Anniversaries

Anniversaries are markers of time. Whether marking a happy or sad occasion, the passage of time from an event is noteworthy. I recently found myself marking two anniversaries almost simultaneously, with vastly different outcomes.

I was watching the news the other day at lunchtime with my mom when I realized they were talking about a 9/11 remembrance. “It’s already that time?” I wondered. Then I remembered that day has its own significance to me. I quickly did the math, and I realized that this 9/11/24 is my 8th anniversary of my Transverse Myelitis diagnosis. The MS and Optic Neuritis didn’t join the party until December 2016 and January 2017, but it was the TM that did the original damage. I like to say it “Fast Tracked” my MS. ​

8 years. 8 years ago I was in the best shape of my life, living my dreams of owning and running my own small children’s museum and starting a new teaching job at a new district that I was really excited about. Then over the course of the 3 preceding days to 9/11, I lost feeling, and eventually use of my body from the waist down. It was in the wee house of the morning on 9/11 after a spinal tap and MRI at Dartmouth Hitchcock Medical Center that I first learned that the lesion on my spinal cord was in fact a rare disease called Transverse Myelitis.
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It was the 180 life-changing moment referred to in the hope4life180 blog title. But it was also the hope moment in the hope4life180 blog title. I had to sell my house and pause the business, but it was also when I bought my RV. It was when the Purple Moose books really took off. Then there was my relapse in 2018 when I landed back in the hospital for 5 days and rehab for 2 weeks when I basically had to learn to walk again. This time it was thanks to my MS stepping up its game and going full secondary progressive MS on me. Still, there was hope. I bought my first wheelchair, my Grit, which opened the door for long distance adventures I couldn't do with just my canes. It took me solo to the Patriots Superbowl Parade in downtown Boston, including on public transportation. It took me all over New York City, in and out of cabs, to Broadway musicals, and on an amazing adventure on the High Line. I transformed my Grit and my canes into amazing Halloween costumes. It was not the life I had originally chosen, but I was still living my best life. 

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But in May of 2020, it all began to change again. My mom had her two TIA falls that month and she was never the same. I went from moving back to Ohio after my father’s passing to coming back to NH to the role of sole care giver for my mom and her property. Looking back, my actions were always the best intentioned. I would care for mom and the house until she got better, or life sadly changed. I’d just put my life on hold until then. That was four years ago.
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I’m told Daddy began pouring the foundation for the house in NH when I was born. So that makes the house, er...  multiple decades old. He built it and maintained it up until his early 80s when two bad hips and numerous other health challenges began to slow him down. At least a decade passed before his passing at 92, when the house continued to age without attention. By the time I realized the extent of the decline it was not only overwhelming emotionally, but financially. I love my parents so much and I love that they had the chance to travel and live their lives to the fullest, but they did not financially prepare for either one of them to not be able to work, either on the house or in providing income for the end of their lives and beyond.

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​So, I did what I could. I’m a fighter. I took my fighting spirit that turned the first 4 years after my diagnosis into great things and focused it on how I could help maintain the house and property. All of my energies and focus went into keeping mom healthy, safe and happy, and maintaining the NH house. I knew it was too much as I was doing it, but when there is literally no other choice and you have broken pipes, rotting walls, and leaking roofs, you just keep doing what you can until you can’t.
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For me the beginning of the can’t was Black Friday 2023, less than 24 hours after arriving in Ohio, when I had a biopsy on the tumor my MS MRI found the previous spring. Yes, I ignored it that long, because I had other things to take care of. Obviously, those things weren’t me. Many of you already know that began a difficult health winter for me, because a week after the biopsy, I had covid (yes, I had my shot, no mom never got sick). I recovered enough to enjoy Christmas, but by New Years I had pneumonia. It took three rounds of antibiotics including being admitted to the hospital before it finally cleared. But a week after it cleared, I feared a relapse. Nope. I got covid again. After I finally got over that thanks to Paxlovid, I had my tumor surgery to prepare for, since the pathology from the biopsy was abnormal. I knew my body and the universe was trying to tell me to slow down. 

​I had to find time for me and regain some balance in order to get healthy physically and emotionally, but I honestly didn’t know how. I felt so far away from my previous joys, that I started by doing new things. I took online lessons on watercolor painting, a medium that always fascinated me. I started writing a cozy mystery book, that I think actually isn’t half bad, if I do say so myself. I joined a group that did mixed media online that stretched my artistic and creativity comfort zone, but was a blast! I was determined to continue all of these in NH, even lugging a bunch of the materials with me. I bet you already know how that went…

Once we finally arrived in NH there was just so much to do! There was an aftermath of a major winter mouse presence to deal with (way worse that the squirrel and ermine occupants from the previous winter), despite my extra efforts to contain and remove any potential food sources prior to leaving. The mice also ate a hole in my pool outside, so my way to cool off during hot, sweaty, outside work that my MS can’t tolerate was taken away until I got a new one. But the new smaller pool wasn’t accessible from the pool deck, so I basically had to build a bridge to link it to the pool stairs. That was challenging but rewarding when it was done! And the Pups were VERY happy they now had a place to cool off again too!

The late arrival in NH meant the field was overgrown. Unfortunately, my old mower decided it had mowed its last blade, despite my numerous efforts to resuscitate it, so I threw caution to the wind and just bought a new mower. That was great until it broke a belt and recently threw a tire. I never had those issues with the old beat-up mower. Mind you with all these repairs I had to either figure out how to do myself or find someone to do it which was not easy!
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The broken pipe damage from the winter remained to be dealt with, but wasn’t the top priority. The main bathroom septic drainpipe was also leaking when we got here, but the massive rain and flooding we had that washed away the top of our driveway more than once, rose to the top of the priority list. The same storms also took a huge section of the land from in front of the mudroom and threatened to wash away more in front of the house. I was working on fixing that was when I messed up my knee (on my GOOD leg). I attempted to seek medical attention 3 times, and not once was there an x-ray tech available, which was required to rule out structural issues before they could do any further testing for a real diagnosis. I finally decided it didn’t really matter anyway, because they all would say stay off it, and that was not happening! ​

​Drowning in repair costs we couldn’t afford, I took it upon myself to look into setting up a camping system Mom and I used on the way up called HIPCAMP. Basically, it is private property is rented out to campers that you can chose to accept or not. They get a lovely, private and unique stay, and you can generate some income. I set about clearing out two more sites at the lower entrance to the property in addition to listing my bigger Retro camper for rental in the cozy space I used to have for myself near the top entrance to the property. I didn’t get everything ready for listing until mid August, but I began to get bookings the day I listed everything on the HIPCAMP site (Mormor and Grampy’s Place). It’s been a wonderful experience, with the exception of the bear poop I found at one site between guest stays, and a Bobcat wailing at the edge of the field another night when we thankfully had no one in tents, but did have one small trailer and one family in my bigger Reto camper. 

​ I spent any “me time” I had restoring and working on my little 65 Scotty Serro I named Eloise, that I love so dearly. This summer I bought her new tires and rims, and even had someone come to the house to put them on. Which was great until the jack he used released too fast, and the body slammed to the ground hard, splitting the side seem on the front right side. Devastated, I went about learning how to repair said seem, and in the process resealed them all, as well as resealed the roof and repainted the body. We also finally found the vin, so for $23.00 I was finally able to register her. Unfortunately, none of the local mechanics would touch greasing the bearings, so sadly, Eloise and I never left the property. The pups and I did stay in her when we were full up Labor Day weekend, which was wonderful. And honestly, once I had her all decorated in my fun bright colors, there were days I would just open the door and look around and take a deep breath and smile at the hope she offered. I even stuck my art supplies I brought with me in bins under the table in hopes it would inspire me to actually use them. Still, it felt like just another unfulfilled dream or wasted efforts towards my own enjoyment, since despite all my work, I still couldn’t safely take her anywhere, and I only worked on art twice, and that was only because I had signed up for a swap, so I had to finish it, lol.

​By the time I had the Hipcamp sites open though, something began to change within me. My long to do list for the house projects was still there and very little had been addressed. I had instead spent all my time and energies addressing the immediate issues that kept popping up. I had succeeded in opening up the sites. I’d kept the house and property livable. That was enough. I didn’t want to do any more. I was physically and emotionally drained. I wanted to begin to reclaim my own life again. So, I went back to writing a new cozy mystery and was delighted by the characters and stories that flowed onto the pages. Once some income began to be generated by the Hipcamp sites, I began to think about maybe revisiting the Purple Moose books. Perhaps I could use some of the Hipcamp money to buy the physical copies of the books to sell at places like Polly’s Pancakes and other local establishments. 

​I searched to find the files I’d last worked on to give them a bit of a refresh. They were dated September 2020. 4 years ago. It had been 4 years since I had worked on what once brought me such joy and fulfillment. Of the 8 years since I got sick, I had literally spent the last half of it totally giving up on anything towards my own hopes and dreams. I’d almost reached a point where I truly believed they just didn’t matter anymore, and accepted that I was probably too old to do them anyways. But the realization that I let that much time slip through my fingers without realizing it was like being shocked with paddles on one of those medical dramas. I now feel almost an urgency to make up for some of the lost time.

​I have since updated all 4 of the main Purple Moose book titles and ordered the hard copies. I even created a digital version of the fall leaves book, which makes it so much more accessible to families since the print books are so expensive. I plan to eventually do digital copies for all the books. I’m determined to finish the Purple Moose Differences and Disabilities book, as well as the snow books that have been waiting in the wings for 4 year. And I want to finish writing my cozy mysteries, if only just for me. There is a spark that has ignited within me that I haven’t felt for a long time, and that is exciting. 

I hope this anniversary marks the beginning of a more positive turn of events for me. I am so pleased to finally have some focus to begin creating my own life again. But it is super important that I make it clear how hard it was to get to this point. In summing it all up and writing it all down it is easy to think, wow, that’s so great. And it is. I’m so proud of not only what I have accomplished, but that I have finally gotten to this place of refocus. But it was hard. It was dark and lonely and painful. I mean seriously. It took me 4 years to get to this place of understanding, and there is no guarantee I'll be able to stay here. ​I had a friend check in on me at the beginning of the summer to make sure I was ok. He said you have been uncharacteristically quiet. He was right. I gave him a brief overview of life and said I’d share when I had something good to share. I was quiet for a long time.

But the hard and the dark is such an important part of the journey. Getting through the day-to-day struggles, sometimes one day at a time, others one minute at a time, is the foundation that builds the victory. It’s not pretty. It’s not a great photo op. People are uncomfortable with that process, especially when it goes on for a long time, so we don’t share it. But sharing it felt important, so I began to try to share daily quotes and “current mood” posts on my hope4life180 FB page. If you want to know how I’m really doing, follow my hope4life180 page. I feel safer sharing the struggles there with others who have their own struggles too, as well as sharing the words of encouragement I have found to help propel me through those difficult days and moments.

I’ve been so impacted by the MeSsy podcast with Christina Applegate and Jamie Lyn Sigler as they each have been incredibly vulnerable and open about the dark parts of this disease we all have gotten way too good at hiding. Perhaps so good that I think we make people think it’s somehow easy. But it’s not. It's hard. The messy parts are a big part of the process. They are the bulk of the iceberg beneath the visible tip of victories at the surface. But there is something empowering in being able to say this is hard, awful and I hate it, but also knowing that I can continue to choose to move forward in grace and hope.

So here’s to my 8th anniversary of TM. To the victories and the failures, the highs and the lows, the hopes and the hurts. May I learn and grow through them all. My goal is to hit the 10 year mark with continued progress marked by the renewed optimism and hope on the path set before me now.