By Kate Pinkham
It all started in the spring of 2006. I found myself at a crossroads with my health. I had recently overcome a bout of breast cancer. Radiation as part of my treatment however resulted in my having a pretty dysregulated form of NMH/POTS with a strain on my adrenals as well. I found myself more susceptible to mold and developed esophageal thrush that I believe was a result of the mold in the older apartment I occupied. Although, there had been an increased mold level in the environment that year which had some speculating was thanks to Hurricane Katrina. The Gulf trade wind after all finds its way up to the Midwest. Either way, after yet another return visit to the ER with my NMH acting up because of this, I was more than ready for a change. I felt my health would only get worse if I stayed in the Midwest during our harsh winters.
My longtime friend Mary suggested that I spend winters in Palm Springs as she did. She graciously offered for me to stay temporarily with her and her husband in their small but nice double wide. Her husband would be kind enough to drive my car loaded with clothes and supplies that I would need for the winter. I would fly out with her and could stay with her for about a month or so until I found a room for rent. How could I turn down such a generous and caring offer? I had been to Palm Springs to visit them before and found the air clean, dry, and warm. Was this divine intervention? Just what the doctor ordered? So when my lease was up for renewal on my apartment, I opted out, put most of my belongings in storage except for the ones I would need in California and in the interim, and went to stay at my mom’s until I would leave in October.
As the summer waxed on, I prepared for my new adventure with the added hope that the warmer, drier climate would somehow be a “cure for what ailed me”. My image of California was one of being more progressive in its approach to chronic illness with doctors combining the best of alternative and traditional medicine in their approaches to treatment. In addition, I knew I needed to find a primary care doctor to see monthly for my secondary disability income. I started to investigate doctors online in the area. But I also thought that word of mouth from patients in the area would also be the best way to get the scoop on which doctor would be best for me to see. I therefore did a search for support groups and came across a woman that was listed as a phone support person for the area by the name of Patricia Svenson. In talking with Pat, she guided me to a few doctors that she had heard about in the Palm Springs area.
In the weeks that followed, she and I talked quite a number of times by phone. We mainly talked about doctors and our health issues, when and how we believed we got sick, what worked and didn’t work for each of us, the usual. Surprisingly, as I look back on it now, I learned very little about her as a person given how much we talked. In other words, I learned the basics, the bare minimum at that. I only knew that before her disability, she had been a court reporter in Orange County, was originally from the Midwest too, and that she now lived in a small town called Hemet, 45 minutes or so outside of Palm Springs. She told me where she was with her health at this time.
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Although I felt that I was definitely not in the best place with my health at the moment, I learned that Pat was in a worse place physically, spending even more time than I bedridden. And yet, she seemed quite cheery and willing to offer advice to a newbie to the southern California experience. I was not only getting excited about the potential for healing but also the prospect of, if it worked out, making the move permanent. I felt a kinship to Pat, not only due to our shared health issues, but also to her giving and optimistic nature. And I knew Pat was someone I would like to get to know better once I was out there. We made plans to get together just as soon as I felt well enough to drive to see her.
My car was already in Palm Springs as I boarded the plane in late October with my friend. As luck would have it, there were fires fairly close to Palm Springs in Southern California. But I was reassured by the news that the Santa Anna winds were calming down and that the fires would soon be contained and extinguished. As we descended into our runway approach at John Wayne airport, I could see the amount of smoke in the air however. The trip already had an ominous foreboding about it, and that wasn’t because it was around Halloween! This should have been my first clue for me to just turn around and board another plane back to O’Hare.
We arrived at my friends home late that night. I knew I would need the next day to recuperate from the travel day but we went and got some basic food necessities. I didn’t buy much and rested outside as they shopped instead. At the beginning of the first week I was there, I thought the increase in my fatigue and a bout of IBS was related to the energy and altitude issues associated with travel as well as looking for a place to rent. But by the end of that week, I knew I needed to get help. I went to see an acupuncturist since I had found the treatments helpful in the past. She informed me that she always had an increase in the number of patients this time of year due to the scalping. She told me that each fall, Coachella Valley golf courses, parks and lawns are stripped of their Bermuda grass and replanted with winter rye grass — an annual local ritual that irritates asthma and allergy sufferers. I learned that lawn scalping releases dust and pollen into the air in the valley, a place where dust pollution already is considered the area’s worst environmental problem. And I thought I was happy about the smoke not being an issue! I also wondered how many pesticides were floating in those air particles as well.
The next week I only got worse. I wound up in the ER trying to tell the doctor that my low BP was not something everyone would “love to have” as he initially insisted. ER doctors at the time were wholly misinformed about POTS. But after spending what seemed like a long time trying to explain that it was a dynamic problem and that he should see how it changed when I stood, my Chicago doctor was finally contacted and I got the much needed saline drip. I knew, however, that this was just the beginning. My recovery would take days in bed. And during that time I started to feel the increased pressure to move out! Until finally, by the fourth day of being bedridden, I was told by what I thought was one of my best friends that I would have to leave! At first my reaction was one of complete and utter shock. She gave what seemed to me to be a poor excuse of her husband needing shoulder surgery soon. My mind was thinking, “I thought you said that was next month?” But soon the conversation got around to my health issues as she added that she thought maybe I should consider a nursing home!
I realized in that moment I was facing what most of us do. She, like most people, when they consider our disability and outward appearance, don’t get it. They look at us as being just a little sick, a little disabled. I had been talking to Pat during these past two weeks and called her after this conversation as well. She didn’t hesitate. She immediately offered her home for me to stay. Here was a woman, sight unseen, herself suffering from what I was, offering her home to me! In the span of an hour, I saw both the fear and the courage that humans can possess. The night before I left, I hugged my friend. I hugged her not for what she and her husband were about to do, but for all she had been, the 20 odd years of being a very good and valued friend. We talked about me contacting her once I settled into Pats’ but I knew that this would be the last time we would be together. This episode wasn’t something either of us would be able to put behind us. Instead, I knew I was trading one friendship for another.
That weekend, still in a precarious state of health, my friend and her husband drove me, my car, and my belongings the 45 minute drive to Hemet, to Pat. The drive wound its way through a ridge that was charred by the fire. I had never seen terrain so dark colored and barren. It stretched on for miles. It looked surreal to me. It seemed quite apropos of what I, myself, was going through. What was happening seemed so surreal. But as the terrain started to improve and we then entered the small town of Hemet, Pat was there, greeting me in her driveway. The drive ended with me finding my sanctuary. And I knew it was a sanctuary that was not on any required time limit basis! For Pat, in taking me in, assured me it was for as long as I needed. And she knew that it would probably take months as opposed to weeks for me to have enough energy to recuperate, arrange for my belongings to get sent home, and then have the ability to travel myself.
I am uncertain of the length of time I was bedridden. I only remember one thing. As Pat brought me food, I felt so weak that I kept praying over and over to myself, “Please God, don’t let me die on Pat. Her kindness doesn’t deserve that!” To this day, I don’t know how she did it. She was in a mostly bedridden state herself. I know we talked, but for the life of me, I have no recollection of anything specific we discussed. But slowly, with the help of my doctor back home who prescribed a new med and a local primary care physician for my illness as well as an acupuncturist in the area, I began to improve. I started to have more focused conversations with Pat.
One day, as photos of her riding a camel and standing in front of the pyramids hanging on the frig caught my eye, I then learned more about Pat. She told me of her many trips. In addition to Egypt, she had been to Paris, England, Austria, and Germany. She had also gone to Yugoslavia for 10 days as well as Turkey a week and then on to Austria! Some trips were a week, some were a month. She went to Italy for 6 weeks! In addition to her riding a camel which, thanks to her, I learned was actually called a dromedary, she walked the Sans in Paris, went to all the art museums, castles, and the cathedrals in those places. She had even been to the Vatican. And then, to my amazement, I found out she had done this while she was sick. She did all the work setting up the trips, arranged hotel, flight, travel insurance, transfers, connections, tours, and money exchange rates, all while sick! She, in what I came to know as her self-deprecating manner, informed me that she wasn’t “that sick” then. She was one of those whose illness took a “slow progression at first” as she put it. But when I pressed her further, I found she had periods of time where she could be bedridden for a week or so at the time she traveled and she went anyway! In my opinion, that took guts and a great deal of optimism and trust that things would work out no matter what.
She also shared stories of work, family, friends, and relationships with significants. And I also learned that she had started work as someone that documented insurance mediation and then went back to school to become a court reporter, again, all while sick. For those that are unaware, the language that a court reporter uses is dependent upon a typing machine called a stenograph that only has 19 characters. It requires a unique combination of these characters to learn words and phrases. It requires a great deal of memorization and a better than average understanding of the English language. Many would be happy just to be able to work at all while ill, I thought, let alone go back to school to learn something new and challenging in order to have a better career. She was what many would call a worldly woman, quite cosmopolitan. And yet, her manner was open, unassuming, and down to earth.
As time went on, she made me feel as if I were merely on an extended vacation, wintering in California as I had originally planned. She never pushed for me to start making arrangements to leave. On the contrary, when we were able, she showed me the sights, going to a mission in Riverside, visiting a vineyard in Temecula. She even arranged for a neighbor to take me on a scenic drive in the nearby mountains when she was unable to go herself due to the illness. On Thanksgiving, I was welcomed along with her in her neighbors’ home for dinner. By Christmas Eve, I was happy that I was able to make a dinner of Cornish game hens for the two of us.
To this day, Pat still remembers that meal as one she enjoyed very much. Decorations consisted of a few strands of lights and a poinsettia plant, neither of us being up to anymore than that. But it still felt homey and festive as we watched It’s A Wonderful Life on TV. And as George met Clarence on the screen, I sat there recognizing real life comparisons right there before me. Although I was faced with a nursing home instead of jail and I wouldn’t, even now, think of my ex-friend Mary as evil, just afraid, I still needed saving as George did. I was also blessed with many family and friends back home praying for my safe return. And Pat, a real life version of Clarence, did come along to save me. She not only saved me physically but she, in the process, as Clarence did for George, brought me back to a feeling that I was someone of value. And instead of being discarded as broken, I still could give back, even if it was something as simple as a meal. And granted, even though I am no George Bailey since I didn’t save a town from the likes of Potter, I was reminded that no one is a failure that has friends, both new and old.
After the New Year, I started to feel well enough to make plans for coming home. It was not an easy a task. If I had been well, I would have just packed my belongings and driven myself home. But given my health at the time, I had to arrange to ship both my car and my belongings and then arrange for a plane ride home. There were many back home that helped me with this. My version of the basket of money at the end of the movie, I thought. My mom, sister Ellen, and my friend Jenn all accepted packages that contained personal records I needed to send home separately. The owner of the company where my friend Deb worked, upon hearing of my circumstance, helped by providing a discounted shipping rate for the boxes I sent home via FedEx. I was able to hire one of Pat’s helpers to repack the rest of my boxes so that they could be loaded on the pallet when it came. Jenn and I looked into freight companies together and were able to get it at a discounted rate. We drove my car back to Palm Springs in tandem with one of Pats friends so that it could be shipped home as well. It was quite the undertaking. And I wouldn’t have been able to do it without the help of so many. I never felt so blessed! Pat’s friend drove me to the airport and as we parted, I knew God, and his earth bound angel Pat, had played a part in my being able to go home after all.
Before you think I’m a Pollyanna, I want you to know, I get it. I know it’s hard to feel giving or even purposeful when your biggest decision for too many days in your life has been whether you have enough energy to take a bath or you just need to sponge bathe for the day. And, of course there are days when you can’t do either. Combine that with a society that not only defines your sole value as what you do for a living and/or how much you make, but also increasingly has become a “What can you do for me?” society, and you become even more unsure of your purpose in life or your value to society. Just like those that suffer from “ageism”, we often suffer from discrimination as a result from that same society. It’s often hard not to be cynical or often feel discarded as I did here. But I will forever be grateful to Pat. Not just for what she did for me by taking me in, but also for the continued friendship we have by phone.
As those with a chronic illness know, it’s not that our time has more value than anyone else’s, but the mere fact that we have so little a productive a level of it that makes it more precious. And when one of us gives of that time, no matter how minor the world may view it as, we know its real value. I not only appreciated all the help my well friends and family gave me to get me home but also I very much depended on the support I got from those friends back home, Lisa and Phyllis, that just provided an understanding ear. I knew that their efforts, although they might appear small to others, were invaluable to me and I, in some ways, treasured them even more, since they required more of that precious time and effort from them. So, I can appreciate not only all the caregivers out there, the many doctors, including my local doctor, Dr. Keith Berndtson, and the advocates like Cort Johnson and Rich Carson, but also I can appreciate the CFS/Fibromyalgia community as a whole.
Every time one of you posts a suggestion to a fellow sufferer on line, tries a new med or supplement protocol and shares how you responded to it, or is just there on the phone ready to listen to another, it has a great deal of value. Although nuanced, we are both Clarence and George to each other in so many ways. And, I just want to say, particularly, at this time of year, I am so very grateful to all of you. Merry Christmas and Happy Holidays.