For as long as I could remember, I have always traveled with the intent of accomplishing something. Always with the burden of completing a list of tasks set either by myself or by another party. I never had an opportunity to travel for the sake of, well nothing. Seemed appropriate that after a year of extensive therapy and rehab since my surgery, I would have my first trip be just that, for nothing. And I can honestly say, it was the best trip I have ever taken.

How it started: Around the same time I had my surgery in May of 2014, a good friend of mine sustained a devastating injury to her back in an accident. She underwent a very risky surgical procedure from which she thankfully did well, very well. I give her my gratitude for then contacting me and two of our mutual close friends and inviting us on a trip to Florida.

The following are some things I have learned about traveling with a disability (temporary or not) and in general about the blessing of taking care of oneself. Do keep in mind, if you are recovering from surgery, then please be sure to have appropriate clearance from your physician before embarking on your journey. Always keep your provider in the loop.

Navigating the Airport

I learned quickly that if dealing with a disability, it is important to plan ahead. I was flying out of Bradley in Hartford, CT a relatively small airport when compared to JFK or Laguardia. Since this was my first time traveling after my surgery, I took into consideration the distance I would be commuting from check in to the gate and whether I would feel comfortable towing around my carryon. Given my weakness of the right arm, I knew wheeling a suitcase would not be possible so I packed a duffel bag instead. Even with this I tired quickly and I ended up checking in my luggage or relying on my friends to help. My thanks to JetBlue for not charging a fee for additional luggage (love them!).

Check-In: What to do with Adaptive Equipment

Adaptive Equipment: Leg brace and specially fitted orthotic shoes (SAS)

I was actually most apprehensive about check in, especially since I wear a leg brace, without which I have difficulty maintaining balance and walking. I was having dreams that it would be a hostile situation with a long line of people behind me while I was being reprimanded for not removing my shoes and leg brace in a timely manner to walk through a detector. Obviously that's an exaggerated dream but that's what nightmares are. What actually happened was quite the opposite. I recevied a lot of support by the airport employees and when I was next in line at check in, I was told to place my cane on the conveyor belt so that it could be taken in to be detected. I was able to keep my brace and shoes on and was then pulled to the side and a smaller hand held detector was used to scan them. After this, I was given back my cane and that was that. No impatient people behind me, no yelling or reason to have anxiety.

Boarding: Approaching "the Tunnel"

Once my ticket was confirmed, I was directed by the flight attendant to head down the jet bridge (tunnel) behind her to board the plane. For a larger airport of if I was traveling by myself I definitely would have utilized the airports handicap services. They are readily available and do not require pre-booking. The reason I say this is that the jet bridge can feel treacherous. There are portions where there are no handrails and since it’s a downward slope, those with some physical impairment could find the movement in this direction difficult. I did and relied on the support of my friends but realized for future reference I would definitely seek out assistance beforehand.

Accommodations

We stayed at a Hilton Hotel in Orlando, and the accommodations were great, although I think when you’re from the Northeast anything with palm trees is gorgeous. Since surgery, I have a list of things in my mind before making my trip (to anywhere) and these might be some you may want to consider as well: are there handicap parking spaces (I have come to rely on the wide spaces so that I can get out of the car with my leg brace without worrying about hitting another car), will the hotel bathroom tub be too difficult to get in and out of (my biggest fear with that is slipping while trying to get out), etc. Also, you might want to consider getting a hotel room equipped with handicap accessible furniture and fixtures. They also tend to be closer to the elevator. This may not seem like a big deal depending on your needs but we were at the end of a long hallway and by the end of the day when it's your third or fourth trip back, trust me, you'll be thankful for a closer room.

Taking care of oneself, and not feeling Guilty

This was by far one of the most relaxing trips I have taken and it couldn't have come at a better time. I’m not much of a sunbather or pool enthusiast beyond aquatic therapy at rehab, but that changed temporarily this weekend. I then added to this luxury by treating myself to my first pedicure/manicure since my surgery.

The remainder of the time was spent trying different local cuisines, relaxing by the hotel fire pits spread around the pools, and enjoying the company of my friends who were a tremendous source of support for me.

I found that the things which gave me anxiety proved to be nothing in the end. Sometimes we prevent ourselves from experiencing that which can bring us some peace, some happiness, and some much needed confidence only because we imagined the worst. Also, I didn't feel guilty for taking time for myself. If anything, I learned that it is important to recuperate emotionally and mentally just as much as it is to do so physically. You have to find time so that you can be your best either for you or for someone you are caring for. No matter how small or inexpensive, taking time to relax and refocus are essential, for you and those around you.

Well, until the next trip then...

10. Surprisingly, it’s the relatively “small stuff” that you remember as making you the MOST MISERABLE.

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Although I’ve had neurosurgery, spent hours cumulatively lying in an MRI machine, developed paralysis of my dominant side, and have been involved in extensive rehab therapy, I surprisingly did not and do not find these to be the worst things about my experience. In fact, I wasn’t aware of anything during surgery obviously thanks to amazing drugs coupled with an equally amazing anesthesiologist and this feeling of being in a dream like state lasted a few weeks after as well. As for MRIs, they can become tolerable by simply asking for a mirror to be placed inside to give the illusion of extra space. Trust me this helps a lot.

Interestingly, the things which I found to make me the most miserable are also the least invasive and obvious in comparison to other more harrowing events. First, having a suppository. Now keep in mind, I was completely paralyzed on my right side. Inducing a bowel movement in someone who can’t move is inhumane. Next, straight catheterization. This was by far one of the most uncomfortable and excruciating things my foggy brain retained in memory as a fresh post-operative patient. At one point, I begged the nurse to demand the fellow to order me a foley since a UTI was the LAST worry on my jetlagged mind. Equally as horrible are glucose finger sticks to test for blood sugar levels. My fingers went numb on my left side to match my already numb right hand. Luckily this was discontinued when the steroids were.

Lastly, my next offender is the Lovenox injection (blood thinner). These were the bane of my rehab existence. They are given once daily, under the skin (subcutaneously), usually where one has the most fat accumulated. In my instance, it could have been anywhere, but we opted for the belly. The injection site BURNs for up to five minutes after administering and it was so bad that the only way I could entertain myself was to play “Happy” by Pharrell and laugh because I felt anything but.

The best part about all of this is that all of the items I have mentioned are those which I have ordered for my own patients as a clinician. To experience them myself, gave me a whole new appreciation of what my surgical patients endured. Karma, enough said.

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9. You forget many of the people you have met in the hospital.

Although unfortunate, you might forget names and faces of people who helped you in your time of greatest need. Luckily, I know I thanked them. Actually, I even offered them my food and drinks. I was so high on meds, I probably would have offered my kidney if asked but luckily I wasn't. My family and friends tell me I was the nicest patient they have ever met. Thank God since as a clinician I would often joke with colleagues that I never wanted to be that crazy combative or verbally abusive patient one would sometimes encounter. It can happen to anyone so if it was you no shame, we (clinicians) don't hold grudges. I digress, but I have always have been one of those people who goes out of her way to introduce myself and become acquainted with others who I encounter, in whatever capacity. I’m a little embarrassed, and yes I realize given the circumstances it happens, but I don’t remember the names of some people who cared for me post-operatively and earlier on in rehab, regardless of how amazing.

8. Laughter truly is the best therapy.

Image obtained via Pixbay (no attribution required).

I have taken a variety of medications since my surgery at various points postoperatively, but nothing can make you feel as good as a big dose of laughter. Multiple doses to be exact, and no you can never overdose. I think it was in rehab when I first laughed and I just remember letting go completely. It felt like a fresh breeze. I loved to laugh with my nurses, PCAs, techs, and therapists. I had this routine where when I was being returned to my room from therapy, being that my room was the closest to the nurses station, I would burst out in a Salt ‘n Peppa verse. “Salt n Pepa’s here, and we’re in effect”. The nurse on duty that day would respond, “Want you to push it back”. With everyone then chiming in the chorus, “ooh baby baby, ooh baby baby’. Laughter literally was one of the most important things that influenced my recovery as humor is a big part of who I am. It helped me take care of my mother when she was diagnosed with leukemia, my patients when I worked clinically, and it helps me today as I have dealt with and currently face the uncertainty of anything surrounding my brain tumor experience.

7. Follow-up MRI’s and doctor visits can be a scary thing.

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May 13th 2015 will be my one year anniversary and as of yet my MRI has been negative. The first year after surgery the monitoring is every three months and now I can progress to every six months. Although the results have been negative, I still get just a little worried every time I go in to see Dr. Diluna. Just that brief moment as he walks into the exam room door I think, “what if there is a recurrence”? Then all of the possibilities run through your mind and you think, I just never want to have surgery again and I think anyone that has undergone this can agree. I am grateful that there are measures today which can be taken to eradicate patients of disease; however, once is ideal, and even that really is too much.

6. Even after major life altering events, eventually you find yourself worrying about the same things you worried about before.

Initially after my surgery, I was on a high, and no I am not referring to the feeling of euphoria induced by narcotics. I am referring to the feeling of extreme gratitude for being alive and in my instance for being neurocognitively intact. Prior to surgery, I told Dr. Diluna, all I want is to wake up the same person. So after surgery, I was ecstatic that despite the fact I couldn’t walk or move my arm or leg, I could still tell jokes, no matter how corny. And if you’re wondering why I didn’t sit in my room at rehab everyday crying all the time, it’s because I’m a glass half full kind of woman and this has served me well. But even with all the gratitude, after the initial first month of being in rehab, I found myself worrying about the same things I worried about before surgery.

My student loans (I owe what most people pay for a mortgage), cell phone charges, car payment, car insurance, the list goes on. Luckily, I had savings, not tons but enough for a few months. It’s scary since I knew it couldn’t last me forever and not being employed at the time I worried about that too. My advice, get as much of your life figured out as you can before being diagnosed with a brain tumor and good luck with that.

Vanity was another thing I never thought would seem important anymore, but as Maury Povich would say, “the lie detector test revealed, that too was a lie”. After losing most of my hair from the stress of surgery and steroids, I saved and bought hair extensions once employed. Necessity? No, but feeling good about yourself affects your ability to perform optimally both socially and professionally.

5. Food and everything that once had flavor, no longer tastes that way after surgery, at least for a while.

I knew that patients could develop "metal mouth" or an altered sense of taste as a result of medications as it happened to my patients and my own mother as well from chemotherapy, but I was not expecting this oddly enough, for myself. I was completely blindsided when I drank my favorite poison, Diet Coke, and I almost wanted to vomit. I just remember it tasting awful and thinking my brother got me a dirty cup or some crazy flavor like root beer. The interesting part is the only food that tasted good was the food at the cafeteria and takeout Chinese. This lasted even when I was discharged home for about two months. A total of about four months after my surgery my taste started normalizing. Until then I would have cravings but once the food arrived or was prepared I couldn’t stomach the thought of eating it.

4. Pain medicine can result in very serious nightmares.

Even as I type this, I can’t help but imagine a commercial voice quickly reading this as side effect in one of those pharmaceutical ads. At first I had some intense nightmares while I was in rehab due to the narcotics and steroids and eventually, I opted on just taking Tylenol, which also helped eliminate the need for any evil suppositories. Often, I would wake up from dreaming that a dark shadow was running around in my room or my craziest dream that I was sleeping in my bed in a conference room while my former colleagues were having a meeting. That for some reason was the most disturbing as I kept thinking I’m not dressed or prepared! I had to sleep with the door open for the remainder of my time in rehab so I could hear the nurses station when I awoke at night. The nightmares stopped as I was weaned off the medications.

3. Even clinicians are non-compliant patients.

To this day, almost a year later, I still struggle with compliance. When I see my neurosurgeon, primary care physician, or rehab internist I am always embarrassed to admit that I’m not always the most compliant with medications for spasticity. I actually had the audacity to ask my neurosurgeon to change my dose to once a day since TID (three times a day) was too difficult in between teaching classes. To which he smirked and gave me a mental, ‘are you freaking kidding me’ head nod. For those of you reading this that work in healthcare, a lot you know exactly what I’m talking about. Luckily not everyone, just think Dr. Oz and picture him having green tea and doing yoga. For me, I guess I can blame my mother who as an immigrant raising us in the 80’s would prophylactically give my two brothers and me children’s Robitussin even if only one of us was sick. Since she was gone all day for work, we’d each get all three doses for the day in the morning. My mom mentioned this ingenious trick she figured out to our pediatrician who kindly informed her this was not prophylaxis but dangerous and yes, she promptly stopped. Needless to say, I probably developed a bad once a day habit very young.

2. You should never doubt your patients.

As a clinician I sometimes I failed to see potential in complicated peri-operative patients . It was miracles that made you stop and take a moment to appreciate a greater intervention, beyond medicine, which saved patients. I've seen patients who came in practically lifeless but would walk out a few months later, a little bruised of course, but alive and grateful. Still, it wasn't until I became a patient and met others who were admitted to the stroke unit with me that I realized you just never know how much patients can amaze you. How much they can push themselves to reclaim some of the glory of a healthier, previous life.

1. You should never doubt yourself.

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Before my surgery, I saw a job posting for an academic positon and I thought I’ll be home a few days after surgery, I’ll apply when I have recovered afterwards. I had no idea I would develop paralysis and go to rehab. Even in rehab, much to the dismay of my physicians and nurses, I wrote my cover letter, granted it took me a lot longer than normal, and I submitted it. I was called the next day to schedule an interview but given my physical condition and at that point neurocognitive fogginess, I was not able to interview until 5 months later and was hired. It could have been very different for me had I not applied. I was told gently but repeatedly by my medical team and some family and friends to take it easy this year, apply for diasbility and just focus on recovering but I'm glad that at a point in my life where I was my weakest both physically and neurocognitively, I took this chance despite the great risk of being rejected. Now, when I speak about my experience with my students who are aspiring clinicians at the University of Bridgeport Physician Assistant Program, I make sure to tell them to never doubt their patients. I tell them, you will be surprised how far someone is willing to go to have something they think about night and day. I read the job description literally every day and it motivated me to work harder in rehab and continue to practice walking until I could walk into my interview. I saw my physiatrist after I was hired and she was in tears and stated she used to feel bad for me when I was inpatient because I was so passionate about teaching at UB and she didn’t think I would be physically able to.

Ultimately from my experience, I have learned my greatest and most difficult lesson to never doubt myself as I will have many opportunities to appreciate how far I can go to accomplish what others and sometimes even I myself have considered once impossible.