A Warrior's Truth

From our camping trip 8/15/15

(I just like this photo)

Last night, I cried. In fact I've been crying on and off (mostly on) since 3.5 weeks ago when I went into the hospital for bilateral pulmonary embolisms which almost took my life. The night before, my symptoms started... and I waited until the morning. And I might not have woken up. That has haunted me. I am still battling the physical and emotional scars that go along with it. Every time I have chest pain, I wonder "Am I throwing another clot? Should I go to the ER?" It is exhausting, it is anxiety producing, it is isolating. Not everyone understands. There is trauma that accompanies life-threatening illness. It is messy. And it is not easily swept away. 

I've been waiting for my "AHA!" moment where life suddenly seems beautiful and precious and instead I was met with crippling depression. Today I woke up at 4 am, it's 7 am now... and suddenly I feel like a warrior. I read the word "warrior" on Facebook and immediately, out of nowhere, I knew that word describes me. It's not that "AHA! I know my purpose in life" moment I thought I'd get. But I feel fierce, I feel like fire. I am fire. 

I have been a special needs mom to Liam for 5 years and I've felt like a mama bear, but never a warrior in my own right. I've always considered Liam to be the warrior and us to be his support system, his advocates, his loving grizzly family. Right now I feel like my own warrior. The hero of my own story. I hope this feeling continues so I continue to really FIGHT for my health instead of feel passive, incapable, and vulnerable. I hope this is my turning point. I may not be totally void of tears, I may not know what my purpose in life is in the grand scheme of things, but I think - I really truly think - that this is my moment.

I am a warrior. I am fire. This is my truth. 

Graves and Caves - Just Another Day at Wildcat

Looking back at old hikes, this one dates back to Sunday, September 6, 2015. 

Wildcat Reserve in Upper Hibernia, New Jersey

That day we tried Farny first, with wild, unrealistic hopes that it might be less packed. The lot - again - was completely full. We skipped right over to Wildcat for our Plan B. Wildcat is always a good bet because it has so many trails and span over 3,700 acres. There is always something new to explore. I had read a blog post about a graveyard in the middle of the woods at Wildcat. Which is surely not something you see every day! Today, armed with a map, we intended to find it. Our plans were to find the graveyard and return. My feet - remember, this was two before my broken ankle - were sore from planar fasciitis and they longed for an easy, level path. The hiker in me wanted to rebel, but my feet have the final say. 

Wildcat has several parking lots to choose from, but we started at our regular lot. The orange trail leads up to Hawk Watch and, if you take it to the right from the parking lot, it goes past a gate onto a level gravel trail. We passed the gate and began our hike. The scenery here was vastly different than the way up to Hawk Watch, which feels like deep woods. On this side of the orange trail there were tall grasses, telephone poles scattered here and there, and a wide gravel path. Liam was uncomfortable with the tall grasses. He is one inch shy of four feet tall and the grasses were almost as tall as he was! Whenever we reached a spot where the plants invaded the trail, Jon would push them away from Liam with his pole. But once the grass was up to Liam's shoulders, Jon would lift him up over his shoulder and carry him through. 

The trail was not well marked, but I suppose they figured you couldn't miss your way. But in fact you could as there were unmarked turn-offs that an inattentive hiker could wander down for hours. At every intersection, we would stop and Jon would go ahead to try to locate an orange blaze on a tree or rock. My feet couldn't handle too much unnecessary walking. We passed a few old boundary walls which, I thought, may have dated to the early Dutch settlers. You can find many Dutch walls in northern New Jersey. At this point, we consulted the map and took an unmarked trail that promised to lead to the graveyard. We weren't sure if it would be obvious once we got there.

Sure enough, it was obvious. There before us stood a large wooden sign with unmarked crosses leaning behind it. The graveyard dated back to 1866.

Graves peeked out behind the grass. I looked to Liam to see if he was nervous. Not one bit. He wanted to explore. Our only rules were: Do not step too close to the graves as it is disrespectful and do not touch the graves. It was hard to find where we could pick our way through; there was no clear path. And the headstones were scattered haphazardly. We started reading the names and dates on the graves and found that many on this side of the graveyard were Irish names with deaths dating to the beginning of the graveyard (according to the sign). 

We picked our way through and entered the other side of the graveyard which was less overgrown. There, resting on a headstone, was something I didn't expect to see in a Christian graveyard dating from the 19th and early 20th century. It was a little Native American dreamcatcher along with a shell. To this day I wonder who put it there. Was the deceased of Native American descent? Who was continuing to put little offerings on the gravestones? The dreamcatcher looked relatively new, definitely not dating back to the person's death. The name, an anglo name, held no clues. 

Dreamcatcher

A rosary on top of a headstone - who is leaving these offerings to this day?

I stopped and looked down. A shiver passed through me when I came upon two discs painted with pictures of menacing-looking clowns. I had found one on the top of Torne Mountain, by the stone living room. I hadn't picked that one up. I had to find out what the mystery of the clowns was and so I picked these two up. One was a record in terrible shape. Both had writing on their backs. Reading that the person who had left them had a facebook page and that it was a sort of game involving New Jersey's creepier places (like a graveyard in the middle of the woods) lessened the shivers. I put them back where I find them. 

Liam was hungry, so we took care to find a tree root and rock away from the graves where we could eat. It didn't feel scary in the graveyard, only peaceful. I felt like I could sit there forever. I could hear small animals - chipmunks maybe - rustling around, but other than that... stillness. Solitude. Even Liam was quiet - which is quite unusual for him. It was a lovely, still moment. 

After we ate a couple of Pop Tarts, we continued around this side of the graveyard. We noticed that the names here were Eastern European - in fact I looked them up later and found that several of them were Czech. I found it fascinating that a flimsy bramble border separated the Irish section from the Czech section. More questions. Why were they separated? This was a mining area around the time of these graves. Where had the homes of these miners been? The gravel road - did it date back further than I had thought? Were the boundary walls not, in fact, Dutch? Did they date to the 19th century, built by Czechs and Irishmen? So many questions.

Now, after having our fill of solitude, we had a decision to make. Would we walk back to the orange trail and take it back in a usual out-and-back fashion? Or make our trip a little longer, continue on the unmarked path, take it to the white - creating a loop - and take it back to the orange? This is called a lollipop or balloon hike. We decided on the latter. My curiosity won out over my aching foot. On our way over to the white, a mountain biker whizzed by. Before he could get much further past us, I called out.

"Is this the way to the white?" I called.

He stopped. He told us that yes, it was. He'd been biking here for many years. I asked if he had seen the graveyard and he gave us a knowing smile. Yes, he had, he visits it often. He told us about the miners who worked here, that if we looked around more, we'd see mining exploration pits. I had seen a few on the Beaver Loop Trail. We began talking in depth about Wildcat (he hadn't known it was even called Wildcat, he just knew the area by heart). Oh, we MUST see the bat caves, he told us. We asked if we could get to them from here.

"No, you have to park on the other side of the park." He began giving us instructions that we promptly forgot. Jon and I are hopeless when it comes to verbal directions. We do much better with a map. So after he left us, we checked the map. After our lollipop hike, we'd get in the car and drive to the other side of the park. From there, it was a very short hike to the bat caves. Bat caves? I couldn't envision what they would look like. 

We turned off to the white trail and immediately the terrain became a quite a bit rougher. I wondered how the mountain biker was able to ride this section. We walked on a narrow ridge with a trench beside it. As we were about to rejoin the orange, we saw a small group of people walking the opposite way. I was about to ask them if they had ever been to the graveyard before, but thought better of it. I felt it was probably better not to alert strangers to the graveyard in case they found it a good spot to drink and litter. I felt proprietary about the graveyard. I wanted to keep the deceased people's final resting place safe.

After finishing the hike, we came back to the gate, hopped into our car, and drove to the other parking lot.

When we got there, we noticed that there were two places to park. We took a look at the map and decided to follow the blue. The map made the bat caves look as if they were almost directly on top of the parking lot. As we walked down the blue, we came across several large ruins to our right. Of course we have to climb on ruins, it's our family's unspoken rule. We clambered to the top. I couldn't place the age of the structure. It appeared to be concrete, but some areas exposed roughly shaped stones underneath. I wondered if it was at all related to the mining community. 

We were getting more and more confused about where the bat caves could possibly be. We walked over to the brook and stood on another set of ruins. It was a lovely picturesque scene - as long as you didn't mind the cars whizzing by over the bridge. We consulted the map again, but in fact, contrary to what the map said, the bat caves were NOT close to the parking lot. We continued on and came to the intersection between the orange and white. We chose the white intuitively and, as it turned out, we chose well! We came across a sign that read: BAT HIBERNACULUM TRAIL

We turned off onto this trail and came across a group of teenagers, congregated on a wooden platform, smoking cigarettes. I asked them where the bat caves were and they were extremely friendly, pointing us in the right direction and informing us that it was like stepping into air conditioning. It was a hot day so this I looked forward to.

And they were right. As we walked towards the metal grate, surrounded on both sides by gigantic rock walls, we were met with an arctic blast. The temperature dropped from the 80s to possibly the 50s or below. It was like walking into a refrigerator. The sweat on my brow turned positively frigid. It was a welcome relief from the heat. The walls bore down on us, making us feel very small. I wanted to get closer to the grate, but Liam refused. At the cemetery, he was not nervous at all. Here he felt intimidated by the teenagers, he felt dread when he thought about a dark cave. This was too much for him. He stood back with Jon. I took a look at a sign beyond the metal grate that said that the bats need a stable temperature and environment and those who trespass into the cave will be prosecuted. The sign was stuck to a concrete wall behind the metal bars with small openings just big enough for a bat to pass through. I couldn't see how someone could get in to disturb the bats, but I kept my distance all the same. 

On our way out, Liam had an ataxic episode. It made him drag his feet, wobbly and not quite himself mentally. We tried to walk by the brook, he insisted he would be okay to continue walking, but after the amount of hiking we had done and Liam's ataxia that slowed him down and made him cranky, we decided to call it a day. We didn't feel we missed anything as the brook parallels a group of houses. We retraced our steps and headed back for the car. 

On the way home, I asked Jon if he had been creeped out at the cemetery.

"No, not until the very end." I asked why at the very end.

"Well, I saw a headstone and was reading the dates on it. Then, out of the corner of my eye, I saw something on the ground and pulled Liam back away from it. Just behind the headstone, where the body would have been, was a big depression - a kind of pit - in the ground. I was scared because Liam and I almost fell in. Into a big hole. Or on top of a coffin. We just missed it. We could have broken our legs and been stuck in a grave out in the middle of the woods..."

As I Lie Here Fighting

As I lie here with monitors beeping and carts wheeling by outside my hospital door, I realize how remiss I've been when it comes to updating this blog. For that I apologize! SO much has happened in the last 2.5 weeks. It started with an injury and now for the past 5 days, I've been fighting for my life. I should go back to where it all started. At one of my favorite places: Wildcat Ridge.

On Friday, September 18th, Jon and I decided to squeeze in a hike at Wildcat Ridge while Liam was at school. We decided to walk below Graffiti Cliffs so we could see them better than we had when we were on top of them. My planar fascitis (causing pain in the foot) was acting up so I decided to wear my new sneakers instead of my new hiking ankle boots. The hiking boots put strain on my calves while I walk and they don't have as much support for my very low arch, so sneakers it was. Before leaving the car, I took a cute photo of my new sneakers. Little did I know that hiking boots might've saved me. Maybe, maybe not. What ifs only bring about uncertain regret.

We started the hike on a gravel path that went by several mining exploration pits. The path was wide and lovely with some rocky footing, but doable even with my foot pain. We passed a large branch in the way and Jon dutifully moved it off of the path so that nobody else could become ensnared in it. A good forest citizen! We walked about 3/4 of a mile until we came to a turn off on the blue trail to the left. As we started to follow the blue blazes, the terrain completely changed. On the left was a huge ravine that plummeted below a steep cliff. We assumed that if we continued this way, we'd be seeing graffiti cliffs eventually and we were excited by this new terrain. The path we were on was narrow and steeply climbed and descended - undulating - over and over and over. On a downhill, suddenly it happened. My ankles naturally roll as I walk - remember how I tore ligaments in my right ankle 5 weeks previously - because of the Ehlers-Danlos Syndrome. Because of this, I have a very strange walk. At this moment, my left ankle turned as I slipped on leaves and as I fell forward, my foot kicked up a large rock which hit me in the back of the foot. This is according to Jon who saw the whole thing.

The only thing I can remember is falling and I fell HARD.

"My ankle!" I screamed, deja vu of the last injury five weeks before. This time it was the left ankle. We scrambled to take off my sneaker and my sock to survey the damage. It wasn't quite as swollen as when I had torn ligaments, so I assumed that maybe this was a similar situation, a similar tear, and I'd be able to walk back okay if I put on an ankle brace and perhaps my hiking boots (which I had thought to pack in my backpack). I gingerly pulled on the brace and my boots and tried to stand. Nope. Wasn't happening. Not with the ankle boots. They pressed on the swelling and caused excruciating pain. I tried to walk regardless, but stopped after a few feet. I sat down on a rock while Jon changed me into my sneakers. The thought crossed my mind to call a forest ranger since the road we came back to from the blue (we had met up again with the mining gravel road) wasn't inaccessible by truck and we had seen a forest ranger in her truck before we set out. But I figured that if I could walk back on a bum ankle last time, I could do it again. Stupid. But I did.

Three-quarters of a mile sounds short. Unless you're hobbling on two hiking poles with an ankle that feels like it's in pieces. Over rocky terrain. When I first fell, I thought that this was similar to my last fall, but on the way back, I realized it was much worse. I began to panic, but I kept my head as well as I could. After about 45 - 50 minutes, we were back to the lower parking lot. We were parked in the upper lot so Jon had me sit on a large rock while he went up to the car. After waiting ten minutes, I called him.

"The car won't go back in reverse. I can't pull it out by myself. I don't know what to do," his panic-stricken voice said over the phone.

"Fine, I'll come up there," I gritted through my teeth

"You don't have to---" But I was already on my way, hobbling between two hiking poles. When I got there, I helped pull the car out. Yes, it was horrendously painful, but what choice did I have? I still tell people this and they can't believe I pulled a several ton car out (with help from Jon) out of a gravel parking lot with my ankle such as it was. But I did.

Soon we were at the Morristown Medical Center emergency room. I'll cut to the chase. It was broken. The ER doctor said a small fracture, but later we were able to see the x-ray and it was not a small fracture; the two pieces were completely separated and I had removed a large chip of bone. While in the ER, we brainstormed about how I'd be able to get around. I tried a walker, but it instantly caused cramping pains in my arms. So we decided that the next day, we'd rent a wheelchair. That night, I had to make do with the walker.

The next day, we got the wheelchair and what a difference! It took some getting used to, but I could finally move around - with Jon's help at first - without excruciating pain in my upper arms. Later that day (Saturday), we decided to go for a walk at Loantaka Park bike path. Jon pushed me in the wheelchair while Liam tried to figure out where to walk safely and out of the way, but not TOO out of the way. It was like a dance, everyone trying to figure out where to position themselves. But getting out in the fresh air was lovely. However, it also served to make me long for hiking, to feel the dirt beneath my feet, to push my sweat-soaked hair out of my face, to climb rocks, to pump those endorphins. There were a lot of people at the bike path and it began to dawn on me just how rude people are to those in wheelchairs. When I said hello to everyone, I got a lot of uncomfortable looks, a lot of grimaces, and when I said "weeee" as we went down hills, they stared at each other, not quite fathoming how someone in a wheelchair could be happy. Being in a wheelchair for the last 2.5 weeks has opened my eyes to how society views those with visible disabilities. And in general, it's not a good thing.

The next day (Sunday), we went to Bear Mountain and I about tore my hair out. This time people nearly ran me over with their cars. Suddenly I was invisible. The day before, people acted as if my disability (as temporary as it is - you could see my bandaged foot propped up) was communicable. The next day I wasn't even there. The crowds swarmed and we had a less than stellar time. Later the next week, Jon and I would go the lake portion of Bear Mountain - on a weekday - and find ourselves having a much more enjoyable time. But that Sunday was misery and I couldn't wait to go home.

At Bear Mountain and elsewhere in no particular order:

On Monday, I saw the orthopedist. He said that with a fracture like mine, surgery - a plate and two screws - was the only option. He scheduled it for that Friday. I was in shock. I had never broken a bone before and certainly had never had one set. The only surgeries I'd ever had were dental, c-section, and tonsilectomy. That week, I prepared myself. We went out a few times to enjoy nature (on paved paths), but I dreaded the day I'd go under. Liam has been under anesthesia 11 times and it never gets easier as his parent. But I had been under only a couple of times. What if I didn't wake up? Little did I know that the surgery itself wouldn't be the problem, but the complications afterwards would almost claim my life.

The day of the surgery, we quickly were slapped with a $850 co-pay almost as soon as walked in the door. We paid $150 of it and told them to bill us the rest. Not a good start to the day! It turned out that the orthopedist's hospital of choice was out of network. In the pre-op area, the nurse was angry with me for not being able to give a urine sample on command. She yelled at me that it would delay the surgery (they wanted a pregnancy test). But some of us have stage fright! In fact, with the blood test, I still went in early. They gave me a nerve block and the whole experience of getting said nerve block is something I tried to block (hardy har har) out of mind forever. Humiliating and very painful. They gave me sedation, not general anesthesia, and before I knew it, I was waking up. My first thought - and words out of my mouth - were: "My god, is the surgery going on right now??" The surgeon laughed and said no, they had just finished the surgery. I quickly came to find that my leg was completely numb and weighed about 1,000 pounds. I had to swing it around like a club that wasn't attached to my body. This proved difficult since the nerve block took over 24 hours to wear off completely.

And when it wore off - OH, when it wore off. The next night I was back in the ER with level 10 out of 10 pain. And I hesitate to ever use a 10 to describe my pain as I assume it could always be worse. But I was crying in public and if you know me, that never happens. I bawled in the emergency room at Morristown Medical Center. They never got me a room, they left me in the ER hallway, I never saw a doctor. The nurse unwrapped my bandages, saw that there wasn't an infection, and gave me a prescription for Vicodin. Then sent me on my way. And that was it. "Good luck. Feel better". I'll try.

I do admit the Vicodin helped more than the Percocet. Nights were the worst, but in general, the pain went from a 10 down to a manageable (for me) 8. If I can hike back 3/4 of a mile on a severely broken ankle, I think I'm relatively tough!

But then things took a turn for the worse on Wednesday evening. I suddenly was beset by fevers, chills, and the sweats. It was a little hard to breathe. Several online friends pushed me to go to the ER, but Liam was already in bed and besides, I was going to see the orthopedist the following day at 4 pm. I figured this might be a small infection with the wound site and he would be able to help me when he saw me.

The next morning, on Thursday,  I got down the stairs after Liam went to school, sliding down on my butt as I had done for almost two weeks. I took my wheelchair over to the couch and decided to take a little rest. But I couldn't rest: the fevers were back, chills overtook my body, and I gasped for breath. I took a Motrin and within a few minutes, I figured that it was breaking since cold sweat was pouring down my face and body. Jon took my heart rate and it was 130. Even sitting up, I was gasping for breath, it felt like someone was sitting on my chest and every intake of breath hurt.

"It's time to go to the ER," Jon said firmly.

"No, I see the doctor at 4, I'll be okay" I said.

"No, I'm making you go. I'm worried about blood clots. Especially since they run in your family."

I relented and we set out for the ER. When we got there, I could barely think straight enough to give them my name, birth date and symptoms. Sweat was gushing out of every pore, a cold clammy sweat. I worried that I'd look like a drug addict. I prayed that they'd take me seriously. Once they tested my heart rate and saw how profusely I was sweating, they took me back into a room, albeit a small room.

Then began the battery of tests. First a chest x-ray to make sure I didn't have pneumonia. That was clear. Then a doppler to check my legs for blood clots. There I was not so lucky. The news I was not ready for came. Indeed I did have blood clots in the leg I had surgery on - in fact I had many. Now the concern was: were they in my lungs? The doctor felt almost certainly, but he wanted a CT scan to be sure. I was shocked, completely shocked. Even though Jon had feared this, I felt too young, too vibrant for this to happen. But with my family history, surgery on my ankle, and being on birth control, it was always a possibility, no matter my age.

After a very long day in which Liam had to sit around for part of it, the CT scan went ahead. I had had to have benedryl because I have a reaction to catscan dye, so that took hours. The CT scan came back and yes, they were in my lungs. Both lungs. Moderately sized. I was terrified, absolutely terrified. My mom cried on the phone. She almost died of blood clots and complications from a surgery in 2005 and has been on Coumadin ever since. She well knows the fear. Memories of her near-death experiences came flooding back.

So for the last five days,, I have been in the hospital fighting for my life. I have been on blood thinners through IV and pill form. I have been on oxygen because when I sat in the chair, I gasped and cried from the pain and difficulty breathing. I have been poked, prodded, and endured indignity -- and I, like most, highly value my dignity. Today I have managed to sit in the chair for 2 hours and get to the bathroom - woohoo, no more bedpan - many, many times. I have done leg lifts in my bed with my good leg. Every time I work on moving, it gets a little easier and I need less oxygen. The doctor wants me to move as much as I can without hurting myself so that when they send me home, I'll  be as mobile as I can be with a bum ankle.

Right now they are trying to get my coumadin levels right. If insurance approves it, I can leave as early as today (Monday) or Tuesday with injections at home. If they don't, then I wait until the end of the week. It's all dependent on what they will pay for as it's a very expensive medicine.

Liam has been visiting me every day and on Saturday night, my mom stayed with him at our house so Jon could spend the night here with me. We had Indian food for dinner; it was perfection. Liam has been having a hard time expressing his feelings about the whole thing, but yeserday, these words came flying out of his mouth the moment he saw me:

"I missed you SO much, Mommy!"

And those words are why I was able to progress so much that day. They keep me going. That face, those words, that little boy keep me fighting. I will not let these blood clots get me. This is not the end for me. I will be back hiking one day, in orthotics and good boots and good braces. This is not the last you will hear from me. This blog is not over, our hiking days are not finished. I can promise you that.