARF meeting in Atlanta last fall. This is a beautiful and deeply touching piece on the Invisible Traveler. I hope many people read this and that it invokes more compassion among travelers and airport personnel alike. Without harshness, you point out so well the assumptions people make and the judgmentalness of our society (not to mention the often irrational procedures that are carried out at airports). Thank you for this blog and your compassion.
Erica Jonlin
Hello Erica,
Thank you for your kind words. I’m glad that this piece spoke to you. Please feel to share so that we can do just as you said: invoke more compassion.
Take good care,
allison
You’ve described every trip we took with our daughter in the first three years of her life. When we traveled domestically, we would ship the cans ahead of time and take on the plane what we needed for the day. When we traveled to Europe (in-laws…) we checked an extra suitcase and paid for the extra weight. So…all this plus juggling the toddler and car seat. I blogged it all, every second, but never this, never the negative space. And never as beautifully. Thank you for saying what I couldn’t, and still can’t.