Got Grit?

​May 30th is World MS Awareness Day. Several weeks ago, the Grit team asked if anyone with MS would be willing to write about their experience with The Grit Freedom Chair. Today they shared the message I sent to them with the Grit family. I am humbled and honored. Here are the lessons I shared with them, that I learned from my Grit. They apply not only when I roll, but in life. May we all have a little Grit in our lives.

---

Got Grit? Yes, I do! No, seriously. I literally have Grit. Or at least a Grit. A Grit is an All-Terrain Wheelchair designed by some guys from MIT using bike parts and levers to help those needing help with mobility access for the outdoors. I met my Grit in June of 2018, but my story began in the fall of 2016. ​

​I was in the best shape of my adult life. I had lost almost 50 lbs, and was walking between 2 and 3 miles every day. On September 11, 2016, I would learn a word that would change my life forever. Transverse Myelitis. It is rare condition where a lesion forms suddenly on the spinal cord causing paresthesia (pins and needles and numbness) and paralysis. Mine began in my feet and over the course of 4 days caused me to lose sensation from the waist down. Prompt treatment helped me regain some of that sensation, but when MS came to join the party 3 months later, the battle began in earnest. In May of 2018, I had a major relapse. I spent another week in the hospital and 2 weeks in rehab learning to walk again. It was then I met my first wheelchair. At first I hated it and everything it stood for. But in the wheelchair, I was free to roam the rehab center with a speed and ease I hadn’t experienced since before I got sick.
​
Of course, I went full tilt. As a former fast walker, the ability to move quickly was a rush of adrenaline! But I quickly learned that I could add shoulder strain as an added guest, if I continued to push in the manner I was doing. Still, it provided a glimpse into a wheelchair as a useful tool and opportunity. I began to research all-terrain chairs. The thought of not being able to roam around outside with my dogs was a thought too miserable to even consider. I knew wanted it to be under my power, if there was any way possible. That is when I met Grit. 

---

I am fortunate enough to live in New England and have a good friend that was willing to take me right to their office to pick it up. I got a mini lesson and my friend took me to the mall and made me practice. My Grit and I bonded immediately! Though there was a bit of a learning curve, we soon became fast friends. As a TM/MS patient, I am fortunate to still have some use of my legs, especially my right one, so the steering pegs have been a real blessing.

---

Over the last 10 months, we have traveled extensively from New England to Ohio and Virginia. We completed a color run 5K with a friend, roamed the streets of NYC, as well as explored back roads of NH. We braved the crowds of Boston and joined the 1.5 million fans at the New England Patriots Superbowl parade. I have learned how to fit it in the back of a NYC taxi, and how to get it under a passenger bus, and on an Amtrak and on a commuter train. Getting it on the rack on the back of my car is a skill that has its own routine I now complete with ease, unless it is really cold. (But does anyone really like to do something like that in the cold?) I’ve had fun adding bins to hold things, crutch racks, and even a place to place a bag or a shopping basket. You'd be amazed at how much I can fit on it! I have figured out how to “roll” with both my yellow lab and miniature American Eskimo by my side. I was going to call my Grit, Athena, for the goddess of strength and courage she is for me, but it doesn’t quite roll off the tongue. So, after the Superbowl Parade, I thought maybe Brady would be a good nickname. Currently, I'm leaning towards Captain Marvel. ;) 

​My Grit has given me back the ability to do things I never could have done without it. I even use it inside when I need to get around at a large location. At the hospital, I can to get to appointments that are far away in other wings and floors without fatigue or strain. (Though there is an additional learning curve for inside activity as well). To get to an appointment with my two arm canes alone, it would not only add considerable time, but immeasurable effort. That is the biggest gift it gives to me. My Grit allows me to exercise the parts of me that work, and saves energy for the parts that struggle.
​
When I stop and reflect on my many Grit-ty adventures, I have found there are many lessons I have learned with it that carryover to life. Here are a few, I thought I would share.

---

It’s ok to start slow. 

​Ironically, except for the years when I was lugging around my 10 pound babies, my arms are my weakest part of my body. Starting to use the Grit required me to remember I had to start slow. It was ok to realize I had work to do. Just getting started was the biggest step. Baby steps are an important part of the process with the Grit, and in life.

---

Go a little farther every day.

When I began on the dirt road where I am living, it was disappointing to see how weak my arms were. But each day, I set a goal to go just a little further. Day by day, I went a little farther and every day I got a little stronger. Baby steps turn into bigger steps.

It’s ok to stop and rest.  

This dirt road has hills. Sometimes, in order to meet my goal, it meant I stopped part way up the hill and caught my breath and rested my arms. Resting gets a bad rap in this uber-productive focused society. Rest is good. Use it when you need to and let it fuel you forward when you are ready. It’s all part of the journey.

---

Lean into the journey.  

​Sometimes, you don’t tend to realize how steep the terrain is, until you are facing going up it with your arms. Then, my advice is to lean into it. Pulling back from the attempt can quite literally tip you over backwards, at least in the Grit, lol. In life and in Grit, lean forward when it get steep. Resist the urge to pull back from it. Lean in…and go on to step 5.
​PS: Should you forget to lean in and get tossed on your backside, make sure you are ok, laugh at yourself, learn from it, and GET BACK UP! (and go to Step 5).

Sometimes you have to keep your head down. 

​I realized once as I was heading up a hill, that I had made it more than halfway up the hill without even realizing it. How had that happened? I kept my head down and just looked at the next step or push ahead of me. Physically the effort was the same. But there was something about looking up and taking in the entire hill that made me tired just by looking at it. Keeping my head down and staying focused on what was immediately in front of me made it easier, I only had to go one foot. Than another foot. Then another. Before I knew it, I was almost there. I wish I could remember that in life as easily as I can in my Grit….

​Don’t be afraid to go someplace new. 

I really wanted to go to the Superbowl parade, but it was really intimidating. All those people. Me in a chair. So, of course, I went. I knew my Grit was up for the challenge. All I had to provide was the willpower to go with it on the adventure. It was amazing. I never would have had that experience if I had given into the fear.

​Don’t be afraid to ask for help.  

The only way I was able to make it to the Superbowl Parade was to allow others to help me. I think sometimes we are so focused on proving we are still tough and independent, that we turn away help when we shouldn’t. Sure, there are times like loading my Grit into a vehicle, when I really do want to do it myself. I know how it goes in without damaging it. Every time I have forgotten a part, it was when I had someone else help or do the loading. They aren’t familiar with it enough to know what is missing or what goes where. But at the parade, I did need help. Help to find the right train. Help to get across the opening between the track and the train. Help being guided to the handicapped viewing section by the guy with the walker that lead the way, and the lady that pushed so I didn’t have to worry about hitting anyone with the levers as I rolled by. Of the hundreds of people I encountered on that day, only one gave me a snarky glance. And when I apologized profusely, he looked embarrassed and was then polite. People want to help. My stubbornness in refusing it for no good reason robs us all from the chance to come together as a community. Help is good.

​​Be Creative. 

My Grit becomes an extension of myself. It is there, and it draws attention. Instead of seeing that as a bad thing, have fun with it! I had so much fun incorporating my Grit into my Halloween costume with my nephews and niece. It was the ship. We were the pirates. Mind you, I taught for over 27 years and 9 of them were in kindergarten. Being silly is kinda in my DNA. So if you are naturally serious, well, be yourself. But if you are at all creative, don’t be afraid to be yourself. That’s a lesson for in and out of the Grit.

Be inspired by the community around you. 

​I have found the Grit community to be a wonderful collection of kindred spirits. I suspect most of us have the personality that “fits” the Grit profile. We want to be active and involved. We refuse to let our disability, no matter what it is, keep us quiet. I am inspired by them to push harder and be a better rider. The life take away is this. Find people who share your joys and be inspired by them. And as you are inspired, I suspect the light lit within yourself will carry forth to inspire others, as well.

​Enjoy the ride.

​I went camping in my RV with my pups. I was late arriving and tired, but I wanted to see the beach before sunset. I knew that going out in my Grit would draw attention, and I didn’t want any then. I was feeling down, and I just wanted a quiet roll to the water. Of course, I was noticed, for the Grit and the pups traveling attached to it. But the positive reactions from everyone I encountered ended up filling me up with their energy. I left feeling down, but returned feeling glad. Life is not always easy. We are forced down paths we would never choose, given the opportunity. But we can choose how we react to it. I cannot fix my legs. But I can choose to keep moving in new ways. I can choose to enjoy the ride.

​So whether your Grit is internal or something you roll with, Grit is a good thing. I am grateful for mine and all that it has given to me. Got Grit? Yup. And it is good!