I have needed to write a post like this for years, but have been hesitant to do so. Part of this hesitation has been due to the fact that I lacked the words to explain my feelings, and then I was afraid I lacked the maturity to express my feelings in a calm, intelligent and mature fashion. The last thing I want to do is hurt anyone’s feelings, especially those of my family. I hope that even the act of writing this blog doesn’t make them uncomfortable, but in the emotionally charged, immediate nature of face-to-face conversation, I am still guilty of being reactionary and immature. But after a lot of thinking and some prayer, I think I am ready to use writing, a forum that allows me to relax and think, to express myself in a thoughtful, mature manner. I will actually use two blog posts to cover this subject because there are two things at play that are sort of entertwined, but also separate issues that warrant separate posts so that one post doesn’t ramble too long. The second issue, I am making progress with by trying to look at it from a spiritual perspective, but the first issue which I want to discuss in this first post is something I am embarrassed to admit to because it is so childish, maybe even narcisisstic, and I really don’t want to be childish or narcisisstic. But I hope that by writing about it, maybe you readers, some of whom I see face-to-face can help me come to terms with it.
I can tell Gilbert enjoys going to work with me, but every day when we arrive home from work and I take off his leash, he runs upstairs, tail wagging, and often heads straight for his bone. He recognizes the necessity of being on-leash. In fact, on days when he cannot go to work, I can tell he missed me and wishes he could have gone to work with me. Yet when we arrive home and I can take off his leash, his joy is unmistakable. He can relax now and be free! As a totally blind person, as well as someone whose brain takes longer to get oriented to new surroundings, if I am anywhere besides my workplace, or my house—places that are such a regular part of my life that they are drilled into my brain–I feel as though I am on a leash. If I take a walk outdoors, I either need a sighted guide, or I can use my cane or guide dog, but a human still needs to come along and direct me. If I visit a friend or relative’s house, I wish I could walk around and mingle like the sighted guests who seem to just know where everything is. When the setting is not a regular part of your everyday life, I don’t agree with the prideful, militant philosophy of just picking up my cane and fumbling around until I figure it out. It makes more sense to just let the host park me in a chair and bring food, beverages and companionship to me. My workplace is the only building where I don’t have to ask to be shown where the restroom or water fountain is. Before Gilbert developed arthritis, I would often bring him to bible study at our church, and with Mom directing me, I could work Gilbert from the chapel where we gathered for singing and a large-group lecture, to our small group classroom. But Mom says the hallways are complicated, so even if I am able to train with a new guide dog, she isn’t sure we would be able to navigate our church completely independently. In my everyday life, being on-leash occasionally does not bother me. It is just a reality of my disabilities that I accept. In fact, if you really want to get under my skin, call me a hermit as family members will dare every now and then. I do not consider myself a hermit.
The joys of hearing birds sing and breathing fresh air on a walk through a park are worth the loss of independence, even a little bit of my parents’ slow driving through random towns to look at houses on the way. (I used to complain immediately when they started doing this, but I really am trying to be less self-centered, and am able to hold my tongue for about half an hour now.) I feel more at ease when gatherings are hosted at my house, but am always glad I went to the friend’s house. While my uneasiness about being in an unfamiliar house may be more profound because of my disabilities, Mom has told me that everyone feels a little uneasy to some extent when at someone else’s house. In fact, I thought it was interesting when we went to visit Granny once that she mentioned how difficult it was to cook in Granny’s kitchen, her own mother’s kitchen that she grew up in. Granny did some kitchen re-modeling to accommodate Papaw’s wheelchair when his Parkinson’s disease became worse, so it wasn’t exactly the same kitchen she grew up with. But for some reason, this comment still surprised me. I suppose if I ever moved into my own home and only visited my parents every few months, I would feel uneasy cooking in their kitchen too. We all feel most at ease in our own home. And especially when the friend is from my Monday bible study group, I recognize the fact that every Monday, after a long day of school or work, they put up with possibly feeling a little uneasy by coming to my house when maybe they would rather be at their own homes where they could truly relax. It wouldn’t kill me to allow them to feel at ease by attending parties at their houses every now and then.
The joy and inspiration I get from church every week is worth the brief loss of independence, as is the pleasure of going to a theater to see a live performance, or eating out every now and then. Because these outings are relatively brief, I don’t even consciously think about my loss of independence in these situations. In fact, if circumstances ever changed such that I wasn’t able to take walks outdoors, visit friends and relatives, get to church or attend musicals or choral concerts anymore, I would be devastated. But I absolutely dread the prospect of overnight travel, and I think it is because it means I am on-leash hour after hour, day after day and this just wears on me.
As a child, I actually loved to travel, and was even sad when it would be time to go home. One factor ironically is that as a child, being at home got boring, and I enjoyed the change of scenery travel offered. Since my siblings are so much older, I got used to entertaining myself at an early age. I had plenty of toys and braille books to read, and a swingset outside. But in hindsight, I did not find the fulfillment in these childhood pleasures that I now experience with adult pleasures like blogging and reading adult books. Grandma on my dad’s side had a swimming pool and a scooter where I would sit on Grandma’s lap and we would ride around the property. When I went to Granny’s house, there was a cousin close to my age who would play with me the whole time. When we went on family vacations, I just enjoyed the fact that we were all doing something together, rather than my siblings just watching television, playing video games or going out with friends while I was off entertaining myself. But as an adult, I find that I get so bored when on the road. Both of my grandmothers now live in assisted living facilities, and the cousin that used to play with me has two children and a full-time job now, so our worlds are completely different. She is kind to me, but we don’t have the relationship we had when we were children. I recognize the importance of visiting relatives, but now that visiting relatives means just being parked at a table and talking for hours, mostly about subjects which I have nothing to contribute, going to bed, and then doing it again the next day, I long for every gathering to be at our house, where I could sit and visit for an hour or two, and then escape to my room to do something more interesting. I do bring my braille notetaker to read books, but rarely actually utilize it because there is just too much noise and distraction. As an adult when my parents want me to go on vacations, there are some activities I enjoy, especially theatre performances, but now that I find more pleasure in independent, adult activities, having to give up my free will for a few days and do what other people want to do, especially if museums are involved, drives me crazy. My parents have said that now that I am an adult, I could stay back at the hotel while everyone else toured museums, but sitting on uncomfortable furniture in an unfamiliar setting that lacks small but important things like dishes, and a microwave labeled with braille so that I have the freedom to cook myself something if I get hungry for lunch before they get back, doesn’t sound appealing either, so I usually just tag along on the museums, counting down the hours until we are home and I am free again.
Even as a child, there were vacation circumstances that weren’t ideal, but because I was a minor, I realized I had no choice but to put up with things. For example, Ihave always been prone to migraines, and would often wake up with migraines when we had to stay in hotels since I often couldn’t sleep what with family members snoring. I vividly remember one morning when I was nine years old when I woke up with a particularly nasty headache because in addition to the snoring, the hotel fire alarm went off in the middle of the night. The next morning as the rest of the family, who didn’t sleep well either because of the fire alarm, but didn’t have migraines, woke up and were talking and getting ready for the day, I rolled over in bed, groaned and moaned for everyone to be quiet. “You don’t need complete silence for a headache,” I remember my brother saying. I don’t think he would say that today, as all of us siblings have gotten a little more compassionate with age and life experience, myself included. He would have only been thirteen years old at that time. But he was right in a way. Complete silence doesn’t help when I already have a full-blown migraine. I just needed peace and quiet at night so I wouldn’t get a headache, or at least such a severe headache to begin with. But of course as a minor, I couldn’t have stayed home, or slept in a hotel room by myself, so I just sighed and tried to be a sport despite my misery. But ever since I became an adult, when I am kept awake all night and wake up with a migraine, or a restaurant we thought would have gluten free options doesn’t, no matter how much fun I may have had on the trip until that point, I cannot help thinking, “Why do I still have to put up with this. I could be at home, well-rested and feeling great right now.”
I am so sorry that this post sounds like such a pity party, but do you see what I mean about this being the narcissistic part of me. I hate that I have these self-centered feelings, but these are my honest feelings, and as every psychology expert will say, the first step to change something you don’t like about yourself is acknowledging the problem. I recognize the necessity of overnight travel every now and then. Granny, whom we visited after Christmas, is not well enough to travel, at least not right now, and even when relatives are healthy, they probably feel more at ease in their environment too, so just like with my friends, it wouldn’t kill me to reciprocate every now and then. And even though there was a lot of time spent parked in a chair when we visited Granny for Christmas, I also got to go to Granny’s church which is a unique experience for me. Unlike Elmbrook Church, a nondenominational mega church that holds 3,000 people, Granny belongs to a Quaker church that is so small the pastor knows everyone by name, and if someone fell, lost a loved one or had surgery recently, he will ask how they are doing. I love the modern songs we sing at Elmbrook, played by a full worship band. But I also love the simple beauty of old hymns played on a piano. I also recognize that vacations offer unique experiences that you cannot get in everyday life. I will admit that the vibe of Manhattan, especially the sidewalk vendors is cool, as is a Christian theater we discovered in Branson called Sight & Sound Theatres, which bring bible stories to life with an amazing professional cast, special effects and real animals! I will concede that my life is a little richer from these experiences. Even so, from the day I find out we are taking a trip until the day we leave, I am not as excited about the trip as everyone else because I just cannot help but dread having to be on-leash for such an extended period of time, and the longer the trip is, the more I want to jump out of my skin screaming. I know that the freedom I feel at home isn’t true freedom, but more a sense of peace and security perhaps similar to how a fish feels when returned to a familiar aquarium. When my parents pressure me to go on vacation, I know they love me and have pure intentions. They find freedom in getting out of the house, and want me to find joy in a change of scenery too. And to be fair, we have learned from mistakes made on past trips. We know how to better research gluten free restaurants ahead of time, and my parents will even pay for two hotel rooms now so I can get a good night’s sleep, which makes a huge difference in my mood! But even though we have become better travelers in recent years, I still cannot help but jump for joy when we get home from the vacation and I can take off my leash!