Book- Infusion.

(Place on page 323 before paragraph that begins with "Throughout the writing process..").

Two weeks after my visit with Dr Mona, I did have the infusion. Initially, it went well, with no side effects. However, the next morning I could hardly get out of bed. It felt like all 208 of my bones were broken. Bones I had never broken before now hurt. Bones in my face, bones  in my neck and bones  in my fingers all hurt. My back and rib cage area were especially sore. The only relief I had was to lie flat on my back and not move an inch.

I shouldn't complain. I had the infusion at Penn in Valley Forge, in the same department where people go for chemotherapy treatment. Holly and I sat in the lobby with cancer patients and cancer survivors. It was like when Holly was undergoing her radiation treatments a few years ago. Mostly older and middle-aged folks, with a sprinkling of younger people there too, some wearing hats and some not, all waiting their turn. It was a quiet waiting room. Some people read their own paperbacks and some nervously paged over magazines. The Home & Garden  Channel on TV was background noise- nobody was really watching it.

Two people stepped up after their daily treatment and proudly rang the bell near the front of the room, signifying the end of their chemo treatments. The entire room applauded as pictures were taken by family and friends. It was kind of cool how strangers reacted to these brave folks. Everyone was linked together, as someday, their chance to ring the bell would come.

The receptionists called out numbers and names, directing patients to the rooms in the back where their nurse and treatment awaited. Most had been there before, smiling  at the receptionist when their name was called.

"Gregory, number 12!" got our attention and we headed back.

We passed faces we had seen in the lobby, now hooked up to IVs, laying or sitting down  on soft recliners, receiving their treatment.  Some had been there for hours, while others were just beginning or ending. I was lucky. This infusion was a once a year thing, taking no longer than 20 minutes.

A young nurse named Brianna hooked me up to the IV as we talked Eagles football. Funny how an Eagles sweatshirt  can also link total strangers. "Did you watch that game last Sunday?..."

Maybe if I knew how lousy I would feel the next day I would've gotten cold feet.  Drip, drip, drip...the liquid dripped into my veins, this experimental juice that supposedly would make my bones stronger in time. Wouldn't old Dr. Nicholson love this? Treatment for OI had come such a long way.

This wasn't a cure. Far from it. A cure would have to come from the terrific Medical Genetics researchers out there who  are working hard to eliminate OI from our lives. This infusion was simply a way of putting a techno-band-aid on the problem. If we can lessen even one fracture in a life, it's worth it.

So, this treatment was for me, as I hoped I would have less stress fractures in time, but I was also doing this for the OI sufferers to come, when I am long gone. Maybe this experimental juice won't be so experimental down the road, and the next generation will benefit from the tests being done now.

But I must admit, I wasn't thinking of being this noble fellow, helping children with brittle bones in the future, as I stared at my bedroom ceiling. More so, I felt like a guinea pig, feeling stupid for allowing Dr. Mona to talk  me into this treatment, as I lay there in pain. I could almost feel my bones absorbing the fluid, the wetness seeping into my old, thirsty- dry bones.

Just transferring into bed was a challenge.  I had suffered many broken bones in my life, but this felt different, like everything was cracking, snapping and crumbling, my joints and muscles  aching loudly in pain as well.

"Damn," I mumbled to myself. "This sucks." I was angry because there are so few OI survivors who really know what this feels like. I know young doctors like Dr Mona only want to make my life better, and  I would calm down tomorrow and come to that realization. For now, the only thoughts drifting in my mind were things like, " It's easy for her to say, 'Get this done.' or 'Let's try this.' "

 "I'm the only one who knows how much it hurts'" I  whispered as I fell asleep.

I slept for the next 11 hours without moving, wondering if life would ever get back to "normal." Normal for me was pushing my wheelchair pain- free. Normal for me was using my upper body strength to transfer my body into bed or into  the car  from my wheelchair. Normal for me  would not be normal for most people.

When I awoke I felt better. Now the soreness was more in my shoulders and arms, not in my chest or back. Ironically, my legs, which took the brunt of my past fractures for over 60 years, felt just great.

In time I would begin to feel like myself again. Getting another infusion treatment in a year would be a bridge I would cross then. For now, I am happy  to be "normal" once more.