Blog

Posted on

Up To The Mountain

One of the keys to living life fully regardless of our circumstances is to find a purpose. Another is to live on purpose, which can be done every day. I realized my purpose back in 2005 but when diagnosed with my illness, I allowed myself to lose sight of it. I started living only for myself and what I wanted and was too caught up in the fear of death and in anger.

On a glum, misty day in October of 2005 my friend and I emerged from our hotel room to embark on a tour of Pittsburgh and do some other activities we had planned for the weekend. We were there for a U2 concert, but had enough things planned so even if the concert didn’t happen we could still have a fun time. I even joked, “If U2 shows up, fine!”

I knew we would have fun that weekend. Since I was a die hard fan and hadn’t seen the band since 1992, I knew I was in for a special night. What I didn’t count on was the epiphany I had during the second half of the show. Without going into too much detail, it was very spiritual and seemed to come from the concert’s atmosphere. It felt bigger than anything happening around me and caused me to feel separated from the concert itself, as if I was rising above my surroundings. It was a gentle prompting, urging me to “help people”.

It wasn’t a voice or a hallucination, but more like a spiritual force driving me away from my chronic negativity and depression. That’s the best way I can describe the indescribable moment. It shook me, but in a gentle way. I woke up. I was being called to action, and even though I didn’t understand it, I wanted to get busy and be of service to other people.

When the concert was over, the thick mist seemed to give the lights of Pittsburgh a certain glitter, and I was buoyant as the other fans around me cheerfully continued singing the final song of the night as they dispersed. And I remained buoyant the following morning. The sun was shining, the fall colors were gorgeous, and I had no fear. I baffled my friend, who was used to me finding the down side to everything and who didn’t expect me to notice the positive things. I think the change scared her!

Help people. But who? How? Later, while watching the DVD made for the tour, I realized Bono was shouting from the wings in the moments before the show began. Everyone. EVERYONE!

Help people. Everyone.

I spent the next six months helping as many people as I could. I held doors open for people, offered to help coworkers where I had always been kind of hesitant in the past (through laziness). I started calling my mother and sister once a week so they’d know I loved them. I watched the news for stories on world issues or causes I could support and felt amazing the entire time.

On June 22 of the following year, I returned from a storm chasing trip on the Plains and volunteered to work as an usher for Joyce Meyer Ministries. In the midst of my duties there, I got one of the worst phone calls of my life: my mother was in the hospital. I flew home emergently and watched as her condition waxed and waned. I got to take care of her and help her bathe and eat, things she could no longer do. After a series of days where Mom seemed to be improving, I decided to return to Pennsylvania to tie up some loose ends at work and to give a presentation at church on the AIDS and poverty crises in Africa. I was only to be gone for a few days. But my mother deteriorated rapidly, and she passed away before I could get back to her. I felt tremendous guilt and beat myself up for not “knowing”, and for thinking she had more time.

The aftermath of her death showed me although people in my family loved me, they did not love me the same way she did. There were many conditions. Also, she had served as a buffer; they expressed opinions and thoughts about me they never would have mentioned if she was in the room. This was all very hard on me emotionally and mentally, and I started to wander down a dark path again. But one night I heard Kelly Clarkson covering Patti Griffin’s “Up To The Mountain”, which is based on Dr. Martin Luther King’s final speech. It reminded me to pick myself up by the bootstraps and go on with my purpose of helping others, no matter how dark I felt.

Helping people and living my purpose got me through that rough time. I have often wondered if the experience at the U2 concert and the six months of “practice” between then and my mother’s illness was meant to buttress me for the loneliness and emptiness that haunted me relentlessly after my mother’s death. If I had no purpose during that terrible period, I would not have survived.

The years following my mother’s death have been fraught with struggle, loneliness, and a sense of abandonment. They still are. At first, I drew on the experience of the Pittsburgh concert for strength to keep moving forward. Then, in 2013, I learned I had an incurable disease myself. I started feeling even more distant from that magical night. I lost all interest in helping others and let myself get tangled up in thoughts of how pointless my life was, how I messed up and failed. I gave up on the bigger world issues, thinking my contribution was “nothing anyway” and let depression return stronger and more controlling than ever. I abandoned the “mountain” I felt the Lord had asked me to climb, and lost my faith altogether.

Then came the day in 2016 when I heard “So Alive” by the Goo Goo Dolls for the first time, followed by an intense love for the band and acceptance into their world of fans (otherwise known as “GooFam”). I have told the story many times. But hearing the song helped me realize how ridiculous and selfish I had become. King’s “Up To The Mountain” speech is about doing God’s will and living your purpose despite hardships, how you feel, and despite disappointments and fatigue. King dug his heels in for the sake of his mission. And so will I.

When I heard “So Alive” (and then “Over and Over”, “Long Way Home”, “Soul In The Machine”, and pretty much all of the “Boxes” album), I ran back to “the mountain”. I will work at helping people in some small fashion “’til the day I expire” and reach that peaceful valley. Because it’s what I’ve been asked to do. I’ll never take my eyes off my purpose again!

Posted on

Lung Days

99% of the time, I live quite normally. As I noted on my home page, the whole point of this blog and project is to encourage people with chronic diseases and incurable conditions to find life in their days and do what they can to find joy in things. I went from being miserable and caught up in the fear and anger that goes with such a diagnosis to living again, upon hearing the song “So Alive” by the Goo Goo Dolls. No matter how you feel about the band, I know what they did for me. Most of the feedback I have been getting about these posts has been positive so far, and I appreciate that. But there have been a few naysayers who don’t like the Goo Goo Dolls or the perfume I wrote about last time or whatever.

Those people either aren’t reading the posts, are reading them but not getting the point, or are reading them, getting the point, and are simply trolls. I respect the opinions of you, my readers. But this is not a space for negativity and nastiness, and I will not tolerate it. Want to be that way? Move along. There are plenty of other websites and blogs out there. You are wasting your own precious time reading something you don’t agree with, and those of us who probably don’t have a lot of time left certainly don’t have it for you.

Now that I’ve made that statement, I will move on to the point of this post: lung days.

Lung days are days when I am forced to be aware of my condition, when the disease announces its presence and reminds me it is always there. Last Sunday was such a day.

I went to OrangeTheory that morning, feeling very good after a solid night of sleep and lots of hydration. I started on the rowing machine and did very well. Then I moved to the floor, where we were to do planks, alternating shoulder touches while in the plank position, then double crunches. My heart rate was up because of the rower, but I got through the first round of the exercises with only a minimal amount of pressure in my chest area. During the second round, I felt as if all the air was being squeezed from my lungs, and when I flipped over to do the double crunches, I felt the blood rush to my head and more pressure in my chest. And on the third round, the pressure became too much and I blacked out. I was only out for a few seconds, but it was enough to scare everyone around me and embarrass the heck out of me.

With pulmonary hypertension (and the valve disease it has caused in my case), certain movements can cause this to happen. I was told never to do chest presses while laying on a bench. At least not with heavy weight. I have to limit overhead presses too. I have trouble with pretty much all inverted yoga poses, including down dog if I hold it too long.

I put a lot of strain on my arms when in a plank position, and my tightened core also diverts blood back through my vena cava to the right side of my heart. The pressure becomes too much and my heart can’t pump enough oxygenated blood (thanks to the narrow vessels in my lungs), or compensate for the increased pressure. I get dizzy, my vision gets fuzzy, and everything goes black. This is really the first time it’s happened; I have come very close to passing out in the past while doing the chest presses during Body Pump before being diagnosed many years ago.

The OrangeTheory instructor was wide-eyed when I returned a few days later and made a modified routine for me. So did the instructor at Crunch Fitness today. It’s kind of embarrassing. And it’s another sign my disease might be progressing.

Or maybe I just worked too hard that day, and the disease is unchanged.

Those of you with chronic conditions understand how frustrating limitations can be. But despite the emotions that go with having to modify my routine while others carry on getting stronger and more fit, I have learned to feel the “twang” of fear and sadness, then let it go by. I decided to keep going to the gym and keep race walking and hiking despite my slowness.

It would be easy to back down in the face of this new development, to retreat back into that place of darkness and fear. But the song “So Alive” is not about that. It always comes to mind when I am challenged with a new symptom, along with other songs from the “Boxes” album. “Over and Over”, “Long Way Home”, and “Soul in the Machine” can all set me straight and give me courage to push onward.

If you want to exercise, please make sure it is okay with your doctor first. Although I am a nurse with many years of critical care experience, I am not qualified to decide what you can and cannot do. My own doctor advised against swimming, pressing weights overhead (or doing chest presses with heavy weight), and avoiding high altitude. But studies have shown exercise to be both mentally and physically beneficial in pulmonary hypertension.

I will keep doing what I do and will try not to scare any coaches, gym instructors, or fellow hikers anymore.

Posted on

Feeling Alive: Kat von D Perfumes

Kat von D’s “Saint” and “Sinner”

Whew. As I type this, my eyes are grainy and tired from waiting for my computer to do some updating and writing future posts during that time.

Although I have been dealing with a chronic spending and money management problem for years (since about age 12), there are some times when being pragmatic has to go out the window for the sake of feeling alive. Because when you have a chronic illness, you are not guaranteed many opportunities to do so. Sometimes I purchase things I don’t need, and spend money that really should be going elsewhere. But I rarely regret my purchases.

Two of the things I love are in the photograph above. “Sinner” and “Saint” travel sized perfumes by Kat von D ( http://www.katvondbeauty.com ).

Last year, I wandered into Sephora for something else when I spotted a magnificent bottle on display at the entrance to the store. It was the full-sized bottle of “Saint”. The bottle intrigued me. I had never seen anything like it. So, being the impulsive/compulsive shopper I am, I grabbed one. It smelled terrific, and I only buy one perfume per year and that year was up. So I got in line to pay for my wares, including the item I had gone there for and a few other things. Sephora does that to a woman.

I promised myself I would only choose one of Kat von D’s two perfumes, the other being “Sinner”, with an equally ornate but black bottle. While in the checkout line, there was a young girl dressed in Goth style makeup and clothing. I overheard her telling someone else she did not like “Sinner”, so I was confident with my choice.

But I hadn’t even tried “Sinner”. Once home, I found myself becoming more and more curious about it. A few days later, I was back at Sephora testing “Sinner”…and I loved it! Later that day, I had TWO very ornate perfume bottles on my dresser, and I had my choice between which one to wear.

My “perfume year” is up once again, and I still have the ornate bottles sitting on my dresser, half full. The reason I only pick one perfume per year is that I am forbidden to wear perfume in the workplace, and I work a lot. I wear the perfumes on my days off, but there was far too much in each bottle to go through it all in that short time.

So this year I decided to actually BE more pragmatic about my choice and go with the travel sizes. But I am not going to toss those ornate bottles anytime soon. They are simply too pretty, and I need beauty in my life.

Even with lung disease, most days I can tolerate perfume as long as I don’t put too much on. And before I sat down to write this (after I took the photo), I opened “Sinner” and spritzed it on my forearms. It is totally wonderful, a small pleasure that has elevated my mood and made my day a tiny bit better.

For me, this is money well spent. In time, there will be medical bills and expensive medications and maybe even disability to worry about. Some say I should be saving all I have for that time. But I feel I need to LIVE during this time, being as pragmatic as possible but within reason. There will be plenty of time for seriousness later, when I can no longer do the things I love. Even when that time comes, I vow to still find things I love and adjust them to my capabilities. Life is meant to be lived, and these little perfume bottles will help me do that in a small way.

Posted on

Back Again!

Hello everyone! It’s been a while since I’ve written anything, here or elsewhere, and there are reasons. But I am back, and I hope to update you all more often.

Those of you who have read my bio know I am a huge fan of the Goo Goo Dolls and of U2. A big reason why I’m inspired to write today is I am between Goo Goo Dolls shows. Last Thursday, in Scranton, PA, I had the wonderful opportunity to meet John Rzeznik and Robby Takac again. Although I had met them before, the thought of meeting them again brought me great excitement. I started to get interested in things once more. Although the meeting was very short, it re-inspired me on many levels. John complimented me very enthusiastically on one of my tattoos, and told me to have a fun night. And I did.

This experience, along with the concert itself and being among other fans, was what I needed to come out of a mild rut and start working on the things I believe in and want to do in life once more. I’ve wanted to be a life coach for many years and worked on it in dribs and drabs, but was floundering with that dream. I also want to be a writer and a motivational speaker. All of these things got a shot in the arm Thursday night.

Notice how I didn’t say I want to “get faster” or “get stronger”. Ideally, I do. But it’s not likely to happen because those are areas of my life that depend on the capacity of my heart and lungs. I have to be reasonable with what I expect in terms of physical fitness.

I do not have to be reasonable regarding my ability to help others through my coaching, writing, or speaking. I can be totally radical in those areas. There are no excuses anymore for holding back.

Concerts tend to inspire me, especially when they are with my favorite bands. One of my first coaching lessons required the learners to list 100 things that light our fires and make us feel good and want to move forward. What makes you move? What stirs your heart and lights a fire in your belly? What can you be grateful for? Look around. What do you see that has beauty?

Things don’t have to be miraculous or big to be inspiring. And when we feel depressed or weak, we can still choose to find something to be grateful for. There is always some way we can do good for others, regardless of ability.

I saw two severely disabled fans at the concert. One was in a wheelchair and looked very frail, however she smiled and clapped and danced in her seat during the whole show, having a great time. The other was young and walked very slowly with a cane. I am not to the point of needing assistance yet, but am impressed with these two ladies. They were not at home feeling sorry for themselves. With the support of family or friends, they made it to the concert despite their hurdles. I hope when I get to that stage I will be blessed with people who will take me to shows, and that I have the will to go. These women inspired me almost as much as the band.

Think about your life. Make your list of 100 inspiring things. If you try hard enough, you will find them. If you can’t find 100, find 50. Or 10. Or 1. And act on your inspiration. Do something with it. Share it with others

Posted on

Blah

i haven’t been posting much lately because I haven’t been feeling well (that, and I’ve been having computer issues).  Tiredness, weight loss (unintentional), and tremors have been my constant harassing symptoms.  I am praying it’s anxiety from all the things going on in my life  (and there’s a lot).  All tests are normal/baseline, which has me scratching my head.  What I do know is I am a far cry from the woman who did the Seattle Half Marathon last June.  I can barely walk a mile, break a sweat with any activity, and had to drop out of hikes lately.  I am hoping for answers, and soon.  I drink protein drinks for extra calories (yum) when just a few months ago my weight wouldn’t budge no matter what I tried.  It’s scary

Posted on

Broken

I’m sitting in my recliner chair thinking about what didn’t happen yesterday.  Right now, I should be at the whirlpools along the trail near the Whirlpool Bridge, in Niagara Falls.  I should be sore and shaky as I take photos of the area.  My legs should be heavy and crampy and my mind should be blissful as I drive home, the Buffalo Half Marathon high in full swing.  I should have the shiny medal with the stars and stripes around my neck.  I should be pumped, knowing I walked the streets the Goo Goo Dolls walked as kids and teenagers, or that I’d just finished what is known in the running world as “America’s Best Race”.

Financial troubles are the main reason I couldn’t go; I could not pay for the downtown hotel.  That was a self-induced problem I created with my out-of-control spending addiction.  Also, I am facing unemployment.  Whatever money I might have must be saved for my day of doom.   I am about to lose everything.

The other reason is my illness. My body has become weak over the last several months.  I cannot even go on my beloved “easy’ 6 mile hikes every week anymore.  I tried a few weeks ago, and was burned out two miles in.  And I am lucky if I can go a mile around the high school race track without my legs and lungs burning.  One mile on the track is much easier than one mile on the street.

This time last year I was getting ready to go out to Seattle for the Rock and Roll Half Marathon out there.  I was in the later phases of training, and I got through the race no problem.  And I actually had money to spare.  Because of extreme irresponsibility (more so than the illness), I let myself go and am now in the most serious trouble of my life.

Even with my body being as it is, I would have tried at the Buffalo race.  Whether I got only one mile done, or all thirteen point one, I would have been okay with myself today.  Heck, even if I made it to Buffalo and felt too weak to race, I’d have gone and enjoyed a weekend away if it wasn’t for my money situation.

I am so broken I feel  I cannot be fixed.

When the registration notice comes out for next year’s Buffalo race, I will sign up and try again.  It will give me something to look forward to and work towards.  Perhaps I will sign up for the 10k instead.  But I know I will still be in financial trouble, more so than I am today.  I will have to be more creative finding ways to stay in the town that weekend.  Meanwhile, I’m still broken and will be for a long time.

Please feel free to leave comments or to contact me.

Posted on

Mother’s Day

Happy Mother’s Day to all the moms out there!  You are a blessing.

Unfortunately, I lost my mother to multi-system organ failure in 2006.  I remember listening to U2’s “All That You Can’t Leave Behind” in the days before she passed, and I heard “Kite” for the first time.  I had to pull the car over and cry, for that song made me realize she was going to die.  And when she did, a massive hole was left in my life that I’ve never been able to fill.  Her love for me was unconditional, no matter how badly I behaved or how unappreciative I could be (especially as a teenager!).  So Happy Mother’s Day in Heaven, my dear Mom.

Posted on

Hero of the Month: Margie Smith, My Sister

The Edge of Seventeen

My sister truly is a white-winged dove, much like the one Stevie Nicks sings of in her song “Edge of Seventeen”.  And although her struggles began close to birth, seventeen is when things really went south.  It was also when she began to learn strength and resilience far beyond what I can imagine.

Today, there is a name for the anxiety disorder that has plagued “Magg”, as we call her,  since childhood: selective mutism. I had the same condition, but much milder.  I was able to at least put my hand up in class or ask for help.  My fear of having no friends was strong enough to drive me to talk to other kids, though I was still labeled “shy”.  I hated being called “shy” for as long as I remember.  In her relaxed, socially comfortable state—a state she was only ever in around me and our parents—Magg would confess to hating the “shy” label too.  Yet she couldn’t talk to aunts, uncles, cousins, or even our Nanny with the same gusto I could.  This created the illusion I was a show-off at times, even though I was merely being a typical little girl/teenager.

Magg is plagued with epilepsy too.  Many children with selective mutism have epilepsy or migraines, and many have psychiatric conditions like obsessive compulsive disorder.  My sister once knitted a scarf obsessively, to the point where it was taking up considerable space in the living room.  She had to watch the show “Emergency” each night, and no one could say they liked Roy without inciting Magg’s rage.  She always had to be Roy in our little “Emergency games”; others had to be John or Marco or Dixie or Chet.  It got to be very annoying.  She could somehow find the courage to defend her role as Roy among the neighborhood kids, something I never understood.  And in between Emergency games and fury at the others who wanted to play Roy, Sis would have seizures.

Her problems didn’t stop there.  A man targeted us once.  We had met him the previous weekend when he was looking to buy an old car that was parked in our yard.  No longer considering him a stranger because we’d met him before, we were happy to let him play with us when he showed up unexpectedly while we were playing in a nearby field.  He was very friendly at first.  Suddenly, he turned angry with me, calling me a loudmouth and an ugly child who no one wants to play with.  The man must have figured out these were my fears while he was assessing and grooming us.  I can see now it was his way of isolating my sister from me.  He told her she was cute and had better toys.  I ran home crying.

The man kidnapped Magg.  And although he brought her back (or she was found…I am not privy to the details even to this day), the psychological damage he did was devastating and permanent.  That night started a rift between my sister and I, where her life veered away from mine quite suddenly.  We were never allowed to talk about it.  All I knew was she was harmed, all she knew was I wasn’t (although it affected everyone in the family tremendously).  Children with selective mutism are at greater risk for abduction because they appear vulnerable to predators like this man.  My sister’s first real brush with death may very well have been this episode.

The epilepsy was a daily challenge through Magg’s tweens and early teens, the seizures being intense enough to warrant stays in the ICU on several occasions.  Status epilepticus, which is a life-threatening chain of seizures that do not stop long enough for a person to get oxygen, was the norm for my sister.  And in periods between grand mal seizures, she was plagued with petit-mal seizures.  While in college, I witnessed her having ten one day.

In the middle of all of this, our father died suddenly, leaving Mom to bear poverty and my sister’s illness on her own, without her best friend and supporter.  Our father was a hard working deaf man who was loving and funny and cared very deeply for my sister.  I have no idea how Mom fared as well as she did over the following years.  My sister cried so hard the day he died she was nearly writhing.  Aunts and uncles catered to her, handling her gingerly and with great love.

I wasn’t privy to the details of the night the man took Magg, nor was I privy to the severity of her epilepsy.  I am not sure if this was to protect me, her, or to keep me from being in the way.  What I was left with was a vague sense of “something serious” that left me cowering in fear, or underestimating the gravity of what was happening.  I was both sheltered and chastised when it came to  my sister’s problems.  I wanted to help, but wasn’t allowed access to her in the hospital and wasn’t given many updates.  Even after I graduated from nursing school and cared for several patients with epilepsy, I was left putting pieces of the puzzle together (and still wasn’t allowed to be with her during a seizure).

When she was seventeen, my sister had a massive brain surgery done in Montreal at either McGill University or the Montreal Neurological Institute and Hospital, right before her high school graduation.  She was gone for a month.  I dealt with my subconscious worry by throwing huge, impressive parties with hundreds of drunken guests from all over Sydney.  I was a heavy consumer of alcohol by that time and was still plagued with anxiety about not having friends.  I achieved my popularity goals during that stressful time.  Word on my sister’s condition was scanty and, looking back, I was in denial.

When Sis and Mom returned home, it was as if nothing happened in the house (thank God it didn’t burn down!!!) other than one cracked window from where a boy fell against it.  My sister was bald, with a scar on the side of her head.  I prayed she was cured of both her disease and her mutism.  It was so much for her to go through.

She wasn’t.  A few weeks later, while out for an evening drive, Mom and Sis drove near my sister’s high school.  Mom was completely unaware it would have been graduation night, and all of Sis’s classmates were lined up in caps and gowns preparing to enter the gym.  Magg freaked out. Mom immediately regretted going near the school.  Magg went to school with those people her entire life, yet because of the timing of the surgery in Montreal, and because of borderline grades all year, she was unable to graduate.  I was off at a party getting drunk when all this was happening, at what was an initially fun then catastrophic night from my perspective too.  I had caught the boy I was in love with messing with another girl, and a boy who had been stalking me began to bother me again—things I probably would not recall if it hadn’t been for what happened to my sister the following day.  I awakened, hung over, to hear the dreaded snoring breaths of status epilepticus.  My sister had become so upset over the graduation that she brought on a seizure.  I found out last year she might have had a stroke that day.

The scenario was repeated again after a John Denver concert.  It was one of the most inspiring concerts I’ve ever attended; to this day I rank it in my top three.  It drove me to pursue singing as a career.  I wanted to make my living the way Denver did.  I wanted to perform in that very spot someday, before all the people of my hometown.  It set my life on a trajectory with success as a performer as the goal.  My sister was very moved by the show too.  She was all smiles afterward.

Whether it was the lights or the overstimulation of the crowd, Sis once again landed in the ICU with status epilepticus.  It was so disappointing that her surgery hadn’t worked.

But graduation night was a turning point in my sister’s relationship with everyone.  She strongly resented Mom for not waiting until after school was over.  Her anger grew as the years passed, and she seems to have mentally become “stuck” at age seventeen.  It seems to have trumped every other terrible experience she endured: the abduction, the death of our father, the surgery itself.  Mom needed constant reassurance that she had made the right choice.  I was, as Magg often points out, the “well child” who “didn’t have to go through anything and got to graduate with her friends”.

Over the last few decades, my sister has managed to live through a few more status epilepticus episodes, the loss of our mother, and rheumatoid arthritis.  When I was diagnosed with my disease, Sis was concerned—I feel guilty for perhaps leaving her the “last one standing” while everyone else passes on—but immediately reverted to teenage mentality.

“Well it’s about time you caught SOMETHING!” she said.  I spent so much time bracing myself, felt so terrible breaking the news of my shortened life span…and she says THAT?!?

My sister was merely demonstrating her resilience.  I have to pat her on the back for it. Maybe she was the “well/strong child” all along and I have been the weakling.  She is still selectively mute, and she is bound up with rheumatoid arthritis.  As I type her story, it doesn’t even feel true, the kid’s been through so much.  But she has overcome all of it.  Margie Smith fights.  Now I have to figure out her secrets.

Posted on

New York, New York

Although the days when I can freely ride the train and take day trips on my own might be limited, I didn’t let that stop me from going to see good old New York City one more time.  I always say “One more time” when doing something I love, because it forces me into a place of gratitude.  It’s not meant to sound dark or depressing.

Yesterday, I traveled to NYC to fully appreciate the Brooklyn Bridge. In 2014, I did the NYC Marathon (walking, of course) however the marathon course barely offers a glimpse of this glorious landmark.  Instead, the marathon treats people to the Queensboro Bridge, the Verrazzano Narrows Bridge, and one of the bridges connecting Harlem to the Bronx.

I rode the Keystone Amtrak to the city from Harrisburg at 6:12am, so I could hopefully catch what was left of morning light shining on the city buildings.  I was a bit late and had to contend with noon sunlight, which can be tricky for photographers.  Nevertheless, I managed to get great pictures.

The bridge itself was easy to find and VERY magnificent!  I am so glad I went.  I totally see why the marathon doesn’t go over it now: the entire walkway is made of slats of wood and concrete.  Runners would trip and get injured on such a course.  It was also very crowded, to the point where bicyclists found it impossible to get through at a decent pace.  I could see the frustration on their faces as the throngs of tourists spilled into the bike lane; walking lane full.  There were groups of French tourists for the most part.  Many looked to be high school students.  One group was blind folded walking in a guided chain, unaware their minds were about to be blown by the views of Manhattan.  It was fun to watch.

I made my way off the bridge and to Brooklyn Bridge Park, where I snapped a dream photo of lower Manhattan.  And I rode the ferry to Wall Street and headed back.

Through all this, my disease made itself known more than it ever has on a trip to New York in the past.  My heartbeat was too fast climbing up to Penn Station when I arrived.  I was hot and exhausted on the subway ride to Columbus Circle.  The walk to Lexington and 59th Street for the number 6 subway was hard.  I noticed everyone wearing jackets while I was drenched with sweat in a thin shirt.  It felt like it was 85 degrees to me.  It was only 61.

At the bridge I was delighted and that made the tiredness in my legs somewhat less noticeable.  But I struggled to walk the half mile from the pier to the Wall Street subway station, then got on the wrong train.  Twice.  My mind gets messed up when I get exhausted like that.  The long subway ride did not provide rest.  I nearly passed out once back at Penn Station.  It was a terrifying feeling.  I got an earlier train back home and fell asleep through New Jersey, which is highly unusual.  And since the trip, my lower body has been a painful mess.  My muscles are full of lactic acid from the high oxygen demand on them and low supply.

But I feel I will be okay to go back there to see Central Park’s fall colors.  I will do what I can for as long as I can with the energy I’ve got.  Pulmonary hypertension is my companion and we must work together.  And we can!

 

Posted on

Terry Fox: Hero of the Month

It was a cold day in April, 1980, when a young, handsome Canadian man dipped his artificial leg into the water of St. John’s Harbor, Newfoundland.  Terry Fox was determined to kick cancer’s butt by running across Canada.  Having endured an aggressive form of the disease that led to the loss of his leg, Fox refused to rest on his laurels or feel sorry for himself in his remission.  He didn’t let himself get caught up in the anger or fear that goes with a disabling, frightening diagnosis.  If he did, it’s not what he showed to the world.  To quote a Switchfoot song, he dared to lift himself up off the floor.

That day marked the beginning of Fox’s Marathon of Hope.  The Canadian Cancer Society partnered with him, and he managed to raise over $23 million dollars for cancer research.

At first, Fox didn’t take up much air time on the five o’clock news.  But as he limped through Newfoundland and began his journey through Nova Scotia, our channels in Sydney came alive with enthusiasm.  I recall being thirteen years old and super eager for Terry to come through our area.  I wanted to encourage him and donate a dollar or two.  Although I ultimately couldn’t get to North Sydney (it’s quite far from Sydney, especially when you aren’t old enough to drive, have to be in school, and your father is the only driver in the house), I eagerly listened to and watched the news each day following Terry’s progress.

As he ran through the other Atlantic Provinces, Quebec, Eastern Ontario/Upper Canada, fans would sometimes hand him five-figure donations.  Corporations donated millions.  People hosted fundraisers in the various cities and towns on his behalf, handing him the funds personally or by mail.  By the time he passed through the most populated sections of Ontario, Terry had become more of a hero than any other Canadian in history.

At least that was my take.

But after running up to 26 miles a day for all those months, Terry’s body fought back.  The Marathon of Hope was cut short while Terry was still in Ontario.  His cancer had returned, this time in his lungs.  It was devastating.  I remember melting down.  It’s one of those things where you remember what you were doing when you heard the news, and your life changed.  Even now, nearly forty years later, I feel sadness well up inside when I think of that day.

Terry Fox never gave up.  He endured more brutal rounds of treatment.  While I was focused on boys and popularity and other petty teenage drama, thoughts of Terry were never far away.  Everyone in town talked about him, and we hungered for the day when Terry would be restored to health again.

That day never came.  Ten months after he was forced off the road, Terry passed away.  A pall rested over all of Canada.  A teacher cried.  So did my friends. But Terry’s legacy never died.  To this day, Terry Fox events are held every fall.  From beyond the grave, Terry continues to inspire anyone who hears his story.  Millions are still raised for cancer research every year.  So even though he lost the fight against his disease, his mission and vision are still very much alive.

I have told this story as I remember it, and I hope to run in a Terry Fox Run this coming fall, or in 2019 if my health allows.  You can get more information about participating in a Terry Fox event here. You can also get the full, inspiring story in even more detail on that site.

I think we all possess the ability to impact the world the way Terry Fox did.  I hope to at least be a source of light for people with pulmonary hypertension or who are in recovery from an addictive behavior, rather than wallow in fear or bury my head in the sand.  I can’t say it enough, but I’m so grateful for the day I heard the Goo Goo Dolls’ song that inspired this website and freed me from the bondage of my own head.  It allowed me to find my “inner Terry”.

Where is yours ???