From Suffering to Courage

Elizabeth and her Dad, James D. Deane

So often over the years, people who learned about my diagnosis of bone cancer and partial amputation of my pelvis in my early twenties would say how courageous I was. I had seven surgeries over eleven years and never once felt courageous. I would deny that I was courageous at all, thereby, denying their opinion of me, almost like calling them a liar or fool.

It wasn't until one little old man told me that there were just two people in the world who he admired more than any others because of the courage they had due to succeeding to live a life with pain and suffering and not taking everybody down because of it.

The first person he admired for his courage was his own father who had been crushed between two railroad cars of a train and carried to the station where a doctor sawed off his leg. It was the early 1900's. they did things that way back then. This amputee lived out his total of 86 years with, at first, a very heavy wooden leg for forty years. Then. after all that time, he had a surgery to correct the first botched surgery, after which a new modern lightweight artificial leg was provided. This man worked a job until the day he died. I can see why this man was considered courageous.

The second person was me. This little old man, age 90, was my own father who told me this a few months before he died. I cried to know my father had kept those secret thoughts about me for so long, but terribly grateful he told me.

I have learned that courage is in the eye of the beholder, and you never know who admires your courage. Even though I did not (do not) feel courageous, when others say they admire my courage, I now let them say it and I graciously say thank you, reminding myself that there must be something I do or did that deserved that badge of courage.

Sometimes during those eleven years and seven surgeries, I cried and complained.  I wanted to die and just get it over with. Sometimes I thought I would go crazy. I felt I had no choice. I couldn't escape my circumstances. I just had to keep experiencing what came next. I felt like a victim of circumstances, not courageous at all. It amazes me that I'm still here. I made it! So maybe that did take a little bit of courage to get through it all.

It was not easy in my own eyes to think of myself as courageous, but now I can finally see it. I hope you will too. Realize that you can be afraid or be feeling discouraged and still have a courageous spirit. If life gives us a precarious path to follow and there is no getting off the path, all we can do is keep going even with the fear or pain or emotional trauma. That takes courage. Anyone who has faced adversity or suffered a loss or even stress that can get through to the other side of those things has courage. Keep in mind that like a soldier who has no choice but to face whatever it is he has to do, he does what he has to do whether he is afraid or not. He may not feel brave. But, he keeps at it even if he is afraid.

What I try to do is put one foot ahead of the other and keep going. As they say, the only way out of fear is through it. This goes for any kind of pain and suffering, too, in my opinion. Accepting whatever is happening is half the battle.

Speaking of battles. When it comes to cancer, people will say, he or she is a cancer warrior. I feel that anyone who has a medical challenge can be considered a warrior. Like any warrior on the battlefield, there is nowhere to run. You have to stay and fight the battle. If you have to fight for your life, then that's what you do, even if you do it kicking and screaming and crying and wailing. You get through it.

And now I have leukemia. But, that's another story... er... battle. Stay tuned.

Limping

Today the limping is not so bad. I don’t feel it is noticeable to others. But the pain is there just the same. Today the pain is in the front of the left thigh radiating down past my knee and the side of my calf; pain level #4, tolerable, and able to ignore. I’ve been functioning in a daze. The migraine meds I took in the middle of the night still have hold of my brain. The headache was the worst I’ve had in a long time; Up to a pain level #8. But, now the temporal artery is only swollen and throbs when I walk in the heat. Doctors say that migraines run in families and that they start at an early age. They’re right about the first part. I was a bit disdainful of my relatives when they complained of migraines until I had my first at age thirty five.

I digress.... back to the thigh. Today the thigh, yesterday, lower back, day before that--I forget. Sounds like a hypochondriac. Right? I used to hate my body for being weak, for hurting me like this. I questioned my sanity, too. How real is all this pain? Why does it fluctuate, and change so? Could I just be imagining it? As a teenager, I only had to worry about the hereditary bone-bumps (benign tumors) all over my body, as being unsightly and nothing more. Time has taught me what scientific research has revealed: that muscles, ligaments and cartilage were not designed to wrap around these cauliflower-like growths without stress and strain, thereby resulting in a chronic condition very much like a cross between arthritis and fibromyalgia. Most of my family has inherited this condition, too. Mine’s a little different. One of my bone bumps became cancerous and I’ve had numerous surgeries over the years beginning in 1967, to try to keep it at bay. I haven’t had a recurrence since 1980. But, the damage is done. About one quarter of the pelvis has been removed. That includes the right pubic ramus and right ischium, all the way from the center to the hip joint with no prosthetic implant to hold things together. Doctors said I’d never walk again. What do they know? I forgot what they said, and walked, albeit with a limp.

But they never told me that one half of my pelvis would flap in the breeze like a hinge on a gate without a lock. They didn't tell me of the years of excruciating pain while the bones rubbed against each other until they wore down the cartilage and began to fuse together. They didn't tell me that the muscles on the side, without the support, would shrink and spasm and need constant stretching. They didn't tell me about a lot of things. I’ve had to find out for myself. Its not too obvious to most people, this gaping hole in my anatomy. Even doctors who don’t know my history, don’t really understand the long term effects. Occasionally, I’ll run into a really good Physical Therapist who documents all the bio-mechanical reasons for my difficulties. Then I produce those records to any new doctor I might have and get some understanding. I’ve made it a point over the years to survive without being drugged. The first couple years I lived in a not entirely pain free stupor. It wasn't worth it. I’d rather feel the pain, cope with it the best I can, and feel alive. What annoys me most are the judges of my life, well meaning friends, family and strangers, alike, not living inside my body, who, when I have made monumental effort to climb a flight of stairs without wincing, say something like: “You look like you do just fine to me. Maybe you’re over-reacting!” I never know whether to cry or strike out in rage. I usually do nothing. I’ve often thought if we were all born with a simple purple dot on the forehead that would intensify in color indicating increasing pain levels everyone would know exactly how everyone else was feeling.

Courage and Fear

Digital art by Elizabeth Munroz

So often over the years, people who learned about my original bone cancer diagnosis and subsequent recurrences over eleven years, would say how courageous I was. I would deny that I was courageous at all, thereby, denying their opinion of me. (almost like calling them a liar or fool)

It wasn't until one very old man told me that there were just two people in the world who he admired more than any others because of the courage they had due to succeeding to live a life with suffering and not taking everybody down because of it.

The first person he admired for his courage was his own father who had been crushed between two cars of a train and carried to the station where a doctor sawed off his leg (it was the early 1900's. Thats how they did things way back then). This man lived out his total of 86 years with, at first, a very heavy wooden for forty years. Then he had a surgery to correct the first botched one, and a new artificial leg was provided. This man worked a job until the day he died. This man was his own father.

The second person was me. This little old man, age 90, was my own father who told me this a few months before he died. I cried to know my father had kept those secret thoughts about me for so long, but terribly grateful he told me.

Sometimes I wanted to die, sometimes I thought I would go crazy, but I'm still here, so maybe that did take courage to get through it all.

I have learned that courage is in the eye of the beholder, and you never know who admires your courage sometimes. Even though I did not (do not) feel courageous, when others say they admire my courage, I now let them say it and I say thank you, reminding myself that there must be something I do or did that deserved that badge of courage.

It was not easy in my own eyes to think of myself as courageous, but now I can finally see it. I hope others who are told they are courageous will too.

Try to realize that you can be afraid or feeling down and still have a courageous spirit. If life gives us a precarious path to follow and there is no getting off the path, all we can do is keep going even with the fear. That takes courage.

What I try to do is put one foot ahead of the other and keep going. As they say, the only way to out of fear is through it.
Check out the link below to learn more about overcoming fear.
http://www.psychologytoday.com/blog/insight-therapy/201009/overcoming-fear-the-only-way-out-is-through

Begged to be Written

I couldn't sleep but three hours, too much on my mind; my heart heavy.

So, at six when the kitty brought me his mouse, I flung it across the room for him to chase. He'll slam himself into a wall to fetch it and return to me, panting, with the thing crammed in his mouth.

I picked up my book to while away the time hoping I would grow drowsy, but to no avail. Got up, made tea and toast, and a poem begged to be written.

My eyes sting but do not cry,

Another friend to face surgery again,

another bone tumor in the skull.

How much can the front 

of the face be cut away?

For years now, my friend,

phone calls across miles,

him joking all the time.

My insides churn,

My throat protests.

Why I took this on,

this helping others

with the same disease,

seems hollow to me now.

So hopeful was I

to imagine bringing others

down that familiar path,

one surgery after another.

Little did I know so many

would result in death.

I ask myself why did I survive.

imagine that

Thirty years ago John Lennon faced death and died. That day, I awoke from my seventh cancer surgery and survived.  I can never think about his death without ultra gratitude for my life. I never imagined that it would turn out that way.

Can I be a Biggest Loser?

Dear Biggest Loser,

I cried tonight watching when Corey fell, not once, but twice and he didn't get a chance to make it over the finish line.

I cried when he said he wants to lose weight, but he doesn't understand why he keeps eating. And while he's eating he keeps asking himself why, while a part of him says to stop, but he continues to eat anyway.

I cried when I saw the oxygen mask over his face and the Emergency vehicles ready to take him away. I cried as I took what was left of my carrot cake I had been munching on while watching the show, and tossed it in the garbage.

I'm like Corey. I know my health is quite seriously in danger. I really want to lose weight. But, I still eat incorrectly and while I'm doing it (or not eating at all) I still ask myself why and still do it anyway. There's no part of me telling me to stop, though. It's more like, "Shhh... don't think about it."

And I would be like Korey trying to run a mile. I would fall down too. Not only can I not walk a mile. I cannot run at all. I haven't been able to run since my leg popped out of it's socket. I did it twice and then that was it. I never ran again.

I had a rare bone cancer starting when I was 22. I had seven recurrences for eleven years. A portion of my pelvis was removed along with some pelvic floor muscles, as well as a muscle on the inside of my leg. There is no built-in prosthesis holding me together.

Originally, I was told, if I survived, I would never walk. But, I did walk, and have had to get out of a wheelchair and learn to walk again more than once. I've done the best I can all these years. I'm 65 now. Even with my eating the wrong foods, I'm still able to keep my (over) weight stable these last 15 years. But, I'm afraid as I become more inactive I will gain more.

I know I have gone against the odds so many times and learned I have something in me that fights even when I think I have given up. But, this part of me that cannot eat right, wont eat right, defeats me.

I keep wondering how soon it will be when I'm in a wheelchair again, and at what point I wont be able to make myself walk. There's longevity in my family. I don't want to spend the next 30 years unable to walk.

I don't need to lose hundreds of pounds. If my goal weight were to be the healthy weight I had at age 18, I would only need to lose 60 pounds. But, I know my challenge to lose that amount of weight would be just as difficult for my body and mind as if I had hundreds of pounds to lose.

I doubt I would be accepted for the show. I have other medical problems that would probably disqualify me.

I wish you would have a Biggest Loser season where you help disabled people to lose weight and show us how to do it with adaptations equal to our physical capabilities. Could you do a Biggest Loser show like that? If you do, I bet it would be the biggest challenge that Bob and Jillian (and Dr. Huizenga) have ever faced.

One Step at a Time

One Step at a Time by Lenor Madruga Chappel

Lenor's story of living through extremely frightening circumstances is truly mouth dropping, amazing.

Not only did she face being diagnosed with a very rare bone cancer, chondrosarcoma, but the only effective treatment for her was a full amputation (hemipelvectomy) with surgical removal of her leg and a portion of her pelvis. During a time in my life when I was faced with the same diagnosis, and so discouraged,  I was given this book by my mother. It gave me the hope to carry on to realize a mother with children could not only survive, but thrive.

Lenor's story of how she dealt with her diagnosis, her surgical experience and her positive recovery is more than inspiring.

Though the diagnosis and surgical aspects of her story sound frightening, this book is not gory. It is uplifting and positive. It teaches by example how to get inner strength through such an incredibly devastating life circumstance. Even without facing such medical possibilities, this is a book for anyone to benefit from reading.

Can be purchased at iUniverse