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Happy Birthday to ….Who this week?

My children have attended a lot of birthday parties this summer. It’s a fun phase for us and I’m glad they have these opportunities to celebrate with their friends and have fun experiences. From the parent perspective, it’s added some new logistical things to my role, not to mention created a line item in the family budget. Sending your child to a birthday party is nothing new for parents though, but as a blind parent, it causes me a little anxiety sometimes. I also don’t want my children to miss out on an experience just because I can’t figure out a way to make it work because of my blindness. So, I thought I’d share some tips I’ve discovered that may be useful to others.

 

Gift Getting/Giving

I remember as a kid going to the store the day of the party to pick out a gift for my friend on my way to being dropped off. Being a non-driver, I don’t have this luxury, so I have to be more of a planner if I don’t want to spend $15 to take a round trip visit to Target just for a gift, or a thirty minute round trip walk to some place close, provided the weather is amicable to do so. . . Sometimes I can pick something up when I do my weekly grocery shopping—if I remember and am actually going in the store. I often use Walmart grocery pick up and don’t go into the store. Otherwise, here are some other strategies I discovered.

I stack a lot of errands with outings so as to avoid spending a lot on Uber/ Lyft/cab trips and to save my “friend/driver chips” for more important tasks. So usually once or twice a month I go to Target or Walmart for things other than groceries to get the miscellaneous things, including birthday gifts. . Corner drug stores are also a great resource and sometimes closer than big box stores. We live within walking distance of a Rite Aid and Walgreens, and I’ve frequently visited one of them the day before or day of to purchase a gift for a party. They have a surprisingly good selection of children’s games, toys, books, and art supplies, not to mention you can also get gift wrap, cards, and a snack to throw in.  Amazon Prime Now is also a good solution if it’s available in your area. (You can get items delivered same-day within a two hour window.) Once I forgot to get a gift, so at 10 p.m. the night before a party, I ordered a “Melissa and Doug” item and had it delivered between 8-9 a.m. the next day for a party that started at 10 a.m. Just another amazing thing about Amazon.

Another idea I’m starting to try is to stock up on small gift items and gift wrap when I’m at stores like Target or the Dollar Store so that I can save some money by getting it on sale and not having to pay for a ride again just for that. This also comes in handy in a pinch like when you can’t walk to the drug store because it’s raining.

 

Getting your child to/from the Party

Okay, again, being a non-driver requires some logistical planning. We’ve been pretty lucky many times in that we know the other children attending, so I can call up and ask one of those parents to give my child and maybe myself a ride. Sometimes I haven’t even had to ask. But, we’ve also had times when our children have been invited by a classmate whom we don’t know as well or we don’t know the other families going, so I can’t do that as easily. IN these circumstances, if public transit isn’t an option, it can require up to four paid trips—to/from to drop off and later pick up. This isn’t as bad for parties where parents are included like many for young children, but when parents are generally not expected to stay, I’ve sometimes offered to stay and help out just to save myself two trips. Having hosted a few birthday parties myself, I know the help will most likely be appreciated. This would also be a great circumstance where you may want to ask a family member or close friend to drive your child as well, but I like to save those chips when I can so as not to wear out my welcome with those individuals.

Just a little note on sticking around to help…Sometimes as blind parents it can be challenging to meet other parents in large social settings like at a school event, at church, or a playgroup,, because we can’t see them to go up to them and begin a conversation, so a smaller setting like a birthday party can be a great way to interact and strike up a friendship, not to mention a great way to demonstrate your capabilities as a blind person. For example, helping to serve food, set the table, pour drinks, etc. You’ll impress them with your skills and may get a piece of cake out of the deal too—wink!

 

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Posted in I Can Do Hard Things, Uncategorized

Best Firework Show Ever!

 

For the last eighteen years or so, Jesse and I have attended the annual convention of the National Federation of the Blind which typically falls over the first week of July, including Independence Day. This year however, circumstances were such that we did not attend, so for the first time since being a teenager, I was home for the holiday. We decided to take advantage of this and celebrate in a more traditional American fashion—parade, hamburgers, and fireworks.

 

Over the years, I always tried to find a way to get out of the hotel (and usually a meeting) to go watch a firework display wherever we were. I have to say that I’ve had the opportunity to watch fireworks in some fun places—echoing off the foothills of my beloved Utah, the US. Olympic Centennial Park in Atlanta, on the river between Michigan and Canada, atop a roof in Orlando where I could see Disney World, Universal, and Sea World all at the same time, and in Philadelphia for the 225th anniversary, one of my favorites, . But, the fireworks show I watched this year definitely will be at the top of my list.

 

After taking our kids to watch the parade and out to lunch, Jesse and I were reminiscing to each other about our holiday traditions while growing up. Stories of our dads lighting off fireworks bought from the local stand were top on the list. So, Jesse and I got the notion that maybe we’d try our hand at lighting off some fireworks ourselves for our kids this year. Our kids have never experienced this either since we’ve taken them to the convention with us every year since they were born. Neither of us had any experience actually lighting a firework before, but we had some ideas of how we could do it non-visually. So, after returning home from our morning adventures, my six-year-old daughter and I made a trip to Target and I bought a box of fireworks for the first time. Of course, I had to get customer service to show me where the fireworks were, and the cashier had to see my ID before she could ring up the purchase, so I half expected the police to be waiting for me as I left the store or at least a manager telling me that they couldn’t in good conscience sell fireworks to someone with a cane, but no one even seemed to bat an eye over it.

 

To my children, the four hours that passed by from the time I returned home until we began our show passed like molasses, but finally the moment came. We gathered up our box, fire-starter wands, and a stock pan of water and headed out to the curb. Jesse and I agreed that we’d look at the different fireworks in the box and only try this out if we thought we could actually do it. We really wanted to make sure we and our kids were safe. After securing access to the hose in our front yard too, we placed our almost-one-year old in his car seat on the front walk while the other two children sat on the front steps. I breathed a sigh of relief when I saw our nearest neighbors drive off for the night. At least we wouldn’t have an audience—aside from our children.

 

I took the first go at it selecting a small firework that resembled a Hershey’s kiss. This proved to be one of the most difficult kind of fireworks for us as it kept tipping over and it was hard to catch the fuse. But, after a few moments of trying, it ignited and shot off! I’ll admit it scared me to death, but was quite a rush and I felt so empowered! And if you’re thinking that my bit of residual vision was any help, you’d be wrong. It was dark, and there was no way I was going to put my eyes down near the fuse to try and see what I was doing. Not to be outdone, Jesse took a try at the second one. He chose a larger cylinder-like one. After another few moments, he too was successful.  By this time, more people around our neighborhood had started launching their own which startled our infant who began crying, so I ended up holding him in a carrier the remainder of the time and was happy to let Jesse light off the rest himself. We were a little slow since it took a few minutes between each firework for us to set off the next one—there was a bit of a learning curve between the different types—but we managed to set off the whole box. Later, two sets of our neighbors came over to chat as they returned home from their evenings, but neither seemed to think anything of their blind neighbors lighting off explosives. (for all we know, they could have all been watching us out the window, biting their nails, and with fire extinguishers at the ready.) This really said a lot though to Jesse and me about how we’ve proven our capabilities to them over the years.

 

After the last one—and we saved the best for last—Jesse and I slapped high-fives with our daughter who managed to stay awake until the end; and then hugged each other in triumph and relief , grateful that we still had all our appendages and hadn’t started any fires. We cleaned things up, put our kids to bed, and then just sat together in our living room basking in our success, feeling almost giddy with delight at our accomplishment. Jesse deserves most of the credit though and I was so proud of him. Of course, this also deserved a post on Facebook. Here is what Jesse said:

July 4th at 10:53 p.m.: Today our kids asked if we could shoot fireworks off at our house. So for the first time in my life my blind but was lighting fireworks independently. Getting that dad thing done!

 

You may be wondering how we actually accomplished this. It’s kind of hard to explain without just showing or doing it, but here are a few strategies we figured out:

  • Try to light them off in about the same area of the road so that you can keep your orientation to the curb and safe zones. You can also hear where everyone is so you know which way to move too. This also helped in trying to relocate the firework after extinction.
  • We recommend using a Firestarter or the lighting sticks included in the package rather than matches or a cigarette lighter. This will give you more lead time and avoid burning your fingers. You can use the fire starter like a cane to locate the fuse and aim the flame better.
  • Pull the fuse out straight and upright with your hands to create the best target for finding it with the Firestarter.
  • We suggest using a pair of grilling gloves. This is a bit debilitating when you are using your sense of touch, but it is still possible and adds another level of safety.
  • Hold one hand on the base of the firework to help you know where the firework is positioned. Then you use the Firestarter like a cane and locate the top of the firework and move the Firestarter across the top until you make contact with the fuse. If you are using a Firestarter, you can wait to light it until you meet the lighter to the fuse. Then you can pull the trigger to ignite the flame which adds another element of safety as you know then that you are now in the right place to light it. You can do a dry run (i.e., practice positioning the Firestarter on the fuse before it’s actually lit) to gage the size of the firework and location of the fuse before lighting your Firestarter or lighting stick as well.
  • When you ignite the flame, you can hear a hiss or spark which lets you know it’s ignited. Most fuses are longer too so you have time to react and move away.

We definitely wouldn’t advocate anyone trying this without feeling comfortable or at least having some prior experience doing something similar like lighting candles, cooking over a flame, etc. In any case, it showed once again that the training we received can transfer to other aspects of life and that with confidence, skills, and maybe a little bit of guts, you can accomplish anything! Years from now, this may just be something we do each year without thought. Our kids will probably never know how nervous we were that night or how empowered lighting a little sparkler made us feel. Hopefully, they’ll just think of it as their parents doing normal things, but for the two of us, it will definitely stand out as “the best firework show ever!” This year we not only celebrated the independence of our nation, but also our own little moment of independence proving to ourselves once again that blindness doesn’t have to be a barrier that keeps us from enjoying our life or sharing certain experiences with our family, and for that we are most grateful.

 

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Blindness Bloopers at the Pool

Usually we try to present ourselves as pretty savvy and “with it”, but unfortunately, this is not always the case. WE have our fair share of embarrassing moments, usually some kind of blindness blooper that keeps us humble. We recently had two back to back which I thought worth sharing for kicks and giggles.

Last Saturday we took our kids over to the pool for the evening. At one point, our son needed to go to the bathroom, so Jesse offered to take him. A few minutes later, my daughter was asking what was taking them so long and looked across the way towards the restrooms. She then told me that “Daddy was coming out of the women’s bathroom”. She wanted to run over and find out what was going on and tell Daddy he’d gone to the wrong place, but I told her that Daddy was capable and I’m sure there was some

explanation, and that they probably hadn’t used the women’s bathroom. Sure enough though, when Jesse returned, he was extremely embarrassed and upset and admitted that they had in fact gone to the wrong one. Apparently at first, our son had gone into the men’s and then stopped and ran out as Jesse was coming in behind him and said it was “not the boys’ bathroom.” So, Jesse then followed our son into the second bathroom. In our son’s defense, to him, he’d gone to the right bathroom because he was a boy and he went to the bathroom that he always uses.   He’s three and I always take him to the bathroom—the women’s bathroom even though I often have told him that he goes to the girls’ bathroom with me because he is little. . In Jesse’s defense, he doesn’t go with us to the pool very often, so he wasn’t familiar with the bathroom set up. He also reminded me that there are no tactile signs on the doors of either, and no one right there to ask so he thought he could trust our three year-old, especially since he first ran into one and then came out and switched to the other. Needless to say, he figured it out as they were exiting and a lady was coming inside.

 

Not to be outdone, or maybe to stand in solidarity with my husband, I committed my own blindness blooper twenty minutes later. I decided to go buy some ice cream sandwiches from the snack bar for us and pulled a $10 out of the beach bag. I strolled over to the window, placed my order, and handed the cashier the bill, so proud that I actually had cash as I seldom carry any. After a moment, he hesitated and handed me the bill back reporting that it wasn’t a real bill. It was in fact, a very realistic looking piece of play money from our children’s cash register. I found it on the floor in my office a few weeks ago and quickly nose read it with my Swiss cheese vision, folded it accordingly (I fold my bills in different ways to identify them) and tucked it in my wallet. Red faced and apologizing profusely, I reassured the cashier that I wasn’t trying to pull a fast one on him. I quickly canceled the order and went back to my table to hide. Let’s just say that Jesse had a good laugh and felt better after that.

Thankfully, we’ve been going to this pool for the last five summers and know a lot of the members and have demonstrated more capable behavior in the past. The whole situation did give Jesse and I a good laugh though once the embarrassment wore off.

 

 

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Bitter Sweet Ballet Recitals

DSCN0080My six-year-old daughter just wrapped up her second season of ballet lessons. The company holds an annual recital each spring. I have to admit, attending the recital is a bit bitter sweet for us.   WE love being there and supporting our little girl, but watching ballet dances isn’t exactly blind friendly. So here’s what we do to try and get the most out of the recital. For starters, the instructor reserves the front row for us and puts our daughter in line on that side so she is closer for us to see. This does nothing for Jesse who really doesn’t have much vision, but for me, it allows me to kind of make out where she is. Then, I’ve used either binoculars or a magnifier app on my phone to view the dance. I’ll admit that I feel a bit conspicuous watching with something like this, especially when I’m already sitting on the front row. I also have a little bit of a blindness philosophical battle going on inside as some of my blindness training promotes “blending in” or not taking special privileges like front-row seating just because I am blind. But I’ve decided that if it helps and allows me to get more out of the situation, especially since this involves my child, I’m going to take advantage of it and not worry about what others think or say whether it’s sighted people thinking I’m weird or blind people judging me.

 

I still don’t get a great visual of what is going on, but it’s something. I then describe what I’m seeing to Jesse–for what it’s worth–which engages him a bit more as well. This isn’t a strategy we use all the time though. For example, if we are attending a play or movie and there is an audio descriptive service or guide, we’ll use that instead as it would be more useful, but for a children’s dance recital, it works pretty well.

 

Sometime either prior to or after the recital, we have our daughter do a solo performance for us at home and show us her favorite moves or parts of her dance. She then describes what she is doing or will pose for us to feel how she is standing so we can learn some of the moves. She loves the attention and teaching moments. It also gives us a bit more insight into what she is learning and how well she is doing.

I think about all the things in which we’ll watch our children participate in the future—sports’ games, recitals, plays, etc. It’s always going to be a little bitter sweet not being able to see them make that great shot, give that funny expression when they make a mistake, or perform that solo. Right now our children are young and while they know we are blind, I don’t think they quite get that this means that we can’t see them when they are performing, but hopefully our presence, cheers and support will make up for what we may not see. And who knows… when I die, maybe I’ll be able to review a heavenly video of my life and see these highlights in all their visual glory and technicolor while enjoying a jumbo bucket of calorie-free buttered popcorn of course.

Posted in Home is Where the Hartle Is, Uncategorized

A Day in the Life…Sundays

Some of you have expressed an interest into how we tackle some of our everyday blindness challenges. So I thought I’d start by sharing a typical Sunday for us as it sometimes presents a few obstacles.

My husband and I are different faiths, so Sundays are filled with two church services for us. Our first service begins at 10 a.m. We attend this every week, but how we get there is sometimes a bit unpredictable and I’ll admit, a bit mentally taxing to always be worrying about figuring this out and trying to get everyone ready on time so as to not be making our driver wait. Since we’re never quite sure how we’re getting there, and have to install car seats, we aim to be ready to leave our house around 9:30 a.m. We live a little under two miles from our church building (about a 25 min. walk for an adult) so just a bit too far to walk with small children or in certain weather conditions, though we’ve done it before. When we only had two children, our good friend picked us up and brought us home each week. (See my ode to Betsy post as she’s terrific!) But, now that there are five of us, we’ve outgrown her car. So, we’ve been bouncing around between a few different modes for the last year or so. For a few months, this sweet lady with a minivan offered to drive us out of the blue when she was in town, (she spends part of the year in Delaware) which was great, but there are often weeks where we have to arrange something else. She also just got called to attend another ward near us in a missionary calling, so we won’t be able to ride with her anymore when she is in town. So, we are figuring it out on a week-to-week basis right now. . We’ve bounced around between other families taking two cars, using paratransit services (our least favorite and most inconvenient), or taking Uber. Uber has been our most stable. Lately however, there have not been many Uber XL vehicles (the larger vehicle that holds six passengers) in our area on a Sunday morning, so I’ve been taking a regular Uber with the children while my husband walks. Often someone on their way to church will see him and take pity on him and pick him up on the way since he walks down a main road. I’d also like to just take this time to say what an amazing husband I have! As I mentioned, we are not the same faith, but it is a true sign of love that he’ll leave on a Sunday morning and walk by himself 2 miles to attend a service with me that isn’t really his first choice. Then I finish up getting the three kids out the door, install the car seats in whatever vehicle we are taking, and load everyone up.

When we finally get to church, I shuffle three kids, three car seats, and three bags (diaper bag, the kids’ quiet bag, and my teacher bag—I teach the six year olds so generally have items for my lessons) into the building. If Jesse is there, he meets me at the door. A friend of ours usually saves us a pew too so we don’t have to sit in the back on the hard metal folding chairs. We generally arrive a bit flustered and feeling like a bit of a circus, but no one can say we’re not committed.

Thankfully our church has some great apps, so I’m able to access all the scriptures, words to hymns, and lesson manuals on my phone. They are also available in braille hardcopy and brf files, but the app works the best for me right now, especially since I’m usually juggling a small child. This allows me (with headphones) to read along during lessons. I have some other strategies I use when I teach, but I’ll save these for another post.

After church is a little easier. The kids and I usually ride home with our friend except during the summer when she goes home to Michigan. During those times, I find someone else each week to fill in or we take another uber. It is a little easier because we fit better into a small car since Jesse leaves after the first hour of our church service. He almost always has a ride home from this by a few different friends of ours who offer to quickly run him home between meetings. . Otherwise, he walks.

WE arrive home around 1:30 (Our church service is three hours—Sacrament meeting, Sunday school, and a third class determined by age). Sunday afternoons are filled with lunch, some quiet time or a much needed nap, and a few simple activities. Around 4:45 p.m., we start the process of getting ready to head out the door again—changing diapers, redressing someone, finding shoes and socks… WE then walk to Mass which begins at 5:30 p.m. The church where we attend is about half mile from our house, or a fifteen minute walk. Up until recently we had one walking, one in the stroller, and one in the carrying pack, but now both older ones walk. Our kids are real troopers at walking long distances.

After mass, we head home. Our walks are usually leisurely and the kids chatter on about this and that or we all talk about what we learned in our various services that day or our plans for the week. Sometimes we sing songs, especially Christmas carols around that time of year. It’s great quality family time which I often fail to realize. When we get to the top of our street, our two older kids line up with Jesse for their weekly race home. Sometimes they race each other, or sometimes Jesse sprints down the street while they run on the side walk so he doesn’t take them out with his cane or long strides. “B” and I cheer them on.

 

The rest of the night is filled with typical evening routine stuff. Dinner, prep for school and work the next day, and bedtime. So there you have it. Not much of a day of rest, but a good family day none the less.

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Muddy Puddles Keep Me Humble

Muddy Puddles Keep Me Humble

 

I hate to admit this, but I’ve stepped in my fair share of puddles…mostly because I don’t see them, and sometimes the cane just misses them. Today, for example, I had just gotten off the light rail and was racing across the parking lot to catch the bus that was just entering the station and about to round the corner to its stop. . I was coming home from a play group at the park and had my infant in the carrying pack and my three-year-old in toe. WE live about a half mile from the light rail station, but with little legs, this walk takes us close to twenty mins. If we could make the bus, we could save ourselves about fifteen minutes. We were getting tired, hungry, and hot, so I really didn’t want to miss this bus. So, I decided to cut across the dirt-trodden area around the corner rather than stay on the side walk. Right before hitting pavement, my foot sank deep into a puddle of mud! Thankfully, I was able to guide my little guy around it and avoid both of us encountering the mud. I was wearing flip flops too at least, which on one hand makes it dry faster, but on another, you’re left with a dirty, gross foot. I stepped onto the sidewalk and kicked off my flip flop in disgust and tried to wipe the grime off the bottom of my foot. As I looked up to see the bus turning around the corner in frustration, my sweet little guy picked up my shoe and in the sweetest voice said, “Mommy, It’s all right. We can get a towel or something and I will wipe it off for you.”   His tender, futile offering brought a smile to my face. I quickly slipped my shoe back on and told him thank you but that it was all right and we’d be home soon. We quickly continued over to the bus and were the last ones to hop on. I sat there wearily for the short ride feeling slightly embarrassed to be sitting there with a muddy foot, feeling a little sorry for myself that I can’t drive or have a driver at my beckon call, and feeling jealous of the other moms whom I had just left at the playgroup who didn’t have to sit on a public bus wearing a squishy muddy shoe.  A few minutes later when we got off the bus and my son saw my foot again, he excitedly said, “Mommy, I know…when we get home, I will get the hose and spray your foot off and clean it before you go in the house.” My heart instantly melted and I felt so humbled. Fighting back tears, I happily agreed. Oh how I love this sweet little boy. I know he has no idea how much his gesture meant, nor how his behavior brought to mind a similar time when someone much more important than I will ever be offered to clean the feet of those he loved. I began thinking of all the good things I had right then. My choice little children. Fun times with them. A beautiful warm day. Cheap flip flops. Bus drivers who wait for you. My son’s sweet little grimy hand holding on to mine. And I realized that it just doesn’t get any better than this.

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25 Years later…#ChangingLives25

mj-lcb-training-nyc-may-2004-2

(Caption: Mary Jo Thorpe, Times Square NYC O and M training, May 2004)

This month marks the 25th anniversary of when I went blind. Each year when the time comes around, I like to acknowledge it to myself in some way. It’s not exactly something I celebrate, but it’s not something I memorialize with sadness either. I guess I just like to acknowledge the passing of time for a life-changing event that really redefined me. Given that this year’s anniversary is a significant, milestone, I feel a desire to do something more profound to mark this anniversary, so I’m calling on the support of all my friends and family to assist me in this undertaking.

For those of you who may not know, I went blind at the age of twelve very unexpectedly due to an allergic reaction to a medication called Tetracycline—or at least this was the only thing we could point to as a cause. . Below I’ve shared my story with you for those who may be interested. I won’t sugar coat it and tell you that the rest of my life from that point on hasn’t been filled with struggles, tears, and frustration, but it’s also been filled with choice experiences, lots of personal growth, great supports, and tremendous opportunities that I could have never foreseen. One of the turning points for me after a period where I felt like I’d hit rock bottom with respect to blindness was enrolling in the Louisiana Center for the Blind, the leading blindness rehabilitation training center in the country. I could write volumes about how this experience changed my life and provided me with skills and confidence I didn’t know I was lacking. So, in an effort to commemorate my 25 years, I want to do something to give back to a cause that made such a difference in my life.

My husband, @Jesse Hartle (also an LCB grad) and I are organizing a donation campaign for the LCB. Our goal is to raise $25,000 by April 30th of this year. Yes, this seems extremely ambitious, but go big or go home right? Our lives have truly been impacted for the better and we want to give back  to something that is near and dear to our hearts.

We are inviting our friends and family to make a tax deductible donation to the LCB, even if only $5 or $10. Any amount will be greatly appreciated and adds up. To do so, please visit http://www.louisianacenter.org and click on the “Donate” button at the bottom of the page. There you can also learn more about how your donation helps to support programs for both blind adults and children—also a cause that is near and dear to my heart. . Also, when making your donation, you will be asked if you are making this donation on behalf of an individual. Please just type in “ChangingLives25”so that we can track the amount raised with this effort. Then we also ask you to share this link with your friends to help us spread the word. Thank you in advance for your help with this. Now, I’d like to share my blindness journey with you.

******

I lost my sight at the age of twelve due to an unexpected allergic reaction to tetracycline, an antibiotic that I’d been exposed to at various times in my life. Up until that time, I had been fully sighted– 20/20 vision. It all began in December 1991. Over Christmas break I started experiencing prolonged double vision and began to have terrible migraine-like headaches and pain down my shoulders and back. My mom took me to see our pediatrician and he passed it off as flu-like symptoms and said just to rest and drink lots of liquids. I was pretty miserable over all of the holiday and things continued to get worse. I remember going Christmas shopping with my mom and actually lying down under the clothing racks in the store while she looked at things because I felt so terrible. I even went to a chiropractor a few times to see if there was some kind of pinched nerve causing all the pain and double vision.

On January 2nd, (a Thursday) after offices reopened and things got back to normal with the new year, my mom took me to her eye doctor for a checkup. He ended up sending me for a CT scan and later announced to us that it wasn’t a tumor. What? This was completely not something we were expecting to hear as we didn’t’ even realize he suspected something of that nature. He then proceeded to refer me to a neuroopthamologist at the University of Utah Medical Center. I had another couple of checkups that afternoon there, an MRI, spinal tap, and was admitted to the hospital that evening.      I was diagnosed with a condition called Pseudo Tumor Cerebri which basically means false tumor on the brain. Apparently I had a spinal fluid build up that was causing the pressure headaches and effecting my vision. Over the next three days, I had four spinal taps and countless examinations.   As you may imagine, this was quite a shock and a bit of a whirlwind of activity and emotions for me and my family.

The following Tuesday, Jan. 7th, I had my first nerve sheathe decompression performed on one eye. Up until this point, my vision was still 20/20, but I was still seeing double unless I closed one eye. The surgery was intended to drain excess spinal fluid directly off of my eye. By that Friday, the 10th, my vision had declined so much that the doctors decided to do the same procedure on the other eye. Within that week, I basically went from 20/20 vision to what I have now—20/800+, and lost a portion of my color perception as well.

On February 7th, I was admitted for surgery again to have a spinal shunt implanted that would hopefully help drain the fluid more and prevent this from happening again. I continued to see my doctor weekly for monitoring. My vision remained the same and never improved. I was in seventh grade at the time and had been out of school since the middle of December. Throughout the ordeal, I just kept thinking that things would get better and my eyes just needed to heal. I was ready to go back to school and back to my normal life.

Around the Middle of March, I remember going for a checkup with my neuropthamologist and asking her when things were going to get better or what they were going to do next; and when I’d be able to go back to school. I remember her saying that they had done all they could and that I could go back to school anytime. I remember asking her something like, “What do I do now?” To which she replied something along the lines of, “just go on living your life.”   I remember feeling a little confused and surprised by her response. How? I thought. What do I do now?” Again, I was now almost thirteen and this all still seemed so surreal to me. My doctor then suggested that we get in contact with the Utah State Division of Services for the Blind and see what kind of support and resources they could offer us. Up until that point, it hadn’t really hit me that I was going to be blind. I’d made jokes about it to some of my friends and family over the past few weeks that I was the “Blind Lady”, but this didn’t bother me because it wasn’t true. This was supposed to get better. I also remember then feeling a little let down because there was nothing left for the doctors to do, and just…sad. This wasn’t the outcome I had expected.

I continued to hold onto hope that my eyesight was going to improve. It just needed time.

About a year or two later, it started to hit me that things were probably not going to get any better with my vision. Around that same time a cousin of mine, in an attempt to be funny, told me about a documentary he had seen on nerves which basically explained how nerves don’t regenerate. So, because my blindness was caused by damage to my optic nerve, I was going to be blind permanently. While I didn’t appreciate his bluntness at the time, (and felt like punching him), I knew he was right—not because the documentary said so, but because I knew so. I remember putting on a brave face, but later coming home and crying at the realization that it might be time that I start accepting that this was how things were going to be for me. Shortly after that, I finally determined that no matter what, I would make the best of this experience and not let blindness hold me back.

I won’t sugar coat my experience and tell you that it hasn’t been hard. I’ve had my angry moments and cried more than my fair share of tears in frustration many times. Thankfully though, I was (and still am) blessed with a great support network of great family and friends. I think that, along with my faith in God is what really got me through the hard parts. I have also had some very special experiences which have helped to strengthen me and shown me that good could come from my circumstances.

For the next few years, I muddled through the rest of junior high and

High school with CCTV’s (large T.V. screen magnifiers for reading my textbooks), large print, getting classmates to read things to me in class, and books on cassette, yes, dating myself a bit. We also installed a large classroom size blackboard on the wall of our kitchen where I would nose-read and work out math problems for my mom to copy down on my notebook. My family drove me places, and walked routes around my schools with me so I could memorize them. I never learned braille or used a cane and pretty much didn’t consider myself blind. . I continued to participate in dozen of school and community clubs, and I graduated with honors from high school.

College was a bit more challenging only in the sense that I didn’t’ have my family to lean on, but I had good roommates and I figured out strategies to get by, or tricks like avoiding areas with lots of stairs by taking a longer way around to a building. Not the best approach, but I did what I had to do. I got notes from classmates, took tests with readers, and spent hours with math and stats tutors reading me problems and copying my work from a blackboard onto my assignments. I thought I was doing great because I was getting by, seemingly well too, but things could have been so much easier and better had I known then what I know now.

In retrospect, even though I was involved in a lot of things and had a lot of great opportunities growing up after losing my vision, I feel like I missed out in other ways. I didn’t realize how much I lacked in confidence or avoided certain activities because I didn’t know how I’d do them. I realize that it was easy to hide behind hours of homework and difficult honors classwork than to have to go and participate in something out of my comfort zone where I didn’t’ know how I’d get aroundor meet and recognize people.

Fast forward a couple more years. I graduated from college, and began a post bachelor’s degree program at a renowned children’s hospital to become a certified child life specialist. Two years later, I ended up failing my internship because of my blindness. During my internship, I found myself enrolling for a three month blindness skills training program at the Utah Division of Services for the Blind as a last stitch effort to salvage my internship, but this proved to be a waste of time as the program at that time really did nothing for my confidence or gave me real reliable skills training.

Failing my internship was like hitting rock bottom for me with respect to my blindness. I couldn’t fake getting by any more like I’d done for so many years, and frankly I was tired of doing so. After all of this, I found myself re-evaluating my life and next steps. I’d never failed anything, so that alone was a low blow. But, what really hurt was that I wasn’t allowed to sit for the certification exam because my proctors felt that I could not adequately perform the tasks of the job without full vision, and I couldn’t show them otherwise at that time, despite how well I had performed in other aspects of the program.

Also around this same time, I was really starting to question what the next chapter in my life would look like. I was an adult now. The general societal expectation now for me was to move out on my own, go on to graduate studies, or find a real job, and hopefully get married and start a family. Each of these things required some greater level of independence than I felt I had at that time. I wanted these things too but wondered how I would be able to accomplish them. Up until now, life had been relatively easy. I’d either lived at home, or been away at school. Even being a college student brought a certain level of stability and security. It seemed like whichever path I decided to pursue, or just adulthood in general, brought with in new blindness obstacles which I was unequipped to handle successfully.

Later that fall, through a series of unexpected events and continued involvement with an organization I’d encountered a couple of years earlier—the National Federation of the Blind –I was accepted to a Masters of Education program in Blindness Education at Louisiana Tech University. As part of the requirements for the program, I had to also enroll as a full-time student at the Louisiana Center for the Blind, the leading blindness rehabilitation program in the country. Even though I was reluctant to participate in the training program (graduates refer to it as “boot camp for the blind”), deep down, a part of me knew this was something I needed to do. I’m so grateful that I did. My experience there truly changed my life. I could write volumes about how this experience and skills training gave me a new perspective and confidence that I didn’t know I’d been lacking. I learned how to navigate safely and independently under blindfold with the use of a long white cane. I traveled in airports, train, subway, and bus stations, and cities across the country including New Orleans during Mardi gras, and New York City under blindfold. I cut down a Christmas tree with a hatchet and learned how to operate power tools without vision which boosted my confidence and taught me that I could find adaptations to make any task in any future job doable.  I prepared a meal for 50 and cleaned up after it all while wearing a blind fold which helped show me that maintaining a home was possible. I took summer camp children to water parks and grocery stores under blindfold which gave me skills to care for my own children someday. My life was truly changed by these experiences and I am forever grateful.mj-lcb-training-ropes-corse-tenn-9-2004

(Caption: Mary Jo Thorpe, high ropes corse, Smokey Mtns. Tenn.Sept. 2004)

Looking back on the last twenty-five years of my life is a little bitter sweet. Sometimes I wish I could go back and tell myself what I know now so as to have spared myself some of the heartache. But I know I needed to go through those hard things to get to the place where I am now. UP until that point, I was getting by, and doing a pretty good job too, but by finally deciding to embrace or accept my blindness, I let go of an immense amount of anxiety and a facade I didn’t realize I was using. My life feels so much fuller and authentic as result. I’m so grateful for the experiences I’ve had and just hope in some small way my experiences can help make someone else’s experience, whatever it may be a little bit easier. Thanks for reading.