Mayo Clinic, America’s Calcutta
“You could always just show up,” my friend suggests, after having been denied twice, despite 2 different doctor referrals. The illustrious Mayo Clinic seemed like my last hope in helping to deal with the constant and ever increasing pain in my body. For years, people have been telling me, “go to Mayo Clinic.” I never really knew what that meant, but I was about to find out.
I booked a Monday flight to Minneapolis, thinking I was saving money with a $99 fare, only to realize it was a $240 cab ride to Rochester. Flights directly into Rochester were $340. It was all just as well, as I would need the last few hours to collect myself. I don’t walk well and would be traveling in a spiffy, burgundy red, portable wheelchair, which I purchased on Amazon so that I could tour my daughter’s college. To say I was scared to death would be putting it mildly, but it wouldn’t be the first thing I’ve ever feared.
I asked another friend, Lee, to take me to the airport, and actually bring me to the gate. When I told him I would just be showing up at Mayo Clinic’s St Mary’s hospital emergency room and begging them to help me, his deadpan reply stung, “I don’t think it’s going to work.” Well thanks for that vote of confidence. We arrived at the airport, stopped for an escort pass and the airline refused me an official disability transport person, due to him being with me. This turned into a small nightmare.
I’ve traveled using airport disability services for a number of years. They pick you up in a wheelchair, bring you directly to the front of the security line, and you are through it very quickly. Not this time. Lee was through the line in about 5 minutes, as I sat there, pushed off to the side in my wheelchair and waited for another 30, while hundreds of people went through security. I couldn’t stop crying, and the TSA agent 5 feet in front of me refused to even look my way. They finally sent an agent to push me through, and then proceeded to do a 20 minute frisk of my body and chair. Lee was aghast as he watched, and my tears continued to flow.
There was time for lunch, I needed the comfort of a Caprese sandwich, and it was off to the gate. Lee parked me at boarding, gave me a good luck hug and took off. I cried for an hour. First to board, I cried to the stewardess who pushed me on to the plane, as I was afraid they would lose my wheelchair, which happened on the previous college tour flight. She tried to comfort me, it won’t happen again.
The flight was quick, about an hour and somehow, I managed not to cry. They didn’t forget my wheelchair, but they forgot me, and there was no one there to meet the flight and push me. I sat on an empty plane for 20 minutes, until a whole new crew was actually coming on and then, I was pushed off to wait another 20 minutes before finally getting a transport person. And guess who’s crying again? Perhaps this is a common scene at a Minnesota airport? I find calm, as I am finally pushed to a town car awaiting me, and I settle in for the near 2 hour ride.
The driver was an older, chatty man, a retired psychotherapist. Perfect. I tell him my story and he totally supports me. We talked for the entire ride through Minnesota’s vast farmland, which was generously dotted with Trump signs, and by the time we pulled up to St Mary’s ER, I was ready to do this. He set up my wheelchair, helped me into it, gave me a little hug and said he would pray for me.
Away I was pushed by an ER attendant. It didn’t feel like I was in an emergency room, but rather an upscale office building suite, and I was brought to an intake desk. I gave them my name and birth date, which was fortunately in their computers, due to my previous referrals. They didn’t bat an eye when I told them I just flew in from Chicago, so I am likely not the first person to travel a long distance and just show up.
I was almost immediately triaged for vitals and then returned to the waiting room, for a long wait to a bay. It was the most comforting ER I had ever visited, and there’s been a few. I noticed a row of reclining chairs with one available and quickly headed over to them. If I had to wait in an ER, this was the way to do it. It was the night of the first presidential debate, which I so badly did not want to miss and as luck would have it, there was a big screen TV right in front of me. First making a cup of what would be delicious machined Toffee Coffee, I settled in for the show.
Given the conversation I had listened to for an hour prior amongst the farm family seated next to me, I knew it would make for especially interesting viewing. I wasn’t wrong and really disappointed to be called into a bay an hour in. Fortunately, it was playing on the TV in my room, as it was just outside of a desk and many were listening to it.
My nurses introduced themselves, and could not have been any sweeter. I told them my complaints of severe pain in various places and was asked when it started. Oh, that would be about 8 years ago. I gave them a folder, full of recent and pertinent medical records and CD’s, and all were loaded into their computers. It was as if I had prepared a manual on the condition of my body, complete with supporting documents, including photos and prescription records. The doctors also could not have been kinder and all of the staff had one thing in common. They listened. They never talked over me, never cut me off, they simply listened, asked questions, and transcribed.
This was a strange phenomenon for me, as I had been literally begging doctors to help me for many years. A year prior, while in the worst pain of my life, with knees that were grotesquely swollen, burning hot and barely able to walk, an orthopedic doctor would write in his report, “I strongly recommend she have some type of emotional evaluation. There is clearly some component of depression or other emotional conditions. I am certain she has a real disease, but it is not to the extent that it leads to her crying here in the office.”
My constant and severe pain was dismissed as hysteria, and a very real physical issue was labeled psychological, due to my tears, born out of extreme pain and frustration. Hordes of drugs had been prescribed to me. In spite of them, I became increasingly worse over a span of 7 years, to the point that I could barely walk and now needed a wheelchair to go anywhere.
Their listening alone was a comfort to me. They reviewed all of the medical records I had presented and took a series of blood tests. It was nearing midnight and having nowhere to go, I was hopeful they would admit me. Unfortunately, my condition was not warranting of a hospital admission and they had to tell me this. I could see it broke their hearts, I was crying, and they were so compassionate. They assured me, if I spent the night at a hotel, I would be able to arrange a doctor’s appointment at the clinic the next day.
I was prepared for this scenario and had a packed suitcase. A social worker visited and gave me a brochure with all of the Rochester lodging options, and there were many, sorted by distance and price. Because I was in a wheelchair, I picked a hotel that was directly across the street from the Clinic, The Kahler Grand. I called and they had a room available, which would cost me about $700 if I stayed 4 nights, through Friday. Given that I needed to see multiple specialists, I hoped to get a few appointments in within the 4 days. I booked the room and was taken there by taxi, just after midnight.
Welcome to the world of Mayo Clinic.
Despite the fact that the ER had just kicked me out, I was ecstatic and hopeful that I would receive the treatment I so desperately needed. Starving, I ordered what wasn’t the best pizza in the world at 1 am, and then tried to sleep, so I could get up and on the phone at 9 am. It was hard to fall asleep, as the bed was very hard. The Kahler has seen better days, I am certain, and they might consider things like new, comfortable, pillow top mattresses, for really sick people.
Every 20 minutes or so, the room refrigerator condenser would loudly recycle itself, not helping. Add the door, which you could likely slip a golf ball under, so you could hear every last word spoken in the hallway, and the maids who knocked on it to clean every day, in spite of a “do not disturb” sign, and it’s clear that the Kahler’s biggest draw is simply its location. On the plus side, the staff was friendly and they have the best open faced turkey sandwiches on the face of the earth. If the rooms ever become as comfortable as the food, it just might be the perfect place to stay when visiting Mayo Clinic.
I was armed with phone numbers and an information packet on making appointments, awake and on the phone at 9 am. They refused me appointments with rheumatology and general medicine, as they had done so previously, but I had managed to get an inside referral to another specialty, dermatology. As told to me by a friend, “it doesn’t matter if you see a penile erection specialist. Once you’re in, you’re in.” No truer words were ever spoken.
The appointment wasn’t until Thursday, giving me 2 days to hang around the hotel and play Santa Claus. I do a great deal of charity work, including running a Letters to Santa program through Chicago’s public schools. I’ve suffered with severe and worsening pain for 8 years, and giving back to children in need makes me feel like a productive human being, which helps, given my ever increasing loss of physical abilities. It is truly medicine to me and I am so grateful for the outlet. I serve thousands of children, many of whom are disabled and in wheelchairs, and they are a huge inspiration to me.
On Wednesday, I ventured out, pushing my own wheelchair a few blocks to buy some band aids and snacks, and pick up some small bills for hotel tips at a bank. The streets were filled with clinic staff and patients alike, and I stopped often to rest in my chair and take in the healing vibe that is downtown Rochester. Cafes, boutiques, coffee shops, and most doors equipped with handicapped access. It is America’s Calcutta and thousands of people with countless afflictions flock here from all over the world each year, in hopes of getting well or even saving their lives.
Downtown Rochester revolves around 2 majestic structures that seem almost holy, The Mayo and Gonda buildings. When you enter them, it feels as if you are in a fine art museum, not a medical office space. It’s not unusual to hear a live pianist or choir singing just about anywhere in the buildings and at any given time. My first encounter was a giant sculpture, which I thought was Jesus Christ, that hangs near an entrance on a multi story wall of the Gonda building. I would later learn it was a work called Man and Freedom by the Yugoslavian artist Ivan Mestrivic and has been at Mayo since 1954. It took my breath away, and almost made me forget why I was there. I was compelled to take a picture. Everywhere you look, there is something beautiful to see and it creates an innate feeling of peace and comfort.
Most everything downtown is connected to these two buildings, via an elaborate subway tunnel system, which is filled with shops and services of all kinds. The surrounding hotels and medical buildings are all accessible to the clinic, without ever stepping foot outside. The majority of visiting patients stay at hotels and use the subway, or a myriad of offered shuttles to get them from place to place. There are countless hotels within 5 miles and all of them cater to Mayo patients and offer shuttles to and from. When you are standing in front of the clinic, it sometimes feels like grand central station, as there is a constant announcement of shuttles boarding, along with their destinations.
Thursday would finally arrive and I headed over to my early morning dermatology appointment. I pushed my own wheelchair and likely walked more than I really should have. From then on out, I relied on help. I had to learn not to be ashamed to ask. Most people visit with family members who push them about, but I was alone and had no choice. There is a huge staff of patient transporters who will take you to and from various appointments. It’s their job and they won’t even accept tips, so I learned not to feel guilty and really appreciated them. They truly went out of their way to make me feel at home, especially Michael, who would deliver me to the Kahler for a final open face turkey sandwich when last in town.
Arriving 45 minutes early, I was asked to fill out a multi page medical history questionnaire. I was called in to my appointment shortly after completing it, 15 minutes early. The office was beautiful, again resembling a modern, artful space, rather than a medical exam room. After changing into a gown, the doctor was in quickly. The first thing I noticed was his suit and tie, he didn’t “feel” like a doctor. Eventually, I would learn, this is what all doctors wear at Mayo Clinic, a tradition of the Mayo brothers. He checked over my skin, I changed, and we would then talk for nearly an hour.
He asked key questions about my health and listened carefully, while notating all I told him. Because the prior doctor I had seen at the ER had done the same and written a report, this doctor had read it and was already up to speed on most issues. He questioned me in more detail and referred me to several other specialists, as well as ordering tests that would be useful to the doctors following him. I would only get the opportunity to see one additional doctor during this visit, as well as get necessary blood tests before booking a flight home on Friday. Due to scheduling availability, I needed to return in two weeks to see others.
In a span of 5 days, I would learn what it really meant to “go to Mayo Clinic” and that education had only just begun. For my next trip, I would plan to drive and stay at a Comfort Suites hotel on the edge of town, and a 10 minute drive to the Clinic. The rate was half that of the Kahler, the reviews were much better and while not across the street, the rooms were fairly new and quite spacious and comfortable. No fantastic turkey sandwiches, but I’d be near the Kahler everyday anyway.
The drive from Chicago to Rochester is about 6 hours. My initial trip flying took about 8 hours in total, moving in and out of cars, wheelchairs and airports. It seemed the front seat of my car would be infinitely more comfortable for 6 hours. I had been pretty much home bound for several years, given my swollen knees and inability to walk, and I couldn’t remember the last time I saw the changing of the seasons. Driving and music make me really happy, and I truly welcomed the trip.
Now a seasoned Mayo patient, I had learned how to travel while sick, and I filled my old car with all the comforts of home imaginable. From the protein shakes and bananas I have for breakfast each day, to my softest blanket and 25 year old teddy bear, I was ready for this. I even joined the AAA motor club, just in case. Of course, my trusted red wheelchair came along. The drive was beautiful and the songs made the hours pass like minutes. Before I knew it, I was in the rolling hills of Minnesota and the lounging cows and nature surrounding felt like a little piece of heaven to me. My only regret was not stopping at the Amish Ovens, just prior to arriving in Rochester, but I would take note of it.
I drove down on a Sunday and arrived about 3 pm, checking into an ADA room. It was quite comfortable and I unpacked my many bags and stocked the fridge with water and breakfast drinks, before settling in for what would be a busy week of appointments. I cuddled with my teddy bear and iPad and went to sleep early, in preparation for my 7:30 arrival time at the Clinic, which meant waking up at 5:30. While the hotel offered a shuttle to Mayo each morning, I preferred driving there and using their valet parking services. They are inexpensive by Chicago standards, and the wonderful staff helped me unload and reload my wheelchair and bags each day.
Upon arrival, you check in at a concierge desk by showing them your weekly itinerary, as they call it, and a patient transporter is ordered to bring you to your first appointment. The valet parks you in a specific area near the elevators, between both the Mayo and Gonda buildings, which I have dubbed the wheelchair bus stop. Someone picks you up and from each appointment thereafter, another transporter will take you where you need to go. This includes to the blood lab, x-rays, office visits, tests and even to the cafeteria, where volunteers are available to bring you through the line and help you pick out the foods you want. I would often buy something extra and bring it back to my hotel for dinner, as the long days at the clinic can be grueling.
Your itinerary changes often, as office support staff try really hard to book appointments to the specialists that continue to be recommended. On occasion, you can get an appointment in an hour and they do their best to accommodate you within your visiting time frame. Unfortunately, many doctors are booked up and you may have to wait a few weeks between appointments, which means multiple weeks in Rochester. It isn’t cheap and it’s easy to understand why many can’t just “show up.” If it wasn’t for my credit card, I couldn’t be there either. If getting better meant going into debt, I didn’t care.
My second week at Mayo was fairly packed with appointments and tests, but all of the specialists still needed were not available, so I would need to return in 3 weeks. By now, I was an expert, no problem. If I did the car ride once, I could do it again.
My next appointment fell on a Tuesday and I drove down during non rush hours on Monday and once again, checked into the Comfort Suites. I remembered to stop at the Amish Ovens and stocked up on way too much junk food. One of the hardest parts of going to Mayo is spending your evenings in a hotel room far from home. There’s not a lot to comfort you there, so it becomes food, and it is hard to eat healthy or well on delivery and carry out menus. And once you discover Famous Dave’s Bread Pudding, you are completely doomed.
On the first day of my third visit, I was scheduled to see the doctor I feared the most. Almost immediately upon him entering the room, I broke down in tears and told him exactly this. He was so kind and for the next hour plus, I spilled my guts to him regarding not only the physical issues he would be addressing, but my very painful experiences with medical providers. It’s something very difficult for me to discuss, but this man’s compassionate ear allowed me to speak the words. When I left his office, I felt lifted, relieved and validated, after many years of suffering both physically and emotionally. There aren’t enough words in my vocabulary to express the gratitude I felt.
While I know I still have a long ways to go and have future visits booked, I am comforted to be under the care of the Mayo Clinic physicians, as every last issue will be treated by the proper profession. The faith that I lost many years ago has come back and I’m so grateful for the friend who encouraged me to just “show up.” It’s likely not something I would recommend everyone do, but if you have the will, good medical insurance and the means to hang out in Rochester for any number of weeks, I’m pretty sure they will find a way to schedule you in.
When people say “go to Mayo,” there is a reason so deep, it’s truly hard to imagine without the actual experience. It’s a magical, medical carpet ride that would change the world if universally adopted. They give hope back to patients every single day and it becomes more about how they will live their lives with their ailments, rather than how their ailments will control their lives. If only the Mayo brothers could see the scope of their ideals and dreams, even they wouldn’t believe it.
And somewhere deep down, I’d like to think that they too ate open faced turkey sandwiches at the Kahler Grand. How I would have loved to share one with them.