Bittersweet Updates

Before I get to the main purpose of this post, I wanted to start with a little public service announcement. I was listening to The Daily, a podcast published by the New York Times one day when I heard an advertisement for this company called Patreon. It is a company that supports artists of all kinds by helping them to create membership programs for their fans. This allows fans to interact with the artist and be part of the creative process, and it allows artists to earn a predictable, monthly income and not have their creative freedom hampered by the demands of computer algorithms and ad revenue. I promise not to be annoying about this like a politician. This will be the only time I mention it here, but I decided to create a page on Patreon, and offer exclusive access for $5 a month to essays I have written in Creative Nonfiction classes, as well as a few I have written on my own. I am also hoping to gain a following during and after seminary school by publishing academic writing there. I will still be writing here most of the time, as I enjoy having the freedom to ramble, and not having the pressure of making sure my essays are polished enough to justify charging people to read them. But if you enjoy reading this blog and would like to read some of my more polished writing, I would be delighted to have your support on Patreon. Here is the link to my page!

Well readers, in some ways, this summer is proving to be a strange one given the pandemic. We will not be traveling at all this summer, especially not to Indiana to visit my grandma and cousins on Mom’s side of the family. Most importantly, we don’t want to inadvertently expose Granny to COVID-19, but also, we are just uncomfortable with the risks associated with having to eat in restaurants, use public restrooms and stay in hotels. We have discussed getting an RV but probably won’t as they are crazy expensive. There will be no festivals in our community, which is known for all kinds of festivals every weekend during summer, and even the Wisconsin State Fair has been cancelled. I probably won’t even get to go swimming this summer. The gym where I have gone swimming the last two summers is open, but my parents cancelled our memberships out of an abundance of caution. Even with the precautions the gym is taking, there really is no way to entirely eliminate the risk of virus transmission in an environment characterized by sweaty people breathing hard on cardio machines, and where exercise fanatics like me would still come to work out even if they weren’t feeling well. (If I had to go to a gym for cardio, I hope I would be a good citizen and stay home if sick, but I have been known to exercise on my home treadmill through migraines and low-grade fevers). If it weren’t for the wonderful summer breeze and bird songs floating through my open window right now, you would think it was winter at my house, as we are largely maintaining that wintery cocoon at home mindset. But I’m actually not complaining about this at all. In fact, I was telling my parents the other day that in some ways, I dread the typical summer filled with social pressure to get out and go places when I just want to be left alone at home to stay cool when it is hot and humid, write or read a good book. This could be my most care-free summer ever!

But in some ways, my life is busy and exciting right now. I am working on my seminary application. It is almost done. I just have to write a couple 300-word essays. Perhaps I should have submitted it sooner, the reason for the procrastination being I felt awkward having to ask people for letters of recommendation. But to my relief, all three people I contacted said they would be willing to recommend me, even a professor from my days at Carroll University whom I had the chance to catch up with at a choir collaboration around Christmas 2018, but who hasn’t interacted with me in an academic context since 2012. (This professor is an awesome person whom I had no doubt would be happy to support me, but 2012 was a long time ago. Would she remember enough details about me to write a recommendation when she teaches hundreds of students a year?) I wish this program didn’t require these letters because I hate imposing on people like that, but I think all graduate schools do. I also submitted an application to Occupaws for a second guide dog, which I may be training with in Fall!

A couple years ago, I was intrigued at the idea of training my own guide dog. Since then, I have reconsidered this decision. For one thing, at the time I was considering this idea, my whole outlook on life was different. I think I set low expectations for myself, content to live a life that was easy, comfortable. I was content with the idea of a dog that was only trained to walk park trails. But in the spiritual awakening triggered by this pandemic which I wrote about in my last post, I realize I really want more for my life. I want a career that is intellectually challenging where I can really make a positive difference in people’s lives, and I recognize the need for a fully, properly trained guide dog to reach these goals. I have also done some reading since then and observed that the people that are successful training their own service dogs are usually “dog people” to begin with. In Courage to Dare, a book written by a woman who trains her own guide dogs, she mentioned she had been training dogs in obedience and agility for years before losing her sight and deciding to train her own guide dogs. She used an excellent analogy to explain her decision. If someone needs new kitchen cabinets, they want the job done quickly and they don’t have a deep passion for kitchen cabinets, they would buy pre-built cabinets from a store, or hire a carpenter to build cabinets for them. But if carpentry is their passion, it only makes sense for them to build their own cabinets. That is how this woman feels about dog training. I like dogs, and am ready and willing to commit to the daily discipline and practice required to maintain their training. But dog training itself is definitely not a skill or passion God has blessed me with. There are intriguing advantages to training your own dog for sure, and I am not judging anyone who is not a “dog person” but chooses to step outside their comfort zone and try to train their own dog. Everyone’s situation and perspective is unique. But in my case, I sensed God telling me I should stick with singing and writing, and leave dog training to the professionals.

The impetus for filling out this application was Mother’s Day weekend. Unfortunately this year, Mother’s Day was not the most pleasant day for my mom. That weekend, Gilbert came down really sick. He seemed to be in a lot of pain, barely able to walk, and because he couldn’t walk, he couldn’t make it outside before having explosive diarrhea, which is what Mom woke up to all over the carpet the morning of Mother’s Day. I felt really bad and wanted to help, but Mom said there was no way I could as a blind person as it was everywhere. If I were on my own, she said I would need to hire professionals. I almost feel guilty saying this, and maybe other blind guide dog handlers cannot bare to say it either as the idea of finding a new home for a retired guide dog seemed tragic and unthinkable to me. Other blind handlers I know have had to make this decision because they lived in housing that didn’t allow for any other dogs besides working service dogs, or because the retired dogs couldn’t handle seeing a new guide dog head off to work with the owner while they were alone at home. But I wonder if another factor that goes into this decision is the difficulty of caring for a big dog when they are old and arthritic. I still hate the idea of having to find a new home for a dog that has become a loyal friend, but I can see where it is a decision that may be in the best interest of dog and handler if the person doesn’t live with anyone willing or able to help them carry the dog outside on bad days, or clean up diarrhea, a situation I may be in one day myself.

The Monday after Mother’s Day, Gilbert’s stomach settled down, but he was still very weak. He wasn’t interested in even getting up to walk over to his food dish, so we laid out a plastic tablecloth right by his bed, and he ate lying down. So we thought we better call the vet. (Going to the vet is weird now too with the pandemic. Family is not allowed to come into the building. We have to call when we get there, and a staff member comes out and gets the dog from your car.) Sadly, an x-ray revealed a large tumor in Gilbert’s abdomen. The good news was the vet said the tumor itself wouldn’t cause any suffering, although she did prescribe him Gabapentin for the arthritis that has gotten worse. The bad news was that this tumor is basically untreatable. The vet said she could do surgery to remove the tumor, but didn’t recommend it for Gilbert, as the risk of complications is very high with this surgery, and in over 90 percent of cases, this kind of tumor is malignant and spreads rapidly. Even if the tumor was successfully removed from his abdomen, the tumor would most likely spread to other organs and he would not live much longer anyway. She also said these tumors fill up with blood and are very fragile, so often what ends up happening is the tumor ruptures, and the dog bleeds to death internally. The vet said we should do what we can to try to prevent Gilbert from falling, as the impact of falling can cause the rupture, but she said if this did happen, we should not feel guilty, as these tumors are fragile, and it could even happen while the dog is asleep. I had told Occupaws that Gilbert was slowing down when a dog trainer came to check in with me in 2016. He started showing the beginnings of arthritis in 2014, but since my last job hardly required any walking, I took Gilbert to work with me most days until about a year ago when he started having incontinence, although I didn’t officially tell Occupaws about the incontinence, perhaps living in a little bit of a state of denial. If I didn’t officially declare to Occupaws that Gilbert needed to retire, I could psychologically pretend he wasn’t really retired. Also, as long as I was working at the law firm, Occupaws did not want to match me with a new dog. As I have mentioned before, we live on a country road in a suburb with no street crossings or sidewalks. We moved into this house when I was a baby, and my older siblings were still pretty young as well. At that time, my parents were thinking more along the lines of safety, and they loved this house because it was far from the street so we could play safely outside. They were not thinking about the importance of sidewalks for orientation and mobility when I was older. We could commit to consciously driving somewhere just to practice orientation and mobility, and my parents and I enjoy taking long walks on park trails. But even if I took the dog for walks on park trails and what-not outside work, Occupaws still feared there wouldn’t be enough activity in my routine for a young dog, a fear which I could understand. But they said to contact them if circumstances changed. With Gilbert’s grim prognosis that forced me to officially acknowledge that Gilbert would never wear the guide dog harness again, and my decision to pursue seminary school, circumstances had clearly changed. It was time to give Occupaws a call.

So the day after Gilbert’s vet visit, I spoke to the president of Occupaws who expressed her condolences, and then encouraged me to submit an application to get on the wait list for a new dog. I sat down at my computer several times intending to file the application, but could not bring myself to do it, I think because I felt guilty preparing my heart for a second dog when Gilbert was still alive. But then on the evening of Saturday May 30, I noticed a voicemail on my phone from an Occupaws trainer asking me to call her back. It seemed too late to call, especially because her number was a Virginia beach number, where it is an hour later than Wisconsin. (Occupaws now has trainers based all over the country.) I also didn’t see any urgency in calling her back since I hadn’t filled out the application. I figured she just wanted to touch base with me since I hadn’t officially followed up with a dog trainer since 2018. I figured I would call her back Monday morning. But Sunday morning, Occupaws called on the landline. It turned out it was an urgent matter. The president of Occupaws said they thought they might have a dog who would be a good match for me, and asked if the dog trainer could come to my house and talk to me that very afternoon! Even though the trainer’s number was a Virginia beach number, she was currently in Wisconsin. I was a little anxious about having to acknowledge how rusty my Orientation and Mobility skills were, and that Gilbert hadn’t officially worked in over a year, but ultimately, the anxiety was outweighed by that familiar, glowing sense of joy and eager anticipation I remembered when I found out that Gilbert was the perfect match for me twelve years before.

The meeting with the dog trainer went really well. She asked me about my plans for the future and we had a wonderful discussion about what kind of dog would be best suited for me. I did not feel judged at all. She seemed to understand how my previous employment situation and current home environment did not necessitate much orientation and mobility proficiency with a cane or a dog, and agreed that a guide dog would benefit me in my future seminary school plan. However, before matching me with a guide dog, she wanted me to seek out an orientation and mobility instructor or program where I could brush up on cane skills because as I know well from my experience with Gilbert, there are aspects of orientation and mobility that a guide dog cannot assist with. A guide dog will stop for stairs and curbs, and lead the handler around obstacles like poles and garbage cans, and most beneficially in my case, make sure I am walking in a straight line when crossing streets as I have a tendency to veer. But it is still the responsibility of the handler to know where they are, and give the dog instructions for where to go. For this reason, all guide dog programs require proficiency with cane travel before matching a person with a guide dog. She told me to learn two or three routes that involved street crossings and sidewalks, and one exercise route like a park trail.

When I started working at the law firm in 2015, I really enjoyed working with the orientation and mobility instructor at Vision Forward. I wasn’t sure if this service would be available yet given the pandemic, but Tuesday morning, I sent the coordinator for this program an e-mail. The coordinator replied that afternoon and it just so happened that Vision Forward had just re-opened and resumed orientation and mobility services the day before! So I completed some intake questions over the phone, and was scheduled to start my instruction Tuesday June 9.

Since my next dog and I will most likely be traversing a college campus again, I thought a good place to start would be Carroll University. Despite traveling around this campus for four years, my skills were as rusty as if I had never been there before. Since I did not grow up with convenient opportunities to develop orientation and mobility skills, these skills do not come naturally to me. For example, I grew up being a voracious braille reader, so I bet if I had no access to braille for a year, I could resume reading immediately without missing a beat once it was available again. But with orientation and mobility, I am like the child learning to read, but who is not an expert reader yet, who doesn’t practice all summer and finds they have lost ground when school starts again. If I don’t use it, I lose it. And although I traversed campus eight years ago with Gilbert, it had been twelve years since I had used my cane on campus, and walking with a cane feels completely different than walking with a guide dog. This instructor works Monday through Thursday, so every Monday through Thursday for the past two and a half weeks, with the exception of this past Monday when the instructor cancelled since it was raining pretty hard, we have met at Carroll University where I learned a route from the campus center to the library. At first I was so embarrassed and discouraged at how much repetition it took for things to sink into my thick head, like which side of the sidewalk I needed to be shorelining to find the bumpy brick sidewalk that leads to the library, or how to line up properly to the intersection. But this instructor is incredibly patient and nonjudgmental, and gradually, everything started to click, especially after I created a braille cheat sheet for myself. I had an academic teacher once who said the very act of taking notes helps concepts stick in your memory, and I have found this to be true for orientation and mobility as well. Today, I can proudly say the instructor declared I had the route mastered, and Monday, I will start learning a new route! I think we are going to try the route from City Hall to a doctor’s office, which my mom said involves crossing two lighted intersections.

On weekends, Mom and I are making a point of going somewhere where I can practice cane skills on my own. A couple times, we went back to Carroll University to practice the route. We also went to a park trail in Sussex, which I really enjoyed navigating, and walked from the library to the post office in a nearby village called Butler, which I did not enjoy as the sidewalk was full of obstacles that made shorelining difficult, and to top it all off, there was a bar cooking something that Mom and I both thought smelled nasty. But I guess that is real life, so it was still good practice.

This year, my lifestyle won’t really be changing, as my plan is to ride out the pandemic and take seminary courses online. But I really hope I can be matched with a guide dog in Fall so that I have a whole year to bond with the dog, which I think would make all the difference in ensuring a smoother transition to living on a campus than I had with Gilbert. Move-in day was only a week after completion of my training with Gilbert. I have also reached a level of maturity where I recognize the importance of practicing Orientation and Mobility skills, a discipline that will be even more important if I am matched with a guide dog as it will be my responsibility to make sure he doesn’t forget his skills either. If I can commit to a strict diet, and a walk on the treadmill every day, I can commit to going places every day just to practice orientation and mobility, even though doing so can be a pain in the butt because of where we live. I feel so blessed to have supportive parents just as committed to my success as I am. I look forward to keeping you updated, especially once I am matched with a dog! Stay tuned!

Published by Allison Nastoff

As I write this in 2020, I am 30 years old. I am blind, and Gilbert was my first guide dog. He passed away on December 2, 2020, but I decided to keep the title for my blog as a tribute to him because he will always hold a special place in my heart. In 2012, I earned a Bachelor of Science in Communication with a journalism emphasis, and went back to school for a Paralegal certificate in 2014. I worked for five years at a Social Security disability firm. When the pandemic hit, I did some reflecting and decided to resign from this job and take seminary courses. My dream is a career as a teacher or writer where I can be a blessing to others.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: