The Good Old Days

When I was first diagnosed, I was furious with the universe. I remember thinking it was so unfair. After three years of sacrifices while juggling my career and classwork for my doctorate, I was ready to ease back into my “real” life. I had trips to take. I had family to visit. I had friends to reconnect with. Suddenly I felt like it was all being stolen from me. All I could see in front of me was a black hole of uncertainty.

I am now one year out from the diagnosis and seven months out from the surgery, and while the anger has subsided, I still miss the good old days. I long for a time when pain was not my constant companion. I wonder what I might have done differently had I known what the future held for me. Would I have spent so many extra hours at work? Would I have put relationships on the back burner to focus on my education? Would I have travelled more? Risked more? Played more?

My old life feels like a distant memory. I think this is probably something many SCT survivors can relate to. When I heard Macklemore’s song, Good Old Days, it really resonated. I was particularly struck by the following lyrics:

Never thought we’d get old, maybe we’re still young;
Maybe you always look back and think it was better than it was.
Maybe these are the moments;
Maybe I’ve been missin’ what it’s about
Been scared of the future, thinkin’ about the past
While missin’ out on now.
We’ve come so far, I guess I’m proud
And I ain’t worried ’bout the wrinkles ’round my smile.
I’ve got some scars, I’ve been around.
I’ve felt some pain, I’ve seen some things, but I’m here now.
Those good old days… 
Those good old days.
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Grit: The Courage to Continue

The past five months have been a real challenge. Some days I don’t even know who I am because constant pain has taken over my life. But I keep showing up day after day. I keep trying to fulfill my responsibilities to the other people in my life. I keep trying to make it through each day with as much grace and as little whining as possible. That is what grit really is, and it is what the people in these photos represent. They really are an inspiration. If they can do it, so can I.

Steve McCurry's Blog

Tibet

Success is not final, failure is not fatal:
it is the courage to continue that counts.
– Winston Churchill

Nepal

Kathmandu, Nepal

Over time, grit is what separates fruitful lives from aimlessness.
– John Ortberg

Charikar, Afghanistan

Johnstown, PA, USA

Grit is not just simple elbow-grease term for rugged persistence.
It is an often invisible display of endurance that lets
you stay in an uncomfortable place, work hard to improve
upon a given interest and do it again and again.
– Sarah Lewis, PhD

Calcutta, India

Afghan Border, Peshawar, Pakistan

Afghanistan

Childhood doesn’t have to be perfect, and children don’t
have to be beautiful. From a bit of grit may grow a pearl,
and if pearl production doesn’t materialize, the outcome will
still be preferable to the shallowness of vanity.

– Laurie Graham

Java, Indonesia

Angkor Wat, Cambodia

Philippines

Porbandar, Gujarat, India

Heroes are never perfect, but they’re brave, they’re authentic,

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Do What You Can’t

I know… it is an advertisement, but I saw it during my first week back at work after my spinal cord tumor surgery, and I have to tell you that it really resonated with me! I was feeling so broken, so fragile, so incapable of facing the challenges that were bombarding me. Then I saw this ad and my eyes filled with tears. Do what you can’t… that is my calling for the next year as I tackle this recovery. DO WHAT YOU CAN’T.

The Return of the Jabberwocky – Part II

I didn’t recognize the Jabberwocky immediately when he returned. There were big changes happening at work, and in addition to accepting a new position with much more responsibility, I was enrolled in a doctoral program as a full-time student. To say that I was busy is an understatement. I knew that I was tired all the time. I also knew that I was having back pain on and off – but the pain was minor compared to what I experienced with my migraines.

I easily ignored it at first. But with time, I started getting up from my desk more often to stretch. When I bought a new car with seat warmers, I found myself using them all the time. And I was complaining incessantly about uncomfortable chairs. There were even days when I sat on the floor during class because the seats were causing me too much discomfort. But still, the level of pain was not even close to what I’d experienced with the migraines, so it barely registered in my mind.

With the new year, I made a commitment to exercise more. I got a membership at a local gym, and I started working out a couple of nights each week. The gym had a pool, so after about a month of walking the track, I decided to give swimming a try. Two weeks passed, and I started to notice a tightness in my back. I mentioned it to my massage therapist, and she told me that it might be from muscle fatigue. She tried to release the tension, but the attention she was giving to my lower back produced more pain. When I left that session, I thought she might have somehow forced something out of alignment. Unfortunately,  I waited for the pain to subside – but it didn’t.

The next week, after swimming two laps, the pain was more than I could handle. I was halfway across the pool, and I wasn’t sure I would be able to make it to the wall. I did make it, and I tried to stretch. I thought it was a muscle cramp. Stretching didn’t help. I attempted another lap, but I had the same result.

Convinced that I had injured myself, I went to the doctor. He, in turn, sent me to physical therapy. After working with me for a few weeks, the PT told me that we really needed images. He thought some of my symptoms pointed towards a schwannoma, but those were rare and to be honest, I wasn’t suffering from some of the tale tell symptoms.

The MRI was ordered, and I really thought we would find out that I had a pinched nerve – probably from something that had slipped out of alignment. But it wasn’t going to be that simple. It was going to be something called a schwannoma… there was that word again.

I went home and tried to google it. I wanted every bit of information I could find. So I suppose this blog is going to become a way for me to sort and process the information that I find in a way that can help me make the very important decisions that I am going to have to make in the coming weeks regarding treatment.

If you are interested, here is a picture of the culprit.

Careful…

Careful… it is a word that you could use to describe most of my life. I have always been careful. Careful to follow the rules. Careful to not break a bone. Careful to avoid sickness. Always careful.

Afraid… that is another word that has dominated my life. I have been afraid of the consequences that come from not being careful. Afraid of pain. Afraid of loss. Afraid of not being able to live my life as I want to live.

When the plane takes off, I worry about a crash… not because I am afraid of dying. Dying is easy. No, I have been afraid of suffering after surviving a crash. I have feared the broken bones, the surgeries, the inevitable changes to my daily life. And above all, I have feared a life lived with pain.

Same thing when it comes to cancer. I have thought about what I would do if I got a cancer diagnosis, and long ago I decided that I would much rather live my very best life (even if it is a short life) rather than live a long life of pain and sickness.

As you know, pain is not a stranger. I have been experiencing significant levels of pain on a regular basis since the age of 16. That is why pain is one of the few things I really fear. I know what it is like to be in the grips of pain. I know the desperation it can cause. I know that death couldn’t possibly be worse than trying to live with constant debilitating pain. And yet, despite my efforts to avoid pain… this is what keeps pushing its way into my life.

Now that I finally got my migraines under control and was beginning to enjoy a life that was not dictated by pain, it is suddenly back with a vengeance. And this time it promises to be my companion for the rest of my life. My condition probably will not ever kill me, instead it will slowly rob me of the life I currently have. The pain is already here, and it has already forced me to stop swimming. Soon, I suspect it will creep into other corners of my life… keeping me from participating in some of my favorite activities. In the space that was once filled with dancing and laughter… there will be pain.

Yes, I can have a surgery to remove the tumor… or rather, I must have the surgery to remove the tumor, but there are no guarantees that the problem can be fixed. I may undergo surgery and come out on the other side feeling fantastic… but realistically, I should view the surgery as an attempt to keep the problem from getting worse. Yes, I might have some weakness and pain for the rest of my life… but it could be worse. I could lose control of my bladder. Yes, I might even come out of the surgery with even more pain issues than I currently have, but if I don’t have the surgery I know that one day the pain level will increase to the point of being unbearable.

So there really is not a “good” option… only different shades of the same color… variations on the same pain. And I am left sitting here wondering what kind of quality my life is going to have from this point on… despite years of trying to be careful.