Most parents look forward to outings with their kids as often as they can get it. Long before I had my kids, I dreamed of walking in many neat areas to expose them to the world and the places I enjoyed. In the case of our family, we have not been able to interact with society in the same way that others do for years on end. My chronic, debilitating illness has been the major reason for this social isolation.
It was February 16, 2013, and a friend of mine was coming to Portland to celebrate his wedding anniversary. Exciting for me, but also coupled with some socialized anxiety from being caged over the years, I looked forward to a visit. I longed to enjoy time with fellow artists, to work on a pottery project, and to see some of the outside world with my new friends, Greg and Kathryn. I thought this would be awesome for Barry and the kids also. Unfortunately, I became ill with something in addition to my autoimmune issues in the week prior to their arrival. This threw a wrench into things for me, because my physical state prevented me from focusing as well during the part of the visit relating to pottery. I felt like I was going in slow motion, while the everything around me was moving at an accelerated speed. It is sort of like one might feel if they were moving slowly in a movie being fast forwarded for effect. This led me to conclude, whether right or not, that I was perhaps not capable of doing pottery like many, and it really affected that Saturday especially as the end of the day approached. Greg wrote me from where they were staying and said he and Kathryn wanted to take us out to the Portland Art Museum on Sunday. I thought about it, and decided I would see how the night went and decide in the morning if I could sleep and wake up early enough.
As night approached, I became very scared. With all of the diagnoses, and the inability to fully grasp them, fear infiltrates my mind easily. Fibromyalgia was enough. Then came Sjogren’s syndrome. . . secondary adrenal insufficiency. . . a positive genetic test for Celiac disease. . . the strange IgA deficiency, and then some.
Frantic, I finally fell to pieces talking to my husband, Barry, about my feelings. I explained that I was afraid I was going to die from starvation. I talked about how all of the food had to be prepared and how I felt chained to the house. I discussed natural disasters and even storms, mentioning that I would not be able to eat the foods other people could. I recounted the 2008-9 winter storm that left us stranded. That was bad, but I could eat the crap up at the local store. I did not know any better about the effect certain foods were having on my health. This scenario would not be an option today, as it would lead to massively debilitating circumstances. I also could not help but think about my medications. If anything should prevent me from getting them, I would become very ill. The fact is a couple of my medications can result in seizures or severe side effects if abruptly stopped—a life threatening situation is realistic. With the car having had a few issues, I was uneasy about driving even with others in the car. The risks of being stranded without food, enough medications, and struggling with potential symptoms from my illnesses seemed like real risks to me. I do not feel many others can understand this. I was so upset that I was literally sobbing. I felt I would not likely make it on the planned outing the next day. It was past 4 am. I was already fighting a bug, and it seemed like between the concerns and my overall state, it wasn’t going to happen.
We woke up around 10:00 to 10:30 in the morning. I got ready and sent Greg a text message to say we were coming. We had something to eat. I figured, “To heck with this worry!” I decided I needed to quit worrying about things that might happen. I felt okay despite the night before. I was happy to have a surprise for the kids and felt good I had not had to let them or myself down. This would be a simple two-hour adventure and did not require a lot of preparation, because we would be home in a few hours. There was no need to pack a lot of food or take emergency medications along. All that was necessary was having “faith” that things would be okay.
As we made our way across the Morrison Bridge toward our destination, I thought about the car. We had been hit with transmission and severe tire issues that had caused financial distress in the previous two years. Things seemed to keep happening. While driving, I contemplated the intricate nature of our highway and road system, how complex its infrastructure is, and how everyone just takes it for granted that it is safe and will work. Even I had a sense of trust, other than a small burst of anxiety which was a result of being overwhelmed at the complexity of life and the lack of connectivity the nuclear family has created.
We were even ahead of schedule, and I thought we would make it early. That did not happen but we were on time. I parked and realized I had to back up a little. I was not properly parked. I turned the key. Nothing at all but clicking. I shut the ignition off and was instantly concerned. I verbalized this in a somewhat anxious manner. Then, I tried to start the car again. Nothing. And again. Nothing. By this point, I was freaked out. Barry looked discontented too, which was not a good sign. If he is not too worried, his facial expression does not look the way it did.
Shortly thereafter, a man parked in front of us. In an obligatory manner, he asked us what was wrong and informed us that his battery was under his seat, which would make it difficult to help us. I was confused by this comment, but had no time to assess it, as he nonchalantly walked away bidding us good luck. Frantically, I called Greg and told him our car was not starting. We agreed, I thought, to meet in the front of the museum and decide what to do. I wanted to try to jump start the car right away. I knew we might get stuck at a later time if we waited. A large “cloud” was looming above us as we approached the museum.
Upon arriving at the main entrance, I scanned the area to see if I could spot Greg. I looked up and saw a man standing fairly close to us. He was an attractive man, and he smiled as he looked our way. I smiled back just as I do to most people, when I realized that he was not well. He looked at me and my daughter, began laughing, and I instinctively felt protective and vulnerable. I knew he was likely harmless. He walked away, and as he did, I wondered where he would go, where he slept at night, and whether any one noticed his deplorable circumstances. This affected me, instantly leading to sadness mixed with fear.
Then, I decided to call Greg to find out where he and his wife were waiting. He told me that he was at the museum coffee shop. Normally, I enjoy looking around in Portland, but my world felt small, disconnected, and the observation of many things going on around me was obscured by the happenings of the day. I just wanted to deal with the car to relieve the anxiety I was feeling. I was hoping that the battery just needed a jump-start. Then, I could go on with the rest of the day, knowing we would only be out the cost of a battery. Greg and Kathryn came out of the coffee shop. I was glad we had a connection to them. It brought me some comfort. I looked into the coffee shop, knowing there was nothing I could eat there. I wished I could take my kids in and let them have hot chocolate. Due to autoimmune illness in the family, we cannot have dairy, wheat, or refined sugar, outing most of what is in the coffee shop. Coffee shops, which had been a joy to me prior to my illness and economic struggles, are something I now view as a toxic waste dump and poison to my body. I also could not help but think of the man at the main entrance. He would not be welcome here, because he likely could not afford to purchase anything and appeared to be mentally ill and homeless. Most private businesses seem to have a policy that excludes any one except patrons, especially downtown. I doubt that entrance would be allowed to those in the lower part of America’s “caste system.” A homeless or struggling person likely would not even be allowed to come in from the cold, to get a drink of water, or be permitted to use the restroom. As I examined the coffee shop and people coming and going, it seemed that most of the people inside likely “looked away” from the issues right in front of them. Perhaps this is a type of “bystander apathy” or protective mechanism that is necessary to function in an unjust world. I felt cynical and saddened by this fact.
A decision was made to go into the museum. In my fog, I ignored intuition and physical discomfort. I thought maybe I could sidetrack myself and then deal with the car afterward. It cost $53 for admission. It seemed so expensive. We never spend money on much of anything. I felt Greg and Kathryn had already given so much to us already, and it was touching that they wanted to do this. That said, I was shocked at the cost, and in our financial state, could not imagine spending that. I wished I had gotten the pass from the library.
We ventured into the museum, and I was so distressed about the car, I really was not able to enjoy the museum the way one would if his or her mind was clear of worries. Barry emitted distress signals to me, and like me, the “gears in his mind” were turning in an attempt to assess what was wrong with our car. My stomach felt really sick, and I made my way through the museum much in the way a mouse might makes its way through a maze or scientific experiment. My brain was “foggy” and unable to take in information normally. I tried to make the best of it though, because my family does not get out that much. This was a special occasion that I had looked forward to for over a month. We walked through different areas on different floors, and most of it is a blur. Finally, we decided to leave the museum, and I reluctantly approached our car. Our car was parked a couple blocks away from the museum and parallel to the streetcar line. We showed Greg and Kathryn where the car was and made plans to attempt to get the car going. I had a nagging feeling that it was not going to start.
Greg and Kathryn went to get their car, which was parked in a parking garage. Streetcars arrive about every ten minutes. This made our situation problematic, because you cannot block the streetcar. The only place to park to do a jump-start was beside us. There was a car in front and behind our car. We saw the streetcar approaching and knew Greg was on his way. I called to let him know what was going on. He arrived just as the streetcar was approaching. It was parked at the light a block from where we were. We told him to park across the street where there was angled parking. The streetcar passed soon after this.
He pulled his car forward alongside our vehicle, and we realized that his battery was on the opposite side from our battery. The only option at that point was for Greg to turn his car toward oncoming traffic. Greg has a calm demeanor, and this part is still funny to all of us. He got into the car and whipped across the street into the angled parking, which points in the general direction of oncoming traffic. Then, he threw it into reverse, got half way across the road before having to suddenly stop due to an oncoming car. Seemingly unfazed, he backed the car up in a “j” shape and abruptly pulled forward and parked. He was facing traffic on the streetcar tracks on the one way street.. People went around out of necessity. I said to Greg something like, “You really do not get upset over things, do you?” I think he replied, “That’s Prozac.” Barry thought he was joking, but I knew he was not. We got the cheap, emergency kit, jumper cables ready, which I had purchased years before at G.I. Joes. After setting things up, I got into the car to turned the key. There was no noise, not even clicking. I tried a couple of times. We decided to give it a few minutes thinking that perhaps it needed to charge first. I thought that was wishful thinking…and it was! It did not start. We concluded it was the starter after opening up the hood and acting like we knew what might be wrong.
For me, the immediate consequences of being stuck where I was without medications, food, and not in the best physical shape due to my autoimmune illnesses. Two other issues were immediate worry about our kids and money. We could not afford this right now. It is funny. I always feel responsible even when money is spent on things most consider a necessity. Any attempts to improve our financial situation appear to be an exercise in futility. The general feeling is one step forward, two steps back. I estimated this would cost $500.
With our car effectively dead, it was obvious that I was going to need to get it together and call roadside assistance. We gathered the information, and I went to make a call when I realized that I had low cell minutes. I asked if I could borrow Greg’s phone. I am not accustomed to newer phones and think he had to dial for me. Due to a bad connection, it was a frustrating conversation with me doing a lot of repeating with no success. The man on the line asked if he could call back due to a bad connection and said he would do so promptly. He did return the call, and after a nerve-wracking conversation, apparently I had conveyed the necessary information. The person on the line told me he could not say how long it would be but would call back shortly. I had asked if Greg and Kathryn could stay until I heard back about when the tow truck would come. This wait felt like an eternity to me. I finally received a call and was told that it would be roughly one and a half hours before the tow truck would arrive. I provided my cell phone number, making it clear that it was the number to call. The company had promised to call this number when the tow truck was ready.
Just prior to Greg and Kathryn’s departure, there was a incident happening at Plaid Pantry that was in plain view from our car. I heard the disturbance, was alarmed, and yelled for Joseph and Sarah to get into the car. I was in panic mode at this point, and I wanted to start the car and take off to safety. My body doesn’t produce the stress hormone, cortisol, properly. Effectively, even when I feel okay, it has been explained that the lack of proper production of this hormone causes the body to be in a state of “fight or flight” constantly. This day had been filled with stress. We watched to see what was happening. A man had approached a group of people, and it looked like it had the potential to escalate into a dangerous situation. Typical of this situation, their voices were loud and attracted our attention. What was strange is it looked like more of a awkward “dance” or faux boxing. While the aggravated man was trying to fight, and he had his fists up, the person he was trying to engage did not want to partake in the battle. I hoped the display, which was ignored like much is in the city, would end soon. I wanted to get away from where we were parked as soon as there was a clearing. Soon, the disturbed man went into the convenience store. Greg and Kathryn were there still, but I knew our visitors would be leaving soon. They had a long trip ahead of them. I felt internally unsettled, much as an infant might as his or her mother goes out of view, creating separation anxiety. We said good bye to them, leaving me with a feeling that we were on our own now in an unsafe environment, with our two children, and had no way of escaping if we needed to do so. In fact, my fears were warranted to some degree. With my sickness, having to prepare our own food, and no medications, there really had been some valid concerns about leaving the house. Even if I had brought everything with me, my health issues and our financial situation make obstacles much harder to overcome for me than for the average person.
After seeing that things had appeared to be “stable” at the Plaid Pantry, we decided to go to the Safeway, which was not too far away. It was cold, I needed water, and we were seeking any sort of refuge. Just outside the Safeway, there were two people that looked very cold huddled together. It was in the 40s, and I was freezing. I thought how terrible it was that it would be much colder as they day wore on. It was at this point I regretted not bringing these old blankets we have in the garage. I felt that would help these people a little at least. My expression on my face must have be obvious to observers as distraught, and I could feel that my eyes were downcast showing my vulnerability and unhappiness. This downcast nature of my eyes was not an attempt to avoid looking at those suffering around me. In fact, I could see them more clearly in the cold, unwelcoming, barely habitable area in which we were walking.
We went inside the store, went to look for a water faucet, and finally decided to ask for water at the Starbuck’s in the store. I was able to get water and we took a seat in the hard chairs. I cannot sit on that type of chair comfortably, and I had a wheelchair pad that we had left behind in the trunk of the car. Barry said he would go back and get it for me. I was so nervous and concerned for his well-being due to the incident we had escaped from minutes before. Assuring me the best he could, Barry went to get my wheelchair cushion. As we sat there, I noticed that the people across from us were not in good shape. One man seated to the left of where we were was talking to himself, indicating a “psychotic” state to me. The man directly across from us was having a noodle soup and had with him what appeared to be all of his possessions. I felt like we had joined the ranks of those that were on the sidelines of society. I knew we were in better shape than the people around us and felt guilty about that fact. Earlier I had found some money in one of my pockets and had hid it. I felt I should get change and distribute the money to those around me. Our situation did not permit for me to do this, and that led to more guilt. As bad as I felt, the store made me increasingly uneasy. After Barry returned, he told us that police had come to the convenience store. We saw the man that had been trying to fight walk by through the window. I thought we should go back to the car and wait there.
We made our way out of the store and started to approach the car. At some point, I realized that I had left my wheelchair pad in the store. Hurriedly, we rushed back to get it. As we neared the store, I could sense someone walking behind us. Barry and I heard talking and exchanged glances discreetly. With all of these devices and bluetooth technology, I assumed he might be on a call at first. It became obvious that this was not the case, because he became increasingly agitated, was walking very close to us, and the things he was uttering were odd though I cannot recall anything except profanity. I told the kids to go ahead and get into the store, and Barry and I walked as briskly as possible to get away from what we perceived as danger. With a sigh of relief, the door was like an entrance to heaven at that moment. The people were still huddled on the ground reminding me that this was no Utopia.
My wheelchair pad is a nice one that was provided to me by my insurance. I would not be able to get another one any time soon, but I thought someone probably took it. It is a comfortable pad, and I totally understood that someone without money, a pillow, or blankets might see it as a treasure. It would certainly bring comfort to a person on the streets. Sure, I needed it to sit on hard surfaces, but these people experienced mostly discomfort in what has to be a painful reality. To my amazement, it was still there, but had been moved to another seat by a woman now occupying the chair I had been sitting in. We retrieved the pad, placed it safely into the trunk, and got into the car. We were not there long, and not wanting to be there, I decided it would be worth it to try to get back into the museum. I felt like it offered some warmth, security, and a way to pass time. I was not thrilled about asking if we could get back into the museum but did so with apprehension. We did not have our tickets. I was relieved when I saw the person at the front desk, because he had waited on us as Greg purchased the tickets. I hoped he would remember and let us back in. In an awkward display, I explained briefly our circumstances and that we had been there earlier. I asked him if we could go in. He asked if I had tickets, which we did not and told him so. He mulled it over a little, and ultimately, he kindly decided to let us go in explaining that we had 30 minutes until closing. He was nice to us. I thought about the other people outside that would not be afforded this luxury of a 30 minute break in a warm arena. I knew they would be turned away, and this caused a feeling of immense empathy and guilt once again. This did not seem just at all.
Not sure of what to do, Barry wanted to go to the lower floor, where he thought a scene from the movie, “Reds,” had been shot and in search of photography. There really was not much photography in this area, so we headed for the elevator and went back to the main floor to see where the photography exhibit was located. A museum guide explained it to us, and it was the beginning of a surreal experience. He got onto the elevator with us, which had a set of doors on either side. He pushed the button to the side opposite of where we entered. This other door opened, and he indicated to us to exit through this other door. The elevator had not moved from the main floor at all. He walked out one side as we departed in the opposite direction. It was as though we were being transported into another world and we sort of were. An enlarged, deliberately out-of-focus picture was the first thing I noticed on entering. Two videos were playing simultaneously and were part of the exhibit. Eerie music sounds mixed together with voices created an unpleasant sense of what “hallucinations” might be like. I felt like I was in the movie, “The Doors.” This band’s music alone is enough to create a disorienting state. But along with the scenes of psychedelic drug use in the movie, it was not hard to imagine the state that psychedelic drugs might produce. I felt nearly the same in this exhibit as I had watching this movie. We just had to leave the exhibit to get away from the pseudo-hallucinatory state.
Finally, to pass a few more minutes, we returned to one area on the second floor. I wished the tow truck would call, and then we overheard someone saying the museum would be closing soon and it was dark in there anyway. My cell phone rang, and it was Kathryn! Thank goodness she received the call and let us know! A tow truck driver would not have been able to park indefinitely in the area waiting for us.
I really wanted to get out of there at this point, because the museum was so quiet that it appeared we possibly could get left behind. We approached the elevator, and I started checking out the hard floors of the museum. I looked around to see where I could sleep or rest if it became necessary. I saw what looked like a wooden boat near the elevator, but concluded the hard, uneven surface would destroy me. With my pain, no cushion, food, or medicine, I concluded it would be very uncomfortable and unpleasant. Feeling this discomfort inside of a warm building, my mind strayed to how a person with no home would view the building. I had to believe it would be a sight for sore, tired eyes—a refuge to the homeless.
As we waited for the elevator door to open, an elderly woman, who looked confused as well, expressed concern that she could get stuck in there. We all got into the elevator. I remember this well. The woman said to us, “Well, there is safety in numbers.” Her presence both calmed and disturbed me as I felt her anticipatory anxiety. The main lobby door opened and she said good bye and went about her way into the world alone. Strangely, when she left, I felt more insecure and was concerned about her. In addition, we had lost the one connection to the world that felt genuine.
Exiting the museum, we rushed to the car fearing we might miss the person waiting to help us. Working in unison with the tow truck driver, I backed the car up to make room for the giant tow truck to park in front of us. Next, he quickly but cautiously secured our car to the tow truck. To add one last insult to injury, the inpatient driver of the streetcar honked at the man helping us even though there was plenty of room to get by the tow truck. It was as if he was saying, “Get out of my dang way!” The world was giving out signals that anything “in the way” should move on as quickly as possible. Being in the tow truck, I experienced some of the first relief since we had arrived. I did have a feeling that I was leaving a family behind. It felt like I was abandoning the people I saw that day, but I did not want to.
That day provided to me a view of this world that I had seen many times but through a different set of “lenses.” The layout of the streets in Portland is not something I know well, and getting lost is easy for me. In a way, this added to the experience, because I could sense the type of chaos and “lost” feeling this type of environment would create for someone in a “lonely” place in life. At one point, I noticed a doorway at the entrance of a building, picturing that as being an area that someone would go to escape the harsh, cold, and often hostile circumstances of life on the streets.
In my mind, I recounted the many times I had seen such horrific human conditions both in the United States and while in Indonesia as a 16-year-old girl. Prior to this journey, I read a story by a blogger, Tara Golden. She wrote a descriptive, personal narrative about her experience as a trans-gendered, homeless person in Portland. I imagined her in this very place I found myself, perhaps lying in a doorway or hidden corner much like the one above, feeling tossed away. Her writing had pointed out feeling a sense of not belonging, of not fitting in to the larger society due to being trans-gendered and homeless . http://www.oregonmarriageequality.com/2013/01/17/view-from-a-doorway/
Seeing the older kids at the Plaid Pantry, the people crouched down on the street trying to keep warm, and the many faces that were forgotten led my mind to recall articles pointing out how many of those people that were on the streets were part of the LGBT community, specifically youth that had been rejected after “coming out.” http://oblogdeeoblogda.me/2013/01/01/the-ongoing-plight-of-homeless-queer-youth/
Most of the time when I hear a comments about people on the streets, I hear things like, “Those people are lazy!” or “They didn’t try hard enough in school!” Sometimes, people say, “They just need to get a job!” There is often a conclusion that “they” want to live this life style. Here is my question. Why would any one want to live like this instead of feeling like a part of the world? It is necessary to examine the possible reasons that someone ends up on the street or compassion will not be present. Apathy, disassociation, blame, and inaccurate presumptions can and do lead to an absence of addressing issues affecting our world. It does absolutely no good for society but causes great harm to those being left behind. It really is ironic. There is so much talk about “connectivity” in the world, but this connectivity is an illusion. I would say comfortably that our family and many people feel fully on their own in what might be a paradise for others.
All images are copyrighted and have been provided by Barry Savage. To view his blog, see www.floatingframe.wordpress.com If you would like to make a donation toward my medical fundraiser, either donate using the button at the top right hand side of this page. You may also go directly to the Youcaring fundraising site at http://www.youcaring.com/medical-fundraiser/cheryl-s-medical-fund/40186