My Journey Back: A Different Perspective

This is the 4th post in a series of posts about my recovery from complications from spinal surgery. And I have looked at the world from a very new perspective as someone who is dealing with a disability right now. I have discovered this:

The world is a very hostile place if you are not an able-bodied individual.

Things that no one gives second thoughts to suddenly become obstacles if you’re not able bodied. Cracks in sidewalks, doors, rugs on the floor, low toilets, small bathroom stalls, curbs — just to name a few.

It seems to me that there are so many places that really have no interest in accommodating people with disabilities; rather, they check a required box. They have the required number of parking spaces, but no real concern about the condition of the parking space or the condition of the parking lot. Potholes, uneven pavement, or cracked and ruddy pavement are just some of the issues I’ve encountered trying ti navigate my walker from a handicapped parking space to the entrance of a business. Entrances often have ramps; sometimes there are ramps from handicapped spaces to the sidewalk, sometimes not. The problem I see often with ramps is that they are steep. I’m not sure I’ve encountered a ramp I could actually push myself up while in my wheelchair, they are all so steep. Getting in through a doorway is also a challenge while in a wheelchair. Many entryway thresholds have some sort of lip that is difficult to roll over on your own, and when someone else is pushing, I have been nearly pitched out of my chair when someone tries to go at ramming speed to get over the hump.

Trying to go shopping is frustrating. Many retail stores try to cram so much merchandise onto their floor that it can be an exercise in futility to try to navigate the store. One store I visited was incredibly crammed to the point that my wheelchair could not fit between displays. Others are not any better even if I am using my walker.

I have been some places that have been very hard to walk because of their flooring choices. Textured flooring, uneven flooring, incredibly slippery flooring — all dangerous or requiring great exertion to walk across.

Public bathrooms can be among the most ridiculous. I have been in bathroom stalls that are supposed to be accommodating for people with disabilities but were so small that once you got yourself wheeled in the stall in your wheelchair, you had no way to turn around, no way to lock the door behind you (unless you backed into the stall), and no way to get out of the wheelchair and get to the toilet. I have been in bathrooms where there is only one grab bar behind the toilet or where the grab bars are loose. Even something as simple as placement of paper towels and sinks is problematic. Many public bathrooms have sinks and paper towels or hand dryers so far apart from each other that I have to walk several steps — with my wet hands on the walker handles (or using my wet hands to wheel myself to dry my hands).

Of course, businesses are allowed to design their businesses as they see fit — they can choose their own flooring, design their own displays, or maintain their grounds and parking areas as they see fit. But they should realize that they may be losing some business from people who simply can’t find a way to navigate their way to or through that business.

None of these things ever once crossed my mind while my body was working in a typical fashion. But now that I am forced to experience the world from a completely different perspective, I have discovered that most of the world doesn’t really seem very concerned about making that world easy for those with disabilities to exist in.

Quick side note: something else I have discovered, though, is that people can be very kind. I have had people of all ages voluntarily offer to hold doors for me or clear a path for me or find me someplace to sit that is easy to get to. I am deeply appreciative of each of those kindnesses when they are shown to me. I just wish that I didn’t need to rely on those kindnesses to open a door.

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Wildfire

Yesterday morning I was watching the morning news. There was a report about the California wildfires, which are just horrifying. It seems that California has a lot of these fires, but it never is any less tragic every time they happen. It’s terrifying and sad to see these fires come into populated areas and know that people’s lives and homes could be lost. But something struck me as I watched this particular news report.

The video showed a blazing fire closing in on a ranch. Silhouetted against the backdrop of the fire were horses running out of their fenced enclosure. It seems to me that it is likely that these horses will die in the fire. I don’t see how they can outrun it. I don’t see how they can protect themselves. I am willing to bet that the people who lived on and worked on that ranch evacuated. This infuriates me. I can’t wrap my brain around how people can flee a disaster to save their lives yet leave animals behind to perish in some pretty horrific ways. We sadly see this in too many natural disasters — wildfires, floods, hurricanes. But in the case of this ranch, I am sure some will say that it would be a massive effort to try to evacuate so many large animals. And they would be right — it would be incredibly challenging. Buy I guess my counter would be that maybe you should not maintain all those animals if you cannot properly care for them, which includes finding them adequate shelter in the face of disaster. If they cannot commit to this, then maybe they should not be allowed to have those animals.

Maybe this is a business opportunity for some people who are animal activists who know netter than I what to do. Maybe there should be a rescue or shelter service that people who own animals — especially a large number of animals or large animals like livestock — can partner with to help get animals to a safe place. If organizations like this already exist, then maybe they should be more visible or there should be more because it is just awful that animals can so easily be left behind to perish.

Maybe I am a complete moron about this. I know people who live in California, so maybe if I am completely off base on this, they will set me straight. All I know is that as I watched that news report, I felt just horrible for all the people who were having to face these fires, but I also felt pretty lousy about the animals I saw, too.

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My Journey Back: Work It

This post, the third in a series about my recovery from a tough back surgery, will chronicle the work I have done so far. Currently, I can walk pretty steadily and for a fair distance using a walker. I can stand unsupported for a few minutes, maybe less if I am doing things that require me to move my arms or head or bend my legs. I can walk up and down stairs one at a time forward if I have 2 railings or sideways/laterally if I have only 1 railing. Currently, I am able to walk very shakily using only one hand for support. Considering that 2 months ago, I could barely stand when using a walker and couldn’t really walk at all, I am doing remarkably well — at least that is what my occupational and physical therapists tell me. And they have also told me that they won’t blow sunshine up my rear by telling me I’m doing a great job if I’m not because dishonesty about my progress won’t be helpful. So I guess I’m doing well in my progress, but I have a lot of things I do to make that progress.

The number one thing I do is walk and stand. Evert day at therapy, I walk. Sometimes I walk with my walker and a therapist walking alongside me. Sometimes I walk using my walker while in the gait track, which is basically a harness suspended from the ceiling that prevents me from falling. Sometimes I walk on the treadmill. I believe my record on the treadmill is about 24 minutes, which earned me a quarter mile distance since I was walking at my top speed of like .5 or .6 MPH. I also spend a lot of time standing. I started by standing and holding on to a table with both hands then progressed to one hand and now I use no hands as much as I can. When I am standing, I usually don’t just stand there. I am given activities that are either meant to distract me or to add another level of activity. I have stood and done word searches, puzzles, matched cards, and played games. I sometimes do arm exercises with light hand weights while standing. Sometimes I have to pick things up from the table and then squat down to put them in a box. Sometimes I have to stand and pass things from one hand to another around my back or over my head. All of the activities are designed to improve my endurance while standing as well as my balance.

One of the first times I took a step using the walker. It took 2 people to help me move my legs and I had to rest after only a couple steps.

Sometimes in the gait track, I have obstacles to deal with — canes on the floor to step over, cones to tap with my feet, foam mats to walk on to adjust to walking on unstable surfaces. I have gone outside to practice going up and down curbs. I have done practice wheeling myself around in my wheelchair to make sure I have the endurance to do that at work.

My family with me while using the Nu-Step.

Occupational therapy has helped me with things to be at work and home. I practiced transferring from my wheelchair to a rolling desk chair so I don;t have to sit in my wheelchair all day at work. I have practiced working in the kitchen — I made a sandwich, some eggs, made coffee, washed and dried and put away dishes, and taken things out of and put back in cabinets. I have practiced how to transfer from my wheelchair to a regular height toilet using my walker and grab bars. I have even learned how to get in and out of cars.

Work in the parallel bars.

There are times I do work in parallel bars. This is where I have been practicing walking using only one hand for support (this will allow me to eventually transfer from using a walker to a cane). I walk over obstacles, do toe taps, do marches, side stepping, and step up onto blocks.

To help strengthen my legs. sometimes I get to work on the Nu-Step (which is like a recumbent bike but instead of pedaling, I just push and pull with my legs. I have worked on a recumbent bike as well. I have tried getting down on the floor and back up again a few times, but the braces I wear on my legs really hinder that right now. I need some more leg strength and ankle strength to get that move perfected!

The gait track harness.

When I was in inpatient rehab, I had 3 hours of therapy Monday through Friday and 90 minutes of therapy on Saturday and Sunday. Once I graduated to day rehab, I started with 3 hours of therapy Monday through Friday. Now I am down to 3 hours of therapy three days a week. I believe I will eventually drop down to 2 days a week with the goal of eventually moving from day rehab to outpatient rehab, which is usually 1 – 3 days a week for 45 minutes to an hour each.

And then someday, I won’t need therapy anymore. That’s the day I look forward to the most!

Obstacles for me to navigate while in the gait track.
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My Journey Back: Temporarily Sidetracked

This is blog post #2 in a series of posts about the journey I am on to recover from complications of back surgery.

While I was in inpatient rehab in Silver Cross hospital, I sometimes would have calf pain. I attributed it to the fact that I didn’t walk very much and my calf muscles were tight from lack of use, so when I would walk or stand, the muscles would cramp. I also knew very well that calf pain could be a sign of blood clots — deep vein thrombosis. But since I was on a blood thinner (heparin), I didn’t think blood clots could be the culprit.

I told my rehab doctor about the pain — it was specifically in my right calf. She checked my legs — no redness or swelling, just tenderness to the touch. She ordered ultrasounds of each calf just to be safe. Ultrasounds revealed no blood clots — whew!

But the following week, I had pain in my left calf. I mentioned it to my surgeon when he came in to do a follow up. He did the same exam my rehab doctor had done a week before — no redness, no swelling, just tenderness to the touch. He also ordered ultrasounds of both calves to check for blood clots. I was a bit irritated — after all, I had this done just a week ago! I had the all clear. Why did I need to do this again?

Guess what? I had DVT — in both calves!!!!!! I was shocked! How did that happen so fast in just a week? And while on blood thinners? The doctor decided to order a CT scan of my chest to be sure none of the clots had caused a pulmonary embolism. Not long after the CT scan while I was back in my room, sitting in my recliner relaxing, my nurse came in and said I needed to get into bed. I knew that meant nothing good. Sure enough, I had multiple PEs despite not having any symptoms — my blood pressure was normal, I had no chest pain, and I was breathing normally.

I was freaked out big time about the clots. After all, everyone knows the damage blood clots can do. Plus, I was terrified of being on bed rest — how much progress would I lose by missing physical therapy? I cried — tears of fear and tears of frustration. My surgeon and now my hematologist decided I needed an inferior vena cava (IVC) filter placed to catch the DVT should they decide to move. That was placed while under twilight anesthesia (I remember none of the procedure). A small incision was placed in a vein on my right collarbone and the filter threaded through there until it was placed properly. Once it was placed, my bed rest restrictions were lifted. I was also switched to a different blood thinner. I started getting Lovenox injections. Those were worse that the heparin shots, let me tell you! Both blood thinner injections are given normally in the belly, and they can leave significant bruising. The Lovenox injections also had the added “fun” of burning like hell upon injection. I started having to have an ice pack on my belly 15 minutes before an injection to help minimize the burning. Luckily, once I was discharged home, I was switched to an oral blood thinner (Eliquis).

Inside the yellow circle is the IVC filter that was placed. You can also see a side view of the hardware placed in my back.

Maybe you have the same question I had — how did I develop blood clots while on blood thinners, especially since I have no history of blood clots? Here is what my hematologist explained: normally, after back surgery, there is a higher risk of bleeding so it is uncommon for a patient to be given blood thinners. However, since I was so immobile, they knew I would be at risk for clots so they started me on heparin, but only about half the usual dose given to typical post-surgical patients. The immobility combined with the lower dose of heparin allowed the clots to develop.

Before I started the heparin injections in my stomach, I had them in the back of my arm. This is a sampling of what the bruising from blood thinner injections looks like.

I am very glad that my couple of days of bed rest and missed therapy sessions resulted in virtually no loss of progress in my recovery. I work very hard every day to keep myself healthy and safe so that I don’t ever have to worry about any loss of progress!

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My Journey Back: What Happened???

Today, I begin a series of blog posts (that I’m sure some of you just KNEW were coming!) about this journey I have been on for the past few weeks. It’s not a journey I wanted or chose for myself. It is not a fun journey. But it is one I must face.

Like many middle aged, overweight women with a decent sized bust, I’ve had back pain on an off. I have attributed that back pain to the aforementioned conditions as well as things like sleeping in a funny position or over-exerting myself when I exercise. I had a lot of back pain when I was in London in July which I attributed to hours on my feet while touring and sleeping in a pretty uncomfortable bed for a week.

A few weeks after getting home from London, I left for Key West. August 1st, to be exact. My back was a little sore that morning. By the time I got off the plane in Atlanta, I was in a lot of pain, walking quite slowly. The next day, I was still in bad pain, walking very slowly, pretty much hunched over. I thought maybe a massage might help, so I had one. No luck. The next day, a Saturday, I started to notice that my legs felt weak and heavy and feet felt a little numb. I still had pain when walking, but now I had a hard time picking my feet up off the ground. I had to pull myself up stairs with my arms, using the railing, and I could barely lift my legs to get into an Uber. I started really needing assistance for walking. The next day, a Sunday, I started to worry about my journey home on Monday. I went to a quick care in Key West just to get something to mitigate the pain enough to let me walk a little easier. I was given prescription strength ibuprofen, a muscle relaxer, and percoset. To give you an idea of how much pain I was in, I took all those drugs and they had no effect at all. Jim arranged for wheelchairs for me at Atlanta and Midway because there was no way I would be able to walk anywhere in those airports. We got home late Monday night. I literally crawled up the stairs to bed on my hands and knees.

The next day, August 6, I saw a doctor about my back. He showed no chill at all when he discovered I had bilateral foot drop. It was scary how aghast he was. He showed me an X-ray of my back, showing how L2-4 were way out of line, looking more like stair steps, and how those vertebra were pushing things all out of whack in my back, causing the pain and the foot drop. Diagnosed with severe spinal stenosis, I now faced surgery to fuse L2-4 and have a laminectomy of those vertebra as well. I was admitted to the hospital that afternoon. After an MRI, CT scan, and an EMG, it was confirmed that the culprit was indeed the spinal stenosis causing the issue and surgery was a go on August 8.

Here’s where things get a bit foggy because I don’t remember much of what I am about to share. I was taken back for surgery that afternoon. But during surgery, something happened where signal was lost to some important nerve (SSEP?), so the surgery was stopped. The fusion was complete. The laminectomy was started but not finished. The doctor wanted to check the nerve issue, but I guess that in order to do that, I could not have any anesthesia in my body, so I was given narcan to reverse the effects and given an MRI and CT scan. Whatever the doctor saw prompted him to contact doctors at Rush to take over the rest of the surgery. I was transported by ambulance to Rush where the doctors there ran more tests, determined that whatever the issue was before was no longer an issue, and proceeded to open me back up to finish the laminectomy. I remember the following things: going to surgery, being in a white, fluffy thing (which is apparently the inflatable thingy they used to move me), a siren (assuming from my ambulance ride), and throwing up twice and apologizing to two pretty nurses foe throwing up (they turned out to be my overnight ICU nurses). I woke up, surprised to find myself in a hospital with a fabulous view of the Chicago skyline. My back pain was gone, but I could not feel my feet or move them. Doctors would come in and tell me to wiggle my toes and I knew damn well they didn’t wiggle and the doctors would say, Good job.” I hated that. I was told that there was nothing they could see that was causing the issue with my feet, but that there was also nothing preventing a recovery of movement or feeling in my feet, but that could take at least a year or even more to return. The nerves just were too damaged and time and therapy would be necessary.

I spent August 6 – 9 at Silver Cross hospital, August 9 – 14 at Rush hospital, and August 14 – September 4 back at Silver Cross in inpatient rehab. I was released home on September 4 and am getting ready to start my last official full week of day rehab (3 hours of therapy, 5 days a week). I’m not sure what happens after this week, but my status as of today is that I have movement in my feet and toes, but the numbness remains. I can walk haltingly with a walker. I can stand for very short times (measured in seconds) unassisted. My legs are weak so I put a lot of weight on my hands and arms to support myself when I walk. I stretch, I do strengthening exercises, I do upper body work, I stand, and I walk — all in an effort to be able to learn to stand and walk again on my own like I could in July.

I have been supported by a massive group of friends, family, and coworkers in ways I could never have imagined possible as I go through all of this. That support system has been invaluable to my recovery work.

I did not ask for this to happen to me. But it did and I have no choice but to work the hardest I have ever worked in my life to get myself back to normal. It is the longest journey I have ever faced, and the most uncertain journey as well.

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Happy Mother’s Day?

Today is Mother’s Day, a day where we celebrate our moms and mother figures as well as a day where moms and mother figures reflect on the relationships they have with their children and those they regard as children. Which brings me to a story.

Today, I was in a checkout line in a grocery store. There was a woman behind me with two young kids. The store was busy and crowded, but that wasn’t unexpected for a Sunday afternoon. I heard the woman behind me say presumable to both her kids, “If you bump into that woman in front of you in line, I will leave you in the parking lot.” I didn’t hear the kids respond in any way, and since they were behind me, I couldn’t see their reactions, either. But I did kind of shake my head and roll my eyes as I thought to myself, “What a nasty thing to say to your child.” Then one of them must have come close to bumping into me because I heard the mom say, “That’s it. Move over here.” I heard a child’s voice then but couldn’t make out what was said. But the next thing I heard was the mom saying, “You know what, just go find another mom.” I was shocked, disgusted, and saddened.

I will fully admit, I didn’t say anything to the mom. I didn’t know what exactly to say. I had no idea how to say, “What the hell is wrong with you? Today is Mother’s Day and this is how you speak to your kids? You are a disgusting specimen of a mother.”

Should I have said something or done something? Examine your own mind and heart, and honestly, honestly, what would you have done? Would you have just been disgusted and silent like I was? Or would you have spoken up? If so, what would you have said or done? I guess I’m trying to figure out what my course of action should be if I ever encounter this situation again.

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#IWSG — Language Has Power

This post is for the Insecure Writer’s Support Group. The question for this month is, “What was an early experience where you learned that language had power?” And I had to really stop and think about that. I think that it happened when I was a little girl, reading all the Little House books by Laura Ingalls Wilder. I read all of those books more than once. I couldn’t get enough of them. I was fascinated by the Ingalls family and the life they lived. I would get lost in their family dynamics and the kind of world they lived in, traveling in buggies, riding horses, growing their own food, living in a cabin. It fascinated me and whenever I read those books, I was lost for a little bit of time with Laura and Mary, annoyed by Nellie and Willie, and warmed by Ma and Pa’s love.

I didn’t realize at that time that language has power. It wasn’t until I got older and realized what reading those words did to me that I realized the power of language, that it can evoke emotion and transport me to different places and times and introduce me to new people.

When I write now, that’s what I hope to do, especially with the novel I’ve been working on for so long. I want to make people feel things, or take them to different places, or introduce them to new people.

That’s the power of language, without even realizing it has that power.

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#BloggingAtoZ — Zero F’s

My final post is a list of 10 things I give zero F’s about (can’t use the actual F word — when I signed up to do this, I said my blog did not contain adult language or content, so I’m assuming you know what I mean). These 10 things are my opinion and I don’t care at all what people think about them. Hence, zero F’s.

1.) How other people think I look in a swimsuit. I’m overweight, I have cellulite, I have stretch marks, and I wear 2 piece swim suits. One piece suits are a pain to wear, especially if I have to go to the bathroom. So I wear 2 piece suits.

2.) What people think of my tattoos. I have 15 of them. I was once told the only people who have tattoos are junkies and whores. This was a family member who said this, too. Well, too bad if you don’t like tattoos. I do.

3.) My running pace time. Well, I care about it enough to make sure I can do a race, but as far as what other runners think of my 14 minute miles, nope, zero F’s. My mile is just as long as your mile, Mister or Miss 7-Minute-Mile. My marathon medal after 8 hours on the course means the exact same thing as the medal for the person who finished in 4 hours.

4.) Wearing jeans to work. Some people think it is unprofessional for teachers to wear jeans to work. I’ve been teaching for 28 years, and I’ve decided I’m going to wear jeans anytime I want. They are always clean and nice (like not ripped up or with holes in them), so if I want to wear jeans, I will.

5.) Superhero movies. I’ve not seen any of the Batman movies, Spiderman movies, Avenger movies, whatever. I didn’t like any of that when I was a kid, so I don;t care about it now. But you go enjoy it.

6.) My political opinions. I’m pretty liberal, and I a not in any way, shape, or form a fan of our current POTUS. I’ve been called names — vile names — and vilified for my political leanings, most often by family members, and it has come to the point where it makes me laugh.

7.) My pension. Teachers in Illinois are constantly being attacked for their fat pensions. There are indeed some teachers who retired with exorbitant pensions because of loopholes that were exploited. Those loopholes have long since been closed, but we have a horrid financial crisis as a result. Plenty of people are critical of teachers getting a pension, but I don’t care. I have worked for almost 3 decades as a teacher and have readily accepted lower pay than other professional counterparts. When I retire, I want my pension. I’ve earned it. I’ve paid into it every paycheck like I am required to do. It’s my retirement money, and if you think I don;t deserve it, I really don’t care because I know I do deserve it.

8.) Toxic family members. I’ve got plenty of them. And I’ve decided they aren’t worth my energy — negative or positive. If I don’t matter to them, then why should they matter to me? It used to hurt me when family members treated me horribly, but not anymore. Just go do your thing and I’ll do mine.

9.) Men’s opinions on women’s health issues. Yep, I’m using the “it’s my body” card on that.

10.) Having a showcase ready home. I could spend my time making sure my house is sparkling clean and ready to be photographed all the time, or I could spend time with my friends and family making memories. I choose the latter. Time well spent with people I love is far more valuable to me than being able to eat off my floors or pass a white glove test.

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#BloggingAtoZ — Yip Yips

One of my favorite memories from my childhood is watching Sesame Street. I still love it, if I’m being honest. I learned my first word in a foreign language watching Sesame Street: agua! And the thing that made me laugh the most was the sketch with the Yip Yips and the telephone! Maybe young kids today won’t appreciate it because they have no idea what a rotary phone is, but that hasn’t stopped me from showing it to kids and they always laugh! So if you haven’t seen it before, enjoy it! And if you have seen it before, enjoy it again!

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#BloggingAtoZ — Hamilton Exhibition

Okay, for my X post, I’m cheating a little by using the X in Hamilton Exhibition to qualify 🙂

Yesterday, the Hamilton Exhibition opened at Northerly Island in Chicago, and my husband and I had tickets to attend. The ridiculous weather not included, it was really a fantastic exhibit! It was a really cool way to share information about the real Alexander Hamilton and help understand the influence he had on this country while springboarding off the popularity of the musical, which is not historically accurate (which should not be a surprise to anyone, as Lin-Manuel Miranda has never hidden the fact that he took some artistic license when he wrote the musical).

Not just about Hamilton himself. the exhibit also shares information about other people, including Eliza, the Schuylers, George Washington, and Thomas Jefferson as well as information about the slave trade and the politics of the time. Parts of the exhibit are passive, where you read and look; parts are interactive or hands on, and there some that include video or animation. If you’ve been to the exhibit, I’m thinking about the Battle of Yorktown, which was probably the coolest part of the whole thing! It was part video, part demonstration and completely engrossing!

I also really enjoyed the room where it looked like a party at the Schuyler mansion and you can hear a little more about all the people who appear in the winter’s ball in the musical, including people like John Laurens and Marquis de Lafayette and even a slave girl who would have worked for a family like the Schuylers.

Lin-Manuel Miranda shared that he planted factoids throughout the exhibit where he took creative license when doing the musical so people could find them. I had a blast looking for them. I found 13; not sure how many he put there, but I Tweeted at him to see if I found them all! Maybe he’ll respond???

There’s a room at the end that is all about the duel between Hamilton and Burr which is kind of breathtaking. It includes a fascinating chart that explains that Hamilton lived for 32 hours after he left his house to go to the dueling ground to meet Burr, and Burr loved for 32 years after the duel. The wall-long chart chronicles Hamilton’s last 32 hours of life with Burr’s last 32 years of life in parallel fashion. It’s fascinating and sad and mesmerizing at the same time.

The final part of the exhibit is a room where those who attended are asked to share their own vision for America, being reminded about the legacy we leave and that “history has its eyes on you.” I did not leave a vision but rather took tome to read some that others left behind.

Alexander Hamilton had no control over who lives, who dies, who tells his story, but I will say that Lin-Manuel Miranda and the creative team did a pretty damn good job of telling Hamilton’s story!

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