A Big Decision at Fourteen

Posted on September 14, 2009 by ReiVi

It was the summer of 1987. My uncle and I were seated in one of the small clinical examination rooms of Shriner’s Hospital for Crippled Children in Los Angeles, CA. It was my second trip to the US. The first was a couple of years ago — when  stayed about a year in the US — when the Shriner’s sponsored my trip for the first time. [Although my parents were with me for both trips, my uncle was designated as my official guardian while I am in the US because he was a citizen.]

A few pleasantries were exchanged and the doctor asked how I was doing since my last check-up over a year ago. He then proceeded to discuss my most recent X-ray — the one taken earlier that day. He said that the minor procedure that they performed when I last came (wherein the stopped my NF infected left leg from growing faster than my right leg) was successful. However, they noticed that the tumors are causing the bone of my left leg and my left foot to slowly disintegrate. He put up the X-ray on screen and sure enough, there was hardly any structure on my left foot. No wonder it felt so soft along the sides!

He said that they could amputate the leg — just below the knee — as soon as possible. The other option, was for me to wait until I was 18 (I was only 14 at the time) and have it amputated by then. Maybe my right leg would have caught up with my left leg in terms of growth; maybe the tumor would have stopped from eating up the bones. It was a lot of maybes.

“You don’t have to make the decision now”,  he told me.

But as my uncle and I walked out to the hallway where my parents we’re waiting for us, I had already made my decision. I couldn’t live with the pain on my left leg anymore. I just wanted to take a chance. Although the doctor never gave any assurance that the pain will go away or if the bones will stop from disintegrating, I felt that having my leg amputated will at least give me a chance.

As we all sat down in the lobby, my uncle and I related to my folks, my aunt and the other people who came with us, what had just transpired. I then looked at my parents and told them quietly that I have made my decision.

My parents nodded their heads and mouthed their okays. They were smiling but I noticed tears welling up in their eyes. They were trying their best to hold those tears back. Everyone then decided to troop down the nearest church to pray for guidance and to give thanks. Inside the church, my dad finally couldn’t contain himself and burst into tears. I just hugged him and my mom real tight, telling them that I’m sure everything will be alright. In between sobs, my dad said that he wished he could just give me his leg somehow.

It was several months before my leg was amputated. I had to go through psychological evaluations to see if I could easily cope with losing my leg.

Now, it’s been nearly 22 years since I had chosen to lose my left leg. I’ve gone through nearly half a dozen artificial legs since. It was difficult at first, but I coped. Maybe I’m still coping.  But even if I could go back in time 22 years, I would have still made the same decision.

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What does the future hold?

Posted on August 14, 2009 by ReiVi

Will he grow-up normally despite being different?Growing up as a kid with NF, I’m sure my parents had this nagging question inside their heads at one time or another: “Will he grow up to be normal?”

I’m guessing that the  ”growing up to be normal” question isn’t really exclusive to parents whose kids have NF, other disabilities or  special needs. It’s a question that all parents deal with but the question comes with a bigger question mark for parents of NF children because NF itself is sort of a question mark in the sense that the parents will never know when, how and to what extent NF will manifest itself.

My parents never gave a hint that they were worried about such things when I was growing up. It is only recently — about 30 years later — that they are sharing with me about their apprehensions at the time.  They really felt quite helpless during those times when there was little information about NF. When there’s lack of information, there’s got to be uncertainty.

The thing about uncertainty though, is there’s always hope. Uncertainty never meant “something bad” for my parents. It was always, “something good”. Throughout my formative years — preschool, grade school, high school, and college — Dad and Mama supported me in everything that I did and experienced.

They kept saying that it shouldn’t hinder me from doing anything and that even if NF will be a part of me, it did not define who I was and who I will be. They said that I may be different from the other kids but being different also means that I am unique. I was taught not to dwell on my having NF. I was taught not to blame anyone — including God — for my having it; that God allowed me to have NF because He knows that I’ll be able to handle it and maybe even become an inspiration to others.

Because of the support they gave, the future had always been bright for me. It was a bright future then and it is even a brighter future now.

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Dealing with the Pain

Posted on July 23, 2009 by ReiVi

I have never been able to remember when I first experienced the pain associated with my NF. Perhaps it was because I always had a high-level of pain tolerance even when I was very little.  But as I grew older, my left leg — on which had numerous nerve endings had formed — had become very sensitive to pain. If I accidentally bump my leg against something, it was horrible. The pain would just go up and down my leg.

With the amount of nerve tissues on that leg, I was already told by my doctors and my parents at a very young age that eventually, the leg would have to go. Perhaps when I hit my 18th birthday, they said. I actually looked forward to that day because the leg wasn’t a sight to look at: it was big and bloated, it was growing longer that my right leg, and it was painful.

But I never had to wait until I was 18. When I turned 14, it was discovered that the NF was causing the bones of my leg to slowly disintegrate.  When we looked at the X-ray of my foot, the bone structure was literally gone. The doctors then asked if I was willing to have it cut-off already.  Of course, I said yes. I’ll discuss more of the amputation of my leg in another post.

It’s been 22 years now since I’ve had my left leg cut-off just below the knee. When it was cut off, I was happy. I wouldn’t have to feel that sort of pain again or so my parents and I hoped.

Just five years ago, I noticed a slight pain on my right ring finger when I accidentally jammed it somewhere. I didn’t think too much of it after that. Then, I started noticing how sensitive that finger is compared to my other fingers particularly on the part of the fingernail. There’s no way to deny it, the NF has caused numerous nerves to form on my ring finger.

The good thing is the nerves seem to be concentrated on the fingernail area. Good because I really need my fingers in my line of work. I’m a consultant specializing in software/applications programming,  so I need to be able to type in program codes. My touch typing speed would be greatly affected if I ever decide to cut it off. Besides, I really don’t like the idea of having every painful part of my body removed unless that it has become totally useless.

The only downside is I can unconsciously hit the sensitive part of my finger doing the simplest of things: shifting gears in my car, hitting the bottom of the keyboard, hitting the handle of a coffee mug, getting my wallet out of my pants, hitting the rim of my eye glasses when I take a speck out of my eye, washing my hands… well, you get the idea.

Even things like temperature changes causes it to tingle. One time, I wanted a cold shower. My whole body was enjoying the experience but my ring finger was protesting. It even tried convincing my whole hand and my arm to join the protest action. The same thing happened when I wanted a hot shower.

It just really bothers me when it’s painful, but it doesn’t hinder me from doing anything. Do I think that this is will be the last part of my body to experience pain from NF? I hope so, but even if it isn’t, I won’t focus on that.  I’ve learned to deal with it. My wife has learned to deal with it. When I suddenly close my fist and bite my tongue, she’ll take my hand and slowly stroke my ring finger until it feels better. I’m just so lucky to have a loving and understanding wife who goes through all this with me. My parents are always right there too.

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Center of Attention

Posted on July 6, 2009 by ReiVi

Because of neurofibromatosis, my left leg was malformed. It was longer than my right leg and was continuously growing faster. It was one of the first things noticed by my parents before they found out that was related to neurofibromatosis: whenever I walked or ran, there was a good chance that I’d trip over myself. Aside from being longer my left leg was also bigger than the right leg.

From what I understand, the surgery I had when I was four explored the possibility of removing the neurofibromas that were in my leg. I guess, unfortunately, the doctors then found it risky to do anything else and so decided to leave the leg as is.

At first, I used normal shoes. To compensate for my legs’ difference in length, may dad would make a simple lift and insert it in my right shoe. From that time on, I wore shoes ALL THE TIME. I couldn’t wear slippers because there wasn’t any way to put a lift.

I recall an event at school when I was in 1st Grade. We were to do a cultural presentation so we were dressed in a native farmer’s costume. Everyone in the 1st Grade was barefooted, except for me: I was wearing shoes AND socks!

As we march in a parade toward the center of the football field where we were to dance, I overheard a man — one of the other kids parents, I guess — say something to the other parents nearby.

“Hey! Look at that boy. He still has his shoes on,” he said. Then he let out a laugh.

I didn’t think I was even offended at the remark; I even smiled and found it amusing that someone had to state the obvious. At least everyone who’d be watching will easily see me. From a group of about 300-400 1st grade pupils, they’re bound to notice the only guy in shoes.

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Being Brave at Four

Posted on June 29, 2009 by ReiVi

“What is going to happen?” I had wondered to myself.

I was 4-years old and I was going to the hospital operating room. They told me that the doctors were going to take a look at something inside my leg. I was trying my best to put my bravest face on. My parents had assured me that I’ll be asleep while the doctors did their work and everything will be alright when I woke up. Dr. Imamura, my Filipino-Japanese pediatrician, came by my hospital bed and gave me a die-cast miniature bus from Matchbox. That took my mind off worrying a bit. Matchboxes were my favorite toys at the time and the bus would be a great addition to my collection. Dr. Imamura smiled at me and told me to be brave like I’ve always had been whenever she gave me those vaccination shots. She was always so nice and somehow always managed to make me feel safe.

My favorite nurse came in. I can’t remember her name anymore. I tried not to notice the big syringe she held in her hand. Okay, maybe it was a really small one. But for a 4-year-old, every syringe always seems bigger. Anyway, like I said, she was my favorite nurse, so I had to make an impression. I smiled my cutest smile for her. It was time she said. I laid down on my tummy and as I felt her stick the needle in my butt cheek, I tried my best to hold back the tears. I quickly brushed them away with my fingers before anyone else in the room noticed.

A couple of minutes later a couple of guys with a rolling bed — a gurney as I later found out it was called — arrived. But then, I felt that my eyes were getting heavier and heavier. Before I knew it, I was out like a light.

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